There are times when I really hate the chair I have here at my PC, we bought it when built the desk I am still using, we couldn’t find anything that was the right size and would look OK in our living room. Like all old tenement houses there is an alcove that would have once been used as a sleeping recess that would during the day would have been hidden by doors or curtains, at some point in the past it had had a platform built in it that raises this area by about 6 inches above the rest of the room, perfect to use as an office space, but being just the size of a double bed, hard to find furniture to fit it, so we set off to the DIY shop and came home with pile of timber and a chair. Money was tight so when we found a chair for less then £10 that was not only on wheels but adjustable, I had to buy it. Adam cut all the wood for me and I set out to build an L shaped desk with shelves hidden under it and boxed in around the front and one side so you don’t see the mess below all out of pine, before staining it to look much older so it matched the living room door, I then waxed it and set up my PC, proud of my handy work. There are now three shelved units up here as well and a two seater settee just in front of it, covering most of the boxing in I did. I had always had the plan of buying a better chair, but it just didn’t happen, on the odd occasion I have looked, I just can’t find anything small enough to fit as well as what is here. I seem to be caught in the position that no matter how bad what I have is, I simply can’t find anything better, in fact I made it even more difficult when I bought my last PC as it doesn’t fit on the shelf my last one on and now sits behind me on the floor, without the wheels on the chair, I would never be able to get myself into my space, my point of reference of the world.

Like so many other things what works well for someone who is able bodied, isn’t always suitable for someone who is disabled. My little chair is hard, yes I have added cushions and so on, but it is still hard and doesn’t really give me any support to my back at all any longer. With the cushion on the seat, what should be supporting my back, is now in the wrong place, but there is no other option that I can come up with. I know that other than the bathroom, which was remodelled for my use a few years ago, most of the house isn’t really suitable, it’s the silly things, like the settee being to0 low to allow me to get off it with ease, I again have added a cushion but it isn’t really the full answer. Everything seems to be a compromise between what we bought because it was right when we bought it and what is needed now, if it wasn’t for my perching stool, most of the kitchen would be useless to me, I can’t stand that well now and the countertops are too high when sat on a normal chair. Keep travelling around the house and the problems appear one after another. I know that unless you are going to totally remodel your home, or move to one already kitted out for you, it is a compromise that most of us just have to live with. Part of the problem is that none of us, not even the fit and healthy, ever like to think that the day will come when what they bought out of taste and style will turn out to be anything other than perfect.

We all furnish our homes to be the best we can and the closest to our own form of perfection possible, without the slightest thought really towards the future. When we moved in here we thought we would live here for 5 to 6 years, long enough to make a profit that would allow us to move into a bigger and better home, 14 years on and we are still here. What we did to our home was supposed to be a stepping stone, something that would be all changed in time, as in time our finances would improve and we would be able to make things even better, it never happened. Looking back I now see that what we did was actually madness, as I was nearly 40 at the time, I should have done things with not the intention, but with the possibility that either my MS would mean we would still be here, or that finances would mean this would be our only home, one that had to take both of us and especially me, being so much younger than Adam, into my retirement years. I didn’t do it anymore than anyone else does, we all believe that we are invulnerable, that we won’t grow old or become disabled, but maybe we should, maybe once past that age of 40 we should start to buy for the future not just the now. That we don’t buy that fashionably low settee or bed but buy the one that is just that couple of inches higher and possibly buy a bed with an elevator in it, comfy for reading in bed, not just for getting in and out. The list goes on and these days don’t have to be any less fashionable, just that touch more practical for the rest of our lives as well as the now. I know that is fantasy land, people aren’t practical as I have proved perfectly, even knowing I had MS I still bought those settees that looked perfect and fitted into my scheme without being practical in any way.

Ideal worlds don’t exist, nor do ideal lives, I may have learned from my mistakes, but we can’t afford to now go out there and buy all the things I should have first time round, I can’t even find the money to recover the settees and repair the spring that has gone. Maybe in a few months, once the savings start to show in my bank account due to the changes I have made in my smoking, maybe then I will get all that sorted, but those are the facts of living without an income, of living with an illness that destroys everything including your dreams. I can only hope that there is one person out there who knows that they too will one day not be able to work, who might just listen and think before they go shopping, what you buy today may have to last you a lifetime. A new desk chair just might give me the options of how I am sitting and might just make a difference to the spasms I am getting, or maybe not, but I don’t have the choice or the option to find out.

Please read my blog from 2 years ago today – 01/07/12 – Help 

Each day I wonder is it going to be today, am I going to sit here and stare at the page in front of me and have nothing to say? I never stop amazing myself how I write and write and still find more in side that I want to record and pass on. I have been so lost at so many times in my life and searched for someone who I could relate to and gain some hope that there was a point to this existence other than to put me through hell, I have no doubt at all now that everyone feels that way…..