Update, as been missing for some time

I realise I have not been blogging recently, for quite some time in fact. I have some excuses, I decorated my living room and had to deal with all the chaos that went with it. I had hardly caught my breath when there was water ingress into my bedroom from flat above.

This resulted in the insurance company arranging to empty my bedroom and store the main furniture for me. The smaller stuff I kept – just for practical purposes, so the rest of the flat was in chaos – with me camped out on my settee for almost a week and a half.

The ceiling was brought down and plasterboard put up, then it all skimmed. A wait for 4 days till dry enough to paint the ceiling and the walls, they didn’t do the wood though. So, as soon as semi organised, got my painter to come to do the white wood work – but only where it was seen (I could not bear any more upheaval!)

Now just waiting for the new curtains and blanket box I have on order to finish that room.

I had been planning to update my kitchen, for practical reasons – easy to clean and easy for me to work in, and after all that has been happening, I decided I had better bite the bullet and get the work done now, because any delay and I might never do it!!

Plans have been agreed, as have cost, and it all begins in early December. I have found a home for my dresser, which should be going this weekend, then next week the big clear out begins! My ‘how to be positive’ attitude is that I will at last manage to have a good clear out. You know those drawers chock a block with junk , tins which might now be out of date…etc  Will chuck out or  send to charity shop whatever is appropriate. Then last night I thought I would plan what will go where, to try to be as sensible as possible. If I changed my mind once, I changed it a dozen times! Keeps me out of mischief!

I am not looking forward, in truth, to all the work involved. There is the clear out, the chaos as stuff is stored, the trying to live for 3-4 days with a kettle and microwave. Then, of course, putting it all back…… then the vinyl to be chosen and fitted for the floor, then painting.

I have settled for a slightly adventurous colour scheme – being tired of always playing safe – so units are high gloss white, splash back and work tops black, the vinyl to be a slate tiled effect. Then all the walls to be pillar box red!!! I have bought an oil cloth for the table, in a Japanese design with white, black, grey and red. The ceiling is to be a soft grey. I am being brave and doing what I want – from the quiet response I got from mum and OH, I am not so sure they are as enthusiast, but hey my kitchen, I am paying for it!!

Through all of this there has been a bit of obvious stress, and I have been plagued by neck pain, however new meds are being taken which seem to be helping. I might even consider getting in professional cleaners to go through the flat after kitchen done, and the hall painted (that will be the last thing to be done) If I can get the hall done before Christmas. That will then be finished, finito, done!

It’s funny, that even though you are well aware of your limitations when you have a chronic disease, you forget that your condition will evolve and worsen in time. This was what caused the decision to carry out the kitchen work, as I have found that I have real problems getting stuff out from base units, or from too high in wall units. I am going to have the deep double drawers in some of the units so I can have the likes of crockery much easier to get to. As I have difficulty reaching to clean, the gloss white doors are easier to clean as dirt tends to slide off and so on.

I hope this means I will start the new year with my flat as good as it can be with my financial restrictions, as I can’t see anything major being done again.

Apart from all the above, life has been very quiet, cats are great, my hair is still red!

Mojo where art thou?

As my friends here know my mojo has run off somewhere recently. I have no idea where, but one day it had just had enough.

I have been finding it quite difficult because of that, as I have felt quite low, and unable to cope with things I normally just get on with. I have gone through one of those periods of just feeling fed up with my lot, and it is difficult to speak too openly, as I would hate to offend anyone who can do far less than I can etc.#

I have been finding it very hard not getting out combined with the rubbish weather. This is mainly because I can, on most days, carry on around the flat and feel not too bad. And that is so frustrating, because I know that by the time I would get to the end of the road I would be hot and bothered, breathless and clutching my stick and bent really badly! But, within the confines of the flat I feel like I should be able to do more. I think the flat size is the size I can appear ‘normal’ in, if you know what I mean, just a little bit more and I have to accept I have limitations.

Despite the fact I live within walking distance of Princes Street, I can’t get out easily by bus because most of Edinburgh is being dug up partly  general road works but centrally because of the  tram works. Buses are all to pot, so to get anywhere requires several buses and – for me – a bit of a walk, in both directions don’t forget!  Of course I would have to figure out how to get what buses initially as they have all changed routes! So the alternative is stay in till you are howling at the 4 walls, or go by taxi! And I can assure you taxi costs in Edinburgh are expensive. To get to mums house costs at least £7 and that is for 10 minute cab ride, and again would need to do both directions.

