Even when you think you are paying attention to your life, it turns out that you’re not. I really thought that I was aware of how I felt throughout most days and that my health no matter how bad was under some sort of control. It appears that I was wrong. Following my testing out of the landscape of our flat on wheels, I thought it might just be a good idea for me to start checking how many times in a day that I actually found myself not feeling right while I was actually up and about. Those points when my wheelchair would make me feel safer and hopefully would make it so as well. My idea was to get an angle on just how much difference using my wheelchair might actually make to me if I started from the start of next week. I was so sure that I would get a tiny number and it would confirm what I thought I knew, that I wasn’t there yet. What I really hoped was that I would then have a baseline from where I could continue to monitoring until I reached just before that point where even an idiot could see it. I honestly thought that I might find I needed it maybe two or at the most three times a day, the bulk of them in the evening. I was so sure that I was OK the rest of the time and that right now was just a good time to get things organised before things got worse. To my shock, I discovered that I actually feel unsure of my balance or strength for the majority of the day.
This is far from the first time that I have caught myself if you like, lying to myself. Actually, to be honest, I am not to sure about that either. At times, it just feels like I don’t notice things and at others, that I simply forget until I push myself to remember. There is also a very large dose of a desire to believe that I am not as ill as I probably am. Be it a lie, kidding myself or simply forgetting, over the last few year I have found that what I believe and reality are often two quite different things. Yet I was still surprised when I started to count almost as soon as I put my wheelchair back in the cupboard, that I had counted the first one before I even made it back here. I disregarded that one and put it down to my exertion, the first of a string of excuses that I kept finding myself making. Which is probably yet another reason that the truth of my health isn’t always what I personally believe. To my shock as the hours ticked on there was hardly an occasion that I got to my feet that I didn’t have to stop, or reach out for something because I just didn’t feel quite right. When I lay in bed that night I realised that the truth really is that I am not as safe on my feet as I would like to think. I have lived for most of the last 30 years feeling unsteady, so my disregarding it isn’t that surprising. Why would I notice or pay attention to what is in reality just the way life is? Of course, I am just going to pay no attention, but it wasn’t because of that that I had initially taken my wheelchair out. It was because of the way my entire leg would either go weak or even vanish. That feeling and the reality that my legs can and does just disappear was the catalyst.
I know to date that I have only ever had one occasion when both legs went at the same time, clearly potentially a dangerous thing to happen. But it is the growing numbers of times that I have suddenly found myself with one leg missing and I do mean missing. When it started about six months ago, it would just be suddenly weak and it would crumple underneath me. I frequently would find myself trying to push my weight back onto the leg that was still there, but when you are walking it isn’t a natural thing to do, a bit like trying to take two steps in a row with the same leg. When it was just going weak, it was not just liveable it wasn’t that dangerous either. The leg would partially collapse, as though I had taken a step into a hole and then out again and I would grab hold of the nearest thing and shift my balance. Then it started to change and the weakness progressed into not just an inability to taking my weight, but into a complete loss of it all together. When it goes, I can’t feel it and I can’t even be sure where it is. Luckily, it also means I don’t feel the pain as I thump it off things or stub my toes as I swing it in the hope of taking a step to safety. So far it has only lasted for seconds, but seconds are long enough to send me flying into walls, furniture and even the floor. There has been a clear progression and it’s that progression that has prompted my thought of the wheelchair. In just two days, it has happened 3 times.
Some of you will understand when I say it isn’t the fall that frightens me, it is the getting up again, or rather the possibility that I wouldn’t be able to. It has been several years now since I had the strength to get myself back up off my knees. Low cupboards and jobs like lighting the fire, are now things to be avoided, as once I am on even one knee, I am not going to stand again without a huge dose of luck. Once on two knees the luck has run out. If I can manage to stay in that upright position and I can walk on my knees to somewhere I can pull and push myself to stand again, all well and good, but it doesn’t normally go that way. Walking on my knees, doesn’t always work because of my clothes. I have on a couple of occasions found myself suddenly face down on the floor as my legs have become entangled in the baggy, slippy and stretchy material of my pyjamas, which have slowly been pulled from my body by the friction of the carpet. Once I am on the floor well that’s it, the length of time so far to my walking again has been governed by my energy. My arms don’t have the strength to hold me when I try to crawl on all fours or to even get me back up to walking on my knees. Commando crawling is no better than walking on my knees and I haven’t been able to roll for years. All that I can do is an odd combination wriggling and any other movement that my body can manage that will propel me to where I stand a real chance of getting up. Other than that, I am stuck there until rescued. I don’t even want to think about that or what would happen if I were actually injured on my way down there. There is my reason for knowing that the time isn’t far off when my wheelchair will be the only answer.
I have had to make a major shift in thinking. To date, everything has been measured in how much energy it will take. I have a limited supply of the stuff and fatigue has to be avoided at all costs. I have always seen our flat as small enough to manage if I just used every trip to the full, as in having 2 or 3 tasks to complete and not going anywhere just to check something. Thinking about safety, is if I am truthful, has never been in any equation at all. Oddly, as I have been a long time wheelchair user before, I am still going through that reluctance to take that final step and just sit in it and fully accept that it’s where I should be. I did have that cradled feeling when I sat in it the other day, there was that moment where I felt as though it was welcoming me and trying to say “it’ll be alright, we’ve done it before.” OK, yes I’m doing it again, putting human emotions onto items that aren’t even alive and now you know my other secret, I talk for them sometimes as well. I am sure though you understand what I mean and what I felt. I know why I have fought it for the last year or so and my fight has been two-fold. Firstly a reluctance to the fact I thought that we would have to move furniture not just half an inch or so, but even as far as the bin. The second, a fear that still has me wondering, are my arms up to this? It was the loss of my left arm that originally pushed me into being housebound, without two arms, you can’t use a manual wheelchair. It took me two full years to get back enough strength to do anything of importance with it, unfortunately, it hasn’t worked it’s way back up to equal my right arm. In fact, what has happened is that my right arm is now just as weak, hence the fear if either are up to it at all.
Although on the surface you would think that wheelchair takes less energy than walking, that’s just not true. I know from the past that the tone and strength of my upper body was tremendous. It doesn’t just involve your arms and shoulders, it uses everything down to your waist. Spotted another problem yet? I don’t have the slightest idea how either my diaphragm or my intercostal muscles are going to take the effort. I fear that they might just react by throwing even more spasms, something I really don’t need. There is nothing that I can do but try, but this whole thing could totally backfire.
Please read my blog from 2 years ago – 29/08/2013 – Still ALIVE and still HERE!
This has been the first time I could add a post as my PC decided to die, this means that I am having to totally rebuild it from the very beginning the reinstall of Windows 7 and everything application……..
I DREAM OF DANCING AT MY DAUGHTER’S WEDDING??? THAT WENT TO HELL!!! WE ONLY MAKE THINGS HARDER WHEN WE HOPE. MOVE SOME FURNITURE. KEEP THE WHEELCHAIR BY YOUR SIDE.KEEP FOOD BY YOUR SIDE.ANYTHING. OTHERWISE, YOU AND I WILL END UP OUT OF IT IN THE FUCK%* HOSPITAL. A PLACE, I REFUSE TO GO UNLESS I’M ALMOST DEAD….AND SO DO YOU….REALITY BITES!!!