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…..

Stay off those scooter

My tremors are back. It wasn’t hard to notice that they were gone, although I don’t remember totally when they vanished. The closest my memory gets is when I became housebound, but with only one functional hand at the time, I had far more to concentrate on whether or not the remaining hand was shaking. I thought there was a mild sign yesterday, but it was just now and then and nothing solid enough to actually call tremors, more hesitations. My fingers seemed to have started stuttering, a clear shaking motion when I reached for something or found myself thinking about which key on the keyboard I was going to hit next. For years, I have had twitches in my fingers when I try to hold my hand out in front of me. They just won’t stay still and flick from side to side or up and down at will. This though is different, it is there whenever I try to reach for something and not just in my fingers, it is my entire hand. I was reading back something I had written yesterday afternoon when I became aware of a clicking sound. It was my nails tapping on the keyboard as my whole hand and individual fingers where jumping and twitching. Then again last night while watching TV, there was a clear action in my hands when they were supposed to be at rest. I thought last night that it was simply because my arms were fatigued from my first couple of days in my wheelchair, but it was there when I woke this morning.

I can’t help wondering if fatigue was the reason for it in the past. I couldn’t for the life of me put a date on when it first started, but I know when it vanished, once I wasn’t using my wheelchair. Two days after starting to use it again and here it is, twitching and jumping away to themselves as though it had never stopped. I am totally sure that it has been there on and off between then and now, but it is too much of a coincidence for it to not have a connection. Fatigue has to be playing a large part in it. Something about the overuse of my arms has to be behind it, as I do clearly remember have short-lived spells after the shopping arriving and the other week after making my Psyllium pancakes. There has to be a connection, not that it helps much as none of us have a choice about using our arms or not, that’s what they are there for. No matter how annoying the twitches are, they are at least totally harmless.

I may not have actually hit any doors or furniture yesterday, but I don’t have a single knuckle left that doesn’t show the results of my many close shaves. There is a growing pride in navigating the house safely, yes, the loss of some skin and a few more bruises to me, is preferable to scrap marks or chips out of my home. But the reality is that the chair I have is too big for this house, not because of our furniture but because of the doorways. There isn’t one door frame that I haven’t made knuckle contact with at some point, so I will be discussing the possibility of a new chair with the MS nurse when he is here next week. I have to say, if and it is a big if, the NHS will give me an electric chair, I will be more than happy. When it came to bedtime last night I knew I was tired and so did Adam as he offered to give me a push. No, I didn’t accept, on the basis that if I don’t get a different chair, my body will have to get used to this. It has highlighted to me just how physically weak I have become, my whole body is reacting to this new venture and not in a good way.

When you live in a limited space with a body that really isn’t being asked any longer to do much beyond just exist, your entire body starts to shut down. I have been able to see the muscle wastage for a long time. Some by the fact that all I see is skin and bone and other areas because all I can see is unsupported flab. I have to say I have a preference to the skin and bone, but that’s just vanity. My body now sees just sitting as work and that isn’t a joke. I have no doubt that just a few months in my chair will reduce my legs, just as it did before. A few more and my ability to walk won’t just be shaky but probably incredibly hard and that is the reason that I fought against this move for so long. Life in a wheelchair is a danger in itself. It weakens and closes down parts of you that for our own good really should be used. Every time you stand up, or sit down, whenever we walk, even over short distances you are using muscles in your pelvic area that help control both you bladder and bowels. It assists with digestion and strengthens all those tiny muscles that support our back and forms our core strength, the knock on results are huge, especially in an electric chair. At least in a manual chair, there is a lot of good exercise for our upper body and it provides a good cardo-vascular work out, if you are in big enough spaces, not caught in a tiny flat. My desire to at least try to use my manual one is really for my own long-term health, but the realities of using it are just too hard. All yesterday afternoon and this morning my diaphragm spasms have been over active and that pain alone makes an electric chair sound good, without all the other reasons I could list.

I have seen on TV that there are now a huge number of electric scooters being used by not just the elderly, who admittedly may find it a great aid, but by a huge number of people who I don’t think really need them. I know all too well that you can’t judge by appearances alone, but it just doesn’t add up in my mind. It isn’t as though we saw thousands of people in manual wheelchairs years ago before scooters existed, nor do the NHS supply scooters, other than in very rare situations. I had to even fight to get my manual chair as I didn’t need it in the house, it was so that I could continue to work. To them, the point of supplying these aids is to make basic life possible, mainly in your home. Going out and about socially is a nicety, not a necessity. I got it because without it I would have had to give up work, that made it a necessity. Electric scooters are too big for use indoors, so why all the electric scooters? All I can think of is laziness, especially by the large number of overweight younger people I have seen using them. It doesn’t take brains to work out that it is easier to get around on an electric scooter or electric wheelchair than it is to walk, but no matter how difficult, walking is good for us. I may not have walked that much, but even the little I did would have had it’s benefits, otherwise the OT’s who have been here over the years would have possibly suggested one, none did. Now, I am hoping that they will see it as a necessity, not a nicety. I just wish those who are acquiring scooters just realised the harm they are doing to themselves and got back on their feet while they can. Walking can be painful, it can be exhausting, I like millions of others have lived that way for many years, but we weren’t born with legs for no reason and it isn’t just for getting around, it’s part of the health of our bodies. If the NHS don’t give you a chair, it’s because you don’t need one, so please, please keep walking.

