Thinking out Loud

Masquerade of Words up catch up blog, probably more of a ramble….

2012-02-08T07:47:00.001-08:00

Trying to think where to start, Coping: coping on many levels.

There is the practical stuff, learning how to do everyday things by using other parts of your body for strength, eg when vacuuming using an upright machine, we usually push from our backs, but by using the thighs to push with, is much easier on our backs.

Always bend down by bending the knees (unlike me who bent down to pick up a bit of fluff while vacuuming, and didn’t use my knees and simply heard the crack as my back broke yet again)!

When making a bed always use the thighs as much as possible, to push the bed for example.

When organising your kitchen try to make sure that everything you use on a regular basis is in a cupboard you can reach easily, as you don’t want to be reaching/stretching any more than you absolutely have to. Have ovens fitted in where you can use them with ease, and not have to hold a heavy dish and bend down to put it into the oven, or to lift out of it.

In the bathroom try to have handles you can use to hold onto while in the shower, especially good for getting out when you are all wet!!!! And a grip for getting out of a bath. You may not feel you need measures such as these yet, but the day will come when you may not find the essential, but probably find them to be useful.

Again in the kitchen think of the weight of cooking utensils, there are some fabulous cooking pots and casseroles around, but as well as being very expensive, they weight a ton, and that’s before there is any food in them. This may seem very simplistic, but these things can be a real nuisance if you haven’t thought it through. It also really helps when you can do these things for yourself and have to ask for help as infrequently as possible.

Then there is the whole question of how to make those around us as aware as possible to our situation. The problem, as we all know, is how to make people really understand what life is like. How one day we can be quite fine (or at least manage to appear to be!) and the next, after doing nothing ‘wrong’ we can be unable to carry on, unable to function without it being obvious to all. We try to convey to them about the nasty visitations we often get in the night, the one with the baseball bat, cricket bat, truck…… but they find it rather difficult to comprehend. The fact that we can be totally battered, or run over by that truck!, or a shoulder just battered, or a knee, or a foot, lower back, neck, well you know the story. I keep saying that I think the basis is that most people consider illness to be something to get (catch.. whatever) it is diagnosed, treated, then you go through a period of recuperation, and Bobs your uncle! Our reality is we have lots of periods of being very unwell, eventually it is diagnosed – usually years later – we receive treatment and then go into the occasional period of quiet. Sometimes the quiet times can last for years if you manage to get great meds organised (quiet meaning you can continue living a fairly normal life and coping) but then something comes along to stop you in your tracks, whether it’s a new place of pain, whether the meds just stop being so efficient and you need to start all over again to reassess your situation and try a new regime, whatever, but it means that their notion of us being ‘cured’ is shown yet again to be all wrong.

They seem to find it very difficult to accept there is no cure, that there is no overdoing it, doing the wrong thing for us. Yes we probably do more than we should when we can – just cause we can. It doesn’t happen often ok, so go easy on us!! But there is no guarantee doing ‘too much’’ will cause us exceptional pain, sometimes it does, sometimes it doesn’t, and you need to believe us when I say that you should try not to ‘accuse’ us if we end up paying for a full day out, a day full of housework etc. We have gone ahead and done a lot more than our normal after weighing it all up, and balancing up any possible payment against the sense of achievement we are able to enjoy now and then. To have behaved in a normal way!!! We give ourselves a row for doing too much on the various AS sites, but it is done tongue in cheek as we all understand the enjoyment of having the occasion high and low rather than never ending blandness.

Yesterday I was full of the cold feeling miserable with lots of aches etc and a bit fed up. I didn’t get up till later, didn’t have a shower and generally was just a misery, so today feeling a little better I had a lovely long hot shower, washed the hair, got dressed, even put on some red lippie just to cheer myself up. I couldn’t have done much more, but I did enough to feel the difference from the day before, and hopefully tomorrow might be even better , might even get outside!

We have to work with what we have on any given day. We will let you know, though if you are very observant you might find you can see the little signs to guide you into how to deal with us!.

I could ramble on a lot more, but my hands are grumbling now, despite my natty fingerless gloves, so I will finish now.

Result

2012-02-01T05:15:00.000-08:00

Further to my last blog, I have happy news to report, my mum has made the decision regarding her TV,Telephone and Broadband supplier. After so much more than I blogged about, I had to sit her down and discuss it all, which was a good job as I discovered that she had many confusing ideas. Still sorted, and she has this morning (yes that how long it has been going on for) phoned Virgin and they have agreed changes to her package and the adjusted cost, and will all be supplied and set up next month.

I am relieved as I shall probably be able to help her out if she confused with anything as I have Virgin. She is getting a new Tivo box, so I hope it is like my Virgin+ box.

Yesterday I was laid low with major head/eye/neck/shoulder issues, and really unable to cope with much, certainly not a stressful discussion with anyone, so I was able to not have to get too involved.

I have 2 of my Twitter/FB friends visiting for coffee tomorrow morning, I must do my roots this afternoon, but as I am still feeling a little vulnerable being aware that the head ache from yesterday is hovering in the back ground, so I wont attempt to catch up on the outstanding chores. Maybe tonight when OH goes off to work I will get up and run round with hoover and duster and floor mop etc etc, but hey ho, both ladies know my health status, and coming to meet up for the first time (Susan and I have met many times and she has been to my home, but Colette has not met either of us nor been to my home).

I see my eye has a rather large almost bruised look, so will need time to camouflage this and generally make myself presentable, so flat will just have to wait its turn.

Right off to tackle those mousy roots!

Another one of those days

2012-01-25T08:59:00.000-08:00

Hello all it’s been another of those days, and I am writing this in an effort to calm down.

It started with me not sleeping well, and being awake from the back of 3 or so, and reading, still awake when OH came in at 6. Had another coffee, cuddled the cat and read some more, then woke up, had been having a lovely dream too….. settled down to read some more and drifted off…till the phone rang. It was mum, and irate, bad tempered mum. She was having problems with her Virgin TV line, and I had to listen to every single little detail of the phones calls made, time spent hanging one, who she spoke to what they said etc etc. Then she had looked out the window and saw a car parked halfway over her driveway, so she phoned the police and was disgusted by their attitude – she knows what they will say, they say the same thing every time, but I had to listen to it all. Then asked if I was OK, in that way which is more of an accusation than a question, I imagine because I was quite quiet. I said I was just a bit sleepy as I had just woken up, so she decided she had better go then so I could get back to sleep….. yes right!

And that was the pattern for the rest of the day, she phoned Skye, got some info then phoned me to tell me about it, as I asked questions, she got all huffy as she hadn’t asked them, also floored me by announcing she is going to get a laptop. OMG my worst nightmare has come true! My mum used a computer many years ago in a job, but it was a company programme, but she tells me over and over about what happened when you pressed such and such a key…..Will we still be speaking when she gets a laptop??

Then she calls to tell me the name of the man from Skye and he is phoning me in an hour to discuss her needs…. Then a while later she phoned to say she had phoned BT and their man was phoning me too to discuss later. So I rushed off to see what was what on line so I had some back ground knowledge of their offers, though trying to make sense of it all was not easy. Well I was at the stage of looking for something I could just throw very hard and smash, head pounding, back aching from being bent over the laptop all day.

Both men called me back and I got what I considered to be relevant information, and called her back to tell her, I forgot briefly who I was speaking to as I told her I said to the BT man that I had not smoked for a few years but could really do with one, now and he said he understood what I meant, luckily she laughed!!

So at last I can relax, no more book got read, no TV watched, no recorded programmes watched, nothing actually done, just sat over the laptop all day. I love my mum dearly, but it is such hard work trying to explain anything to her, she makes up her mind and that’s that. As an example she talked about buying a new TV for the lounge, I said why, and she slowly reminded me she was going to get rid of Virgin, so she would have to change the TV, I in turn, explained to her, that she had an aerial as well as cable, and if she tried using the TV handset she would see it worked. But she says I want my freeview stations, I explained the TV its self has that (we have the same TV). She was still not believing me, and I explained she could chuck her Virgin box away and she would still have the same , maybe a few less stations but she only uses the basic ones. I think she must have gone and tried it as she never mentioned it again, but just an example of the difficulty. I am having a large glass of pear cider at the moment, and for the 1^st time in a long time, could really enjoy a ciggie, but I know I won’t.

It might be an early night, with more pear cider and my book, as I am absolutely knackered.

Oh well, hope there are no nightmares tonight!!!

Frustration

2012-01-11T03:32:00.000-08:00

It is a subject we have discussed often on the AS sites on FB, friends and family and their understanding of AS (Ankylosing Spondylitis), but one that just goes on and on.

I have mentioned in FB and Twitter that I have been having a difficult week, healthwise, difficulty in walking due to pain and stiffness in hips in particular, and I have mentioned this to mum, downplayed quite a lot, and of course OH sees it.

This morning mum asks how my aches and pains are, I say much the same, she then says even though she has a heavy cold and currently bedridden, we could maybe manage out tomorrow!!! I try to explain that I am having difficulty walking round the flat, and while walking more might well be good for me, I am not happy with the thought of going out and feeling like this outside. Oh she says, what have you been up to be this sore?????

My mother has never ever been able to understand that AS strikes when it strikes, I don’t so anything to cause it to, it isn’t ‘my fault’ it isn’t reacting to anything I have any control over. I can be sore through doing too much, in the same way as we all can, but AS pain is different. It is so difficult trying to explain this yet again without sounding irritated, because then she will be offended. Just like she will tell me to go to my bed and rest and then give me a row when I am up and about, and I have to remind her that too much time in bed is not good as I will stiffen up. Then the next time I haven’t slept well and am tired, she will tell me to get up in case I stiffen up…………

Then, yesterday, OH watching me shuffling around holding onto the wall, does little to help, except carry the cup of coffee, and pop though every half hour to see if I wanted a cuppa. Asks ‘when are you back to the doctor?’ in and exasperated tone. I feel it offends him in some way to see me like that and again feel why do you not understand, you have known me for long enough (20+years). I ask him what he thinks the doc is going to do? He has no idea but thinks I should see him. Again I have to explain, I know what is wrong, I have the painkillers as I have arranged with rheumatologist to get the stronger painkillers to take along with usual ones on occasions like this!

I know I should have more patience, especially as I am aware that so many others have exactly the same issues, but it is so frustrating that no matter what happens with my AS it is initially assumed, a) I have done too much, so my own fault, or b) I am somehow negligent by not rushing off to the doc.

So I shall say, yet again, my favourite word of the moment – BUGGER!!!!!

Liebster Blog Award

2012-01-08T07:28:00.000-08:00

Liebster Blog Award

I am amazed and delighted to have been awarded the Liebster Blog Award by Rosalie at http://tearosesmusings.blogspot.com Rosalie you have made my day, I cannot tell you how much I appreciate this award xxx I hope everyone who reads this will have a read at Tilting at Windmills, the blog. Rosalie can also be found entertaining us on Twitter as @tearose68.

The purpose of the Liebster Blog Award is to spread the love from one small blog ( those with under 200 followers ) to other small blogs . This helps to spread awareness and readership.

Liebster ,in German, means 'dearest' and so, in keeping with the Liebster Award tradition I am going to pass on this award to 5 blogs that I enjoy. Blogs that have inspired me and made me think about the lives of others. Blogs that have entertained me and, I feel, will be of interest to all of you.

To accept the award you must,

1) Link back to the person who gave it and thank them for thinking of you.

2) Post the award to your blog.

3) Give the award to 5 bloggers ( with less than 200 followers ) that you appreciate and value.

4) Leave a comment on the blogs of the five people you have chosen, to let them know.

And here are the five blogs that I have chosen for the award . It was very difficult as there are so many wonderful blogs and I am sorry that I couldn't give you all an award , but each of these is fabulous for many different reasons.

Tabitca on craft and stuff ( and @Tabitca on Twitter ) Tabitca stuggles with health issues, but entertains with the tales of her 2 lovely cats. She is a fabulous lady who when her life changed so much that she is virtually house bound now, took up crafts, her cards are a work of art, and writing a mystery and suspense series of 3 books. The first 2 have been published on Kindle, the first has been taken on by a publishing house and will be out in paper form soon, the third is in the process of being written. She is an inspiration and shows what you can achieve if you try, despite overwhelming odds.

Meloni on Ankylosing Spondylitis Mom struggles with the same health condition I have, however she is also the mom to 2 girls. She writes her blog in order to share her experiences with others with AS, and to educate those who don’t have it. Well worth a read as it does exactly what she intended it do, as well as being very entertaining.

Penny at Penny’s Points is a lovely lady who has health issues, a cat, a new puppy, strong views on many subjects (@pennyessex on Twitter ). Always interesting, never dull, Penny shares with us her experiences as well as her views on whatever she cares enough about to share.

SamT on Ramblings from the Northern Territories 2 and also exists on Twitter as @SamDescartes. I meet up on a regular basis with Susan (Sam) since we chatted on Twitter, and I have always read her blogs. There can about whatever is current with her, from families, to her wee doggie and various cats, to the trials of working as a teacher, to the trials of being the carer of her mother. Always interesting.

Cynthia on I Am Not Random, But I Do Have Random Thoughts is another lady with health issues, but her blog is just what it says on the packet. You never know what she might be chatting about, or the form it will take.

So, there are, my Top Five Bloggers, the ones I read on a regular basis. It was difficult to choose only 5. I hope some new readers might give them a go and enjoy them as I do.

Rambling

2012-01-06T09:18:00.000-08:00

I have not had much to say on my blog for a wee while, so as a start to the New Year, I feel I should make more of an effort.

It can be difficult sometimes to write a blog when all your thoughts are of a negative variety, or you have just really been up to nothing much. However, I would like to take the opportunity to describe one day this week when I was feeling particularly gloomy. I woke that morning, and I just couldn’t be bothered about anything. I felt down, depressed, I was a bit sore, was trying to deal with a new pain and I was worrying about 2 of my close friends on FB who were having a tough time and waiting for news. I didn’t want to just disappear, so simply said I wouldn’t be around much that day, I did describe myself at one point as a torn faced whatever, and this really captures it all.

However, I did not bank on my FB friends, I received so many lovely messages, offers to sort out the person who might have upset me, people I don’t normally converse with, we are just members of same groups, felt compelled to contact me. It was quiet overwhelming and did reduce me to tears once or twice, that people would take the time to actually cheer me up.

I read an article yesterday by a doctor who was commenting on the fact that despite the bad press given to the likes of FB, until he became ill and housebound, he did not realise how much belonging to FB would change his life. He found lots of people to chat to with common interests as well as support groups for others with his condition. He described how he felt much more fulfilled and as a member of the medical profession, what a wealth of experience, information and knowledge was available to him on FB. He found he learned so much more about his illness and also about the patient / doctor relationship. Yes, you have to try to remember that not everyone will be genuine, real or very nice, but then that is the same in ‘real’ life too.

I used to spend much more time on Twitter, but I have found that on FB I have longer conversations and therefore gotten to know people better, and have formed such wonderful friendships. I still pop back and forth to Twitter all the time as there are people there that I would not want to lose contact with, and want to know what is happening in their lives.

I think this time of year is such a dull dreary time, if you have had a fabulous Christmas/New Year, then you are feeling flat as it is now just back to normal, and of course January is such a long month between salaries, and the debts are becoming real. If, on the other hand, you haven’t had a great time over the holidays, it is just more dark and cold days to survive till Spring arrives, an endless feeling time. Many people like me don’t get out much with the weather, whether it is the cold or bad conditions under foot making walking even more off putting. I have to travel by bus or taxi, so of course buses are daunting as I have to have a min of 3 changes of buses in each direction to get to the shopping centre I prefer to go to, which in cold windy bus stops ……. But if I get a taxi, it costs a fortune, so needs to be considered carefully.

It does feel like hibernation as I appear to be getting out 1 day a week these days, still at least the shops are getting quieter as Christmas and the first flush is off the sales, plus almost everyone is back working now, hear the ‘Grumpy Old Woman sneaking in there??

I cheered myself up in the usual way yesterday by buying (or at least mum buying for me as she saw the ‘look’) as well as some purple undies, obviously not liked by others as they were so reduced in price, and purple….. but also a pink bag. I know, a pink bag you say, but I have several pairs of pink shoes. I like surprising things like pink shoes, again bought for ridiculous prices in sales as not a popular colour.

I don’t really care of it is winter, I will carry my own little bit of fun and lightness with me. I tend to wear a lot of black, purple and grey so pink is perfect, and clashes beautifully with my red hair!!

Well I have rambled on rather a lot, but I would also like to add a list of my current reasons to be grateful, as suggested by one of my Twitter friends:

My online family for caring enough to make contact when I needed it

My pink cashmere hoodie bought for less than half price (will match the bag and shoes!) and is so soft and cosy.

The fact that I can see the changes and additions to my home helping to change it into the home I want, which is nice as I spend so much of my time here!

The days may be dreicht, but there is something very enjoyable and guilt free about curling up with a good book, or DVD when it is dark and nasty outside.

Happy New Year to you all xxx

Job Well Done

2011-12-28T08:03:00.001-08:00

Heading for the New Year does bring out that ‘clear out the old year ready for the new one’ feeling, whether I like it or not!.

I have found myself going through various cupboards and drawers this week and clearing/tidying, but this afternoon was the hard one. The one I have been building up to, going through the accumulated drawers of makeup.

They are forever reminding us on TV programmes to check the shelf life of makeup, and I must say I was a bit worried when I threw out several eye shadows which had a suggested shelf life of 6 months, and I can count back 8 years or so to buying the!. So I took a deep breath and started, eye shadows, tossed out, blushers – out, bronzers – out, lipsticks – out, foundations – out. Then I started on the creams and potions, and any of them opened that I hadn’t used in some time - out!!

At the end I had a large carrier bag full, less clutter on my dressing table, and a feeling of having accomplished something. I must get OH to take the rubbish out soon, though in case I have a wee look - just to check…

Then, of course, I realised, I will need to replace some of it, not too much, of course. I mean I don’t need 4 purple eye shadows, or 4 mascaras on the go. How many blushers do you need??? Only a couple especially as we now can see how long they are to last, before going in the bin.

So job well done - now I just need to wash all my brushes to complete the task. Unfortunately the last time I coloured my hair I put something down on the dressing table and quite badly marked with red blobs, but I found an interesting looking dark lace runner, like spiders web patterns. So I have ordered that which will hide the marks and add some interest too I hope.

I had also ordered for mum, a necklace display thingy. All the ones we have seen are either too wobbly when laden with necklaces, or not tall enough for the long necklaces and pendants. I found this one in eBay, and after asking questions of the firm, ordered one. It came today so I have hung my stuff on it to see how it fares. So far so good. It looks lovely and takes up far less space than my old one, and it feels secure. All being well, mum will take this one home with her on Sunday and I will order another one for me, maybe 2 as I think it would look balanced on my unit with 2 of them and hold necklace’s better.

Large bottle of pear cider now, I think for job well done.

Just one of those days

2011-11-26T11:40:00.000-08:00

You know those kind of days when you knew you should never have gotten out of bed? Today was one of those.

