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…..

Fixing the gaps

Last night I actually remembered to ask Adam to sort me out a couple of cards to send to my Mother and brother, he had already done it. He realised that I have forgot all about it so when he was sorting out his cards for his family he added them onto his list. Clearly he has noticed that my brain just isn’t here or up to dealing with very much at the minute and had stepped in. He laughed with me when I told him the muddle I had got myself in to when it came to the shopping for Christmas simply because I am just not making sense of dates, although yesterday was the 20th I really wasn’t getting the fact that Christmas day was just 5 days away, I get it now though, just 4 days left. There was one other odd thing that I simply forgot to add in yesterday, and that was I suppose the silliest of the oddities. On Tuesday the shopping had arrived and as always some of it had to stay in the hall as it was to heavy for me to put away, so Adam does it in the evening. Our hall is really dark and I don’t use the light as I am just walking through, but right up until yesterday afternoon every time I stepped into the hall I stopped, trying to remember where the long gone shopping was so that I didn’t fall over. A little more proof that my mind is in a world all of it’s own. What I did notice though was just like the date thing, once I deliberately stopped myself and put some concentrated thought into correcting the error, from that point on I have been find. It is almost like I have to reconnect the broken ends of the link and once fixed properly I have managed to move forward, were if I shake my head and dismiss my stupidity, it just keeps doing it. Life is going to move very slowly if this is a glimpse of what’s next. The brain is such a complex thing and without the knowledge of medical teaching I am groping around in the dark. It would be amazing to have a psychologist read all this and tell me if I am getting it right or making it worse.

I have just been to have my shower and as always I am now exhausted, my whole body feels as thought once again I have put it through a marathon plus and assault course. Something as simple as getting washed and washing my hair is a simple nightmare from start to finish, just getting undressed is bad enough, everything else, well lets not go there. Adam keeps going on at me to do it when he is at home, so that he can help where needed and of course because he is convinced that I am going to have an accident. I do see his point but mine is about far more. The big one is about timing, I have long hair that goes frizzy if I use a hairdrier, so I have to let it dry by itself, this means I have to shower in the morning so that my hair is dry by the time I need to sleep in the afternoon. Washing my hair is also the bit that I hate most, now he couldn’t help much with it, yes holding my arms above my head is tiring but the worst thing is the water on my head. I have tried different temperatures and altered the strength of the flow but nothing seems to make a difference, I get this sharp pains from the top of my head down into my ear and jaw. They are like small lightning bolts, agonizingly sharp . The whole process causes extreme fatigue and pains and help isn’t the answer, and I have no answers or possibilities to get round something that has to be done.

It’s days like this were I look over the past few days and laugh at the mad thoughts I still have of having a job. I don’t know who I am trying to kid with that thought, as I wouldn’t last 10 minutes. In my own little world I am fine and I have all the abilities that I had in the past, but I do still know what reality is and reality tells me it is all just a dream.

Positive Damage

At times it is all to easy to stop looking out and to spend too much time looking in wards, when you are ill and on your own a lot of the day you loose that feeling that there is a world out there. I often wonder if that feeling is compounded by the fact that annoyingly it has manage to get on fine without you, and you just weren’t as important to it as well think we are. I constantly keep coming across people who like myself are ill and confined to their homes and far too many of the are deeply depressed by the whole situation, a bad side effect of spending so much time looking in. I know I am really lucky to not really suffer from depression, I have days here and there that are reaction depression, the type that we all have when something major goes wrong in our lives. But the deep set clinical depression is something that vanished from my life when I was diagnosed with MS, all the depression I had gone through for years just disappeared as at last I was being believed and I at last knew that there was a reason for how I had felt for so many years. But there are then the ones who seem to react in the completely opposite way, diagnosis for them seems to be the trigger for a life long depression.