So all of this is just dragging me further down, oh to have a car and a driver (I do still have a license but because of the lack of mobility with my neck I cannot possibly see properly) there is this feeling of , this is it, my life in 4 walls! I can’t remember the last time I went out for a meal, went to the cinema, went to an art gallery, did something I really wanted to do, not just what is available to do that I can manage. I don’t mind too much not going out at night, to be honest as it would be just too expensive as it would be taxi’s everywhere, and I am too tired these days by early evening, but it would just be so nice to be able to do something different, something fun, go for a drive, go down and feed the swans and ducks, …..know what I mean.?

I love reading, and my eyes are giving me problems and headaches, I used to love knitting and had thought of taking it up again, when my hands reminded me why that was a really stupid idea. Even with the computer, between the eyes and the hands, cants stay on for long. I have been trying to plan work to be done to the flat, but partly because I can't do all I would want to its difficult to make decisions, as I know that part of the plan making, is just to have something to so. So I am busy creating things to do to keep me occupied, sad really, pathetic really, depressing – certainly. Sometimes you can just shake yourself out of it, but sometime it is too hard, that dark cloud just envelopes you and you are forced to face and accept your lot, bugger!

What a week!

This week started poorly as on Monday and Tuesday not feeling all that great, just run down and under par. Then on Wednesday no laptop!!!! No internet connection, nothing on Ipad or Iphone either. So seemed reasonable to conclude that there was a problem with the router, as opposed to the laptop. Phoned I T man, who offered to call after his last call that day, 8-9, however after thinking about it, realised it would be a problem as OH works nights  and he would be getting ready, so phoned him back and arranged for Thursday afternoon. 

Then surprise surprise, on Wednesday night I heard iPhone ping and on checking all ok, so quickly online and explaining what had happened. Thursday morning, zilch, nada, nothing, glad I hadn’t called to cancel appointment!

On Thursday, I noticed again a strange noise in the bathroom, kind of like an electric hum, as it had been around a couple of weeks decided it was too annoying to leave so called the plumber and the young man arrived early afternoon. After listening in the bathroom he went off to investigate, in a wee while called me through to show me where he had moved the washing machine and dryer out of my wee utility area and rolled back the vinyl to expose sodden floor boards. He lifted some of them to find a huge fountain erupting from the joint at a copper and lead pipe…..and a lake under it.

He worked on and managed to fix the leak but we also noticed the kitchen sink waste unit had dropped and needed either lifted or replaced. As it is obviously better to get that done before the new floorboards are laid, we arranged for plumber to come back today. So the washing machine and dryer, plus washing hamper, cat food supplies and dishes all moved into kitchen, washing machine pulled back as far as we could to get out the way and so it could be connected and therefore useable. 

Unfortunately the joiner can’t come till Tuesday to lay new floorboards, so chaos will be with me all weekend.

By this time we realised no sign of IT man, he was running late but it was going to be too late for OH, so changed yet again to this afternoon. Plumber came this morning, did all he needed to do, IT man arrived and found the router just needed to be reprogrammed, so all ok there. We had a conversation as he mentioned he often had reconditioned laptops (thinking about mum) and then thought about my old knackered laptop, so he is off with it, convinced he will be able to fix it and then take it to  mum and set it all up for her, yeah!! Fingers crossed!!

In the middle of all this I got a phone call from mums alarm people to say her alarm had gone off and police were on their way! Phoned mum, all well, but when she went into the cupboard where the control, panel lives, a red light came on….. by which time the police car appeared all lights flashing – policeman jumped out the car and ran up to the door and pounded on it. However they were very good and once convinced that she was fine went off. When she phoned the alarm people to tell them (this has happened before) they asked her if she would be in all weekend then they would get an engineer out on Monday!!!!! Anyway, engineer has now been but couldn’t figure out what is wrong, but have changed the setting so that if the alarm goes off they will phone her first to check the situation before alerting the police! Her poor neighbour came running up the street to see if she was ok, and got all emotional hugging her. Any other neighbours around must have wandered what on earth was going on!

Mother was stressed with all this so when the local kids started cycling up and down the road, and the footballs came out she was pacing in her dining room watching them in case of damage. I do wish some of these neighbours who encourage their kids to play with footballs in the street would make sure their kids stayed at their own houses, but of course they don’t and then older residents like my mum get stressed to hell. Apart from the danger of damage to her garden or windows, there have a few narrow misses from cars with kids running out from behind parked cars.

Why is it that life just rolls along with the usual old ups and downs, then suddenly it all goes to hell?

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

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

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

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

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!!!!!