I woke up feeling pretty yucky, tired, upset tum, sore eye etc etc, however had to stay awake, although OH was going out for shopping and some for mum, I have to prepare the list – he can buy but never notices anything so cannot be trusted to get what is needed – so list made, but despite being desperate for a cuppa, as he was sleeping, decided to wait till he was awake. He had after all come in from work at 6, and was getting up again at 8.30.

So got OH all organised, cat came for cuddle, I dozed, all pretty nice I wanted to have a shower and wash my hair, so I thought I will change the bed, so I can get into a clean nightie and later a clean me into clean bed. The duvet cover was brought out, and was very cold, in fact I wasn’t sure it wasn’t still damp. I went looking for another, and found an old cover that I love, but it’s very hard to wash and iron as it is heavily embroidered denim. Never mind, I thought, it will be nice to use it. I forgot what a sod it is to get on as it buttons, but the buttons are half way down the front of the cover, so all usual rules for stuffing a duvet into a cover are no use. Still I struggled on, and eventually, with the air a little blue, it was done, and all looking rather nice.

So my lazy day now had me putting a wash on, and then had to start on the dishes left for me. In due course managed bath and hair wash, got organised and into fresh nightie. Ok not too bad, tum still not right, head banging away and eye throbbing, but cuppa and pain pills and I’ll be OK I thought. OH got home, and went on and on about something on the list, and when I eventually asked why there was such a bloody problem with an everyday thng like that, it appeared he had decided it was something else…..showed him the list, he stomped off.

Washing done, so all bedding into dryer, and towels etc made up another load. Had a wee cup of soup to keep me going, read a few papers and then decided to have my meal early. When sorting it out, put soup that I made yesterday, on to heat through and added the lentils, left it simmering when I took my meal through. Then a smelt the burning, the soup was burnt, pan ruined, place stinking. All my own fault, couldn’t blame anyone else. Disposed of soup, left the pan to soak in case it was salvageable, and opened the window a little. A wee while later went through and window wide open, despite trying everything I could, it was impossible for me to close, it so I had to go off to get dressed to go out, but in the meantime OH woke up to go to the loo, so he managed to close it for me.

Tired, sore, fed up, everything that could go wrong today has, so I should have stayed in my bed, I really should have.

Never mind, tomorrow can only be better ……….

One of those daysI

2011-10-25T09:36:00.000-07:00

I have been going through a period of not sleeping well, so although I had dentist today, not till 2.10. Which was just as well as I did the usual last night, fighting to stay awake till OH up and getting ready for his work, then....wide awake!. Still sitting watching recorded programmes at 2.30..

Able to have a long lie in.but felt the need to get up and on with some of the chores waiting for me. However always having to remember about the dentist. I had gathered some books I didn't want to keep to hand into the charity book shop near the dentist, however as the pile grew, OH took pity and took them up for me, so all I had to do was pop in on the way home to look for any books (!)

Well I arrived at the dentist, and without going into it all, I had no appointment, my details were correct per the details I was given, but different ones put in the computer. End result, no one available to see me so I have to go back in a few weeks. I was very pleasant, neither lady there made the booking, so no point of taking it out on them. So off to the charity shop, feeling very fed up as my whole day was programmed round the appointment.

Bought 3 books and a book carrier thingy in purple, rather handy as your book fits in it with a pen, a ribbon to keep your page, and even a wee handle on the spine, if you wanted to carry it that way. Home, and there waiting for me was my new GHD straighteners. Bliss. Mine had dies, but as they were in excess of 10 years old, I cannot complain. In the meantime, I had looked out all old hair tongs etc, but you don't realise how good they are till you don't have them!!! So all excited I unpacked them and plugged them in.So lovely all new and extra bits, like the beep when heat reached. I had a quick shock of them, then switched them off, cleaned make up off, and calmly reached over o move them by grabbing the hot bit!!!!!! Thumb should have been three time the size and red and throbbing by the way it felt, ran for cooling gel......

Feeling a bit fed up with my day and then put my first ever Weighwatcher meal in the oven. Having lost a reasonable amount of weight on my slow and steady eating plan, I am still keen to be as good as I can be, but after the day I had been having., who knew! However, I can say with honesty I really enjoyed it and even more so as it was £2 in sale in supermarket!!!

Hopefully tomorrow should be a better day, need to get some chores out they way before the new boiler work starts on Thursday - hope fully all the thongs that are going to go wrong this week have already happened!! Early night coming up, with large scotch I think.......

For M O W : Self Esteem

2011-10-06T12:08:00.000-07:00

I find this quite a difficult one, probably I think, because itis!

I can tell myself all the right things, gee myself up to go out,and feel great, but when I meet people, new or old, I can often be found tojust quietly withdraw. Especially with a group of people, I find I just don't feel confident in a crowd any longer. I do find myself feeling so out of theloop, boring, nothing to talk about and so on.

After spending my whole life working, suddenly because of my circumstances, my world has shrunk so much. While I will never miss the job, I do miss the mixing with people, the social side to working. I was mixing with all sorts of people, all sorts of ages and backgrounds. I chatted each day to all sorts of people, tenants, other departments, tradesmen. While these days I can go days with only seeing my OH briefly.Apart from that it’s me, the cats, the TV and the laptop.

I am not too bad, one on one, as I like to think I am a good listener, but in a crowd, I pull on my invisibility cloak. Don’t get me wrong, I don’t feel I am inferior as such, I just have little to say, because of this small, shrinking world I now inhabit.

I can be walkingaround, say in the shopping centre, leaning on a trolley and looking in thewindows, then see my reflection……..and it often will really knock the wind frommy sails. I don’t mean that in a narcissistic way, just that I still think ofmyself as I was, 6 inches taller, a few stone lighter and with a straight spine.Even after all these years the reality can still take my breath away, andobviously affects my self-esteem. Any self-confidence I had mustered in orderto get out, goes straight out the window!

It can become such a catch 22 situation, the less you do it, theless you want to do it, the less you socialise, the more difficult it is. Ican’t see an answer to this for me, as my circle gets ever smaller, so do theopportunities.

However, I shall continue to strive to get out and about, to tryand have a little more confidence, the poster below I feel is whollyappropriate to me and others in similar situations, but it is not easy, but then why should we expect to be?

More Reasons to be cheerful

2011-10-06T10:28:00.000-07:00

Let’s think what comes to mind this time for reasons to becheerful, at this time of year I do like a cool, but bright day, when I canwear a long jumper and big woollycardigan, big scarf round my neck (I find this is the best place) and cosygloves.

Another reason to be cheerful, is on a dark, wet, windy day,being able to snuggle by the fire, with the cats and a good book, or DVD, andfeel no guilt.

My GHD hair straighteners: I don’t need to straighten my hair asit’s straight as anything, but it’s also flat as a pancake, so a quick fewflicks with them and add some product, and it looks like I have much thicker and curvier hair. I dohave a spare pair (just cheap ones) as I would be totally lost without them.

My drawer and cupboard and bags full of scarves of all sizes,shapes, colours. I love my scarves, plain outfit, boring outfit, find a scarfto change the look, or more often with several making all different looks tosuit the mood I am in.

My jewellery collection. I feel naked without my jewellery, fromthe cheapest of the cheap upwards. I can spend a lovely afternoon, getting allnecklaces off the stand and out the drawers etc, cleaning, deciding what is invogue, what has to go away and what will stay on show, then arrange in colourorder. Same with bracelets and earrings. Again lift and outfit, and my mood bychanging the jewellery, good stuff mixed with cheap whatever. I have enclosed a couple of photos of a few bits and bobs.

And on one of these cool autumn/winter nights there is nothing to beat home made soup.

On reflexion I quite like this time of year as long as dry and not too windy!!

Need:

2011-10-05T05:08:00.000-07:00

What do I need, I think in fairness this isn’t too complicatedat all. All the basic stuff needed by us all, enough money to not have to worrytoo much each month, sufficient clothes to wear, food on the table etc etc.

Then the other stuff, I must have books around me, music tolisten to, people to talk to (mainly on line these days). When I can, I need toget out of the flat, to stretch my legs, to walk, to look in shops, smile atpeople, and feel like I am still part of the human race. Plus it is the onlyform of exercise I can do.

I also need a little help now and then, nothing major, but justsometimes, if those around me would simply think ahead a little. I do this whenI am with my mum, I try to observe what she is doing, and often take over doingsomething I know she will have difficult doing, before she realises that I havedone so. No big fanfare LET ME HELP YOU, just quietly assisting her. I oftenneed some help, and at times, if I am honest I actually really grudge having toask for it. I wander why no one has thought to themselves that what I am aboutto do will be difficult for me and so just take over quietly. In fairnessthough, I think I am more attuned to this simply because of my own situation,and that is why I am able to do it with my mum. So a little subtle help, notstuffed down my throat, or ‘I won’t bother as you will want to do it yourself,’would be much appreciated.

A lot of that comes from the ‘not looking sick’ situation. If Ilooked pale and wan and in a chair or in plaster or a bandage wrapped round myhead, people would make more of an effort. I know when I am in the supermarket,holding onto the trolley, I can gaze at something on the top shelf, and I getno offers of help. If I walk from the trolley using my stick I find it easierto ask for help and people rarely look upset at being asked.

Probably also is the fact that having a chronic illness, peopleget used to thinking of you in one way and they don’t change that mind-set.They begin to accept that you rarely go out, so never ask, etc. You make yourbed and find yourself stranded there!

I need to feel worthwhile and not just a useless, nearlyhousebound, disabled boring person, because I don’t go out, doesn’t mean Imight not like to, with a little assistance. But looking ok, and the illnessgoing on and on and on and on, being taken for granted sets in, invisibilitysets in, and assumptions take root.

I need more of a life than I have. I need to feel alive, I knowI am sliding into becoming the old woman with the cats and the books and theTV, and that would be all too easy. I realise that mum is getting nearer to thestage when she will need more help, and I dread it, as does she. What use willI be then? But I will NEED to find strength and energy from somewhere as thereis only us, no big family to lean on, or big circle of friends anymore.

I need to try and get as well as I can be , lose some weight tohelp with this endeavour, as mum would love to go to the USA one more time. Goto her favourite place, Scottsdale, and as I am at the moment I would be a realhindrance. You might think this is more of a ‘wish’ than a ‘need’, but we all ‘need’something to strive for. Or we would just stay in bed!!

There is plenty that Iwant – but that is another story!!

Reasons to be Cheerful

2011-09-21T13:15:00.000-07:00

As started by Teasrose68 at Tilting at Windmills

I was busy trying to think what I could come up with. There werea couple of obvious ones, for me. When Milo (cat) wakes me up in the middle ofthe night just to say hello, give me a kiss and snuggle in.

When I tidy out my wardrobe or jewellery boxes and come uponsomething I forgot I had, such a lovely surprise.

Then today my friend Tabitca had her second novel published onKindle as an e book, and she had put such a lovely mention of me in it. Fairwarmed my heart!

Later in the day I had an e mail from a lady who had come acrossmy blogs some time ago, had read both lots and asked me to read her book abouther mother’s illness, RA. She had also seen the article I had done on my storywith AS, she had used this as a basis for her blog, which she chose do about mylife. I was very touched by that.

Then my friend Cookie left such a super commenton the blog.

I am left feeling a very ……I am not sure whatadjective to use here, happy, touched, but certainly a reason to be cheerful!

Now this is what I call service

2011-09-20T08:01:00.000-07:00

After my couple of situations recently with what I consider to be poor customer care, today reminded me what of what it should be like.

A couple of weeks ago, I bought a pack of hangers from Lakeland. I loved the look of them, animal print, and they have a bar for trousers, plus the material they are made of is not smooth so clothes won't fall off easily. I got them home, admired them and then used them all. 2 days ago the one holding a lightweight knitted tunic top, collapsed and I found the metal hook in place, but the top and hanger on the floor, the next day the same thing with a pair of lightweight joggers, with a vest! I was displeased and so wrote a review pointing out the plus points but that might be safer to use them for only the lightest items in your wardrobe.

Within a couple of hours I had a phone call from Lakeland. The lady started out by apologising for the inconvenience to me, She explained that although they were a new item, they had sold thousands of sets and had received no complaints, however there might have simply been a bad batch. But would I please accept a replacement set, and would I be prepared to use them then report back if I had any more problems. As she explained, they could not put it right if they don't know about it, and thanked me for taking the time to make them aware. She also explained they had not published my review, but were happy do so if I wanted them to. I said no, that I would try the new set, and let them know by a review, how they are.

What a difference.

Mini blog

2011-09-16T04:12:00.000-07:00

In my last blog on Wednesday, one of my moans was about the lack of service from the Nationwide, and I ranted about my phone call on the previous day (13th) which ended up with the lovely lady I was speaking to saying she would get it sorted out, but I would have a further 7-10 days before my transaction (closure of account and cheque for the closing balance) would be processed.

Today I received two letters, first contained a statement, showing a closing balance of £00.00, the second, was a stock letter, undated, with a cheque. Cheque dated 13th!!!
So the Nationwide do have some staff who can be pleasant and efficient, such a pity they are not in my branch!

That has made my day.

Angry old woman

2011-09-14T08:35:00.000-07:00

Ever felt like something was conspiring against you? I amnormally a reasonably calm, outgoing kinda gal, but the last couple of days………….

Firstly, I had had a disagreement with a bank. I had a current account, and a savings account with them for several years. The funds in the current account werenever used as my main current account; it was an account for holidays, or unexpectedexpenses. I went to buy my new laptop a couple of months ago and had the embarrassmentof having the card turned down. On investigation, I realised the card was outof date, and no new card had been sent out. I phoned the bank,spoke to man in Basildon), and the manchecked the computer and confirmed that the account had no new card issuedbecause of lack of use of the account, I checked the card for the small savings account, no new card had been issued for that for thesame reason, and I had a credit card, that account had been cancelled due to lack ofuse. I had received no communication from the bank regarding any of this.

He agreed to issue me with a new debit card, together with a newcard for the savings account (and PIN as I had long forgotten it), but nothingcould be done re the credit card, I would need to apply for a new one!)

I called into the branch a few weeks later, as I had received thenew debit card, but nothing in respect of the savings account. At the meeting,I was informed that a letter had been issued in respectof the credit card, as this is required by law. I explained I had no suchletter. But no communication regarding the decision to not issue new cards for the 2 account was issued by them as this is not their policy! I inquired re the new card and PIN for the savings, well I was told, they have allbeen issued, did I have a problem with my postman!!!!!

I explained that I was concerned at the complete lack of serviceand communication. The money in the current account is my money, but they hadbasically cut me off from my funds, except by coming into the branch. Nocomment was made except “not their policy!!” I then discussed the saving account, againtold I must have a problem with my postman, “well” says I, “in that case I hadbetter close the account as someone might have the new card and the new PIN.”The account was closed and cash collected. So I returned to the currentaccount, I would like £600 cash now, oh no, I was told £500 max. That was itfor me, I told her to give me £500 and arrange to have the account closed and acheque for the balance issued to me. She collected the cash, then told me I couldn’tclose the account and get a cheque for the balance the same day…………………… so Ipost dated the required forms for the next day.

Last week I got a page of a statement showing the withdrawal andthe current balance, so I got on the phone. I had to try over and over before Imanaged to get a person to speak to, she was in an English office somewhere or other,I explained- she looked- hesitated then went off to check something, thenhad to phone head office, then had to phone Edinburgh. Guess what, no post-datedform anywhere, account not closed, nothing had been done, the form must havebeen lost in the post! Would I pop into town again, to sign forms? I had tocount to 10 before saying, no – no way – I have mobility issues and I had nointention of struggling into town yet again, to sort out something that wasn’tmy fault. They agreed to accept my phone request, combined with the confirmationfrom the branch, so will arrange it for me, probably around another 2 weeks.

I wander what would have happened if 1) I had no other fundsavailable to use initially when the card was rejected, and 2) If I wasdesperate for that cash, if I was relying on it? Tellingly I received no apology about anything in the branch.

Today I went to the optician so they could adjust my specs, theywere loose and moving around my face, not good for my eyes I thought, as thelens is set up (they are variofocals) inline with my eyes, and if the position of the frame is wrong I won’t be seeingproperly! They came up with so many excuses that I nearly lost my temper,eventually the optician checked my eyes and confirmed the prescription was ok,but the specs were too wide at the bridge which made them fall down my nose anddig into my cheeks and meant that my eyes were not aligned properly with the lens. Soafter an hour or so in there, I chose new frames. I tried to explain that I thought the trained people who assist you with selecting your new frames actually did more than simply fill in the form, abut apparently not, they will sell you anything! I told them about a previous optician, where I had been refused frames, as they were not right for me would be uncomfortable! and the bridge was too wide!! I was told they were trained to fit specs and make sure the customer was advised and guided to make sure they were happy with their new specs. He said they would take that on board, then the girl who came to help me pick the new frames, just stood saying which she like and which she didn't, I asked her a couple of times re shape, fit, bridge.

Hot tired and needing to get home and the feet up after all that, but no, mumneeded chocolate biscuits, so off we set back into the shopping centre. Backyet again for a bus, not long to wait, this was good. I have to change busesand have my usual route planned out so I have as short a distance as possibleto walk. The stop I get off at is after a particularly twisty and bumpy bit of road,so I got my bags on seats, gathered my stick, pressed the buzzer, checked thesign was lit up, and held on for dear life, as I bent to pick up my bags andturned round – what did I see?? My bus stop as we sailed past it!! So I had toget off at the next stop, which meant a wee walk, but with the way I wasfeeling it could just as well have been a mile.OH met me at the bus top at hometo take all the bags, I hobbled across the road. Feet swollen, hands swollen,head thumping and thinking if one more person annoys me today………. So intonightie, make up off, coffee drunk, feeling a little more human, but thank GodI am staying in tomorrow!!!

Blog for MOW - Symptoms of AS

2011-09-12T00:45:00.000-07:00

I could write down a list, how boring would that be? How longwould that be? But that would achieve little. Those of us who have AS and havetalked to others will have heard them all anyway.

There is also the fact that there are so many symptoms, and weare all so different, perhaps part of the reason for the problems in diagnosis?The main symptoms in common, I suggest, is the lower back pain, especially inthe morning, and the extreme fatigue. Both hugely debilitating in our lives andwalking like a pregnant duck while one hand holds the small of your back andthe other clutches at the wall, is so not a good look! But after that we areall different, and we are different on a day to day basis, which again, Isuggest, is why those closest to us find it hard sometimes to understand.They think they have it all figured out and know how to help them something elsehappens!

It can attack so many places in our body anytime, It can be anywhere front joints to eyes, from feet to neck, from hands to heart,and there is no consistency, no realpattern, there are many many parts of our bodies that can be affected and canhurt and ache and scream with the pain, but we have no idea or control of, when,or indeed, if, that will happen. We can go for years with a certain part of ourbody unaffected - say neck- and then suddenly find we can’t move it because ofthe muscle spasms that make us gasp, for weeks we can have physiotherapy, orhot/cold treatment, adjust medication, then one day it is gone! It might neverreturn, it might return on a regular basis, it might just move in and stay put.

It is no wander that those close to us can become confused, butdoctors should know better they are trained after all, right? Therheumatologists have spent years studying diseases like AS right?

They will understand that we are not being troublesome, orawkward, or confused- it is the nature of the disease- right? Right?