Having gone through it years ago I can empathise with those who just can’t deal with what is happening to them and slowly slip into that spiral that pulls you further and further down. I know it all to well and I am so glad that I am free of it now, although from time to time that it may come across in what I write as being depressed but I’m not, I am just reacting strongly, something I have little control over due to the damage that has been done to my brain by the lesions I have. I have wondered as well if it isn’t these lesions that have something to do with my upbeat reaction to life. There is no doubt in my mind that there is a connection, well if I can be flung into tears when they aren’t appropriate, why not laughter as well. I know myself that in situations like those of the other day where I was totally stressed in the space of a few minutes by a phone call and in tears before I hung up, equally cleared in less than an hour. I am completely emotionally unbalanced, those reactions are not those of the average human, nor was the recovery from it.

The last time I have a test done to see how I react to a selection of tests, showed that I was loosing it. The cognitive results where strongly not normal, something I knew but it had to be proved. I also know if they did those tests again the results would be worse again, but now I question that word “worse”, as everything is slipping I still remain upbeat most of the time and that sets me out as different from other who are going through what I am, could it be the cognitive damage is actually working to my advantage? Could the damage actually be making me happy? It is a thought but one I can’t prove. I am sure if I submitted myself to a visit to the MS specialist he would want all those tests done again for his research, well they wouldn’t actually help me any more than having them done before did. Doctors seem to be obsessed with tracking things, a tracking that doesn’t actually help the patient, it isn’t as though they can change any of what is happening. I could and probably are totally wrong, but either way as long as I stay on the up side of happy, I know that all of it is easier to handle, I just wish that I could do something for those who struggle to accept what is happening and continue to find the good things in their live, as they are there, just as they are in yours or mine.

Outburst

Adam’s Mum came round to the house yesterday evening, it wasn’t until this morning that I realise I was probably a little rude to her. I was in so much pain last night and I made the effort to leave this seat and move to the settee so that I could talk to her and Adam, as Adam came out of the toilet she went into the hall to talk to him about the cardigan she had knitted for him, I sat with the pain rising all the time waiting for them to come back in but they didn’t. I suppose they were out there for 10 mins at the most then she announced she was leaving. So I stood up and moved into the hall to say good bye, I don’t really even remember how the conversation got there but we were suddenly talking about getting rid of unwanted clothing, I was really proud of Adam for at last actually throwing out two or three bags of stuff the other day, it has by the way taken him years to actually do it. His Mum dropped in that you can now sell bags of stuff and she got £20 for the stuff she threw out recently. I almost exploded, the thought that he might fill bags of stuff and have those bags sitting making even more mess in this house, even for a day just made me see red. I know she meant well but she just doesn’t see things the way I do when it comes to stuff like this, I suggested that she looked at the tip called our kitchen, she saw nothing wrong. No it is normal to not be able to see half the dining table nor pull a chair out as there is so much rubbish piled on and under it. At that I walked away as I knew I was about to burst into tears and start screaming at her, I have spent years trying to keep my home perfect but I have no choice these days other than to voice my disapproval to the mess I see, as I can’t physically do anything about it. There are tears running now as just writing about it, the anger has risen again, I have to wear blinkers to it but it is hard and without other here to see I cry a lot about it. It might sound a little odd but it isn’t the pain that makes me cry often, well not the physical pain but the pain that is caused by being useless for even the smallest yet important things in my life. No matter how far I go back, even when I had a baby or toddler in my home my house was pin tidy. I have never seen any excuse for things to be any less than perfect, so it hurts a lot to see it and be reminded every time I do just how useless I have become.

But that was no excuse for rudeness even when I have no control over my temper or any other emotion I still don’t see an excuse for it. The damage to my brain is rapidly becoming the thing that I am finding the hardest. I haven’t been in control of it for a long time but it is occasions like yesterday that remind me why I don’t really like people in my home, as they don’t know or understand any of that, and I don’t want excuses to be made for me, I am an adult and I shouldn’t have childish outbursts about nothing in front of others. I can’t explain myself all the time at the time it is happening and I guess because after she left Adam came and spoke to me about the pain I was clearly in, that he had quietly apologised to his mother and explained that it wasn’t me, it was the pain I am in that caused the outburst, correct but he should be running around whispering, as it all went quiet before she left, no one should other than me and I can’t live like that, a viscous circle, I know.

