Every solution breeds a problem

For the first time since I sat in my wheelchair several weeks ago, I actually abandoned it yesterday. I had just been back and forward to the kitchen three times, the first planned, the second two, to fetch what I had forgotten. On the final time, I climbed out of my chair and was about to sit back down here. My eyes scanned the desk as I was lowering myself with the aid of my desk, when I realised, I hadn’t been to the fridge to pick up a drink. I gave up on the lowering and slammed down on my chair, my head hanging low and so angry, I wanted to scream. Once more, I was going to have to fight with my arms, which had complained through every turn of my wheels, on my last trip. Here I was, with no other option, but to return to the kitchen and to go through all of that again, but, I did have an option, I could walk. In some ways, I am really surprised that I haven’t taken that option before. I still have legs, yes their weak and they are unreliable, but they are still here. So I did it. I walked. Through every step, I could feel myself shaking from my toes, right up to my hands, but it was still faster and it didn’t hurt my arms. I had walked there and back with my hand dragging across the wall and grasping at anything, I thought, would hold my weight if my legs failed. I have to admit, that the relief when I was once more sat here, was huge. All I could hear going around and around in my head, were questions, “What would I have said to Adam if I had fallen?”, “How would I explain the fact I had left my chair and stupidly walked all that way?”, “What on earth had I been thinking?”

It isn’t something I am going to do again in a hurry. Somehow, I think I actually needed to do it. Not just to fetch the drink, but to remind me, why I am now once again on wheels. Changing your life, from ambulatory to assisted by a wheelchair, is a huge thing to do. The idea that you just sit down and totally forget, that your legs are even there, would be madness. I can, as far as the physical mechanism of walking goes, still actually walk. I can stand up, take a few steps in safe areas, but the whole idea that it is safe to do so over greater distances, would be the greatest form of insanity, I could lay claim to. Trust me, life in a wheelchair may be safer, but it is a million miles from easier, faster or even enjoyable. At first, it was all a challenge. Dealing with all the sharp turns and obstacles that seemed to actually jump out in front of me from nowhere. I learned, I grew more confident and slowly, I became used to it. At about that very point, my arms and hands stopped just being annoyed at me and took up a stance, of pure objection to the whole thing. Mornings have usually been not to bad, but as the day progresses, there is less and less cooperation. By the evening, it isn’t just when I am moving around, but when I am doing totally nothing, I am in pain from my neck, across my shoulders, and down into my fingertips. Worst of all, it is no longer just my thumbs that are dislocating, I now have three more fingers, that have discovered the same trick. None of them jump out totally, but enough, trust me to cause extreme pain and to have me grabbing and pushing them back to a normal location as fast as possible. If anyone has the cure or even something that would help, please tell me it. It so often feels now, that what seems to be the answer for one problem, turns out to be just another problem. Life has reached a point where nothing is a simple straight forward process and I honestly, can’t see it getting any simpler, anytime soon.

It isn’t just pain that my chair is causing. I have issues at night because I can’t manage to move quickly when I am half asleep, without crashing into things, usually causing myself more damage than anything in the house. I need speed, because I normally wake, out of the need to get to the loo. No, I don’t want a commode in the bedroom, not for a long time to come. My chair won’t fit into the far end of the bathroom. There simply isn’t enough space, although that wasn’t a problem two months ago, it is now. So, I am now considering grab bars and rails, to assist me. A step, I’ve resisted for so long, that it somehow feel ironic, that I’m thinking about them now, thanks to another aid. Again, thanks to my chair, having a shower seems like a much more complex and annoying process, than ever before. Clearly, standing in the middle of the bathroom, to get dry is just too dangerous. If my legs won’t hold me when walking, or even just standing for a short while, the danger when twisting, standing on one foot, or any of the other odd positions, we stand in when getting dry, is pure danger. Bringing my chair in with me, yes, it means I can sit down, but because that means it has to be brought in backwards, once in, I can’t get to the loo. It also makes getting dry, one, huge problem. The towel catches on everything, wheels, brakes, armrests, footrest, you name it, it will catch. No matter what system I use, I always seem to land up with damp spots, that I don’t find until I am trying to get dressed. I could ask Adam to help me, but that holds two problems. First, I don’t want Adam to be drying me and second, it’s another idea that I have fought against for years.