9/11/2001

2011-09-11T08:32:00.000-07:00

This was the first year I had been to the USA, and mum and I arrived eventually in Chicago airport. We had to try and follow the signs to the luggage collection point, which we did, then to try and find our way to the appropriate departure area for the flight on to Nashville. Some how or other my mum managed to get out of the airport and as we waved to each other through the glass doors, a very pleasant security man (!) came and adjusted the doors so they could be opened to let mum back in, to save her having to walk some distance, he also directed us to the platforms in order to catch the train to our departure gate. While waiting...and waiting, and the crowed growing bigger and bigger and us realising we were not that sure which side we should be on, it was announced there was a problem and the trains weren't running, due a problem on the line!!!!!! They said it wouldn't be long so we decided to wait it out as we had plenty of time for our connection, and it gave us time to figure out which side of the platform etc. After quite a while the train appeared, there wasn't a full service, but we managed to get on and off and get to the departure lounge....where we discovered there was a problem with our plane!!!

We were om a touring holiday of the music of the South, and everyone was meeting in Nashville that evening, however many of us were arriving in the departure area all the time from flights from the UK. We got together, appointed a spokesperson who dealt with the airport rep and eventually a coach arrived to take us to a hotel for the night.Well we thought, what a start! A quiet night was spent in the hotel as we all recovered and had an early night as we were on the 1st flight in the morning.

All went well the next morning, arrived at airport, plane was ok, on time, and we all got seats. We arrived in Nashville and the Tour Escort was waiting for us, she seemed a little put out by our late arrival, which I felt was a little unfair, to say the least. On arrival we were given out room keys and directions, then the rep told us we had an hour to get settled and have the breakfast which was waiting for us, before the coach arrived to take us on the tour of Nashville. You can imagine we all ran around like demented creatures, and arrived at the front door breathless but ready. Then the rep informed us the bus had broken down, and would be an hour late....we were seriously starting to get a little anxious for the holiday by now.

The coach duly arrived and we did the tour of town, into the Country and Western Hall of Fame, saw all the well known places, on arrival back at the hotel our rep told us it was the Grand Ole Oprey that evening, and it was an early start so we had.....20 minutes to get ready and back for the coach. Despite the rush, it was fabulous, really enjoyed it and saw several well kent faces there. On the coach going back we were hungry as we hadn't eaten since breakfast, and the coach driver said he could drop anyone off if they wanted to. We hopped off at the White Horse Saloon, and had a couple of drinks, something to eat and watched the line dancing. We knew the hotel wasn't far so we wandered out to try to get a cab. Well no one had told us it was the local college football derby, and the roads were all closed off, it was chaos, we finally saw a cab, and climbed in, the driver said the man we came across asleep in the corner was there first - so we would take him first then he would take us home.We explained the hotel was at the top of the hill just in front of us, it was one of a popular chain. After a grand tour of downtown Nashville and ending up in the Gay district at a club, we woke the guy up who staggered out the cab and away. While on route to our hotel I looked up to see the signs for Memphis,so asked the driver if we were going in the right direction, I forgot to mention he was from Iran and had poor english, eventually we got back to the hotel, almost via Memphis, but he only charged us $5 as he got the directions wrong and the other passenger gave him much too much.

The next morning was a very early start, we were on our way to Branson Missouri. That was a lovely couple of days, at night we went to Andy Williams Theatre, where he was playing that night with Glenn Campbell . It was terrific, neither were people I would have chosen to go see, but I really enjoyed them. We also had a trip out on a Duck, the vehicle that runs on the ground then right into the water!

The next change of venue was to go to Memphis, we set off on the morning of 9/11. We stopped at a McDonald's for coffee, when a trucker came in and told us the news. There was a stunned silence then our driver rushed in to tell us the 2nd plane had just hit the Twin Towers. What news, we were all shocked to the core. The mood obviously was very somber. We headed off again, and were going to pop into the town in Arkansas where President Clinton was from, but the National Guard had a blockade up, we carried on to Memphis, and we were going to the Peabody Hotel - the one with the ducks, but there had been a gas leak so the whole area was condoned off, so we just went straight to our hotel, where we all stopped in the lounge and just sat and watched the TV to see what was happening, and to get up to date with all that happened during the day. We had a wander down Beale street but no one was in the mood to party! next day we were off to Gracelands for the day, on route, one of my fillings fell out as the rep passed round her boiled sweets. She managed to get an appointment for me at a dentist for the next morning.

The next move was on the train to Lafayette, the coach picked us up when we arrived, it was an interesting journey as the train was full of people trying to make their way home or whatever as there were no planes. We arrived hot and tired, to find the hotel had a lot of other visitors - cockroaches, huge cockroaches!! Had several changes of room before we found a vacant one!! We went out at night to a restaurant up in the hills for some great music and dancing, Cajun style!

Next and last stop was to New Orleans. We had a beautiful hotel in a central location, near Canal Street and the French Quarter, we had a wander all through the French quarter to Jackson Square, and over to The Cafe du Monde for coffee and beignets. I loved it apart from the humidity, I was soaked, you would have thought I had had a shower, clothes dripping, hair stuck to scalp. We were out on a boat to see some gators, went out on the river boats for a jazz evening, wonderful, despite all that was going on at that time, and having no idea how we were going to get home.

As it turned out, mum and I had no problems, our flight was on , though many of our group had to be taken by bus to other airports in order to make connecting flights. The only obvious signs of what had happened were the security men with dogs, and armed police on the the flight.

That is a brief history of my first trip to the USA, so much went wrong on this holiday at all levels, however, we loved seeing the country, loved the South, being on a coach trip meant we were taken to so many places, and told the history of each place we visited. Hearing and seeing all the footage of the Tragic events at the moment caused me to think back about the holiday, and the hours we spent each evening watching what was happening which was seemed so much more frightening being away from home.

It didn't put us off thought, the next year we went on another coach trip following Route 66. This week starts a TV programme by Billy Connolly of his travels along this road, so it will be essential viewing and more memories stirred.

Friday again

2011-09-09T07:01:00.000-07:00

Yes It’s Friday again, I don’t get the same excitement I used toget when I worked about Fridays. Probably because the weekend doesn’t mean thesame when you aren’t working! Though I still luxuriate in a Monday morning longlie, never get tired of it!!

After a busy week with hospitals and shopping with mother, I wasfeeling rather unwell and tired - no change that absolutely exhausted! Maybe theblood pressure has something to do with that. This morning I was wakened duringhe night by Milo to tell me it was raining and he was wet and would I pleasedry him off so he could snuggle in with me…..so I did, and we did, back to landof nod, the at 6.30 up for cuppa, settled with book and Milo comes back in,again wet, dried him off and we snuggled, for a couple of hours. It was verynice, but boy was I tired, that real eyes keep closing no matter how hard youtry to stay awake.

Then suddenly it is after 10, ok more coffee, switch on laptopand say hello to a few people. I remember I had defrosted sausages overnight& bought the veggies to make a casserole, so up I got and got peeling andscraping and chopping, casserole simmering, slow cooker looked out and switchedon, casserole decanted. All dishes cleared and washed, then see my beddinglying all dry and folded but very wrinkled, so out comes the ironing board, andsee again the untidy cupboard, so everything hauled out and put back in a tidyfashion, a few bits and pieces including 2 old mops and a light shade poppedinto a pile to go out. Eventually ironing started, and yet again I wander why Iinsist on getting king size bedding for my double bed….. right where was I, ironing folded taken through to bedroom to be put away when cooled down, ironingboard etc put away, see hoover, ok quick run round flat, then large glass ofcold water and a face cloth as by now I am dripping, into eyes everywhere, had a seatand coffee too.

Why I am I sitting here like this when OH is playing on hiscomputer….try to stay calm as thinking again about BP……………..

Found strange bag while in cupboard, and discovered variousweights and stretchy band things I had toyed with a few years ago when I lost alot of weight. So once I cooled/calmed down had a look, must try to organise aprogramme of exercises. I can’t do much for safety sake with my health issues,but if I can do some upper body strengthening exercises done sitting down,would help to tone up those wings and of course would be using up calories. Ihave lovely pink weights to put on wrists and purple ones to hold in hand, nottoo heavy even both together but a useful weight for me, though there are alsoproper big chunky metal weights, but they can be left for a while yet. Then Ifound the rubber stretchy band with handles on the end, will need to figure outwhat to with them!!

I am sitting here now going through my V+ box trying to watchwhat I can as it is “critical” don’t want to have to clear any films, so aboutto get a coffee and watch the first of 2 Mount Pleasant’s and see if they appealto me. I am still in nightie, I went through a wee while ago and cleaned sometatties and chopped them before adding to sausage casserole. OH eats at adifferent time to me, even though he is on holiday this week he sticks to hisusual timetable so his dinner is at around 10-11 at night!! At least when Imake something like this in the slow cooker, I can have mine when I want to andits all in the one pot, meat, tatties and veggies, and he can just ladle onto aplate later and microwave.

That’s my ramble for today, I am now on strike from everythingfor the rest of the day – at least x

Social Outings

2011-09-05T04:04:00.000-07:00

Those two words are such a mine field social outings – I have avague memory of cinema, of theatre, of parties…………

Let’s start at the beginning;

can we plan them? …….only if your friends truly do understandthe problems and are prepared for possible last minute cancellations, so that’swhen I usually think maybe easier not to bother than risk being a nuisance.

Decision made to make a date to go out, but before we canfinalise the arrangements we need to know: how to get there, and home again. Sowe have to be certain that we can easily get a taxi to get home later, and is abus possible to get there, or will that need to be a taxi too? All adds to thecost! Also adds to the fatigue if there is much travelling. If someone offersto pick you up, will they realise you need to get in a front seat and haveplenty of leg room. Can’t bend and twist to get in back, and if someone in theback they had better have short legs, or maybe just not bother as being such anuisance.

If like me, you have had to retire from working, then the costof any outing is an important factor now. Taxis can add a huge amount, cinemas,theatres, are all expensive these days, so an outing which you may not evenenjoy can make a considerable dent in your finances, maybe just not botherthen.

When we get there, depending on where we are going, are weguaranteed a seat? Is it a seat we will be comfortable to sit in for theevening? Is it one we will be able to get out of with any degree of elegance?You can, of course then be thought of as stand offish if you manage to get acomfy seat and don’t mingle- I used to joke that I needed my throne so everyonecould come to me! But then again maybe just not bother instead of being anuisance.

Assuming we will have a drink, will it be in a glass we candrink from? I have fused neck and little movement so the glass is important –or just give me a straw!! A champagneflute for example, is a nightmare….. So if it’s a party with everyone standingwith a champagne flute and a plate with nibbles. I’d better not go just in caseI am a nuisance.

What to wear? I don’t have many “Dressy” clothes these days as I don’t go out, but depending onwhat the outing is for will dictate what to wear to be comfy, to allow forsitting for a long time, to allow for some inelegant getting out of chairs etcthen again, maybe not bother in case I am a nuisance.

In fact my social life is made up of going to a shopping centrewith my mum once or twice a week, depending on how I am and the weather. Theshopping centre is all on one level and plenty of seats throughout. Also I canget a trolley as I go in and keep in though all the shops, so nothing to carry.

The other exciting excursions are medical ones, to doctor, tohospitals, and sometimes, like this week, 2 in one day!!

Then, the most regular social life I have is with my twitter andFB friends. I chat with some of them every day. I don’t have to worry aboutwhat I look like, what the seating is like, can I drink from the glass. This couldbe construed as being a bit lazy, Iagree, but as all my friends are working, and all have busy lives of their own,and as I find I am not good in being with a group of people these days, it is alife saver for me.

I am here for people to visit, but that’s not a veryexciting prospect when people have been working hard all week, and people juststop asking me out as I always refuse, however I could go visit them during theday, but they only have daytime at the weekend and they have busy lives. I alsodon’t have to rush around cleaning and tidying in preparation for visits, not thatfriends are critical, it’s me that knows what I would like to do, what I can’tdo, what I always feel I have to apologise for. Of course if I run around doingwhat I think I can cope with there is always the chance that I will be soknackered I am not up to having them round.

In my bleakest days I feel all I do is sit, on my own, with cat(S) reading or watching TV, except going to the Gyle (shopping centre) andlooking round M&S. When I am in thehouse, I look around and see the shabbiness and it is depressing and I know Ican’t do it myself, and I have no one to do it for me, if I pay for someone todo it for me, the money will not be made up again anytime soon due to mysituation, so can I live with it or not, does it matter or not as rarely doesanyone else see it.

Is this living? Or isthis just existing? My answer varies from day to day, right now, as I have beensitting here a while typing so my knuckles have swollen up, my back and neckare aching from sitting in the same position, in honesty I don’t know.

