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 thatĀ 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……….

2+2 = Doh!

I had one of those moments last night when out of nowhere, I was suddenly clicking together loads of different separate things, a bit like being faced with a jigsaw where all the separate pieces colours and shape suggest that each one belongs to different puzzles, but when brought together, a totally unseen picture appeared.

Over the last few weeks, I have had a lot of odd symptoms that were either totally new or were what I thought were returners, to be honest, I though I understood them reasonably well and just as they had been in the past were one-offs or isolated from anything else. I was lying in bed thinking about my legs due to the piece I wrote yesterday, when I suddenly remembered something I had spoken to Adam about and I think I also noted in a recent post, I have been having problems with walking recently as I have been staggering more than normal. Not to the extent that I look like someone who is severely drunk, more like I have been taking the odd sideways step, but it was often enough for me to have noticed. The reason, I first noticed them, was because they are different, usually when I stagger it is caused by the fact my balance is off, something I have lived with for years, but these were different. They were more as though I was being forced into quickly changing from one leg to the other because the first just wasn’t holding me correctly and it was my body weight that was pulling me off balance. I suppose the best description I can make, is to say it is like a painless limp, almost as if my leg just couldn’t take the weight and threw it back to the other one. I don’t walk any great distances these days, well there is a limit as to how far anyone can walk in their own home unless of course they live in a castle, but just walking to the kitchen and back it would happen two or three times, then settle for the next trip or two before suddenly reappear.

The next piece to click was the fact that I have also been having more and more problems just standing up in the first place. I haven’t been able to get off the floor by myself for a long time, but luckily I haven’t taken a fall for a while either another sign my balance is behaving, what I am talking about is just getting to my feet from just sitting. Just like when I am on the floor, my thigh muscles sometimes don’t seem to have the strength in them to push up, I am using props to help me more and more. These days I am leaning on my desk, or using the arm of the settee to replace the missing strength in my legs by using my arm muscles instead. The toughest place to launch myself from has been my bed, I have no issue with getting to the edge of my bed to get dressed thanks to the elevator, but the act of standing, well it is no longer elegant and I am actually glad that Adam is never there to see me. I all too often find myself in a sort of doubled up stance with my backside sticking out behind me, trying to find the pivot point between sitting in mid air and standing, it is a real case of launching myself. By the time I got to this point the picture was reasonably clear and I was feeling rather relieved, I had quite a different picture in my head and it wasn’t as simple as missing strength, I had gone along Adams normal route, worst case scenario, I just wasn’t saying it.

By yesterday morning, I had this horrific picture in my head that I was losing the nerve impulses and that was why they didn’t want to hold me. I was sure that I was going to land up with these useless lumps that weren’t going to obey anything that I wanted them to do. There is a huge difference between my legs just getting weaker and losing the use of them due to nerve death, I can deal with their lack of strength, I can’t fix it, but I can deal with it. I had gone with the nerve theory because of the lack of feeling and the fact that I don’t always know just where every piece of them are. I now honestly believe that I was blowing out of proportion, I get the exact same thing in my arms and I don’t have the slightest thought that I am losing them any quicker than the rest of me, so why I would I be losing my legs that way. I just wish that life with MS wasn’t this constant guessing game, not just on my side but as I discovered also on the doctors, I learned quickly that they knew no more than I do exactly what will happen next or what is behind something. I used to be able to see with ease the muscles that were wasting away but as the weight has gone on because they are wasted and unable to exercise, well seeing them at all isn’t that easy. It was one of the annoying things about being a fan or knee high boots, the one on my left leg kept falling down as the bulk just wasn’t there to hold it up. Just as I get more pain on the left side of my body than the right, I also am very aware that the left is also the weakest, both arms and leg.

Working out that it is just strength and not nerve death doesn’t help with the fact that if they were just going to give up under me I would land up on the floor, but it does mean that if I find that happening I don’t have the fear that collapse would equal useless. All my most recent falls have found me stuck on the floor without even the arm strength to crawl on all fours. My arms just can’t take the weight as they just collapsed the second I try to move and all I could manage, was a commando crawl, means I avoid the floor like the plague. It may be hard to get off the floor without things to pull myself up on, but it is even harder when you don’t have functioning limbs to help you to get somewhere where you can get up. For now I just have to carry on as if, in the knowledge it could happen, if things get worse well like it or not, I will have to call for help and a walking aid of some sort, time will tell.


Please read my blog from 2 years ago today – 10/01/13 – Emotional Fear

You would think that after living together in the same house for over a decade, that my husband would be able to see the differences between items that decorate our home and be able to put the right one in the right place. Believe that and you will believe anything…….