Please read my blog from 2 years ago – 17/09/2013 – The force of family

I seem to have set up an on going theme, that I write about everything in here without actually talking either to Adam or Teressa before. I know I do it and I have wondered why, especially as I have at times upset both of them by doing it, but it isn’t meant in that way at all. I suppose it is….

12 and still counting

I am on my own again this morning as Adam has gone out for the day to spend it with his mother who lives thirty miles away. She mover there a few years ago wanting to be away from the city before she reached retirement age. Now retired it means her visits into Glasgow have reduced and to see each other takes a bit more planning than when she lived just down the road or drove into the city daily. I used to always think that I too would want to move into the country in the later years of my life, although I am very much a city person I did love having the ability to roam the countryside foraging and simply enjoying something I used to love. I used to walk everywhere as I never learned to drive, I simply couldn’t see any reason to drive, it wasn’t going to be any use to me so why waste time and money learning to. Even when Teressa was little and we lived in the village of Rhu, our home was 5 to 6 miles from the nearest shop and we still walked everywhere. Once she was at playschool I had a couple of hours to myself each day and more often than not I filled those hours just walking, often having to run, to be there in time to collect her as I had walked further than I thought.

My MS was mild in those years and only in the relapse remitting form, but when I had a relapse I knew about it. I didn’t know what was wrong and I accepted finally after being told so over and over that I was fine. It wasn’t surprising really that I in those years suffered badly from depression, I just couldn’t understand what was wrong with me and slowly came to the conclusion that everyone felt as I did, everyone would have times when their entire body was in pain, when they were so tired that just living took more energy than they had, I decided that I was just weak and unable to manage it as others did. Not surprisingly I suffered frequently from bouts of depression. I was so convinced with all these conclusions that when a flare started I would go to the doctor looking for anti-depressants, they helped, so my conclusion was reinforced, I was of a depressive nature. Now I know that anti-depressants are great at controlling chronic pain, I thought it was the other way that the anti-depressants helped with my depression and with that improved my pain reduced, totally back to front. I have written before about my attempts to commit suicide, all now clear with the knowledge of my illness were mixed into not understanding what was happening to me. Not once since I have been diagnosed have I had one single bout of depression, not even a mild one. I often wonder how many people that are out there who are being treated for depression are actually ill, as MS and Fibro are far from the only condition that can cause it.

I can’t explain fully why I haven’t really suffered from depression since my diagnosis, I think it is mainly because I felt so bad over all those years, believing it was me, I was clearly mildly mad, I somehow invented pain and tiredness, to then find out that it wasn’t all in my head, but was actually real, was then and is to this very minute something that makes me smile and feel relief. I don’t think I can truly explain what it is like to be told and told and told again that there is nothing wrong, you are imagining it and to then be told they were all wrong and I was right, well it was like being given a new life, a very different on but all the same a new one.

Something I have noticed more and more when reading other peoples blogs, who like me have a chronic illness is that we all seem to have a collection of them not just one, not just illnesses but other tags that also have been applied. MS is the most debilitating of my collection, followed by Fibromyalgia, but I also have Chronic Vasovagal, Irritable Bowel syndrome, Osteoarthritis, Oedema, Asthma, Chronic Bronchitis, Macular degeneration, Eczema, Optical Migraine, and Carpal Tunnel Syndrome, I have probably missed something, I normally do. That list doesn’t include the added things that MS has done like double incontinence, these are all separate conditions unlinked to each other. I am far away, from alone with a list, I don’t understand why, but it seems to be the way it works, gang attacks that as time goes by invites other friends to join in. I expect when I eventually get an appointment at the hospital I will be coming home with yet another tag, well why not they say the more the merrier.

Where am I ?

Today is one of those days and I once again I am screaming at myself silently and drying the tears. I’m drained of physical energy and my mind is cold, still and blank, giving me the feeling that I’m not here. I’m just a numb speck inside a ball of pain and fatigue.

I have been taught so many so called coping strategy that are all well and good on the surface but in practice, time wasting and useless. I suppose the most frustrating of my challenges, yea as corny as it might sound, I really do think of them as challenges not problems,the most frustrating has to be my short term memory.

Everyone of us have found ourselves in a room with no idea why, but ten, fifteen times a day when you are trying hard to save energy is enough to at times, have me in tears. When I am on my own I have tried writing notes and taking them with me, or not as I found, I kept having to come back to my desk to find it or on more than one occasion, I have discovered it in my pocket. Some times in the bathroom as I thought to save energy I would go there first. When Adam is here, I look round the room quickly to see what I can do in that room to justify my going there. It turned out I am kidding me not him, failure either has the tag of ‘Do you want me to get your drink?’, the drink appearing with him, or him just reminding me. Strategy one, totally dead.

Repeating the task in my mind over and over until I achieved it. Nope doesn’t work! Repeat and repeat until something catches my eye or my brain just decides to track over to something else, or Adam speaks to me. Strategy two, totally dead also.

The ultimate strategy and the only one that really works. Just accept that I will loose and waste both time and energy on loads of trips to the kitchen/bedroom/bathroom for any and every reason, that wasn’t the original one.:D