Jackie's Story- updated

2011-09-02T14:07:00.001-07:00

Jackie’ Story

When I was a teenager, I begin having lots of aches andpains. The doctors labeled them as, "growing pains". After havingconstant pain in spine I hopped from doc to doc yet, they could findnothing wrong, and they basically said it was all in my head. Eventually, I wasdiagnosed with Ankylosing Spondylitis. as my doctor believed there was aproblem so kept sending me to different hospitals, different specialists. Bythis time, however, there was severe damage and fusion in spine which was whyit was spotted on the x-ray. I was told they had not been looking for AS as ita mans' problem!!! This was early 1970's. By this time I was married and in myearly 20's. One of the things I was told was that my spine was not strongenough to carry children. For the next few years, I was continually takingpainkillers and had several stays in hospitals with major flare ups. Theconsultant at my rheumatology hospital, The Northern Hospital in Edinburgh(sadly no longer there) reviewed my drugs. He expressed his concern and disgustthat a) I had never been referred to the hospital before, and b) that I hadnever been on anti inflammatory meds. After the appropriate meds(Naprosyn) were prescribed for use with standardpainkillers (co-proxymol), the pain was managed much better, even though I hadspent unwanted time in the hospital. I did continue to go there on a regularbasis for checkups, until it closed.
The next major event in my life occurred a few years lateron New Year’s Eve, I decided I was not going to drink alcohol, as my friend andI were simply going round the neighbors in the wee village we lived. Whilewalking about, I slipped on the ice and was carried home by two drunk men.Fortunately, one was a fireman so knew how to carry me safely. The nextmorning I called my doctor, he insistedI go to the ER hospital. As it turned out, on falling, I had smashed avertebrae. It was contained so as there was no danger, I insisted on goinghome, even though it was very painful. I was informed by my doctor that if Ihad been drunk, I would probably have been far more relaxed and therefore,would not have done much more damage to my spine.
The next incident, involved my left eye. My eye looked strange and felt as though therewas something in it, after a few days I went to see my doctor. He foundnothing amiss, however two days later, he arrived at my door and insisted I goto the Princess Alexandra Eye Pavilion in Edinburgh,where I was kept for a week. After reading up about AS, my doctor had spottedthe connection between my eye irritation and the disease, and realised thatspeed was essential I had developed iritis and since it had not beentreated promptly, it had become worse. I needed injections administereddirectly into my eyeball, as drops did not work, what happened is that the irishad become stuck and could not dilate, the injection made the iris dilate andkept it dilated while the treatment was carried out. The treatment for iritisis by way of steroid drops and at this stage I needed them every hour,gradually decreased during the week to around 2 a day. Unfortunately I reactbadly to the steroids so the reduction in the dosage has to be very gradual toprevent pressure building. From then on I had iritis on average 3-4 times atleast every year, involving treatment lasting in average 2/3 month. Eventually,both eyes were affected,and on a few occasions both at the same time! Each time, I detected a flare, I went straight to the eye hospital, as I learntmy lesson from the first incident. Thankfully, I only had two additionalhospital stays due to my iritis. I got to be so good at recognizing thesigns of the condition that, I ended up in a few arguments with nursing staffwho told me there was no sign of iritis. After I insisted on seeing my doctor,he would confirm that indeed my eye was infected. In over 30 years, Ihave only misdiagnosed myself once! As I am so reactive to the steroideye drops, the eye presuure has to be monitored carefully, otherwise it ispossible the pressure can turn into glaucoma, and damage the optical nerve, andthere for the vision. On one occasion Iactually lost my sight completely in one eye for a few hours and was rushed toeye hospital. The doctors were rushing around frantically before giving me aninjection, and follow up pills to reduce the pressure in my eye unfortunatelythe pills also did not agree with me. They actually made the pressure in my eye soar. Myeyes are now very sensitive to light and I have lost some peripheral vision inone of my eyes and will most likely need surgery at some stage. That is if Icontinue with as many flare ups of iritis, but fingers crossed since giving upwork they decided to try giving me tiny amounts of the steroid drops to takecontinually. So far this has worked well, the pressure is a normal level andalthough there are iritis cells in both eyes, they are not developing, so themaintenance programme is working, I do go to the eye hospital every few monthsfor check ups, so the situation can be monitored.
A few years later, someone pulled away a chair that Iwas about to sit on it. I fell hard and the next day I was in greatpain. The doctor insisted it was a flare up of AS, or a badbruise. (For I was not screaming and crying when I saw him) I told him itwasn't, as I know my body. However when I went to see my consultant atthe Rheumatology Hospital, he took one look at my face as I walked in and sentme immediately to x-ray which turned out to be break number two. Thethird time was five years ago as I bent down to pick up a bit fluff on thefloor, I heard a crack. Again I was told by my doctor that I had pulled amuscle or torn a ligament. My doctor decided to send me to a physiotherapist. It was an interesting journey therecrouched in the back of a taxi, for you have no idea the number of potholes inEdinburgh!! Anyway the physio sent me home as they refused to touch me as I wasin so much pain. They made arrangement for an x-ray and insisted that theywould need to come to me until they were satisfied with my situation, so Iwould not need to travel. As well as confirming another break, theyfound that I have osteoporosis. This bone condition, combined with theAS, means I have to be very careful of falling over etc.as my back is veryvulnerable – fused bones with osteoporosis.
In December 1999 the rhumatologist decided to operate on myback as I was becoming very badly bent over. As it happens I had been maderedundant with the company I worked for had split so it was a convenient timefor me. This meant opening me up from shoulder to bottom, breaking the spine ina couple of places, placing metal rods at each side of the spine and insertinghooks to pull everything into alignment. This took place in yet anotherhospital no longer there, The Princess Margaret Rose Hospital in Edinburgh. The6-7 hour operation was on a Tuesday and I was put in a plaster body cast on theFriday. (It should have been longer before applying the plaster, but it wascoming up to Christmas and the holidays so they hurried the procedurealong. It was the worst thing ever! If you can imagine, I couldonly sit up being held by several people, I was in extreme pain and experienceddizziness, plus of course my spine was very delicate. The nurses placed hugeamounts padding all around me, it went from under my arms, up to the base of mythroat, and then down to my hips. I was given morphine injectionswhenever I wanted one. Then there was the scaffolding. I was carried over andlaid on this structure, with pipes running under my knees and under arms. Therewas material banded around my neck pulling my head into place and the same oneson my feet so my back was being pulled as straight and flat as possible. Whenthey finished the plastering, I was untied and carried back to the trolley, andsat up as they had to make sure the plaster wouldn't be too high to choke me, whensitting, or too low to hurt me. Then they laid me down on a trolley and sent meto x-ray to make sure everything was in the right place. I was then put on amorphine drip and was in hospital for a month. There were a few unhappyinstances in hospital, for example the morphine drip was fitted incorrectly sothe morphine was going into my muscle and not veins. No one would listen to mesaying I was getting no relief, at least until my arm started to swellalarmingly – then they apologized!
I had to learn to walk, to get washed without wetting theplaster etc.. After a few weeks had to go back to hospital as there was a blackdischarge, leaking out the bottom of the back of the plaster which my mumnoticed when she was bathing me. It turns out it was an infection in the woundon my back because the plaster went on too early. I was taken into a wee room inthe hospital to let a doctor see, and he decided to take the plaster off, theydidn’t think ahead, so I had to stay in that same wee room for the week I waskept in. I had to lie flat as I couldn’t move in case I damaged my spine, andeach day the wound was cleaned and dressed. There were no further problems, butI had two further changes of plaster, each one a little lighter than the last,over a 10 month period. After all this, I was fitted with leather and metalstrap-on body brace. This switch was bliss, as I could take it off atnight and when I bathed. I needed to wear the brace for a year.
I began to suffer from extreme fatigue and when I saw mydoctor, he sent me to the Western General Hospital in Edinburgh for tests.There they carried out my first endoscopy – camera on an endoscope put down thethroat to see what is going on in stomach. It was found I had a hiatus herniaand lots of lesions in my stomach due to taking the anti-inflammatory drugsover such a long time. Blood tests also found I have an under-active thyroid. I now know this is very common, interestingly,the thyroid and AS both have one of the same side effects – extreme fatigue. Idescribe my continual exhaustion is liken to "Walking through treacle, allthe time." This of course meant I had to stop taking the anti-inflammatorydrugs and was limited to only basic painkillers. I was also anaemic.
A few years ago I read about a very new injection which hadbeen used for similar conditions, called Enbrel.(one of the new TNF drugs) I qualified to be given the medication so started with initially twice weeklyself injection. The dosage was then doubled, so I could receive it once aweek. However the anemia was becoming a problem and I needed to be rushedseveral time to the emergency room for blood transfusions. The average bloodcount is 120-150 for a woman. At one point mycount was 50, it was also discovered that my red blood cells were much smallerthan normal. My doctor now gets excited of my count is in 3 figures!!
Despite several endoscopes, colonoscopies and a camera pill evaluation, therewas no obvious reason for the ongoing severe anemia. It was determinedthat it is a common situation with someone with long term chronic disease. Asiron was found to help, I now take iron tablets most of the time.
So I take painkillers, injections, thyroid pills, herniapills, iron pills, calcium pills, osteoporosis pills and eye drops. I get ashopping bag full with each prescription, luckily as I don’t pay for anyprescriptions! In Scotland now no one pays, but prior to that because I have thyroid problems it meant allprescriptions were free.
There has been the almost inevitable depression at times,mixed with loss of confidence caused by the way I look (now very bent overagain). At times I have the feeling of being such a nuisance when outwith friends, for I can't walk far or for long. I don’t want to go outmuch as I always need to have a seat before long, so I no longer have a sociallife. What I do enjoy is having friends over for visits. This too can bedifficult, as I worry that I can't manage to have my home as nice as I'd likeit to be. My true friends will understand my limitations.
The AS was also a contributing factor to the breakdown ofmy marriage. It is a very difficult condition for a patients' partner tounderstand. This is even more challenging when ones partner is young andactive, as in my case. Work life was also very difficult due to theconstant medical struggles, and after the association I worked for merged withanother, they moved offices. This meant hours of travel each waywith 3 changes of buses. After 3 years of working with the new company, Isimply knew I couldn't go on any longer and one day just got up and went home.My HR manager and my doctor were very helpful and guided me through itall. Thankfully, I was signed off sick for a year which meant I couldclaim early retirement on health grounds. I remember going to see my doctorwith trepidation. After explaining the situation to him, he quietly said,"I can’t believe it has taken you so long to get to thispoint". He told me he admired my determination to work, anddidn't have any idea how I had managed to go on for so long. Well that was it,several boxes of tissues later we got organized. Again I think I was especiallytouched at this rare moment for AS patients are so used to people not reallygetting it. We feel we have to defend ourselves from being consideredlazy. Presently, I don't get the old age pension as I am too young, and I couldnot have been able to give up work without the support of my partner and mymother.
I had major surgery last year, as I was finding it more andmore difficult to breathe. I was taken off Enbrel while they investigated mychest/lungs. What they found was my entire stomach and part of my colon hadmoved through the hernia into my chest cavity and they were squashing mylungs. This happened mainly because of my bent back. The surgeonsopened me up hip to hip in order to pull everything back into place and thenstitch my stomach to the abdomen wall, so this will not happen again!Unfortunately while in for this procedure, I caught MRSA and a throatinfection, so my 2-3 days or maybe 5-6 ended up being over 2 weeks. I was alsotold they could not find my hernia so did not close it, as they couldn't get meflat enough, so after all that still have a hiatus hernia!.
Another problem which has manifested itself this last yearor so has been a twitch at my left eye, which became stronger and eventuallymoved down my face. This caused my lip to twitch as well and become a bittwisted up, so I look like I might have had a stroke. I was given Botox,several times but did nothing to really help. The doctor in the Eye Hospital whogives me the Botox, suggested an MRI to see why this was happening. It was allarranged that I go in to have the scan of my head, however as the table part isvery hard and flat so therefore It was too painful to lay on it. So Imust wait for them to come up with a better way of diagnosing this problem. Inthe meantime I am continuing with the Botox.
I got back on Enbrel in January 2011, however I have beendisappointed with the results. It's as though it's not as effective as itused to be. I have also noticed my hands are very painful now, with theknuckles swelling, and some morning they are completely numb. The doctors arethinking perhaps it is carpel tunnel. Myknees are also in pain while I am walking. Feet, ankles, and sciatic nerve areall in pain too. My neck is bent very badly and is fused, so I have tostrain to try and look up the whole time I am walking. This is veryuncomfortable, as you can imagine. I have now started on a different injectionregime, Humira. So far I am finding no great improvement, but it can takeseveral months to kick in.
These are the "highlights" of the last fortyyears of my life. There are too many to go over each one of them for there havebeen many over the years .These days the depression is more disabling, partlybecause I am just so tired of it all and partly because in all honesty, I don'thave much of a life. As I said earlier, no social life in the evenings, toomuch is involved when planning, transportation, seating etc.. I don'tthink it's fair to make plans with a friend and then call off at the lastminute. During the day, my friends are all at work and my partnernow works nights. So even when I have visitors over, we have to be veryquiet as my partner sleeps during the day.
I go out as often as weather allows usually with my Mum, asI am not too confident on my own any more. I think the affect of years ofliving with a chronic disease, is often thought of in terms of the affect onthe body alone. It also equally affects the mind, family, andfriends of those living with the disease. Ones life becomes AS, as it controlsevery aspect of your person. People treat you differently than those who arehealthy and it affects every decision you make.
I would like to make known that having joined variousgroups pertaining to AS, and by starting my own for group for AS' Peeps, hasbeen the best thing ever. I've met so many fabulous people out there, who are apleasure to know. These people are from all over the world. All have agenerous spirit. They are the ones who listen to my concerns and supportme. We all exchange ideas, treatments, hopes and dreams, my life is muchricher for these new friends even though I shall probably never meet them. Butthe big thing, the HUGE thing, is they all know, understand and accepteverything you have to say because they LIVE IT. I wish social media,would have around in the olden days when I started on this journey, as it wouldhave detracted from the loneliness and isolation.
What a joy there has been in the new friendships madebecause of this horrible condition! That has been one of the major factors inme getting more involved and active in spreading information about AS. When Ihear all the different stories, (and many similar conditions), the huge delayin making a diagnosis, I can understand what these patients are goingthrough. Some were diagnosed late, which allows the disease to do severedamage before any treatment has been given. This delay also allows the mentalwounds to fester. Those that don't understand have hinted that we aresimply seeking attention or have a mental illness. In my case if it was not formy doctor who doggedly kept sending me to specialistafter specialist, until the final x-rays showed a very damaged spine.
I also started doing the chronic illnessspecific blogs recently - as so many of my friends, people I have known foryears, have read my story and told me they had no idea all that was involved,and friends on FB and twitter have read and have thought about their friendsand family who have some form of something similar, and it has made them considertheir attitude.
I always joke about my hair/make up/jewelry/scarves/handbagsetc as my way of trying to grab peoples interest with the top half sothey don't notice the rest so much, but a friend, years ago, told me thatshe could always tell how I was by my makeup. Being made up and well dressedetc meant I was a little below par, not too much of anything meant I was havinga good day, the full works and I was in full hiding behind the mask mode - ienot good at all. I laughed at the time, but I can see now she was quite right.) I would put these two paragraphs in yourbiography
Below is taken from the NASS (National Ankylosing Spondylitis Society)

Ankylosing Spondylitis (AS) is a painful,progressive form of inflammatory arthritis.

It mainlyaffects the spine but can also affect other joints, tendons and ligaments.

Ankylosingmeans fusing together. Spondylitis means inflammation of the vertebrae. Bothwords come from the Greek language. Ankylosing Spondylitis describes thecondition where some or all of the joints and bones of the spine fuse together.

Entirefusing of the spine is unusual. Many people will only have partial fusion,sometimes limited to the pelvic bones.

Otherareas such as the eyes, bowel, lungs and heart can alsosometimes be involved with AS.

What happens in AS

Inflammationoccurs at the site where certain ligaments or tendons attach to the bone. Thisarea of the body is known as enthesis.

Theinflammation is followed by some erosion (wearing away) of the bone at the siteof the attachment. This is known as enthesopathy.

As theinflammation subsides, a healing process takes place and new bone develops.Movement becomes restricted where bone replaces the elastic tissue of ligamentsor tendons.

Repetitionof this inflammatory process leads to further bone formation and the individualbones which make up your backbone (vertebrae) can fuse together.

The pelvisis most commonly affected first. The lower back, chest wall and neck may alsobecome involved at different times.

AS is a very variable condition

Some peoplewith AS have virtually no symptoms whereas others suffer more severely.

AS tendsto affect men, women and children in slightly different ways.

Men

The mostcommonly affected areas in men are the pelvis and spine. Other joints which maybe involved are the chest wall, hips, shoulders and feet.

Women

In womenthe involvement of the spine tends to be less severe. The most commonlyaffected areas are the pelvis, hips, knees, wrists and ankles.

Everyone is different, and there is no way of knowing howyou will progress, so the priority is to get pain management in place thatworks for you, and try to stay as mobile and upright as possible.
I have now put on too much weight due to going a long timewith little exercise. It is difficult to exercise with my breathing problems,recent surgery.. I am hoping to get out and active soon and start a healthydiet. Hopefully this should help me shed some of the excess weight. The onlyexercise I am allowed to do is to walk, with the fused spine and neck andosteoporosis it is too dangerous, I am not even allowed a massage!
The other main symptom of severe fatigue can be a real problem as people can look welland so appear to be lazy! One day you can be severe pain, the next fine, butvery tired. This again, is what people find hard to understand about AS. Onedoesn't get ill, get treated and get well.
I think the situations when someone tells us that theyunderstand as they have a pulled muscle in their back, or similar, is bothirritating and condescending, but we usually just smile and sympathize.
I hope my story might be of interest, and show that thereare so many similar health issues, we are all different, and all have differentstories, but so much in common.

Not so bad really.........

2011-09-02T10:09:00.000-07:00

After reading another blog today (Tilting at Windmills byTearose68) I decided it was time I just allowed myself a wee ramble, plus Iliked the idea of thinking about and listing “things to be glad about.”

I’ve had a rough couple of days, and plenty of grumbles, andthinking about it, realise I shouldn’t really be moaning!

Starting with the more serious health issues:

I should be glad about the fact I haven’t had a bad flare of myAS for a few years; I have lots of grumbles, but not had the banging your headoff the wall to try and knock yourself out to get away from it type of pain fora while; I should be glad that while my eyes are also grumbling all the time, again no major flare ups; I should be glad that I have been lucky enough tohave been able to retire early so I escaped more of the purgatory that was myjob, and the huge stress of both the job and the travel etc; I should be gladthat I am still able to get out and about, however restricted it might be ;and Ishould be glad that I managed to get my work pensions (though greatly restricted)and DLA, when I hear the problems experienced by so many others.

On a lighter note;

I am so glad when I sit down with a new bookwhich is the next instalment of a favourite series and you settle down to visitold friends; At the same time a nice big mug of hot coffee; a cat curled byyour side, and old soft comfy clothes on, and to finish that vision – rain outside-fire on and all cosy. To appreciate the simple things – changing the bed so allfresh and getting into it that night all freshly showered and fresh nightie; tofeel under the weather and your cat to make a fuss of you and snuggle inlooking after you; To be feeling down or lonely or just fed up and to come ontoTwitter or Facebook and find lots of lovely people who have the time and theinterest to chat with you.

I’m in my bed now, not freshly changed though, I have a catbeside me – snoring, I have my book on Kindle ready to read, but I got caughtup on line chatting and writing this…….. not so bad really….

Re previous blog

2011-08-25T01:58:00.000-07:00

Pondering

2011-08-25T01:49:00.000-07:00

I was just sitting, pondering over yesterday…….

You see, I went out with mum as usual, we ended up in M&S – just for a change – and finding they had 20% off household, I soon had my eye caught by throw and cushions which I thought would brighten up my livingroom. I don’t really want to spend money on a new settee, due to my early retirement my income levels are somewhat reduced, so I thought ok why not.!

I get home and, of course, need to get it all organised, so settee needs to be stripped of everything, and you can’t put new stuff on without cleaning, so hoover is brought out, attachments put on…. Eventually get to the stage of pulling settee out and starting to place the throws and get them to fit the settee, arrange cushions, push it back, then hoover the full room, then dust the whole room, then hoover the hall and kitchen….. then old cushions to be put away, old throw in machine……..by which time I am soaked to the skin, it is so humid and I am so tired and really fighting to keep going. Go to make a cuppa and see dishes still waiting to be washed, so do them, when I eventually sit down with a cuppa and a glass of water for the pills, I can feel everything tightening and crunching and stiffening up, and sure thing try to stand and oh my goodness, it took several goes. I had been looking forward to a shower and standing under the hot water and into clean nightie etc., but there was no way on earth I would manage that. However, those with similar health issues will understand and empathise, I got the enjoyment of both buying and seeing the end result, I couldn’t not see it all done, and, if I hadn’t done it then, I would have finished the day on a downer both by not seeing the result, and knowing it was still to be done without the benefit of the adrenalin!!

I made an informed choice to – in essence – cause myself pain and fatigue, but to have the same full experience – like anyone else would, of seeing the results of my days work the same day. Next day I can get up and enjoy the sight of the work done, possibley crawling there, but hey ho, I can have a quiet day and potter about keeping moving gently. The other consideration is that I might have not been able to do it the next day, so the frustration would be overwhelming and probably end in a cry of “no fair!”. This is my life and the life of many many other people with chronic illness, everything is a balancing act, everything is a trade off, everything has to be considered to try and get the best out of a situation, even something so mundane as what I did yesterday.

This is now “tomorrow” I feel rotten, I am sore, I am so tired I could cry, my hands are swollen and red, my eyes are all sore and a little bit on the pink side, my guts are very unhappy and my head is so sore. As soon as I can, I am in that shower, clutching the rail and letting the hot water pound down and hopefully loosen me up a bit, I will then put on some nice loose comfy clothes and go through and let my new bright settee cheer me up, read, watch Tv/DVD whatever takes my fancy, for as long as I can.

Sleep

2011-08-18T11:58:00.001-07:00

Sleep, something there never seems to be enough of. Sleeping can be difficult for us as the pain can hinder peaceful sleep, or getting your aching joints into a comfortable position for any length of time, or exhaustion allows you to sleep – for a while. We have become used to the wee small hours when everyone else seems to be asleep but we have woken up with pain, or discomfort.

Do you lie there and hope sleep comes back, or do you get up and try to stretch, move, anything to help aid a degree of comfort so that when you go back to bed, so you might sleep? If you have someone else there, you have the added pressure of trying not to wake them too, if you are working you have the stress of knowing how wrung out you will feel the next day while trying to carry out your duties well.

Then there is the fatigue, it is such a debilitation part of AS, but when combined with lack of sleep can make it impossible to carry on – to do your job, to have a social life. I have to say that one of the most enjoyable parts of not working anymore is that when I wake up at 2 or 3 in the morning – it doesn’t matter!! I can get up – make a cuppa – settle with my book - with no worry. I remember lying awake, especially on a Sunday night, and watching the hours go by knowing I needed to sleep, and sometimes with no sleep, sometimes with an hour or 2, because of course the more you worry about it, the more difficult it becomes, and then having to try and function at work.….

Most people go through periods in their lives when they find sleep difficult, but for us, and others like us when fatigue is part to the disease; it is difficult to describe the intense bone weariness, the feeling of walking through treacle, both physically and mentally. Oh I am so jealous of those people who can cat nap, I have never ever been able to do that either, but I am expert at staying awake all night long……..

MOW – Weathering the Storm

2011-08-18T11:37:00.000-07:00

I love the idea of AS being likened to a storm, sometimes roaring and trying to knock you off your feet and flatten you, at other times grumbling quietly in the back ground and you are just waiting and waiting and watching for it to spring to life, and then there is the calm………..

After so many years and so much fusing, I don’t have too many hurricanes these days, thank goodness, but the quiet grumbling can be every bit as unsettling. That is how I tend to be most of the time these days. Never mad swirling frightening storm, but just a grumble with the odd skirl, just enough to stop you from relaxing, but enough to make sure you don’t give up on the meds!!

I can remember well some of the bad storms, the screaming and crying with the pain of it all, wandering the house at night holding onto the wall as you are so tired of being so uncomfortable in bed and unable to sleep, and feeling like banging your head off the wall you are holding onto to get some release from it all. Trying to travel to get to the doctor and ending up crouching on the floor in the back of a cab as you couldn’t take the pain of feeling every pothole in the road. But you all know what I mean, you have all been there. You do toughen up and your pain threshold rises up. It has to.

But we come through it, there is no point in worrying about it, it doesn’t help. And we learn to zip our mouths when someone tells you they know how you feel as they hurt their back lifting something heavy……

We get better and better at dealing with it, we get better and better at hiding it, and better and better at living with it. We weather the storm and learn to enjoy the calm, be apprehensive about the quiet grumbling, but when the big one hits – well been there done that, we weather it, we get through it, till the next time.

The little things

2011-08-13T01:59:00.000-07:00

Its Saturday morning, OH off out shopping, I have the house to myself. Bliss!

My OH works nights so, usually in the mornings I am creeping around trying to be as quiet as possible, and cant do anything in a relaxed, noisy way, till he wakes up. But on Saturday, instead of the long lie I feel like, I jump out of bed when he leaves the flat at 8.30, and hoover - yes hoover in the morning - wow!! I do dishes & whatever else needs doing / I want to do, so I can sit down with a cuppa, and the papers, and some music on. I am listening to a CD I bought some time ago by Cyndi Lauper, which if he heard he would not have a positive thing to say, but would make comment on anyway, but this morning I can play it and play it loudly!!!

