From first step to none

I am still trying to get my head around what I did yesterday afternoon. I went to the hall cupboard and brought out my wheelchair. I haven’t even sat in it for years, as I have never even tried to use it in the house. I had dismissed as not only not needed and just far too difficult to manoeuvre around. As long as my legs could hold me and as long as I could manage by catching hold of furniture and walls, well why would I want to make life more complicated. When I first got it I was stunned at the way it opened up the world for me and it has been fixed in my mind that it would be this amazing contraption that could take me anywhere. Within weeks, my dream had been destroyed by reality. A reality of cambered pavements, badly parked cars, unrequired steps and surfaces that were anything but flat, brought my world back down in size rapidly. Most of all, it allowed me to work for several years longer than I would have been able too. A call centre is a big building and I was required to be here, there and everywhere, that was until I fixed everything to work for a bank of PC’s which allowed me to be anywhere, even from home. The impact of being housebound was tempered by just doing that, sitting here working daily, life continued as normal while my wheelchair sat in the cupboard, doing nothing but getting in Adams way.

I don’t know exactly what inspired me to go and fetch it today, or to sit in it to discover just how much of our home was really assessable, but that was exactly what I did. First I headed to the kitchen, it looked easy enough but it was a lot tighter than I expected. I had to tweak my approach over and over and getting back out was no easier. Our flat is Victorian and defiantly not designed for the possibility of someone in a manual wheelchair and I have made it even less so. Right at the doorway of our kitchen is a free standing unit that holds a million and one things, things that can’t just be thrown out to allow me to move around. But I checked closely and it could move back about 2 centimetres, not much I know, but it would make the difference between difficult and possible with care. Of course, all of the counters are far too high for me and all of the cupboard that are on the wall, totally inaccessible. As I don’t exactly cook, there really isn’t a problem with the cooker, but should I want to cook something when Adam isn’t here, well I can still manage the microwave. Our kitchen is spacious and I just couldn’t resist when I was in there doing a couple of the moves I had mastered years ago just for the fun of it. There is nothing like the agility you acquire once you have been using a chair for a while, turning on a sixpence at speed is just one of them.

The bathroom I knew before I even tried that I would have to remove the bathroom scale, not much of a loss as they haven’t worked for about a year. I can’t make it all the way to the toilet, as the room is half its width at the back. There’s a sort of passage of with a length of about three feet between where the chair would have to stop and the toilet itself, thanks to the walls it would be easy to manage on my feet. It took a lot of concentration to reverse my way back out of the room as there just isn’t an easy way to turn the chair around. The bedroom is the only room where there are space issues. Clearly it had been an add-on long after the flats were built. It looks as though at one time the kitchen which would have been the main living area and the sleeping area for part of the family, was even bigger still. With the fashion for indoor bathrooms and toilets, they simply sliced off the smallest space possible of the biggest room.

Our bedroom supplies once again has plenty of space and, unfortunately, a white carpet, which meant I didn’t even try to go in there this time. The chair hasn’t been washed since it was last out, and the once white tires are rather grey-looking and require a good bleaching session before it went over that threshold. No such problem here in the living room, just a slightly tighter entrance than I would like, but one I can manage. I know Adams answer would be to move or throw out the nest of tables at the end of the settee, but I bought them for that very space and there they will stay. Again though thanks to the shape of the room, there is one area that I can’t get to in my chair. I can’t get up here to my PC. This back section of the room is a large alcove, which is actually raised about 8 inches higher than the rest of the room. Why it was done I don’t know, but whoever did it, created the perfect place to turn into a sort of office space. Neither the step or the distance are of any issue, as every inch I would have to walk has furniture to lean on. The rest of the room has no problems to it at all, I can maneuver with ease and access everything.

I knew before I even sat down in my chair, the points I would have problems with, once you have been in a chair, you become quite good at knowing where it can fit and where it can’t. All the points, where I was caught, were the points I already knew would be a problem. But it wasn’t those issues that I was wanting to test, I wanted to know would it be feasible when it comes to everyday life and would it truly make anything easier. The answer, I honestly don’t know. Right now, it would make life more difficult, there are things that need to be fixed before I even think any further about getting Adam to bleach the wheels. If I was sat in my chair now going to fetch a drink, I would have to make two trips, one to fetch the bottle from the fridge and another to take it back. You can’t carry a full glass and push your chair. That’s just one example of “a fix it first problem” that I have noted. I can already see that I need to put a lot more thought into my everyday life, right down to the minutest detail and see how a wheelchair would change it or what changes I would have to make and accept.

Right now, I don’t think I need or am ready to sit in my chair full time. I am quite sure that Adam would be happier if I did, as then when he was out he wouldn’t have to be constantly worried about me falling over. Although when I lowered myself into the chair I did feel firstly very at home, it was like slipping into an old favourite pair of jeans. Comfortable, well fitting and somehow right, it was the somehow right that answered my question as to why I was even doing it. Despite being pig-headed and not ready to accept that it is a not too distant reality, it is just that a reality I am closer to, than ever before. The weakness in my legs is growing and the occasions that they are just disappearing under me are growing as well. I already know that if I do hit the floor the whole process of getting back to my feet is a total nightmare. I am becoming wary of almost every step I take and that to me says a lot. Now is the time to start planning, to make sure that when the transition happens, it is all in place and that I am not going to find myself a million times a day, exasperated and just getting to my feet because I have no other option. Almost every kitchen cupboard is going to have to be rearranged things that I use, even those that would be on the occasional list need to be accessible.

Returning to wheels isn’t just a case of taking the chair out of the cupboard, it a huge commitment and a huge psychological change that has to be made. I guess that I knew in the back of my mind that this was really the only answer. I had thought of calling in the OT’s but in reality, there is nothing they can do to help. No walking frame, walking sticks or anything else, will stop my legs from collapsing. A stick or frame might actually be a bigger danger than of any assistance. I honestly think they would cause me more damage as I got caught up in them and wouldn’t help me once I was on the floor. I am resigned to the fact that my chair is the only answer, but it has to be done right, or I will discard it, I know what I am like. So, it time to start thinking and planning, time to make that¬†first steps to none.

Please read my blog from 2 years ago – 27/08/2013 – Discoveries and losses

I never thought until today just how many who read what I write will actually not understand every word of it, I suppose it is a position that is compounded many facts. I am aware that I have a large number of Americans who read and although we share a language……….


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 >