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

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

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…

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????

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

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

I did a blog last night on hurdles to be overcome at hospital, as I was thinking about my visit today to the breast screening clinic. I was there this morning and I can honestly say, it was pure and utter torture!

I had 2 nurses, the more senior one had seen me the last time, so was all ready to deal with me and my problems. She had the chair ready, as we had found it was impossible to “do” me while standing last time.

So, there I am sitting in the chair being ordered to sit up as straight as I can - my spine is almost totally fused and bent - so me and straight do not go together!! My neck has little movement too, so imagine trying to sit up straight as possible, and twist round from the waist and hold head up and twisted back out the way of the machine…………... After much pulling and pushing they get you as near to the position as they can then the machine comes down and you feel as though your breast is going to explode!! (I would remind you that my back is made od lots of metal work which gets in the way of twisting round, and my middle section is still very tender of the surgery last year). And that is just stage !, they then have to do the other side, then full frontal mode, which was just the same but at a different angle on both sides. Back, neck and hips are clicking and having spasms, shoulders aching, sore head with it all and then even the bloody boobs are sore and tender!!!!

On the positive side, the nurse did say that I should think very very carefully when I get the next invite, if I want to go through this again, she admitted she had found it stressful too knowing how much she was hurting me. The alternative would be to attend GP’s practise nurse for exam when needed and if they wanted, they could organise for an ultrasound exam to be done instead of the one I had.

After all that, I waited for the pictures to come back, and although the quality was good, there wasn’t 100% of my breasts in the pictures.

Oh well………………………

So more painkillers to see me through the next day or two, might even have a wee scotch now, and just as well I stopped smoking or I might have gotten through quite a few!!

How they cope with wonky bodies in hospital

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

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.