So I am happy and content, CD playing loudly, papers around me, nice big cuppa, cat by my side, aint life great, at least in a small way for the next hour or so................ Hey I take happy when I can

HOPE

2011-08-10T02:27:00.000-07:00

Hope

What do I hope:

I hope that the new people being diagnosed with AS have more luck than us oldies

I hope that the fabulous work being undertaken by so many new groups to spread the word will help for AS to be understood better

by families and friends, and that doctors will take more interest

I hope that the time taken to diagnose AS will become much shorter as the word spreads

I hope that if people get on the TNF drugs early enough they will halt the progress of AS, both in terms of pain and disfigurement

I hope that knowledge of AS will spread to the people who decide about benefits payable, about disability payments, and early retirement so there doesn’t have to be the continual struggle to prove what AS is.

More personally I hope that I have reached the end of the road as far as flares go, being so very bent the pain from just being twisted is enough without more flares

I hope I manage to have no more breaks

I hope my eyes don’t get any worse

I also hope that everyone with AS takes the plunge to join one of the fabulous support groups. It will change their lives to have friends and support around them, where ideas and tips are passed around and where you are never alone. The best of which, is of course, MOW!!!

Sometimes it's the little things......

2011-07-29T11:56:00.000-07:00

The Little Things!!

Have you ever thought about the little things that are sent to try us with AS. Sometimes they can feel worse than the big things…

For example, like me you have a fused neck, so there is little movement….you go to a party, social event of some kind, and you are handed a long thin glass, or a champagne flute. You know that feeling… you know there is no way you can drink more than a little drop out the top of the glass as you can’t move your head back far enough to be able to drink much of it. So - do you say something, nurse the one drink, or just quietly try to figure out how you can change it into a glass with a wider top?

Right then, that’s the drink covered; you wander over to sit down and low and behold, but the seating is all nice and low, you know the kind I mean, where you need a crane to get you back out of it, either that or slide off it to your knees, so you can get something to hang onto to haul yourself up with. The same way when you spend a night in a hotel or with friends and find the bed is low to the ground so you have the same problem……So again what do you do???? You can’t stand around for too long, but if you sit down it will be a major exercise to get upright again, or do you just end up leaving early…..

Of course before you get into the house / hotel, you may have steps to contend with. There are lots of tenement flats in Edinburgh, and many of them have no lifts and the buildings are so old the stairs are likely to be worn and uneven, oh joy!! One step at a time while clutching the handrail and basically pulling yourself up. You arrive hot and bothered and sounding like you need an immediate oxygen mask!!

Alternatively, in some "trendy" new properties with internal staircases you may find stairs with no handrails, or curved with narrow steps, not sure which is worse.

So go back a stage - you are getting ready to go for a night out - what to wear???? I can no longer wear dresses with being as bent as I am; I end up with the back of the dress considerably shorter than the front - not a good look! So separates it is, bottom half is ok, problem is with the top - and the bent body. I have to buy a bigger size to accommodate the bend, the same problem re shorter back and longer front, but it is easier to camouflage with a top. However with getting a bigger size there is always the chance the neck / shoulders will be too big.

Blouses are better with a yoke back with a pleat so it will hang better with the additional material, but not always easy to find. Also if there is too much fullness at the front and no yoke at the back, then the back is accentuated with the tightness of the garment and all the loose material is hanging at the front. It’s a fine balancing act. Then the neck line………...if it is too high it strangles, I can no longer wear a polo neck (turtle neck!), and of course the opposite is also a problem too low and suddenly you realise you are exposing more than you intended!! The end result is that many clothes are bought simply because they are appropriate for the shape rather than because you really like them, and if you try something on and it fits - well it will do!! So many days I set out for a shopping trip, and end up with a continuing cry of too long, too short, too low, too high, too straight……………then the ensuing depression when I can find nothing suitable and am reminded that I have such an awkward shaped body.

So thinking about all that, just a selection of the everyday problems, is it any wonder that my social life is non-existent!!

Right then, into bed, with TV, laptop, book and glass of something, so much easier and more comfy, not as much fun though………………………….

Guilt

2011-07-10T13:14:00.001-07:00

Where do I start ……..

Well there is the guilt associated with asking endlessly:

If I had pressed harder for an earlier diagnoses

If I had asked more questions,

If I had demanded more answers,

If I had exercised more.

The endless lists of things I maybe could have done better so I didn’t end up so disabled. I know there is no point, because no one can ever know, from all the research which is possible these days I know we are all different and it is impossible to know how the disease will progress in any one based on how it all started.

There is the guilt because you feel you have held everyone around you back, due to your limitations. In terms of outings, holidays, the fact that you had to struggle so much to work you had no energy left to enjoy yourself, then the fact that you had to give up work early so imposing a financial pressure on top of everything else.

Then there is the guilt when you find yourself wandering how you are going to cope when your elderly mother becomes more frail as you are an only child and no other relatives around to help you, and the guilt because she is worrying about how you will cope too.

There is so much guilt, perhaps that is why the dark cloud of despair and depression visits many of us. We have the good days and we try to use them to the best of our ability so at least when the bad days come you don’t feel guilty for wasting a good day.

However, every now and then I remember, that by doing that, I end up doing too much on good days, and unable to do anything on bad days, what happened to pleasure, enjoyment, too guilty thinking about the ironing needing to be done, the dirty kitchen floor……….

Guilty for doing too much, guilty for doing too little, guilt guilt guilt…….

You know what it’s like when you have one of those days…

2011-07-08T12:53:00.000-07:00

Yesterday was mothers birthday, so although I was not feeling the best, I made the effort and we met up and went out. I treated the whole day like it was a special day, and made her lead the way go where she wanted, do what she wanted etc. We had intended going for lunch, but in all honesty we were both too tired, so we jumped in the taxi to my flat, to give her her pressies.

I had searched and searched on line for the artists name as well as the name of painting we had both seen in a Cowboy Museum in USA. Eventually managed to get his name and this particular picture is his most famous painting. Could not find anywhere I could buy a copy however eventually managed to find an article about him which showed the front of a magazine advertising an article about him. I e mailed it to friends who have an art business, and they downloaded it, printed it out, cleaned it up and framed it, fab.

I was also concerned as she had a problem recently when her phone lines were down and I discovered she didn’t use her mobile as she basically found it too small and difficult to read and use, so I bought her one of the simple phones. Only has phone and text facilities, no camera/Radio etc, plus the buttons are bigger and the text is bigger. The ringer can be set much louder too. So set it all up for her with numbers in etc. OH got her a big box of hand made chocs as she has a really sweet tooth!

I was looking forward to her reaction and I was pleased to see that she was very happy with her gifts. So a good day was had, however we were both extremely tired. She phoned me later to say she had felt very special all day and had thoroughly enjoyed her day and loved her pressies, her best birthday ever, can’t ask for more than that!

I had intended today to have a good long lie and a generally lazy day, and the forecast was for rain. I was so disappointed to find the sun shining when I woke up, as I knew I would then become guilty being lazy. Somehow it is much easier to be lazy on a wet horrible say than a sunny one!

So got up and stripped my bed and took all bedding through and put some of it in the machine to wash, then though I would just keep going and make up the fresh bed. I struggled on my own and even turned the mattress, I was almost done when I noticed heap on the floor- it was the mattress topper! So the bed had to be unmade and then remade…

It was so humid that my hair was plastered to my head and dripping into my eyes and stinging, clothes sticking to me, so not a good look!!

By this time first load was done so I gathered it all together and put second load on, went out to back garden to find someone had beat me to it and there wasn’t too much space left (communal garden as I live in a flat) however, I got my washing line out and managed to get a couple of stretches for the bedding, and hung that first load out.

All going quite well, apart from the bed fiasco...

As I had bought some steak for stew yesterday and I knew I had mushrooms and carrots, decided to get started on this, even though I had made a cuppa and was going to have a rest. OH got up to take cough medicine, so I shot off to have a quick hoover (he works nights so sleeps during the day!) Then started on the stew, prepped all veggies and had steak chopped and in flour/ needed seasoning, so collected the salt and pepper. Used the salt then went to use the black pepper when the dispenser broke in half, and course ground black pepper was everywhere, including in my nose as I sneezed and sneezed! Stopped to clear it all away and brush kitchen floor. Then I noticed there were a few breadcrumbs round the toaster, so decided to wipe it down……emptied the crumb tray, then shook the toaster and I ended up with breadcrumbs everywhere, piles of them!!! So cleared them all away and brushed the floor and started again on the stew. After I took the full bin liner out of the bin when the top tore, so had to decant some of the rubbish into another liner.....

So, thinks I, I will use slow cooker then I can relax and forget about the stew for a while, unfortunately this means emptying a cupboard to reach the slow cooker, but it will be worth it I decide. So stew started, and then put into slow cooker and all washing up done, and kitchen put to rights. Second load done, take it out and hang it up.

Back in, sit down and have a cuppa, then remember there were a few towels, so thinks as well to put them on.. …..On laptop chatting away when I suddenly realise it is pitch black, check outside and it it torrential rain, Grab bags and off out to collect washing. I am soaked, washing is soaked, have to get the clothes horse out to hang washing on when I discover one pillow case is covered in bird poo!! Have to wash it again by hand. We have thunder and lightning with some hailstones.

By now I am exhausted and frustrated by all that has gone wrong, so I have cuppa then decide I need to eat, so cook some sausages with some beans, while I enjoyed eating them - tum not happy to receive them.

Went for shower, washed hair and at least felt clean and fresh again.

Watched a little of a recorded programme on TV, but eventually crawled through to bed, nice clean fresh bed, although I did have to move Milo (cat) so I could get in!

Such a frustrating day, but on a positive note, the chores are done, although the bedding on hanging up in the kitchen! But it does allow me to have a really lazy day tomorrow!!!!! I am sitting in bed, with a glass of pear cider, laptop, Corrie on box, and good book waiting to be read some more. I am feeling not too bad, all things considered, although watching the clock for pain pill time.

Ever think you should really have stayed in bed as everything you tried to do went wrong…….maybe weekend will be good to make up for it…………….

We never learn do we????

2011-07-02T02:56:00.000-07:00

I had a night from hell last night, even the cat took one look at me and snuggled - sure sign he knows something is up.

I had been out for a few hours earlier in the day, really enjoyed getting out even though it was only for shopping,but also got a new pair of fab trainers at half price. They have really bouncy soles and so absorb all the shock from walking in urban areas, so should suit me! However I felt totally exhausted when I got home, felt ill as I was so tired. tried to stay up and about so I would have a good nights sleep, but gave up and went to bed around 6.30. OH has to be up at 8 for his work, so had a terrible job staying awake to make sure he woke up, so when he left at 9, I just passed out. I had had no dinner as not hungry and couldn't be bothered, yet I woke up at back of 11 with throat and mouth full of acid. My hiatus hernia was just reminding me it was still there. So I jump out of bed, rush to get some cold water to drink and drink to clear it, then made cuppa to take back to bed, and of course must then stay upright. I read for a while, but eyes kept closing, but then I would wake again as sitting, thus set the pattern for the rest of the night till around 4-5. I decided then I had to try and lie down, I did and eventually fell asleep, only to be woken up by mum phoning at 8 as I usually phone her then so she wandered why I hadn't! She was busy hanging out washing as such a nice sunny day.

Now this is the reason for my title - why do I insist on feeling lazy or guilty or whatever the hell it is, when I hear that others are up and working! I feel I too must get up, strip bed, and half straight into the machine. Had a rest as I felt very nauseous, then made up fresh bed, with cats help !!, had to get dressed of course, to go out and put washing line up, then hang first load, and put second load in the machine. So then looked for any other washing I had, may as well make use of weather and line being out.

I just could not relax and try to get a bit more sleep had to be up to be seen that I was doing my chores etc etc I am the one that keeps telling others to be kind to themselves and pace themselves and not do too much, wish I would listen to myself !

Well its done now, load 3 in machine, 4 organised and ready, feel like I am sleep walking, cannot eat anything and feel sick, but, my reasoning is, I would be feeling the same if I stayed in bed but would have the work still to do..... In fairness to myself, I know a big part is that we get so few good days, feel I must take advantage as if washing left till tomorrow it might be raining.....honest

How they cope with wonky bodies in hospital

2011-06-23T13:58:00.000-07:00

I am going for breast screening tomorrow and I was pleased to note that they had put on the letter that I had been allocated a longer than normal appointment. At least I am assuming this is because of the problems we have encountered in the past trying to get my body into shape to allow me to fit in the machine. We tried standing in the usual way, tried sitting, tried different technicians until we managed to get the picture taken, and confirmed it was ok. I remember leaving there a little sore after being pulled and pushed into position.

I was sent for an MRI recently on my head, that was just a joke as there was no way on this earth that they could get me into position never mind stay there for 20 minutes. It seems there are MRI machine which can be used, where appropriate, with the patient sitting, now that would have been doable!

A couple of years ago I had a C T scan, that was however on my middle and with copious pillows, we managed to get my head and legs supported so that we got my back as close as possible to the position required. But, again, I don’t think I would have managed this on many other areas of my body.

When I think back to the many and various X-rays taken, bone scans etc I cannot understand why there is such a commotion to deal with someone like me. When I look around the waiting rooms I see many, admittedly mainly elderly, people who are obviously with mobility issues and movement issues - how do they cope??

Are the machine simply made in the one way, or are there variations of the machines but due to cost hospitals don’t/can’t afford to have more than the basic model? As I said on an earlier blog, I am not that unusual, maybe a little more extreme, but there are all sorts of physical disability that would make these machines difficult, surely?

The other big problem I have found is anaesthetic, they have quite a problem due to lack of movement in neck and jaw/neck restricts how wide the mouth can be opened. Last year the doc put the tubes down my nose, the tubes had to stay in for a few days afterwards so I ended up with thrush in my nose/mouth - lovely! I wont go on about the surgery, as I have already described it, simply put my hiatus hernia had allowed my entire stomach and part of upper colon to move up and into my chest cavity, thereby squashing my lungs, So they pulled everything back into place and stitched stomach to my abdominal wall, however as I was not flat on the table the couldn’t find the hole (hernia)….which is a little worrying in case anything else goes walkabout!! Again the stoop was the problem both in the operation and because they think that once the stomach started to pop through the hernia it more or less got sucked up……….

There are, of course, all the smaller annoying problems, e.g. they never have enough pillows, whether to support you for tests, or if you are an inmate - to be comfy in bed (I now always take my own pillows in with me!) Even popping up on the docs exam table, for me needs the back to be raised and then a couple of pillows to support my neck, and I always just ask whoever it is, do they want top or bottom half to be flat, because the can’t have both, to get as flat as possible top half, need several pillows under legs, plus one under head. I do find I get frustrated as only a few docs will ask what do I need to allow them to carry out whatever it is, but most just kind of hover looking uncomfortable, so now I just ask them what they want and direct them.

And as for dentists!!!!!!!!!! I now have a lovely lady who has no problem at all, we just work together, I have had a few who found me to be such a nuisance they would sigh as they tried to carry out the exam…..I would get so angry then upset, but this lady saw me as usual dentist was on holiday and as I started to explain, she immediately said it was all ok, we would simply work together………Now there's a novel idea!!!!!

Being an advocate for Ankylosing Spondylitis

2011-06-22T08:05:00.000-07:00

Masquerade of Words (Spondylitis Blog Carnival) is a new group which I have joined, and as it says, it is for blogs related to AS. Subjects for discussion were Guilt and Being an Advocate for AS. I have dealt with the Guilt blog, so now onto Being an advocate for AS.

On consideration I do consider myself to be one, I have always told people what was wrong by name, rather than just saying a type of arthritis, though often did have to end up using that description as few people had heard of AS. During the years, when I had major surgery on my spine, I told people what had been done and why. When I kept breaking my back, I would explain why. When I had what felt like almost continuous iritis, I would explain the what and the why.

In the early years I looked quite "normal" so there was always the feeling that people didn't take AS that seriously, after all I looked fine. In fact I used to get so bloody sick of people saying "but you look so well" as though I was making it up, however if they came upon me during a flare...... Even doctors would come out with the looking good condescending type remarks, which led me to believe that unless you were obviously unwell or screaming in pain, no one really took you too seriously.

Well despite my efforts, and partly because too much damage had been done in the years it took to diagnose my AS, no one can now be in any doubt that I am not fine. I am very stooped, very little movement in my neck and so on, so now when people ask what is wrong, they have a much better idea of what is involved, and they no longer say how well I look - actually they do as I am not pale and feeble looking - but I explain that is to do with a good attitude, good makeup- and red hair dye!!!

I have always been up front with people regarding what is wrong, and, unfortunately, I am now a walking and talking example of the wreckage of a body it can leave you with. I actively take part in various groups and blogs to widen the knowledge and understanding, of those with AS or other chronic conditions. I hope in my way I help family and friends understand what we go through, and that the information and experiences imparted by myself and others like me, might help newly diagnosed people deal with their situation, and encourage them to strive for all the help and medication etc that is out there. This may, in some small way help them to have a better outlook than people of my generation.

I do worry sometime that people consider that I am simply feeling sorry for myself, or like to talk about myself all the time, I have had this awful disease for 2/3rds of my life, it rules my life, but maybe if the treatments and drugs that are around now had been available then my life could have been much different, so I am passionate about making sure that all newly diagnosed people have as much knowledge as possible made available to them so they have the best chances possible.

Guilt; such a little word that encompasses such a lot!!

2011-06-21T11:13:00.000-07:00

Many of us with Chronic illness suffer from guilt in many forms, e.g. guilt when you have to cancel appointments at short notice when you aren’t well enough to attend; guilt when you do make it out but feel you are the nuisance who needs to be able to get a seat and that you don’t have miles to walk to reach the toilets; guilt when you feel you are having to ask too often for assistance just to do ordinary everyday chores; guilt because you have to cause extra expense to pay someone to carry out the jobs you can no longer manage; guilt when you look around your home and realise that you need a shower, the bathroom needs to be cleaned, and a pile of ironing is waiting, knowing you have to chose the 1 you CAN manage, and the rest will have to wait; guilt when you see the shabbiness in your home, but as you can’t afford a decorator, it is renamed shabby chic. I could go on, but you get the picture!

Then we can move to the workplace: guilt when you are afraid others might feel you are not pulling your weight; guilt when you know you have had a bad night and so you will not be firing on all cylinders, but you must go in; guilt when you do have to stay home sick as you know others have to cover for you……

I find there was a constant battle to find a good balance in my life, but I am afraid I failed miserably as I now have virtually no social life, and have not been on holiday for several years. Why? Guilt; because if I want to enjoy myself and not be a burden on others, I need so much organisation to make sure I am comfortable. I need a plan of how to get there and back and I cant cope with long lines queuing.

I live in Edinburgh and I used to love the summer when the city comes alive with the tourists then the various festivals. However, most of the venues require you to queue outside as no seats are book able, the shows, in particular some of the comedy ones, are on late at night, which in another life was no problem, as I live in a fairly central location, we would simply walk as it would be after the buses stopped running and there would be few taxis around. Not now, so either I am a complete nuisance to everyone, or simply stay home. I cant cope with the payback when I am not sensible, these days.

