It was cold this morning, so cold that for the first time this Autumn I asked Adam to light the living room fire. That sounds like we have a coal fire, I wish, no it’s just a rather beautiful coal effect that unlike many actually puts out a great level of heat. To keep the look going they put the ignition switch behind what on a coal fire would have been the hatch to the ashtray, so it’s at floor level and doesn’t always light first time. For me it is a real problem as to be able to reach that low I can still just about do as long as I can steady myself, but to stay down there at that stupid angle for more than a few seconds, just isn’t on and I can’t as I used to just kneel down, as that means I am stuck on the floor. I discovered a few years ago that leaving the pilot light lit, used up £7 of gas every month, that was about 8 years ago so I hate to think what it would cost these days, but it does mean anyone could turn the fire on, even me. It is something I am thinking about doing this winter as once Adam has gone to work, well there is no one but me here to light it, I will wait and see how things go this year as last year once I had the heating on, I rarely needed the fire, fingers-crossed it is the same this year.

I know for a fact that not one of us goes out and buys new items for our home with it in mind that one day we will be disabled, but there are so many things we did when we bought this house that with hindsight I would have done so differently, although I doubt the fire would have been one of them, as that was a total fall in love purchase and despite my issues with it now, I probably would have bought exactly the same one. I know it was me who drew up the plans for the kitchen and me that insisted that we were going to use the very solid carcasses with new builds to complete, but I would have planned it differently and I would have added in something that we just don’t have, like more draws for one, it’s amazing how useful draws are when you can’t reach the back of a cupboard, or the back of a top shelf. Correctly measured draws would be so much better for keeping loads of things in, easier to pull out and to even reach the back corners. I would also have those racks fixed to the door rather than internal shelves as everything swings into reach as you open the door, rather than a blank door just hiding it’s contents. Small tweaks that would just make life so much easier, but I built it for look, for the able-bodied and for cost. I am so glad that I didn’t even touch the bathroom until I was actually housebound, as that at least is the best it could be, accept I can’t get in with a wheelchair, but I couldn’t of done so before either due to the physical build of the room, at least I no longer have the dangers of a bath to deal with. I would even change the windows we fitted, they are fine in the front of the house, but the back, well you have to stretch in the bathroom to reach the handle and the kitchen, well all three require me to stand on a stool. No I’m not tiny, I’m 5ft 9ins tall, our windows are just huge, plus they have fixed units in front of them, the handles are half way up as all windows normally are.

The biggest problem for all of us who find ourselves disabled when it come to a house suitable to live in, is the cost, there is nothing that allows us to magic up the money needed to make our home suitable for our new lives. There are grants and so on available, but they don’t take into account houses like ours, it is and early Victorian tenement and nothing happens with ease to a house like this. In a modern house you can widen a door without to much thought, there isn’t one door here that could be made wider, trust me I know as I did once measure it all out to see if there was any give in the design, there isn’t. The flat is built round a square hallway with the doors taking up nearly all the wall space in it, the only flat areas between doors is really the width of the separating room walls, the one wall with no doors on it, has an alcove and the main source of heat for the whole flat. On top of that with a house of this age the biggest issue is plaster work, all of it crumbles with ease, as does much of what is behind it. Fitting something like grab bars, isn’t so much about putting them in the best position for me, but finding a piece of wall that will take them, even with all the remodelling work in the bathroom, it took them two attempts to fit the seat in the shower, the first came away the second time I sat on it.

These were all problems that when you are fit and healthy as we thought both of us were when we bought out flat, just aren’t problems. We love this place and set about making it into a home that respected it’s age, but fitted also with out lives. We happily took on the problems of crumbling plaster, the total lack of kitchen, well unless one double doored unit with a cabinet above, a sink and cooker, all from the 70’s is your idea of a kitchen. We didn’t mind that the fire in the living room was condemned, or that every window was single glazed and warped, or all the other issues that turned up at every turn. I think we did a great job, one that unless something unthinkable happens I don’t want to have to ever leave, but that doesn’t always work well with the plans of the NHS and social work departments. It doesn’t matter how many grants are available, what alterations they believe are required to make my life liveable here, not one of their ideas allows for the place you live not being modern, but more than that, that it is actually your home, not just a place you happen to live.

The more your brain is effected, the more important the place you live becomes. As I wrote the other day, change isn’t something I can handle any longer, I hate to think how I would deal with having to move home. I know that just thinking about the idea is enough for me to fell anxiety, but I am not sure if that is the idea of moving, or if it is the fact that Adam would be viewing the homes alone and choosing our home for me, either is enough to make me extremely uncomfortable with the whole idea. As I said a few days ago, I don’t deal well with change, but that is now, how I will be in the future is unknown, but I can’t see it getting better as to date it has only ever got worse. No matter how logical it sounds to everyone else that moving house would be a good idea, our finances mean it’s impossible. More than that though, it is a small fact most over look, I am happy here, I know every inch of this place, to the extent that I have frequently walk around the house in total darkness without bumping into anything, even locating small items with ease. The outside world has been taken away from me, the idea of loosing this one as well, well it’s too much. Having your own secure and loved location is important to all of us, but once you have lost everything else it isn’t only important it is vital. We all need our own sanctuary and our own cocoon, even more so when your health has already gone.

Read my blog from 2 years ago today – 13/10/12 – Management > http://bit.ly/UTwUCz