My wheelchair may well have removed the danger of my landing on the floor, but it has brought with it, a range, far bigger than just those I have listed, of problems that I now have to fix. If, I hadn’t stood up yesterday; walking out of total frustration; with the result that it had; quite honestly; at this point, I would be thinking of returning it to its cupboard. I need it, but it’s not making life easier, in any way I can think of. Actually, I have to take that back. I know that all I have to do is read back to the posts I wrote when I first set off on my newest form of life. It did have a huge positive impact, and I have to remember that. It isn’t so much the chair, it is life has so much clutter attached and moving in a rather large and new piece, isn’t going to be easy for anyone. If I am to tell the truth, none of us want our lives altered, by anyone or anything. Life, no matter how scary, is most enjoyable when we keep it simple. We don’t like change, and we definitely don’t like change that means, even more change, is required. I know myself, that it has more to do with attitude and desire, than reality. We see problems, that aren’t really problems at all, they’re just more change and that’s the real issue. If I can find grab rails that don’t scream hospital at me, well I could live with them. The rest is much harder, but solutions must be there somewhere, ones that aren’t just going to lead to even more problems once in place. The real problem is, is it doesn’t matter how far you try to plan into the future, when your fighting against an illness, that just doesn’t stand still. As I said, two months ago, rails weren’t required, they’re need though, is getting closer. Ouch! that has just put something into my head, something I hadn’t thought of, until this very second. Are all those problems, that I’m blaming on my chair, actually just new problems, ones that would have appeared, with or without it? Can I scream now, please, pretty please?

It’s a horrid thought that new problems will appear every two months, maybe, I’ve just reached that phase. Could my health really be moving that fast? Is that really why, I am feeling suffocated by problems? When I think about it, it kind of makes sense, but so did my first line of attack. I always knew that as time went on, that I was going to be doing more and more problem solving, just to make life livable. If I am going to remain independent, I know that life will have to change, systems revised and problems solved. Stupidly, I started putting them off. My brain is degenerating just as my body is. Much of what I am facing now, where problems that I always knew, would rear their heads, but I was doing the normal human act, of putting it off. Once, no problem phased me, in fact, I embraced them and loved them. There was nothing like a new challenge, just to keep you going. That, though, is now my main problem, being human, it has forced me into a world where mentally I am playing catch up, instead of being one step ahead, as I once always was.


Please read my blog from 2 years ago today – 18/11/2013 – Caught in nowhere to go

If I hadn’t spent so many years living with pain I think that at some point over the weekend I would have been at the local A&E department. My diaphragm is still giving me no peace, but it has made me realise just how…..

Lost and trapped in one

I had everything ordered in my head when I got up, exactly what I was going to write about and what I was going to say, then I started wondering. Not in my mind but around the house, sitting in each room without having a reason to be there, just sitting. I suppose the easiest example that may make sense to you is one I am sure everyone has done. You have gone into the kitchen not hungry but wanting something to eat, you opened the fridge door, already knowing what is in there, but still needing to look just in case, you stand there staring blankly at what is there, then close the door before checking in the same way a couple of cupboards before leave the room with nothing in hand to eat at all. I have been going into rooms with no reason or need for anything there, just checking, with nothing to check for. This isn’t the same in anyway to my visiting a rooms for a reason, then forgetting what I went there for, as I’m not going there for anything. I have found myself doing this several time in the last few months, just as I get distracted by other things on the computer when I am in one of my fogs, I have added in wondering away, looking and coming back again. I simply have a need to go there and no reason not to, so I do. I have to be honest it is a behavior that I can find no reason for, but I continue to do it.

I suppose I am more inclined to take time to work out why I do things than most people, as I need to understand so I can write about it. I expect that we all do things daily that there are few reasons for us to do, but we dismiss them and continue with our busy lives. My life isn’t busy so I can analyze myself continually, possibly not the best thing to do as it is easy to convince myself that something more is there than there really is. But if you knew there was something working it’s way around your body and brain stomping on and destroying as it pleased, you to might be a little concerned to what the reason behind things as well.

What I had in mind to write about today was something that happened yesterday afternoon. I went into the kitchen to fetch myself a coke and dropped the lid again, then stupidly rather than take one from my collection of caps I have for this very reason, I tried to pick it up. This meant that I had to kneel down as the cap was under the front of the fridge, I got down, but I couldn’t get up. I had to cross the kitchen on my knees to the other side of the room where I keep my perching stool, so that I could pull myself up, for the first time I couldn’t. It took me four attempts as I simply couldn’t find the strength to get off the floor. I have been caught on the floor many times, but every time in the past once I am somewhere where there is a leverage point, I have pulled myself straight up. Yesterday I just couldn’t do it, neither my arms or my legs contained the strength when I tried to use the normal levels of effort, by the time I was standing I had to sit as my muscles where exhausted, I sat for about 3 or 4 minutes before I felt ready to walk, but even then I felt weak and unsteady. I now have the proof that as I thought, my muscles are loosing more and more strength, it is no longer just a feeling that I am some how frail and can’t do things that require basic strength, I have proved the feeling right. So not only no ladders now there can be no more floor level activity, unless I am content to be down there for a while.