Because I try to be cheerful and smile etc - I found before I became as bent as I am now, that people would not necessarily think I had a chronic illness, so sometimes I would get strange looks from people when friends would make sure I had a seat etc, at least now I am very bent and need a stick, it is patently obvious there is something far wrong, so I don’t have the guilt making me feel the need to explain - strangers don’t need the details, they can now see as much as they need to know!

So really the bottom line is that I find there is a terrible feeling of guilt as my chronic illness affects so much of my life, and therefore the lives of everyone else around me. In my case this has meant a virtual withdrawal…from life, the guilt is too great.

AS and clothes

2011-06-16T10:59:00.000-07:00

I was sorting out my wardrobe today, far to many clothes combined with a Scottish climate means wardrobe needs to be sorted regularily.

The amount of clothes can be excused, honest, because, basically, of my AS. For a start there are the ones to cope with different sizes, or just tents, because my weight tends to change quite a lot. At the moment it is quite big becasue of enforced lack of mobilty for far too long, hopefully as weather is getting a little better might manage out more and hopefully lose some of this excess.

The sizes vary considerably also, depending on the cut, as my back is so bent the width is greater - try bending forward and circling your shoulders forward and see what I mean. So shape and cut have to cope with this "spread back" without being baggy at the front, can't be too straight cut as the bum sticks out (I know it is too big, but thats just the way it is). Often getting enough material to fit the back means huge shoulders etc.

Then there is the neckline. Cant be too low, as bending forward could end up flashing more than perhaps intended, can't be too high, as strangulation isn't a good look either!!!!

The length brings its own problems as too long can really cling to back and enhance the bend, but too short, made even shorter by my posture, can be just plain unflattering. As I already mentioned, have to check back and front for length as tops will not be the same length all round, but dresses are out altogether. All the lovely waterfall cardis can end up with the already longer front trailing on the ground while the back quite short - again accentuating the posture.

So you see it is so difficult to get better than "it fits, so it'll do". Late last year a bought a tunic type of fine knit top, loose round neck and much wider at the bottom, didn't strangle me, and the wider bottom made it not too bad, I now have it in black, purple, red, light blue, light mauve and turquoise........ I found last summer a 3/4 length sleeved top, loose and comfy, now have it in black, light grey, blue, pattern with purples/lilacs, different pattern with autumnal colours, black and cream stripes. But worm differently and with different accessories..........

Trousers again have problems with waist fitting, depending on the cut can be far too low on the back and high at the front, almost always wear loose pull on types now, much easier. Also found that as a result of my back surgery 20 or so years ago, 1 leg is shorter than the other, not so anyone else would notice but I see it on my trouser length!

Having discovered Clarkes unstructured soled shoes, I can wear nothing else now, luckily they have many varied and different styles and colours. I wore a different type of shoe on Tuesday, my feet are still aching. Obvioulsy they are not shoes with heels but I make up for the lack of that kind of style, by wearing more colours, particular favourite being pink!!

So there you are, a few examples of how this sod of a disease and what it has done to the old bod, affects so many things in my life.

Travel with disabilities

2011-06-07T03:20:00.000-07:00

I love holidays, well at least the idea of them!

Ok, you roll up at the airport, and drag your suitcase, while carrying your hand luggage up to the check in desk, luckily usually not too far, and get checked in, and pray that your name is on the list of people allocated a wheelchair, (usually, in fairness, all the problems with this are usually on the homeward part of the holiday). You then have to sit and wait in the corner for someone to turn up with said chair. (never, ever offer to walk any further than to go to the waiting area, or your name will be whipped off that list before you realise what has happened!) You are then taken to the departure gate, and placed in position ready for a quick take off when the flight is announced ready for boarding. Now, this is when you try to be really charming, and hint at decent tip, if there is any chance of a wee stop at duty free to pick up your holiday booze, some are so pleasant and helpful, while others just refuse as not on their job description. But don’t despair, you can usually find one near to your departure point where you can manage to either send your travelling companion, or get them to push you!
As you are in the chair you are taken on the plane first - if they get back for you and don’t forget! Usually this is my flight from Edinburgh to Heathrow, so just time for a coffee and rest in flight, before the next stage, remembering that no matter when your connection flight is leaving, or how far away it is, you will be last off the plane. Always take this into account when making bookings!

If all has gone well, someone with a chair will be waiting when the plane has emptied and they already know where we are all going, and when we need to be there. So off wee shoot, and another good point is that you - and companion - get through all the searches and passport control etc first, so you can get taken to the departure gate and again left for the announcement for boarding. Same happens again here, 1^st on, last off, and out to taxi rank and hotel here we come.
One of the problems many of us face on the journey out, in particular, is the transport of prescription drugs, and of course if you are on any kind of injection, it might need to be kept cool. It is always advisable to carry all drugs in hand luggage-to make sure they don’t get lost- and injections in a cool pack, it is also worth checking with the airport if a doctors letter is
advisable, remembering the xray machine will show all these syringes.

Well we have arrived now, between jet lag, exhaustion, etc etc I usually try to time my arrival for late afternoon, so by the time you arrive at the hotel, check in, unpack etc maybe have a wee wander for a look around & have a snack, its time for bed. I usually push myself to make sure all this is done, as it is horrible to wake up to it all in the morning. If you have injections that need to be kept cool I will have arranged for a wee fridge in room.

Normally I am on holiday with mother and neither of us would consider driving abroad, so all outing are arranged there on tours. These can make or break the holiday for me, as the way the tour manager handles your disability can make such a difference. I have had some fabulous ones who quietly and unobtrusively will ensure you are ok, and never make you feel like a nuisance, and you also get the other kind…..
Then there is the return journey to look forward to. I have to admit that each time in the last few years that mum and I have been to the USA, when we land in Heathrow looking for the wheelchair to get us to the connecting flight, despite having cleared with the cabin crew that you are on the list, there is always some reason why no one is there to meet you. Usually that there are not enough chairs or people to push them! I don’t think I have once made the connecting flight as booked, luckily there are frequent flights so get home eventually. But then this where I have seen the most infuriating sight, of elderly, poorly, disabled people, on realising they might not make a connecting flight, leap with gay abandon from the wheelchair and gallop up the corridors and disappear round the bend!!! No wander there is such a shortage of chairs and staff, when so many are being used by people who, quite frankly don’t need it! This has not been something I saw only the once, I saw it every time, several of the people in chairs would simply say they were not prepared to miss their connecting flights and walk off. Once we had to get out the chairs to be lead to a waiting bus to take us to the plane, and I kid you not I was manhandled out the way by some of these people who had been in chairs to make sure they got a choice of seats on the bus and would be 1^st off and therefore 1^st on the plane. The laugh is I got the dirty looks for taking so long…………………….

So yes I love the idea of holidays, but sometimes wander if it’s all worth it.

The Indignities of hospital stays

2011-06-06T03:50:00.000-07:00

Can someone explain to me why it is acceptable to assume that on entering a hospital ward you are willingly and happily giving up all rights to dignity and privacy? You are assumed to have lost all inhibitions and somewhere along the way, intelligence.

I appreciate that wards of 4 or 6 are a huge improvement over the large wards of years gone by, but ward doors are left open all day, to enable the nurses to see into the wards, so trying to get some privacy is difficult. There is one wet room per ward of, say, 6 which contains the toilet, wash hand basin and the open shower. So unless you are in there first, you cannot get dressed as it is wet - every where -, and you even get your feet wet going to the loo! So you have to dry off and dress by closing your curtains. However, as the nurses open them without a second thought,it is not the most relaxing of circumstances. Even trying to put a little makeup on, sorting your hair, is all there to be viewed by the passing world. I have to admit to not having many showers during my last stay, and rarely dressed, for those reasons. I would wait till the cleaner had been before having a wash and dress as the shower room would be considerably dryer then.

I also get quite irritated by the fact that the doctors/ nurses, discuss the most personal of details with you with only the curtain closed (sometimes). They might think nothing of it, but I get a little embarrassed by discussing things in front of total strangers!!! It is also just as unsettling listening to this happening to others around you.

While I understand that nurses have to work on the premise that they are responsible for your wellbeing and take control of all your meds, I do so dislike being talked to as if I have a problem understanding them, even being addressed as “dear”. An example, I have eye drops and I asked to keep them so I didn’t have to ask for them all the time, yet when the nurse would come round with the drug trolley, she would always ask, “now have you used your eye drops dear?” aaaaaaaahhhhhhhhhhhhhhh!!!! I often had to grit my teeth and not make a cheeky retort!! At home you are trusted with, in my case, a supermarket carrier full of pescription drugs, yet when in hospital when you request something you are expected to make a case for why you should be given the painkiller, or whatever.

On my last stay I was given an additional pressie, MRRA, so was promptly whisked off to a room on my own. Apart from the inconvenience of antibiotics being given IV, I had my own shower room, privacy as I could keep the door shut and even close the blinds, I could watch TV till whenever, as I couldn't disturb anyone.....bliss! Still a tad extreme way of acheiving it.

Another day in the life......

2011-05-16T06:03:00.000-07:00

I had a few nice comments after my last blog, glad to hear it got people talking. From some of the feed back a few points come through very strongly.

Talking about your illness: People with long term chronic illness do need to talk frankly about how they are feeling and what they are going through, however rarely do. Main reasons seem to be, feeling guilty in case what you have to say might upset the other person, and so not much point as you wouldn't be able to be completely truthful, also because others often seem to find this kind of talk awkward and they are not comfortable to listen to it, or being afraid people will think you are being negative - cannot smile 100% of the time!! Think how often you have asked someone in this position how they are and you get a casual "fine" or similar response, and you just accept that........

Isolation: Many of us feel a real sense of isolation, if you live on your own, or your friends all work and you have had to give up work, you can often go days with out speaking to another person - thank goodness for Twitter/Facebook etc. This also includes a loss of independence as you are no longer earning and feel a sense of total dependency on others, the State etc. With all the changes in Benefits it is also becoming harder and harder to obtain any financial assistance, and the procedure that has to be gone through in order to make a claim are quite simply soul destroying.

So mix up lack of sharing of how you are really feeling, becoming isolated, stuck in the home for long periods of time, and having to go through demeaning interviews in order to try and claim any benefits, is it any wander many people are depressed and find it difficult to feel other than they are struggling on merely to exist, not really to live.

I know myself it can feel as though the flippin illness is all there is, as it controls so much. I rarely go far on my own due to fatigue, many friends are still working, and so much of my time is spent with my mother. While I love my mother and enjoy her company, we rarely do more than visit hospitals for one or other of us, or shops. Places I would love to visit are often places she has no interest in. I would love to go on holiday, but the uncertainty about how I might be,and the nuisance factor always make me hesitate over making any arrangements. So everything is a negotiation or a compromise with the illness.

But despite the many negatives, I feel many of us recognise that we have become stronger people because of this, maybe able to empathise more with people with illness. We are also able to laugh, at times a little inappropriately, but a dark humour evolves in time. Also you really do find out who your real friends are, because you are not always an easy person to be friends with! And, for me an unexpected and delightful extra - the friends I have made online, people I have never met yet I would be bereft without. People I can talk to openly, and can listen to with understanding. My thanks to them. We have our own problems yet they allow us to have a measure of understanding with each other, and pop in and out of each others lives.

Well off for another coffee and a few more pills.

For further discussion

2011-05-11T08:13:00.000-07:00

Points for discussion

Personal problems in relationships - with family

As this disease is not always the same, ie one day not too bad, next day cannot get out of bed, people find this hard to accept and perhaps to believe at times. This is often when the name calling of lazy occurs, which is of course so inacurrate as well as hurtful. It affects so many things, a few examples, planning outings, holidays & travel, distribution of housework (may seem such a silly thing to add, but believe me it can become a monster of a problem with all sorts of resentments-on both sides growing away), people thinking you just want to be the centre of attention.

Personal problems with friendship and social life

Afraid to make arranegments long term,in case you have to cancel last minute, the need to ensure there will be a seat etc takes away the ability often of sponteniety. Some how it ends up that everyone comes to you to visit as its easier, then they always visit you but forget to invite you to theirs when they are having a "do". You can so easily end up feeling such a nuisance to everyone,till you dont care much anyway!. If you have, at some point,had any problems with your jaw, or innards, you may not care to eat in public either.

Problems with work situations- time off - attitudes

The constant struggle to try not to have sick time off work in case it puts your job in jeapardy, especially when people do not understand AS, and cannot appreciate that you can be quite well one day, yet unable to get out of bed the next. This often causes cynicism in their attitude to you. If you do not have a senior/manager who is sympathetic, often you feel you are being monitored more closely than others, perhaps to show you cannot cope with your job, plus often passed over for promotions, again in case you cannot cope.

Coming to terms with disability

At some point we have to accept that we have a disability. Acceptance of your limitations and learning to live with them can be a very difficult thing to do. Women feel they are the home makers and can find it difficult to let go of control in the home especially. Learning to be kind to yourself is very important otherwise you can end up in a continous battle, fighting your condition and becoming depressed when you realise you will never, ever beat it. You must negotiate a way to live with it in terms of medical assistance to ensure you are as pain free as possible, and with your family to communicate when help is needed/to recognise when help is needed.

Dealing with the attitudes of strangers

People can often be either overwhelming in their need to help, or are too embarrassed to to try to help, so ignore your condition. Instead of irritation, it helps to either thank them and show appreciation for their concern,but explain what you can manage. For those who ignore your AS, that may work fine, or you may have to simply explain the situation to them. or ask people to slow down,or whatever and explain what you can manage. But trying to be understanding and not irritated - At some point the acceptance has to come that you have a disability, acceptance of your limitations and learning to live with them, to try and be kind to yourself otherwise you can end up continously fighting your condition and becoming depressed when you realise you will never ever beat it, you need to negotiate a way to live hand in hand can be very difficult.

This is an article I am submitting, so thought I might as well post here also

2011-04-25T04:32:00.000-07:00

Monday morning again, I see. Been quite confused with it being a week since I was last out of the house days have all kinda merged.. Have been very active in all things AS due to it is awareness month, and of course did my story, with my apples!! it was good to do, very long and with lots left out, buts it was covering such a long time span.Felt I had to keep telling non AS people the reason for it in case they thought I simply wanted to talk about myself...

Although initially depressing, I have gone through a few different emotions since finishing. I think it has brought home to me that I should care less about the house and more about getting my paints out etc etc to try and not get so frustrated by what I can't do and concentrate on what I can, enjoy and treasure the friends I have, both in reality and on line and worry less about the ones who drift away. I found it quite interesting as I have one friend who has been coming to visit me for months now, though she lives nearby,and I read on line about her having a BBQ. You see people think of you differently, if they have the time to come and see you, tell you all about their lives and problems, but rarely think about inviting you to their home, or social events........

Oh well I shall still go out with my make up on, hair as red as I can get it, wearing whatever I feel like, despite listening to a piece about how you should dress for your age - bollocks!! At my age I wear what I bloody well want to, why should I wear a tailored jacket and smart trousers, I prefer wide leg joggers and baggy linen, no fitted jacket,s nice light wool wrap, or long baggy blouse as jacket, that's me!! and discrete jewellery - no way hose - the bigger the better whether necklace, earrings or bracelet. Those of you who know me, know I love my bags, all colours and sizes too, and scarves, so many scarves........ I try to smile at people - when I can get my head up far enough to see them!!

Putting my feet up this afternoon and watching a couple of films, after current health issues, I was silly enough to do some ironing, so now both wrist supports are being worn, never mind they are colour co-ordinated!!!!

My Story with AS

2011-04-25T04:00:00.000-07:00

My Story

by Jackie Aitchison on Wednesday, 20 April 2011 at 19:57

In the begining....while a teenager had lots of aches and pains so back and forth to doc, "growing pains" was the diagnosis.Continued having constant pain in spine (mainly) doc after doc could find nothing wrong, until they basically said it was all in my head. Eventually diagnosed with Ankylosing Spodylitis as my GP belived there was a problem so kept sending me to different hospitals, different specialists. By this time,however, there was severe damage and fusion in spine which was why it was spotted on the x-ray.I was told they had not been looking for AS as it a mans problem!!! This was early 70's.

By this time I was married and in my early 20's. One of the things I was told at this time was that my spine was not strong enough to carry children. For next few years continued taking painkillers, had several stays in hospitals with major flare ups. At that time we had a Rheumatology hospital, the consultant there reviewed my drugs and expressed his concern and disgust that a)I had never been referred to them before, and b) that I had never been on anti inflammatory meds.These were prescribed and the pain was managed much better, but I had spent time in hospital, which probably could have been avoided.

Next major event was one New Years eve, I decided I was not going to drink as we were simply going round the neighbours in the wee village we lived in at this time, I slipped on the ice, was carried home by 2 drunk men but one was a fireman so knew how to carry me safely, next morning my GP, who had heard all about it, called and immediately insisted I got to hospital, it turned out I had smashed a vertebrae. It was contained so no danger, so I insisted on going home, I could have bed rest easily at home rather than in hospital, though I must admit it was very painfull.I was advised by my doc if I had been drunk I would probably have been far more relaxed and would not have done as much damage............

The next milestone was one day I had a strange eye, went to see GP, nothing to be seen, but 2 nights later he appeared at the house in his car and dragged me off to the eye hospital where I ended up staying for 1 week.He had been reading up about AS and spotted the connection, I had developed iritis (uveitus), and as it had not been treated caused a few problems, in fact had to be injected into the eyeball as the drops did not work. From then on I had iritis on average 3-4 times at least every year,in one eye or the other, and a few occassions in both at the same time, just had go straight to the eye hospital as speed is so important. Only had injections twice more and 2 other stays in hospital. Got to be very good at recognising the signs so I have had a few arguments with nursing staff who would insist there was no iritis, but when I insisted on seeing the doc, it would be confirmed! In over 30 years now have only been wrong once! They should by now read the bloody notes and listen to me. I am reactive to the steroid drops, unfortunately, and it causes the pressure to build up in the eye - this can turn into glaucoma. On one occassion I actually lost sight completely in one eye for a few hours, rushed to eye hospital where the doc were running around before giving me pills to take plus injection, pressure in eye had soared. My eyes are now very sensitive to light and I have lost some vision at the periphery of 1 eye, and will most likely need surgery at some point. Go to the eye hospital every few months for check ups, but can go anytime I have a concern.

A few years later when someone pulled out a chair as I was about to sit on it, I fell heavily and the next day was in great pain. I called out the doc who insisted it was a flare up of AS,or a bad bruise... I told him it wasn't as I knew my body. I was told later that was because I was not screaming and crying when I saw my GP, however when I went to see my consultant at the Rheumatology Hospital he took one look at my face as I walked in and sent me immediately to x-ray - break no 2. To stay on the same subject the 3rd time was 5 years ago, hoovering and bent down to pick up a bit fluff and heard a crack - same old same old - pulled muscle, torn ligament etc so sent me to a physio - interesting journey crouched in the back of a taxi-you have no idea the number of potholes in Edinburgh!! Anyway the physio sent me home as they refused to touch me as I was in so much pain, and made arrangement for an x-ray. They also insisted that they would come to me till they were satisfied with my situation so I wouldn't have to travel. They also instigated further investigations which eventually confirmed I have osteoporosis. This combined with the AS means I have to be very careful of falling over etc.

