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…..

Aged by the invisible

My day started just in the way I expected with a snipe from Adam, as I said he read yesterdays post once I had gone to bed and wasn’t happy I hadn’t told him at the time, I asked him what he would have done and he shut up after one word, “well…”. In other words my actions were 100% correct, all that would have been achieved would have him being worrying and insisting I went to hospital to be checked. I know that he doesn’t like not being told what is happening, not just when it comes to me, but also with his extended family, but every conversation regarding others health have ended in the same way, with him looking angry, but admitting he couldn’t have done anything but he just wants to know. We all seem to have a desire to protect him from these situations, I suppose because we all know he is a worrier, and a worrier who has the instant instinct to presume it is the worst case scenario. A sulky reaction after the fact is easier to handle.

I slept well last night, but I seem to be in one of my sleepy days, I could happily curl up and disappear into sleep, with little thought or consideration for where I am. I remember days like this when I was at school where you would prop you head up with your hand, so it looked as though you were reading something or thinking, then slipping into a light sleep as you had no other choice. Only to be woken if you were lucky by a friend trying to keep you out of trouble, or the teacher. I have noticed in the last few years that I have had a lot of what I would call child like reactions to situations, almost as though I have digressed. I don’t remember every falling asleep when I was working, regardless of the lack of sleep or anything else, but here I am again as an adult doing what I did as a child. Wanting to sleep where I am, sleeping a full 12 hours per night and taking afternoon naps. I know my emotions are often childish, as I cry at anything almost as a defense at times, but that is the lesion damage. But crying because something isn’t the way I want, childish, add in many of the symptoms I have and I get more child like by the second. I suppose a lot of illnesses do this but seeing it happen to yourself is odd, others well that is just the way it is, but yourself, is puzzling.

I think that is often the worst thing about being ill, you are forced to see yourself changing. Dealing with pain and so on is just something you do, but seeing yourself slowly changing into a combination of appearances and actions that you have seen in others and pitied or internally labeled as crippled, is really odd. When I see myself doing something as simple as walking, I am slow, unsteady and at stiff legged, grabbing on to doors, sliding my hand across the wall, well that is the way the really elderly move, not me, but yes that is now me. Every physical change is yet another label I gave to others and now have to wear. Looking in a mirror I now see an aged face, with clear signs of the pain and illness that I have to live with, it is no longer an invisible illness, as it is taking it’s toll. I don’t know which is worse, all those years when no one would believe me that anything was wrong, as I look fine, or now realizing that my entire body shows, to even a stranger that I am now disabled and I am daily looking and getting worse. It is bad enough getting my head round the normal stages of aging, the lines, the grey hairs, but add into that all the rest, well it is often more painful, than the spasms and nerve pains. I don’t feel as though I am about to turn 52, in my head I’m still 25 or maybe 30, not unusual there, but it is my body that lets that all down, I now look in my movements and actions, as though I am nearer 80 than any other age. The dream I once had of aging disgracefully has long gone, as I have aged before I even had that chance.

So here I am on one hand a child again, not in control of my body in anyway, yet I appear as an aged cripple. Two ends of the same story but both hard to handle when it is the same person, worse still it is me, that is hard to understand.

To tell or not to tell?

I haven’t shed a single tear and I have been up now for 4hrs, so I think I am on the right track again, I knew I would get there but well it’s hard to heal yourself when you know there is no true recovery. I am only guessing but I am sure there are thousands of people out there who have or will go through exactly what I have just done. I am sure that my skillfully built cocoon contributed to it, but I still feel that it is probably the best place to be. When you have to live in your home, in just a couple of rooms you have to make it a world that supports and protects you. Without all the safeguards that have kept me going for years now, the perfect little world that I can deal with and doesn’t challenge me hourly is important, but I think I may have done my building just that little too well. I love the idea that I can sit here in my crystal tower, safe from the outside world hurting me and challenging me, but I can also see now that not having people who show you what is wrong and what is getting worse, may well not be the best way to live.

It is partly by design but partly because I have so few people still in my life, who actually come in and make me realise and face up to the fact that things are worse, that I haven’t been just coasting along level for months and years. Although Adam is here he doesn’t see it fully, he is here everyday so the slow slips downwards are just another day not a point to be noted. I also think if he did notice something he probably wouldn’t tell me anyway, thinking he was protecting me from by saying nothing. It is a hard one I suspect for all carers, do you tell someone that their speech is worse or not, is it helpful to do so or harmful, is it going to sound caring or feel like an attack. I guess that it is not easy to know what is for the best, and that it will be a growing issue as time goes on. I actually don’t know the answer to that, I think at the minute I would deal with being told things are worse, but as the damage increases to my brain will I be able to deal with it or react badly in the future. I put so much on Adam already but as time moves on, he will be the only one who can say this is worse, this is better, and he is the one that will be the one who not only tells me, but also the doctors. There isn’t an easy answer, I guess it will be something he will have to judge, can I or can’t I deal with any given situation. For now though I feel more in control, stronger and more able to make a day be a day not a trauma.

I am really glad that I am getting some control back not just because I didn’t want to spend the rest of my life an emotional wreck but I have my next hospital appointment on Friday to see what they are going to do about my Gallstones and what if anything has been found in the rest of the test. When I was there a couple of months ago I never thought that I might have gallstones, to be honest it wasn’t even on my medical radar and the pain and pressure feeling it causes were and are, lower on the list of problems than the terrible gut spasms I keep getting. I have all to often found that I am worried about the things that Doctors see as nothing and they are worried about something you mention in passing. I have waited a long time to get all this sorted out but I really wish now that it wasn’t this week, it seems all too much to deal with, bad timing as life often is. No matter how much I have slept in the past few days I never seem to feel any more rested after it, than I was before, getting up at 6am to be ready for the ambulance to collect after 8am is going to be fun, but it has to be done, after all I have only had this problem with my gut since December last year. 11 months of doctors and nurses tinkering round the edges and getting no where, well I have had enough of it, I need answers now not just ideas of things to try and see if it makes any difference. I just hope that this time we get closer and not be either sent of for more tests or sent home to just get on with it. Before any of that happens I do actually have to pick up the phone and book my transport to and from the hospital, well after all I have only had 2 months in which to do that and it still isn’t done. Time to make a phone call I guess.

