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……….

Finding the strength

When I went to take my meds last night I opened up a millions other thoughts and not just the bottles and boxes. I store my daily open pop-out strips and bottles of potions to be swallowed daily in a draw in the kitchen, but my major stash is in the bottom cupboard of a freestanding wall unit just by the kitchen door. To date it has been a good combination as it has supplied all the space required and the close order that helps with re ordering, but now I am considering rethinking the whole system. When I was sorting out the required array, I found that I needed another bottle of Amitriptyline but I couldn’t actually see any in the cupboard, they had to be further back but even when stretching my hand into the blackness I could find none. Without thinking I did what anyone would have done, I dropped onto one knee so that I could actually see. At the exact second my knee touched the floor, I knew I was stuck, there was no way I was going to be able to stand up again, the route was onto two knees, not two feet. It really was that exact second that I knew I had just managed to do something really stupid, there was no thought just a lightening fast realisation that I was once again stuck.

I stayed there on both my knees but otherwise upright while I considered my options, Adam was cleaning the bathroom so he was just a shout away, but I wanted to first try for myself, to work out my options. Strangely early that day I had said to Adam that I wanted to try and find out how I could move around the house and at what spots I could manage to get onto my feet again. The impact of my fall the other week was that I have actually been testing myself to see what strength I had and didn’t have, my arms have really gone down hill quickly in the past few months, they just don’t have the strength that I thought was still there. So there I was on my knees in the kitchen and rescue just a shout away, here was my first option to rescue myself with back up just a wall away. I had already collected the bottle I needed and placed it on the kitchen counter which was just to the right of me, but I was still facing the cupboard, I didn’t even bother putting a seconds thought into using the cupboard to pull myself up on, that would have had only one result, the cabinet with it’s large display of crystal crashing down on top of me. Although it has stood there in the kitchen for years, I have always been aware that it isn’t something you would want to grab at or try to put your weight on in any direction, other than to maybe to push it back towards the wall. It’s purpose of supplying display areas is well fulfilled, as almost every inch of every shelf is filled and when clean the light sparkles and reflects around the room, but it true use ends there.

The kitchen counters to my right is at the perfect height when you are standing but now on my knees the top of the counter was above my chin and my arms just don’t have the strength to pull myself up over such a distance. I had already decided that using cupboard and draw handles was out of order, although they all seem solid I simply didn’t want to test them, I have no desire to find myself with a repair bill but I did have one option that I edged towards. I shuffled along the counter on my knees, holding on to the counter edge to steady myself until I reached my perching stool. This was my savior but believe me a difficult and painful one to climb up on. Everything seems easier in your mind but when you actually try it out, the results are far to often not what you expected, even this morning my arms are still aching, but I did it, once on my feet again, it was as though nothing had happened. My legs carried me with ease and my arms although sore, still sorted out and made me take my meds before carrying my freshly filled glass back into the living room.

Each room other than the hallway now has an option to help me onto my feet, should I either fall or be that stupid again, both as likely as each other these days. I know that in both the kitchen and the bathroom flooring’s will allow me to shuffle, slide or wriggle across on my back or stomach, not elegant that is true but they will supply me with a way out, unlike the rest of the house. I so love my carpets and I would for no reason that anyone can come up with, get rid of them, but once on the floor they hold onto you. Friction can be like glue if you try to shuffle you body over them, the knowledge and proof that my arms are useless has produced a huge problem when it comes to my independence. I have had no fear of falling, there really is little to fear, worse case scenario has always been the possibility of knocking myself out and that has already happened. Adam worries more that I will land on some of the crystal that is everywhere, skewer myself on it and bleeding out as he isn’t here to help me. My attitude is well if it happens it happens, I want to see it all everyday, that is far more important than the danger it holds, if any. I haven’t had the body strength now for several months to sit up from lying down, hence my mattress elevator, my arms have no strength at all in them and my legs little more. These days just the simple act of standing from sitting here at my desk, or from my bed once I have swung my legs round so my feet are on the floor, the actually starting action now comes from my arms not my legs. Alone my legs can do little when true strength is needed, hence not being able to manage stairs, they just can’t do it. I expect that at this moment in time if I were on the living room carpet, well I would manage, that I would find a way. A mix of rolls and pushing my feet against anything there is there and solid enough to supply me with propulsion across the room, in a hope of reaching my target. I realise now that the day of being totally stuck down there isn’t really that far away, well I didn’t notice myself deteriorating to this point, it was suddenly there, so the next step I guess will be just as sudden. How can your body disappear so suddenly and with such ease, yet totally unnoticed? I thought I was still strong enough to take care of myself, but suddenly I’m not.

To someone who doesn’t give standing up from being on the floor as seconds thought, I don’t know how to explain that instant knowledge that you don’t have the strength to do it. It is almost as though suddenly your body weighs ten times what it does and gravity has grown at the same pace, there is nothing there to fight it with and add in the loss of true balance, well the whole thing becomes a living nightmare. Until you are where it is safe, where your balance is dealt with, as you have something solid and steady to take it’s place, but also at a height that your now useless limbs can actually use as a leaver to move your body upwards. Even when you get there, when you have found what you think is that perfect item to help you, remember your body has no strength and you have just used most of it’s reserves getting there. How long will it all take? How will you actually feel? And will you actually be able to stand at the end of it? It doesn’t matter how many times you fall, what matters is how many time you actually managed alone to get up, I guess that is another balance that is changing, I guess the time where I really won’t be able to get up isn’t really that far away.