In December 1999 they decided to operate on my back as I was becoming very badly bent over-this meant opening me up shoulder to bum, breaking the spine in a couple of places, placing metal rods at each side of the spine and hooks to pull everything into alignment. The op was on the Tues and they put me in plaster on the Friday - should have been longer before the plaster but it was coming up to Christmas and the holidays. That was the worst thing ever. If you can imagine, I had to sit up being held by several people, I was in huge pain and dizzy, while they placed the big padded stuff round me from under arms but going up to throat, and down to my hips. The doc ran round with injections of morphine giving me an injection whenever I wanted one. The there was the scaffolding. I was carried over and laid on this structure, with pipes running under my knees and under arms, to leave the section to be plastered clear but all the rest supported and being pulled straight-there were material bonds round my neck pulling my head into place and the same on feet so back was being pulled straight. When they finished the plastering,I carried back and sat up as they had to make sure the plaster wouldn't be too high to choke me, or too low to hurt me when sitting. Then laid down on a trolley and sent to x-ray to make sure everything was in the right place. I was put on a morphine drip. I was in hospital for a month.

Had to learn to walk, to get washed without wetting the plaster etc etc. After a few weeks had to go back to hospital as there was a black discharge, turned out because the plaster went on too early there was an infection, the took the plaster off, but I had to remain plaster less for a week and had to say on the bed and in the wee room I was in as I couldn’t be moved. No further problems, but I had 2 further changes of plaster, each one a little lighter than the last, over 10 months. Then I was fitted with leather and metal strap on body brace, which was bliss as I could take it off at night and to bathe. That was used for another year.

In the meantime a hiatus hernia and underactive thyroid were discovered. I now know this is very common, but no one has ever told me before I read in in Jessica's literature. The thyroid and AS both have as a side effect, fatigue, that explained my continual exhaustion as I described it like walking through water all the time. They also discovered that I had a lot of irritation in my stomach and colon due to the years taking anti inflammatory drugs, and I was anaemic. Again, even more fatigue. So could only take painkillers, which really don’t do it for the pain.

However a few years ago I read about a very new injection which had been used for similar conditions, Enbrel, so spoke to my rheumy consultant and I qualified to be given it so started with initially twice weekly self injection, the dosage was doubled so it could be once a week. However the anaemia was becoming a problem and I have been rushed in several time for emergency blood transfusions - the average count is 120-150 for a woman, once I was 50. My GP gets excited of my count is in 3 figures!!

Despite several endoscopies, and colonoscopies, got the camera pill to swallow. In the end there was no obvious reason for the ongoing severe anaemia, just probably to with AS....., if in doubt...

So between the painkillers, the injections, thyroid pills, hernia pills, iron pills, calcium pills, osteo pills, eye drops, I get a shopping bag full with each prescription, luckily as I have thyroid medication I don’t pay for any prescriptions!.

There has been the almost inevitable depression at times, mixed with loss of confidence caused by the way I look (now very bent over again) and the feeling of being such a nuisance – cant walk far or for long, don’t want to go out much as if in a pub e.g. need to have a seat etc, so no longer have a social life. What I do have is people visiting me – which also is difficult as I worry that I can't manage to have my home in as good a condition as I would like. But friends will realise that.

The AS was also a contributing factor to the breakdown of my marriage as it is a very difficult condition to live with for the partner, especially when young and active. It also meant my working life was very difficult due to the constant struggle, and when the association I worked for merged with another one, they moved office which meant an hours travel each way with 3 change of buses. After 3 years I simply knew I couldn't go on any longer and one day just got up and went home. My HR manager and my GP were very good and guided me through it all so I was signed off sick for a year which meant I could claim early retirement on health grounds. I remember going to see my GP with trepidation, explaining the situation to him, and all he said qyuietly when I was finished, was, I cant believe it has taken you so long to get to this point, he told me he admired my determination to work, didn't have any idea how I had managed to go on for so long. Well that was it, several boxes of tissues later we got organised. Again I think this was because we are so used to people not really getting it (AS) and having to defend ourselves from being considered lazy or taking advantage of having AS (especially when I wasn't so bent as I am now). I dont get the Old age pension as I am too young, and I could not have been able to do it with out the support of my partner an my mother.

I had major surgery last year as I was finding it more and more difficult to breathe, I was taken off Enbrel while they investigated my chest/lungs etc, but what they found was my entire stomach and part of my colon had moved through the hernia into my chest cavity and were squashing my lungs, because of the bent back once they had started to move up they got sucked right up there. They intended to do keyhole, but had to open me up hip to hip in order to pull everything back into place, then stitch my stomach to the abdomen wall so it cant do that again! Unfortunately caught MRRA infection, my veins started to object to the number of IV's and so on, also throat infection as they haad so much of a problem getting tubes into throat due to lack of movement in neck and inability to open mouth wide. I was also told they did not find the hernia to close, as they couldn't get me flat enough, so after all that still have a hiatus hernia!.

I have now put on too much weight due the long time with little exercise, initially the breathing problems, then surgery, then winter. I am hoping to get out and about which together with a healthy diet should help me shed some of the excess weight.

Another problem which has manifested itself this last year or so has been a twitch at my left eye, which became stronger and moved down my face so my mouth is now a little twisted. I was given botox, several times but did nothing to really help. My doc suggested an MRI scan to see what was going on, it was all arranged that I go in to have the scan of my head, however as the table part is very hard and flat and the part for the head is actually lower, there was no way at all I could do it, we tried every thing we could but all we succeeded in doing was causing me a lot of pain! So their thinking caps are on again. So there are problems in so many ways, anaestetic, various tests, dentist etc etc I will not be surprised if AS is blamed for this too!

I got back on Enbrel in January, however I have been dissapointed with the results, certainly not as effective as it used to be. I have also noticed my hands are very bad now, some morning completley numb,(we are thinking carpel tunnel my knees are painfull when I gave been walking, feet and ankles painfull, and sciatic pain too. My neck is very bad as I am so bent when I am out walking I have to strain to try and look up all the time.

My eyes have been much better in respect of iritis since giving up work, I put that down to less stress and probably not working at a computer all day. Also we decided to use 2 different very mild steroid drops in both eyes continually as a maintenance programme.

These are the "highlights" of the last 40 years of my life to give you an idea of some of the trials. To many to go over them all after all it has been over many years....These days the depression is more disabling, partly because just so damn tired of it all and partly because in honesty I dont have much of a life. As I said earlier, no social life in the evenings, too much involved re planning how to get here, how to get home, will I be guarantted a seat when there also not fair to make arrangements in case I have to call off at the last minute...... During the day time, my friends all work, my partner now works nights so is sleeping during the day so I have to be very quiet and any visitors too...

I go out as often as weather allows usually with my mum, as I am not too confident on my own any more. I think the affect of years of living with a chronic disease, is often thought of in terms of the affect on the body but equally important is the affect on the mind, the affect on your family, the affect on your friends on your life. Your life becomes AS, it controls every aspect of it, people treat you differently, It affects every descision you make, it has to.
I would like to add here though, that having joined various groups, and starting my own for fellow AS' Peeps has been the best thing ever. So many fabulous people out there who are a pleasure to know. From all over the world,all generous in spirit, who listen to the moaning and support, who exchange ideas and treatments and hopes and dreams, My life is much richer for these new friends even though I shall probably never meet them. But the big thing, the HUGE thing, is they all know,understand and accept everything you have to say cause they KNOW. My only regret is that I wish this had been around in the olden days when I started on this journey, it would not have been so lonely and islolated.

Spring....Where are you??

2011-04-04T09:12:00.000-07:00

Not done this for a while so thought I should catch up a bit. Still waiting impatiently for Spring, some brightness and lightness and a little more warmth would be appreciated. This is both for health and for a little uplifting of the spirit! This dull cold weather seems to have been going around for such a long time now, really finding it difficult to find my mojo - still in hibernation I think....... I am much luckier than some of my AS friends, as I can get around, and usually can get out weather permitting. Still have quite a few grumbles, in particular my knees and my hands are new and unwelcome additions. I started a new group recently, we called ourselves AS Peeps. It is an open group so any one can pop in and read our chats. There are some fabulous groups for AS's around,but I wanted one that was more informal, where we could chat and get to know each other better and be a more personal support. A place where on a bad day we can come and find someone to listen, not only listen but really understand how we are feeling. I have met some tremendous people there, and we chat most days. For me the only down side is that so many of these great Peeps are over the pond so the time difference gets in the way, I miss out on being involved in some great chats, abut catch up every morning. Been going through the mill with a very close friend - her mother in law (MIL) had after years (40+) started to be nice to her, however she hadn't been keeping well, anyway to cut along story and all that, she ended up in hospital and seems to have gone down hill very very quickly, to the extent that she is now very vague and disoriented and there are concerns re her going back to her flat. Although it is part of a scheme and there is a manager, she may need more intense monitoring. However, my friend, having to deal with the hospital and all the various services involved, is slowly climbing the wall. It is a disgrace the attitudes, the care she is receiving in hospital by some of the staff, and such a worry. So after years of no contact with her MIL she now finds herself her cook, laundry service,bakery and generally the person she relies on most. Dreadful quandry trying to be involved,make sure she is ok, but retaining her own life, as she is not on the best of health, nor is her husband. It is frightening to hear how people can end up when dependant on others and hospitals and agencies. I must say it has given me nightmares... Enough for now, must go on another search for my mojo, however I did get a lovely card from my Twitter friend Tabitca this morning- beautiful handmade card with an uplifting message - thank goodness for friends xxx

Back Again

2011-02-17T04:40:00.000-08:00

As my dear friend Tabitca has started Blogging again, I feel inspired to do a catch up as I have not done one for so long.
Not a lot to tell actually, still in recovery from surgery in Summer, last hospital visit said to expect at least a year for full recovery - lovely! Still distended stomach so still feel like I look 6 months pregnant, even holding the bump at times, the way pregnant women do as it is still tender and sore!!
Having missed most of the Summer, it feels so long since I have seen any sun and felt any warmth, apart from GCH! So looking forward to milder and dry weather so I can get out and about, get the old body moving again, maybe the 6 months will reduce to 4.......
As it is an important birthday this year, my present to myself is to be the tattoo. I have always wanted one but I have made no absolute decision yet as to the form it will take. There is a tattoo artist on LA Ink, who had a purple rose like flower on her shoulder cap area, which I love, also I like butterflies. Another friend on Twitter showed me a photo of her butterflies on the back of her neck. It made me think that could be rather nice, as I walk so bent and looking at the ground, people see more of the back of my neck than usual, so could be nice. There is a good studio fairly near me, so must pop in one day, might even get more studs in ears, hell if I cant get what I want and like for my next birthday when the hell can I. I dont really care what anyone else thinks, I mean already - with 1 exception- I wear more make up than of my friends, and I definately wear more jewellery and bigger jewellery than anyone else I know, so what is a tattoo, or stud??
I must try to to this more often, helps clear the head.
Till the next time!

My Lost Summer

2010-09-03T15:23:00.000-07:00

Not been here for a while, and for those who read my rambles in FB or Twitter, you will be aware of the summer that I missed....
For some considerable time I had been investigated by all sorts of docs due to my difficulty in breathing that was getting worse and worse. Eventually they discovered that my hiatus hernia had become a HUGE hiatus hernia, in fact they even changed its name to an intrathoratic stomach!! In other words instead of a little stomach sneaking through an opening into the chest area and causing acid reflux, my entire stomach and even part of my upper colon were all in my chest cavity, which combined with my bent spine meant that my poor lungs and heart were being squashed, hence the problems breathing.
They eventually agreed to operate, despite the dangers because of my other problems and of course the bent spine which also causes my neck to have very limited movement - not good news to the anaesthetist!! They hoped to manage keyhole surgery which would be 1/2 nights in hospital, or of they had to make a bigger incision 5/6 nights.
I was in surgery for 4 1/2 hours and straight to the High Dependency Unit where I stayed for 4 nights. The tubes down my nose had to stay in all this time, and I had to have oxygen all the time also, plus had the morphine on demand. They didn't manage they keyhole surgery - in fact cut accross my waist from one side to the other.
The stay in the HDU was a nightmare, I have no idea what were dreams and what might have happened, I seemed to think I was in different places each night, 1 night I was convinced it wasn't really a hospital at all and discussed my fears with some of the nurses, or did I??? Anyway they then sent me to the ward, however they then discovered I had a blood infection and sent bloods off to the labs. The results came back I had MSSA (same as Lesley Ash had) so I was whipped away to solitary. The antibiotics had to be administered by way of an IV, and there was a minimum time before I could get pills instead. they also discovered an infection in my throat, and I had a bad reaction to the staples, all 34 of them, they started jumping out my skin!!..... So in there for over 2 weeks. My veins also decided to misbehave, and when I came out both arms were covered in bruises. The same needle could only be used for a limited time, then they had to put in another one. My veins became such a problem I had one in my foot- it was also part of the reason I actually was allowed out of hospital with the antibiotics in pill form a little early than the lab wanted but the situation with my veins was so bad.
Now discover that the recovery period is 3 - 6 months, and now 6 weeks later my stomach is still really swollen,think 6 months pregnant, lots of very hard bits around the wound-doc says this is blood - and lots of areas where I have lost feeling. This should all settle within the 3 months period. As the wound is at my waist difficulty in wearing clothes as they all rub the wound, plus swollen and really hard above the wound so wearing a bra is uncomfy after a wee while.
So apart from walking around the corner- literally-and a fab day out when my friend took me out in her car this week, I haven't left the house since my journey to hospital on 22 July. Oh and my birthday was spent on there too!!
I have to try to be patient, and not push it; as an example I hung put a few bits of washing this morning, which meant stretching and boy I am paying for it now. I have had such pains in my wound area since. However - as the surgeons explained - they had to really push and pull my internal organs around to get them back to where they should be, then had to stitch them to my abdominal wall, so there was a lot of bruising and stitching etc going on inside.
Hoping I might manage out a bit further next week and get into a shop!!! I mean online shopping is fab, but nothing compares to actually having a good rummage.
So really summer was just beginning as far as good weather was concerned, and now on the way out.......boo hoo. Still one good side was that I have lost around14lbs while in hospital and the same when weighed myself last week, since I got out. Just not been hungry and cant eat a huge amount, but that is fine by me.
Back to see consultant on 1/10 so will see what he has to say, however everyone has been very pleased, as I do still have my other health issues including the main condition AS, so I am going through a balancing act as operation needs me to rest and heal, AS needs me to keep mobile or I will end up in pain - still plenty of painkillers!!
Well dont know if anyone will be interested, but I just needed to put it all down, I know I always play down my health issues, but I must say difficult to do it these days, I have even on a couple of occasions e.g. went round the corner to get nails sorted, and the lady was firstly astonished at my age, then when I was telling her hospital I just felt that she thought I was exaggerating, so I just pulled my top up and showed her the wound, when she picked her chin up she was speechless, silly I know, what do I care what strangers think, but because I had made an effort and taken a long long time (for me) to put make up on and hide dark circles, put some colour into my cheeks, she didn't think my situation could be that bad!!!!!

The end of smoking

2010-03-27T02:54:00.000-07:00

Well today I reach day 6 of no smoking!! While I am very proud of myself, I have to admit to not really being tested yet.

I think that like dieting, you have to be in the right frame of mind and be ready, otherwise it doesn't work.

I really needed to do this for health reasons, my huge hiatus hernia to be precise. I have been having problems with breathlessness and when I lie down in bed at night I sound like a set of bagpipes tuning up!! Apparently most of my stomach is in my chest cavity and squashing half of one lung, combined with my bend back which of course causes constriction on my chest and chest expansion, and apparently I have a veru small chest cavity anyway - well its all getting a bit crowded in there. Surgeon wont consider an op at the moment as it would need to be such a major one and I am a problem to operate on - because of the situation described!

I manage the HH quite well with what and when I eat etc, and the xray/cat scan all show lungs are healthy, so I owe it to myself to quit smoking. So nearly 1 week in have developed horrible cough, cannot sleep- but I am told this is all quite normal. Onwards and upwards!!!!

Saturday moan

2010-02-27T02:22:00.000-08:00

Well that takes the biscuit!!

My OH works nights, which means he comes in at 6AM, and immediately goes to bed till early afternoon - so every morning I have to tiptoe around the house so as not to wake him. Once he wakes up I can run around and do whatever I have been waiting to do.

I get woken by him coming home most mornings, yet when I go out he always says that he heard nothing- not surprising as one day I was out and forgot my keys had to buzz, phone for around 10 mins before he heard me!!!!

Didn't sleep very well last night, so Milo (cat) and I had a cuddle, I had cuppa and read for a while,so had just fallen asleep when OH arrived home. I had a cuppa with him so I could tell him mum didn't need any shopping. This means he only has ours to get so he could choose when he would prefer to go shopping. He decided to have a sleep till 10 before getting up and on.

I managed to have a doze (most unusual for me) and woke a wee while ago. Made cuppa, switched on laptop to make sure mum hadn't realised she did need something, when OH gets up wanders in asks if I want a cuppa and then in a sarcastic voice ask if I want the cuppa in living room or in my bed!!!!

I am happy warm and comfy here so staying for a while yet - and why not!!!! He is going shopping then will be back home into pj's and into his bed to watch horses, footie, rugby whatever sport is on, then will go to sleep - so from around 3 till 8 I will have to be quiet, tiptoe etc also eat alone as I need to eat early with HH.

As I had to retire early on health grounds, some how the fact that he works and I don't, means that my life is of no consequence- its fine I have to tiptoe around while doing all the house work-except dishes on Sunday morning,(although that doesn't include rinsing the sink, washing down work tops, drainer top etc etc) As he only has a couple of hours in the afternoon to play on the computer-watch horses- I can deal with the house, after all I have nothing else to do! HELLO I had to give up work due to my health!!!! I end up doing all sorts of things I shouldn't do,then have to hide the fact from mother or I would have an 80+ year old down here doing the work!!! However he is totally oblivious to dirt,untidyness etc or if he sees it just assumes HE doesn't have to worry about it as it will be dealt with!

So I shall finish my coffee and ciggie before getting out of bed, he will be off to hunt for food - OK go to Tesco just round the corner- and then I will run round with hoover (piles of cat hair everywhere this morning) put a wash on, tidy, do any dishes and wipe down,clean sink etc and be sitting comfortably when he returns.......... and then will relax with papers and V+ TV.

OK moan over

Have a fab Saturday everyone

Getting work done

2010-02-25T03:04:00.000-08:00

Why is it that when you get around to organising work to be done in the house, you suddenly find yourself with a whole load of cleaning to do!!

I have a trellis out back leading from the window to the ground, used as a ladder by the cats. Originally done for a cat I had some time ago who was old and not too well, so that she could get out and in easily as the window cill was too high. However it is now falling to bits and dangerous for my current pair of cats to use safely. Also the cat flap got broken some time ago when they decided to have a fight in the cat flap, I am getting it replaced also.