Visiting Dimensions

I am glad to say that I am a little better than yesterday, not great but better. I did give in a little early last night and disappeared under the duvet, were I drifted quite quickly into sleep, which surprised me as I hadn’t managed to even have my normal quantity of Gin, the proof I felt really bad, I didn’t even finish one. I am still not really with it and concentration is at a premium but I at least don’t feel like I am floating in a different dimension for the rest of the world, just on the edges looking both ways.

When everything closes off like that those are the times when I can actually sit here and full see that I am not well. Believe it or not it is easy to forget at times how ill I really am. Normal is something that changes for all of us throughout our lives but we desperately want to see it and believe it to be a universal state. Look at every decade of your life and normal has been something different for each of them. It would be great to have the normal of childhood for ever but life doesn’t work that way. My normal is ill, so how to judge myself other than that level of ill is hard. It is when I am like this that I fear I am looking at my future but I have nothing to say that is what will happen, but it is that fear that is the problem when you are living with a chronic illness.

None of us want to see our future as all of us will age and there is a high chance the last years of our lives will not be spent in good health or high activity levels. For many the vision of a old person who can’t hold a conversation as they have no way of thinking long enough to take part, sat there with life going on around them, just waiting for death, is scarey but normal. In a way that vision is acceptable, but I am only 51 not 81, and that could happen to me tomorrow, a lesion growing in the wrong place and I could wake one day to find I have left this dimension for ever. MS plays games that way, it takes things away and gives them back changed, or it can take things away and never give them back. Worse still there is no knowing which area or when that lesion will grow and how long it will take to destroy the nerve for ever.

Things being bad like this are the signs that my MS is at work, destroying something or other and it is working at a higher rate than ‘normal’. If you get a cold you get better, that isn’t the case for me. My illness is heightened and this could be my ‘new normal’ or just a visit to the future, either way it means I have to start to think about dealing with it, part of me says wait and see, but wait for what and for how long? I have learned to accept and adjust and I have always found my way through and I see no reason even if things stay as they are, that I won’t be able to do the same but my ability to do anything is going to be changed dramatically, even my ability to keep all my twitter going as well, I have been badly lost in what I have being doing, with out my spreadsheets to keep checking things off as done, nothing actually would be. I really could just sit here and do nothing. Nothing at all. I can’t see today turning out any different from yesterday, but what else can I do about it right now?

On going denial

One week on and my back is still hurting, I have to admit it is better than a week ago but I really did think it would have gone by now. Adam is back at work today so normality is once again restored in the home if not in me and yes I did make a start yesterday with my writing so I am no longer looking at a blank page if you like, I guess that unlike this blog I will do a lot of rewriting as this is daily I don’t really have the time to do that, I write from start to finish then check it over to ensure it will makes some sense to the reader, part of me thinks I should maintain that style, but it is hard to for some reason.

I have found myself thinking a lot about the post I wrote the other day about my decision that it was time for me to stop using the cooker without Adam in the house, I’m not going back on that decision but it has left me wondering how many other things will appear in time that I wouldn’t be able to do safely. We already had to change the bathroom from an over bath shower, to shower cabinet and I at the same time managed to get a raised toilet fitted so our bathroom which should be safe and easier in the years to come, although I know Adam would still rather I only use the shower when he is here, which I admit will probably have to happen eventually, but not yet. The two rooms that I guess will have to be adapted in time are out living room and bedroom, at least the bedroom will be a case of changing the bed for one that is easier for me to get in and out of. This week while my back has been sore I have had a great deal of trouble getting out of it, although I have managed with a slide and twist. It has opened my eyes though to the needs of the future as my muscles weaken all over I won’t be able to do this by myself, and I need to, as I sleep not only at night but in the afternoon as well. I hate the idea of having a practical bed rather than one that looks good and fits exactly into the space, any change in size would be a big issue as our bedroom isn’t exactly huge, there isn’t a spare piece of flat wall anywhere other than at the door as we have two wardrobes and two draw units that fill all the space to the centimeter. Change anything and something else would have to go and them what do we do with our belongings? In that respect I realise now that I should have done more work on the house when I was still working and had the money to, but no one expects to be made redundant and unable to find another job.

Like so many other people these days we would need a lottery win to be able to do everything that would make our home a better layout for going forward, as yes there is probably a few changes needed in the living room as well. I suppose I didn’t do it as like everyone else there is a denial that goes on for ever, I still find it hard to get my head round things like the cooker, I had the idea in the back of my head but my expected dates for any of them to be still years away. So how soon could all the other ‘one day in the future’ items actually arrive? It is easy to say ‘I wish I had’, but it really was bad planning and huge denial on my part. If I could go back and sort out all these things, well I would, and I would now have a home that I will be happy with how it looks going forward and would also be adaptable. Anyone out there heading down the same path please think and act now while you can, not what I did, blindly head onwards with blinkers on to the future.

I suppose that denial will continue regardless what I do or what I try to do, and the reason is easy to explain, no one wants to picture themselves becoming more and more pathetic and frail, but that is my future and I don’t deny that, I just deny the timeline it wants to take, as it isn’t the way I want it.