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…..

Everything is happening at the WRONG time.

Well I know I am sat here and I know that it is Friday but it all seems wrong, not for any terrible reason but because I am in that state that even you are probably in the post Christmas muddle. We are adjusting to work returning into the equation and trying hard to get back to normal but with the holidays fall mid week, everything is wrong, as tomorrow is the weekend again. At this moment I am sure there are thousand of people with cognitive problems worse than mine totally lost as to what is happening and why. Some things are always easy to grasp, but when the world does it’s best to confuse us it, what chance do we really have.

Last night yet again the wall collapsed at just before 9 and once more I climbed into oblivion, leaving Adam to spend the rest of the evening on his own. I had spent most of yesterday chasing my own tail and never quite catching up, at times I struggle to write a post that makes sense, without jumping about too much, it doesn’t always flow and if I don’t read it back, some amazing things appear on their own. That is just part of the problem of having a concentration ability of a flee, distraction lives in every second and will, given the slightest opportunity, take over. I think the moving about of what happens on what day actually has made it worse, having Adam around when he shouldn’t be, snoring on the settee, had me distracted all the time in the last few days. In a strange way each snore was a small distraction, like a permission to look at something else, check something else, read something else and forget just what I was doing. In just a few days I had become this bitty person, doing a dozen things and none with any skill. With things back to normal for just two days, doesn’t feel like normal, it feels like I am in pause mode waiting to be distracted again by the normal and trying hard to continue it without the prompt. There is a feeling of being just a little bit lost. I think that I will be really glad when Monday arrives and I really get myself back into a routine that will last.

I have noticed before that when I get more tired that my concentration has gone with it, just like now I suppose. It makes sense if you think about it, you nor I could sit down 10 minute before falling into a deep sleep and study Quantum Physics, then expect to remember any of it. It is another bit of the problem that being tired has, holding a conversation when I want to go to my bed is normally a confusing thing in itself. I just don’t hear things and to deal with the TV and Adam at the same time, ties me up in knots. He will start talking and I registered the voice, but not the words, and I constantly have to ask him to repeat what he said. Even then I may not take it in or understand what he is saying, as though my brain doesn’t want to work it out, because it would rather be asleep. I am not being rude or trying to cut out his existence but I can’t help it, sleep really pushes everything else out. Just as I feel right at this second finding the words for a sentence is becoming a trial, right now I need once again to have some sleep but I have things to still do before I can. I am being tempted to run and experiment, to take just one day and go with what my body wants, to turn off the alarm, ignore my routine and see just how much I would really sleep and how I would feel, if I did just what my body wants, rather than my brain. It is tempting but also scarey, as I know how much I need my routine, but I am wondering if my routine is actually now wrong and needs changing. I need to think about it a bit more, as it could really do more harm than good.

A Muddle of Syllables

Last night I asked Adam a question, one that I got a one word answer to but I was a little surprised when he didn’t ask why I was asking. I simply asked if he had noticed that I have been asking him more than normal to repeat himself, his answer was no. Clearly there was a reason for my question and the reason is an odd one, but I have noticed in the last few weeks that I have been questioning what he has been saying to me. At first I was putting it down to him mumbling, something we are all guilty of doing. Then I was blaming myself for not listening to him. Then that I wasn’t concentrating on what he was saying and I was being detracted by something on my PC or the TV, but I have always been able to do both without any trouble. Yesterday I realised what was happening when he was here at lunchtime, I didn’t’ ask him to repeat as I haven’t done many times recently, when I haven’t know what he was saying I have been covering it over by making a good guess as to what he was saying, based on what he had been talking about before I lost it all. If I have got it wrong I just say sorry and ask him to repeat as I haven’t quite understood what he meant.

What is happening isn’t just with him but also with the TV at times, I seem to be somehow not hearing words, just parts of them, my brain at times doesn’t seem to be translating the sounds into words, it is almost as though I hear a string of syllables and I’m not processing the right sections that belong together actually together, it sounds as though they are speaking a foreign language. I had noticed it when Adam suddenly talked to me out of the blue and at first that clearly could have been concentration, then I found it happening on TV programs when I was sat here at my PC, suddenly someone on the TV would again sound like they were talking a language I didn’t know, stopping me and making me look to the TV, to find they were indeed speaking English. It isn’t all the time and it might not happen for several days, then suddenly I am lost again.

It is as though my brains just stops processing words, just for a few seconds and then it snaps back, not always when I ask it to, but with in seconds. I am never spend any day without the TV on as well as my PC and the most of the time I can totally understand the TV and like now be typing, then suddenly the TV start sending out foreign words in the middle of an English program. I am not over worried about it, but it’s just a bit odd, to say the least. I suppose it has to go onto my list of things to watch out for and to see what happens as time goes on. It’s bad enough my speech being in a muddled mess without the voices around me playing the same stupid trick, mind you conversations could become even stranger than they are now.