Realising I am not sure how he will fit the cat flap ie from the outside or inside, decide to move the laundry basket to create room-however as it has not been moved in quite some time, realise the floor needs to be swept then washed. Of course then notice the tops of the washing machine and dryer are a bit grubby, decide to move the washing products and packs of cats food to wipe them down. By the time I have finished I see the kitchen sink is really dirty, has been a bit stained looking for some time so get out the various cleaners and start scrubbing. By this time the kitchen floor is looking the worse for wear so have to clean it. Rest is needed by this time along with a couple of painkillers.

Looking around with fresh eyes after a rest, realise the hall carpet is filthy - the cat with long black hair insists on having a good scratch in the hall and leaves big chunks of hair there daily!
So out comes the hoover.............

After all that realise when he is fitting new door handles that the edges of the door round the glass panels are filthy- oh the shame!!!

Well he has been now so all I have to do is put everything back after realising he is a man and notices NOTHING!!!!!!

Ok cuppa and feet up and watch Tv.............

2010-02-01T10:26:00.000-08:00

Well another nervous visit to the hairdresser, however was brave and went with my thoughts of having a complete change. Have had blond highlights forever.....now red, bright bright red.....and I love it!!

Will take a bit of getting used to, have been in a state of constant surprise when passing mirrors and realising it is me.

I know it is ridiculous, but when you are 4 inches shorter than you started out because of your posture; often struggling to walk with stick because of bent back or pain, or just the ever present exhaustion, made even worse at the moment because of the huge Hiatus Hernia (I am told most of stomach is in chest cavity), so with little chest expansion because of bent back and half of a lung being squashed by stomach am now huffing and puffing all the time in an effort to breath;I use hair-makeup-jewellery-handbags, to take my mind off it. Also people tend to be distracted by these other things going on and don't notice the rest - that may be wishful thinking, but allow me that!!!

Anyway tomorrow will start with some experimenting with make up to go with new hair colour. Unfortunately mother was getting her highlights done today also, and there are none to be seen!! She is having to go back to get them re-done on Friday.....

So its 6.40 on Monday evening and I am all tucked up in bed!! so bloody tired, plus OH will be getting up soon for bath, and snack preparation before night shift - I prefer to be out of the way, makes life easier. I might tiptoe around all day when he is sleeping, but when he is up there is no consideration shown. Not sure if it usual lack of thought shown by men, or if it is a touch of the "I am the only one working.". That's when I would really like him to walk in my shoes for a day, both in terms of health issues, but lack of being able to do whatever I want- I often don't have any meal in the evening in case I wake him up...oh moan moan. Try not to do too much of it but at times it is hard not to.

Well will be off to see who is around on Twitter to chat to.

Some New Thoughts

2010-01-13T18:20:00.000-08:00

Thought it had been a while since I had a ramble so here goes...

Feeling very down, after all the health issues since the beginning of December, ending with the bad reaction to antibiotics - combined with the weather have managed to be stuck in the flat for over a month. Put paid to Christmas, of course, but not a lot could be done about it. The wore bit now is I have been left with a sore and stiff neck.

For most people this would be a real pain (!) but with my AS it is very depressing. My posture, bad enough at the best of times (AS causes a bending of the spine)is now just terrible. Bent right over so cannot raise head to look much further than the floor in front when walking.

Most people will assume that as I am so bent normally this wouldn't be too awful, but I can assure you it is a huge deal. It makes me feel such a freak, I know people will all be looking at me and when you get the "aww poor soul" look it just brings it home how awful I look. Ok maybe I shouldn't get so upset at how I look, but when you are all distorted like this it is bloody painful too. Not pain - in this instance- in the neck,though this is pretty bad, but when you have walked for a wee while its all the other bits of your body that are having to compensate.

So as I have had to cancel a hairdressing appointment, my next one on 1 February, has had me trying to think what to do. Need cheering up and fancy a change. Had blonde highlights for most of my life so fancy a change. After some chat on Twitter I am thinking of chocolate brown with damson/plum highlights. As I remember telling a work colleague a few years ago, If I keep the hair looking good, wear the make up, chunky/funky jewellery, then it helps to keep people looking at those things and not the rest of the twisted old body!!

Got a meeting with surgeon in a couple of weeks, will be interesting to see what is decided. My hiatus hernia has caused,I am told, most of my stomach to now be settled in my chest cavity,which combined with my bent back means that I have been finding I get breathless very quickly. The problem now is that as we have checked via xray's and cat scans there is no reason apart from the above for how I have been, should we operate to shove the stomach back down to where it should be. One of the main concerns,as always,is that because of my AS I have very little movement in my neck (even less at the moment) which make it difficult for the anesthetist. Oh well will see what he thinks.

If weather ok later today, hope to get dressed and wander round the corner. Have a fabulous wee shop which sells jewellery, handbags, scarves, candles etc etc, usually try to avoid it as there as I always seem to see something I just must have. The last time was a handbag - but it is gorgeous and I have lost count of the number of times I have been asked by strangers where I got it. Still could do with a little cheering up.

It would be so nice even just to chat. The owner of course knows me quite well by now and we usually have blether, though not very good at this at the moment. When I am going through a bad time, pain wise, I do tend to withdraw, even on twitter, watching and interested just not joining in much!!

Well maybe I should try again to get some sleep.

Catchup

2009-05-20T08:42:00.000-07:00

Ok time to do another blog.

Been quiet recently, not sure why, just feeling a bit down and everything a bit of a struggle. Not been out much or been with other people so I find I quickly get out of the habit of chatting – or blogging or even twittering!

With reference to earlier blog re hairdresser, I have had to throw in the towel re current one, hair never right and condition a mess due to colour having to be done twice, so decided today to take the bull by the horns, as it were, and make decision re new one. Went by atmosphere and how busy it was to choose new one, but of course no idea of the individual who is cutting my hair, in 2 weeks time!! But the salon was busy and buzzing, and the people all looked happy, and the hairdressers all seemed to be male and not kids.

So at the moment I am still at the excited stage, which as you will know from previous blog, will soon change!!

Doc is arranging for me to get Botox, my left eye had started to twitch several months ago, and it has been steadily getting worse, till I now feel like I am pulling some strange twisted faces at time. There is no medical reason he can find, so they are going to Botox the area so it will stay still – just hope they do both sides!!

Got appointment for physio, which is good, although have waited a while and can’t see them for triage appointment till 8 June. But hopefully will help left arm, which is also steadily getting worse. Just part and parcel of back problem.

Red blood cells are doing ok at the moment, but doc trying to get the weekly injection I give myself to also include iron. This will help with red cells, and also be much easier than taking iron pills or syrup all the time, as they really upset the tum.

Was also at eye hospital and the eyes are doing ok, and the floaters I can see in my left eye, are bits of old cells coming away from the jelly bit of my eye. I have had so many incidents of my eye problems that there has been a build up of these old cells, and they are detaching, but will eventually go away.

So all the bits are being sorted out, and hopefully mother and I will get away for a few days or so up North to relax. Been looking forward to getting away for a while, but need to get all the above sorted as no point of going away and being miserable etc etc

Well thats caught up for now, off a drink and ciggie!!!!

My addled old bod

2009-04-24T15:33:00.000-07:00

Been thinking about all things health orientated, so decided to review my situation.Started with having constant pain in spine (mainly) doc after doc could find nothing wrong, until they basically said it was all in my head. Eventually diagnosed with ankylosing spodylitis. By this time there was severe damage which was why it was spotted on the x-ray-the vertebrae fuse together and cause bending forward which in turn causes neck pain among others. By this time I was married and in early 20's. One of the things I was told at this time was that unless I could not live with out children this idea should be given up as my spine was not strong enough.This went on for several years, taking painkillers and anti inflammatory. Then one day had a strange eye, went to see GP, nothing to be seen, but 2 nights later he appeared at the house in his can and dragged me off to the eye hospital where I stayed for 1 week. A side affect of the AS, I had developed iritis (uveitus), and as it had not been treated caused a few problems, in fact had to be injected into the eyeball as the drops did not work. From then on I had iritis on average 3-4 times a year, just had go straight to the eye hospital as speed was important. Only had injections twice more and 2 other stays in hospital. Got to be very good at recognising the signs I have had a few arguments with nursing staff who would insist there was no iritis, but when I insisted on seeing the doc, it would be confirmed. In over 30 years now have only been wrong once! They should by now read the bloody notes and listen to me. I react badly to the drops, unfortunately, and it causes the pressure to build up in the eye - this can turn into glaucoma. My eyes are now very sensitive to light and I have lost some vision at the periphery of 1 eye, and will most likely need surgery at some point. Go to the eye hospital every few months for check ups, but can go anytime I have a concern.A few years after the AS was diagnosed, at New Year, I fell on the ice, and landed on my back, I was carried home by a doctor and fireman who lived nearby and put to bed by my neighbour, a nurse. However in the morning in a great deal of pain, so went to A&E. It was chaos, being that time of year, and I was treated as a nuisance by the nurses. However, after x-ray, it was discovered a vertebrae had smashed. They tried to keep me in, but the only bed was in a ward full of elderly people moaning-as the only treatment was bed rest, I was discharged. That was the first time. Second time was a few years later when someone pulled out a chair as I was about to sit on it. I was told later that because I was not screaming and crying when I saw my GP, they decided it could only be bruised, however when I went to see my consultant at the Northern Hospital he took one look at my face as I walked in and sent me immediately to x-ray - break no 2. To stay on the same subject the 3rd time was 5 years ago, hoovering and bent down to pick up a bit fluff and heard a crack - same old same old - pulled muscle, torn ligament etc so sent me to a physio - interesting journey crouched in the back of a taxi-you have no idea the number of potholes in Edinburgh!! Anyway they sent me home and made arrangement for an x-ray. They also insisted that they would come to me till they were satisfied with my situation. They also instigated further investigations which eventually confirmed I also the old bones had gone and had osteoporosis. This combined with the AS means I have to be very careful of falling over etc.In the meantime discovered a hiatus hernia and underactive thyroid. The thyroid and AS both have as a side effect, fatigue, that explained my continual exhaustion. They also discovered that I had a lot of irritation in my tum and guts due to the years taking anti inflammatory, and I was anaemic. Again, fatigue. So could only take painkillers, which really don’t so it for the pain. However a few years ago I read about a very new injection which had been used for similar conditions so spoke to my consultant at the Western - I qualified- so started with initially twice weekly self injection, the dosage was double so it could be once a week.However the anaemia was becoming a problem and I have been rushed in several time for emergency blood transfusions - the average count is 120-150 for a woman, once I was 50.In fact it caused a heart murmur because of the all the extra work my heart was having to do. This was also a problem as after going to GP with a list of my symptoms, including breathlessness, dizziness, exhaustion, heart thumping, the first GP sent me home with stress. When I went back a different GP immediately gave me a blood test. By 5 that evening I got a phone call telling to get to the WGH immediately and to take an overnight bag. When chatting to the doc there I told him why it had taken so long to get to the stage of getting a blood test, he asked to see my list-as I had typed it out, I had taken a copy – he read it through and said that if any doc on his ward had not immediately taken a blood test with this list he would get rid of them – he went on to ask if he could keep it as a training tool.

This is currently being investigated, and a few weeks ago, after several endoscopies, in both directions, got the camera pill to swallow, still awaiting the results.In December 1999 they decided to operate on my back as I was becoming very badly bent over-this meant opening me up shoulder to bum, breaking the spine in a couple of places, placing metal rods at each side of the spine and hooks to pull everything into alignment. The op was on the Tues and the put me in plaster on the Friday - should have been longer before the plaster but it was coming up to Christmas. That was the worst thing ever. If you can imagine, I had to sit up being held by several people, I was in huge pain and dizzy, while they placed the big padded stuff round me from under arms but going up to bottom of throat, and down to my hips. The doc ran round with injections of morphine giving me an injection whenever I wanted one. The there was scaffolding I was carried over and laid on this structure, with pipes running under my ankles, knees and under arms, to leave the section to be plastered clear but all the rest supported and being pulled straight-there were material bonds round my neck pulling my head into place. When they were done, carried back and sat up as they had to make sure the plaster wouldn't be too high to choke me, or too low so I couldn't sit properly. The laid down and sent to x-ray to make sure everything was in the right place. I was put on a morphine drip. I was in hospital for a month.

That was an interesting stay, with various problems. I complained that the arm with the drip felt funny and I was in considerable pain. They turned up the flow of morphine, eventually I lost all feeling in the arm and it became very swollen – the morphine was going straight into the muscle!!! Had to learn to walk, to get washed with wetting the plaster etc etc. After a few weeks had to go back to hospital as there was a black discharge, turned out because the plaster went on too early there was an infection, the took the plaster off, but I had to remain plaster less for a week and had to say on the bed and in the wee room I was in as I couldn’t be moved. No further problems, but I had 2 further changes of plaster, each one a little lighter than the last, over 20 months. Then I was fitted with leather an metal strap on body brace, which was bliss as I could take it off at night. That was used for another year.

So between the painkillers, the injections, thyroid pills, hernia pills, iron pills, calcium pills, osteo pills, eye drops, I get a shopping full with each prescription, luckily as I have thyroid medication I don’t pay for any prescriptions!.

There has been the almost inevitable depression at times, mixed with loss of confidence caused by the way I look (now very bent over again) and the feeling of being such a nuisance – cant walk far or for long, don’t want to go out much as if in a pub e.g. need to have a seat etc, so no longer have a social life. What I do have is people visiting me – which also is difficult – see moaning blog.

Well enough for now, need a drink now I think!!

Moans for the day

2009-04-21T04:07:00.000-07:00

Feeling a bit fed up today so decided to put down my feelings.

I had to give up work a year and a half ago due to health problems, which was fairly traumatic, partly because of the feeling of stress before I left due to a really horrible atmosphere in my work place, and partly because it was having to admit I couldn't struggle on any more. Luckily I had great help from my GP and of course family. There was, of course, the basic changes to life style, including no purpose to my day and lack of money. My work pension is peanuts, previous work pension even smaller,no state pension as too young. Discovered I qualified for Disability Living Allowance, which helped, even getting a free travel card sue to disability was a great help.

At first I quite enjoyed it could have music on and potter around to my hears content. Make as much noise as I wanted and take my time to try and keep the place in order. However soon after my partner had the chance to change his position at his work to gain extra money, but more importantly to work inside. I supported him in this- after all he had fully supported me with my changes, but I have to admit I really didn't fully understand how this would impact on me.

He arrives home around 5.30AM this is of course me wide awake then, although he has his own room-easier all round for all sorts of reasons, he then goes off to sleep. So I then find myself with several hours of tiptoeing around trying to make as little noise as possible. He gets up in the early afternoon which is then spent in his room on his computer or watching sport on his TV. This my time to do anything noisy -hoovering etc. He then goes back to bed around 4.30 till 7.30, so back to creeping around. We each have our own meals at night as he eats much later than I can. Then he is off at 9.

He also seems to feel that as he is working and I am not, that the house is up to me. He does little and sees nothing. Dirt, untidiness are all things he is completely unaware of. He forgets I gave up work as I couldn't keep going physically-I mean the last time I broke my back (that's right the LAST time) was hoovering and bent down to pick up a bit fluff and CRACK! It gets very frustrating just trying to keep on top of things and the standards are not as I would wish, but have to accept. I cope most of the time, but all it needs is for someone to be visiting me and I get so uptight. I have a friend visiting tomorrow, and have started worrying what she must think...... silly really as she knows my situation very well.

Then there is the general shabbiness, but although I have to money to do some work, afraid to spend it as so little coming in.

Yesterday, was so good, the sun was out so I was able to get out and about, met mother, had coffee, look round the shops, bought a couple of wee things, and it felt like I was on holiday. Today back to rain, so sitting in living room - quietly-and churning a bit...

Looking forward to the improvement in the weather as it does mean I can escape - that is the correct word - although often I come home pretty knackered, and might have to go to bed, at least felt part of the world out there for a while!

I am waiting for some hospital tests, which when sorted out, will hopefully mean that mother and I can get away for at least a long weekend - up North, and have a wee break. No holidays of any kind last year due to health issues.

Well enough moaning for one day!! One of the good things about Twitter is being able to chat or just "listen in" to others, and to know others are interested in you..Byeeee for now

Back A

2009-04-08T04:24:00.000-07:00

Back Again Back from the hairdresser, with newly cut hair. Why is it always such a trial?? How I envy those who go and come back with fabulous new locks. I always have to come home, brush it out and wash it myself, I certainly couldn't be one of those people who go before a big occasion to get their hair done...There is all the excitement, and anticipating before hand, which turns into apprehension and out right fear on the day. And why do they contradict you when you explain your hair and how it behaves -I HAVE HAD THIS BLOODY HAIR FOR A LONG TOME AND KNOW HOW IT BEHAVES......... they then do their own thing, and then have to reluctantly agree with what you told them in the first place.I have managed reasonably well today, whew!! His training in improving, and he actually started off by telling me what he would be doing with the colour the next time (only a cut today) as " I was right!!!" and he could see that now.I shall have a wee rest and probably wash the hair later - so much gunk on it that neither rain nor wind made an iota of difference to it.Well that's off my chest.

Testing testing

2009-04-07T12:39:00.000-07:00

Well having a boring night on TV so have decided to take the plunge and attempt a blog! One of Twitter pals mentioned she had done her first one, so what the hell!

It has been a bit of a boring day, managed to get out for a couple of hours yesterday and the old bones are punishing me today. Been a while since I was out for any great amount of time, so it was to be expected. So lazy day, bit of pottering, made some soup(fabulous, even if I say so myself!) and had to get some crumpets. One of my Twitter pals was discussing them this morning and I could just not get them out of my mind!

Have an early start tomorrow as I have a hairdresser appointment at 9.30. It is the usual situation - excited at the prospect, then a little apprehensive, then remembering that I am usually disappointed. Oh well - we shall see what tomorrow brings.

All being well might jump on a bus and go out to one of the shopping malls. I quite enjoy them as there are plenty of places to have a seat and a rest, as well as the shops - of course. The biggest problem at the moment is that Edinburgh is being dug up, so all buses that go through the centre of the city are diverted. Can be quite interesting figuring out how to get to where you want to be. Makes it more exciting I suuppose.

Thinking out Loud

Masquerade of Words up catch up blog, probably more of a ramble….

Result

Another one of those days

Frustration

Liebster Blog Award

Rambling

Job Well Done

Just one of those days

One of those daysI

For M O W : Self Esteem

More Reasons to be cheerful

Need:

Reasons to be Cheerful

Now this is what I call service

Mini blog

Angry old woman

Blog for MOW - Symptoms of AS

9/11/2001

Friday again

Social Outings

Jackie's Story- updated

Not so bad really.........

Re previous blog

Pondering

Sleep

MOW – Weathering the Storm

The little things

HOPE

Sometimes it's the little things......

Guilt

You know what it’s like when you have one of those days…

We never learn do we????

More wonky body stories, or the story of my breast screening

How they cope with wonky bodies in hospital

Being an advocate for Ankylosing Spondylitis

Guilt; such a little word that encompasses such a lot!!

AS and clothes

Travel with disabilities

The Indignities of hospital stays

Another day in the life......

For further discussion

My Story with AS

My Story

Spring....Where are you??

Back Again

My Lost Summer

The end of smoking

Saturday moan

Getting work done

Some New Thoughts

Catchup

My addled old bod

Moans for the day

Back A

Testing testing