Combining all the odd things like suddenly sleeping half the day every day, and wanting to sleep even more, finding yourself doing things that make no sense, raised pain levels and new area’s of pain, more fogs and hugs than in the past, leaves me with no doubt that things really are changing. So watch this spot, who know what will happen next.

Three groups to look at

Change, probably the hardest word in the world. Just the word is enough to send some people into a flap and believing that there is no way they can do it. As an Operations Manger managing change was part of my job, I saw many who struggled with the smallest change in there otherwise maintained position, people who would be almost in tears as they were informed that something simple in their daily routine had to change for the efficient running of the company. If you have ever been faced by an entire call center and watching their faces while the center manager is explaining why the shift system has to change. Some people say OK without waiting to hear what it really means, some say OK and add a but, other without detail of any type react as if the end of the world has happened at that second. The group that I found really did deal with change the best were the middle group, they were logical about it and listens in a level headed way, ready to here the reasons and open to even suggesting alternatives. I think this group would also be the ones you find stepping into a world of chronic illness with a greater ease.

I am one of those people, I remember crying when I was told I had MS, crying a lot, I am not superwoman or made of iron, I was scared and all the other natural reactions. Once the tears stopped I then started the questions and the offering answers. When I became housebound, I didn’t really remember crying, this wasn’t to me an emotional point it was a point to manage my change and to find the good and bad points logically, as I have continued to all the way though. Loosing my job last year was again an emotional point, but again I moved into the question and solution phase. On the surface some would argue with me over me being in the middle group and the reason they would argue with me is simple, the damage I have due to the lesions mean that I cry when it means nothing and I shouldn’t and it is so hard to explain that when you have tears rolling down your face. So ignoring that, I am in the middle and I believe that if you are, you too will find adapting to almost anything easier. To manage your own illness and your own life with it, is not really different to managing your career and what changes in that. Illness controls your life just as your boss does or did, so you plan around it. Setting your goal, arranging your progress and adapting daily to what is possible. For someone like me that is the logical approach and one that for me has actually worked. People in that middle group don’t giving in when there is another option, but comply when there isn’t.

The final group, well they make things difficult for themselves as they jump to conclusions, convincing them that what they think is wrong, getting them to listen and actually engage with the situation is really hard. They instantly made a decision and they don’t believe what they are told because of their decisions. Should they decide that life once chronically ill will be unbearable, then it will be, they make it unbearable for themselves. I have found myself spending more time with them than others. Finding the reason they think what they think is always the key, find that and they find it easier. When their barriers are high then the problem can be almost impossible to over come. I have met others with MS in this group and they are the ones who don’t even want to consider that there is a way though, they are normally the people who say they will try something and normally don’t, as they had their fingers crossed behind their back when they said it, and actually don’t even try as they don’t believe it will work. Belief is the key and that is individual to each of them, once they do believe thought they progress quickly it is the initial belief that they have to find.

Back to front I know but I have left the first group to last, as they have always worried me, no one cares that little, no one just shrugs their shoulders and accept everything that happens to them without any question or reaction. I didn’t worry about them as employes, they made my life easy, but I worried about them as people, I worried that they were just shoving everything into a corner and locking it there. I worried that one day they wouldn’t be able to lock them in there anymore and all of it would tumble out all over the place. We all know these people, they are actually normally fragile, their packing into the corner eventually explodes and they find they didn’t cope as well, as they tried to tell everyone they do and what does it matter anyway. Even as a friend I have never known how to advise on anything and they leave me at a lose. I always find myself caring for this group and I turn into a mother hen without meaning to.

Three groups which if we are honest, we can see ourselves in one or occasionally in two, there are always boarder liners. Three groups I found through my working life and I believe are the same groups when it comes to dealing with illness and being housebound. If you know your group, well I think you can then use that knowledge to understand yourself and how to manage your situation so you still have as good a life as possible, because when it comes down to it, it is our own personality, our own strengths, our own weaknesses that dictate how we live and find happiness.