Strange day.

There is a great temptation today to simply have a rant about Twitter as my account was suspended yesterday evening as I had unfollowed a large number of people who hadn’t followed me back, apparently this is against their rules and well my account suddenly went off line. The system they have actually doesn’t tell you if there is a chance of getting it back or not, or if that is it gone for ever and I have to start again. I am in limbo. For those who are here to see where I went there is the answer, I am waiting today to see what happens and if there is no answer from them I will have to go back to the beginning. On the good side I will be able to get some other things done this morning, once I have written this I have no excuse to not getting my hair dyed today, so as always every thing that appears as a negative will have a positive within it.

This is going to be an odd week all the way through, not only as Teressa will be here on Thursday and Friday but I just have this feeling that everything is slightly off center if you know what I mean from that. It isn’t anything solid or with any great reasoning behind it, just a feeling that started to grow a couple of days ago that something is about to change, I suppose all I can do is wait and see if it works out that way or not, or maybe I had a premonition about Twitter, lol. It is strange how we do get feelings about things, I know that tests have been done repeatedly by sciences to see if there can be anything solid behind them, for the results to come back constantly that there is nothing, but I have always thought that there has to be, or why would our minds come up with them if they served no purpose at all.

I’m really not feeling great today and I could use that as a great excuse to just going back to bed early for my nap but I know that the truth of how I feel really is down to being rather pissed off and a bit tired. It is really strange the way that outside influences really changes everything about how you feel physically, I suppose that is the ultimate proof that things like depression can be triggered by just not being happy with life, but on the other hand if that was true and was taken to the ultimate degree, we would all be on huge doses of antidepressants all the time. As is always the danger with MS my pain levels are up today, as I have all my routine out of sink, wondering around on line trying to work out what to do next isn’t the same as sitting working to my timetable. MS and many of the auto immune illnesses react badly to changes to routine, yes I am still sat here at my desk and yes I am still on line but no I am not in my routine and it is upsetting me. Sounds silly but it is a huge issue. I have explained before how the moving or physical items can through me into a spin, well this is just the same. I am lost, confused and not sure what to do next. I don’t seem to be able to get control or to be able to move forward with other plans I keep trying to make for the day. I know that sounds nuts but that is how it is and how I feel. There isn’t anything in my logical side that can make the other side or me settle at this second. I will but like most things it will take a little time.

I can’t even settle myself to this totally so for now I am bringing today’s post to a close. I have to put the dye in my hair or I will wonder off that idea as well. The good thing about that is, that once I have started it I can’t stop until it is complete, so that activity will keep me busy for at least an hour.

The Zombie in the corner

I wanted to and still do want to disappear back to bed, it is hard these days to fight against that desire, but I know that I have to as I can’t let myself slip out of routine, not even for one day as I know all too well the consequences of it. Everyone when they are fit ans working have a routine, one that keeps them on track and in touch with everything important to them and their lives, even if they are not aware of it. Once you are ill it is easy to set that routine to one side and just go with the flow, sleep when you need to, eat when you want do what ever you feel like at the time. To me that is the way for it all to go wrong, and very quickly. I can’t speak for other illnesses on this point, but I discovered that MS is more than just a creature of habit upset it and it will kickback hard, when it is already upset as mine is just now, well it is even more important to try to keep to what would be the normal.

At this minute I am fighting just to keep my figures moving over this keyboard and my mind on the words I am thinking. Concentration is one of the symptoms that I find myself at war with frequently and especially when I am in pain. It is bad enough when there are distractions on the screen or on the TV but then add in pain suddenly somewhere and my chance of completing the sentence in one action becomes nil. I have said before that in some ways that can be good, well when a new distraction appears you forget the previous one, but that isn’t an answer to anything just a way of blundering through a day, bit by bit and without much success. These distractions are more than a moment lost here or there, they disrupt my routine and force me to become frustrated, but even that can’t last to long, as I am lost in something else. A glimpse only of the muddle that I find myself today. I have no idea how to keep myself going when things are like this, I fight between what I know has to be done and what I am able to do, I move from one period of pain to the next and through it all I am numb to even myself.

I can see clearly how it is easy just to stop, to give in and to sit there letting the day wash past me, to turn into what I most fear, the zombie in the corner. When your feelings, your thoughts and your physical being are all so muddled up together achieving anything is amazing in itself. I am so far out of my timetable today that I have had to accept the fact I just won’t or can’t actually catch up. Today is by no means a right off on the achievement scale, it is actually far higher than on a normal day, the fact that I have actually manage to write this is enough for me to be content that I can and have achieved. I hope there is enough logical thought in it for it to make sense to others.