Adam and I for good or bad have set ourselves up in a cocoon that allows for my health, neither of us have to continually explain anything to anyone, including each other. He knows all to well what is happening to me, I know that but I still play games, hide things, cover things up, because I feel for both our sakes I have to. I feel safe when I am alone or with Adam, add anyone else into the mix and I am scared of exactly what happened yesterday, a perfect example of how out of control my brain is when it has to interact, without the space of a computer screen, with the outside world. These are the tough things to think about and talk about, I am not a nasty person, but I can’t take any stressed encounters without biting back in a way I would never have done in the past, I am scared as I don’t know how I will be in the future, if I am already unable to deal with 15 to 20 mins of a relative how long before I won’t be able to stay in any form of control with anyone at any time. The world is a scary place when your own brain does things you can’t stop it doing.

Finding Understanding

I didn’t realise yesterday a I wrote just what I was stirring up. The way I write really is a flow system, I start with a few selected sentences and I just run onward until there are no more for that day. It is I suppose a little haphazard but it works for me and I find that it forces the truth as I haven’t sat and worked out what to say, so only the truth can come out with ease. Just sometime though I start my mind working on what I can only explain as an area that I subconsciously had locked away, those things that we know but without a conscientious decision don’t want to think about. That is the danger I suppose of what I am doing, I am opening up my world and my very self in every way to everyone, including myself. I allowed my writing to open a door and my attempts to shut it, haven’t actually worked.

I have been thinking more about what is happening to me and how those slow steps down can be managed as much as possible to keep my life steady. I realise having thought about it, that I was naive to think that just as I have had a series of major events that change everything, that all of what MS will do to me, will be just like that. When I look at just the last year there has been a steady downwards slope that I have been traveling along with considerable ease. But that is because I have been lucky. I have the three parts of my that I see as the most precious intact enough to live my life within the boundaries of my happiness. I still have enough of my memory and mind power to think and write and understand. OK even that has changed due to my concentration problems but ‘I’ am still here. I still have enough eyesight to enjoy my world and enough to use of my hands to be able to type and operate my PC. The third is my hands without them well the PC thing would go. I see those three areas as essential to living a fulfilling life for me, I have lost so much else that these are the minimum requirement to maintain my happiness.

What has changed in the last year in brief are things like my mobility, my digestion and bowels, the pain levels in my legs and pelvis, my concentration and my trigger touch emotions, the stuttering and word lose. All of these are clearly in the progressive changes list, they have actually slowly continued to get worse, they are the drip drip things and the things that I had some how locked into the section I call normal. That is what I have been doing, hiding them in a tag that they don’t belong in because that way I didn’t have to think about it. If I just take one say my emotions, a year ago I only ever found myself bursting into tears when someone else said or did something trivial and instead of being angry or annoyed or even happy I would start crying, now, well now I can do it to myself, I can be writing or watching TV and totally inappropriately I will start to cry. It is always crying never laughter just tears, mind you laughing out loud when there is nothing funny might be more embarrassing than a few tears.

I think I have been hiding the truth as I just don’t want to see it for what it is. I was about to say, ‘I don’t understand why’, when I had a brick strike me between my eyes. It is so blindly simple, a major change is a challenge, I can apply myself to it and look for solutions because I can quantify it, I know exactly what I am up against, but how do you fight or quantify something that take weeks of slow change without being able to see it as that, the difference from yesterday to today is so tiny that it may be no change at all. I can’t look ahead of it, as I don’t know exactly where it is going, or what and how it will change. I can’t find solutions, as what exactly am trying to fix, how do you follow something that is untrackable.

Conclusion, progression is a bitch! It has also answered something else for me, I have a long term project that I have been planning for ages but I keep finding reasons why not to start yet, I now see why. I’m scared that the progression may beat me before I get to the end, as I just don’t know how much time I have before that concentration, or my hands or any other part of my stops me for ever. I am comfortable with blogging as it is daily, it starts and ends each day, but my dreamed of book hasn’t happened, as I don’t know if I will ever be able to finish it and I hate starting something and not finishing.