An unexpected truth

We kid ourselves over and over that we will learn the lessons that our bodies are trying to teach us, but nothing in life is that simple. We tell ourselves over and over that we can’t do this or that, but we keep right on doing it. We sit and nod our heads, as our loved ones reassure us, that they can manage and we have to stop pushing ourselves. We do all these things and then, we go right on and do it all over again. I have lost count of the times, that I have worn myself down, into a mear shadow, how many times I have made myself so ill, that exhaustion is of no importance, have I learned anything from any of them, well maybe a little, but clearly not enough. All my life I have been stubborn, I have been determined to learn every lesson myself, clearly I haven’t changed, and I have a funny idea that I probably never will. I have noted over the years, though, that the scale of my stupidity has shifted. I no longer climb ladders, attempt to spring clean the house in a day, or even to clean a single thing ever. The odd breakage probably had something to do with that as well. It’s odd how sobering a broken ornament becomes, considering the threat of broken bones isn’t.

If my thoughts are on the grandiose, my body has at least learned just how to put the brakes on, when it comes to my impossible schemes. A convenient set of spasms, a wobble as I try to stand, those everyday reminders that I’m not quite the person I was. So the ladders remain in the cupboard, the bleach in another and my brain busily comes up with an alternative, something more manageable, something that doesn’t need me to stand all the time, that will allow that feeling of completion, but won’t kill me, along the way. As they’re still on my mind and still affecting my body, let’s take those pancakes, as an example. Making pancakes isn’t a grandiose scheme, it’s an everyday task, it’s the normal, the sort of things that we teach our children when they first ask to learn to cook. So why can’t I do it? Simple, because I can’t make that mind shift, that step needed for me to accept, that I’m now that child, the person who can do nothing and has to have everything done for me.

The longer that I am ill, the longer that I have been thinking about this. My conclusions though are the thing that more than surprised me, and I know they are right because, we all know what it feels like, when that right answer, appears in front of you. We don’t learn. I don’t believe, that I learned a single thing about my limitations, if I had, I wouldn’t even spend time thinking about doing the impossible. I would have stopped still trying to work out a way, of making all those things possible. I wouldn’t in my head, still be creating new gizmo’s that might make this or that easier, make it something that I can do. The truth is, no matter how good the gizmo, I still would be able to do anything. So I haven’t learned, because if I had, I would just be saying OK, that fine, I won’t. If I had learned anything, I wouldn’t be torturing myself almost daily trying to do what I failed to do the day before. That’s not learning, that’s stupidity.

I haven’t even accepted my limitations, as accepting again means sitting back and not thinking. If you accept, then your not stupid. Accepting is a thought out, reasoned analytical process. It’s actually beyond just learning, as learning means you don’t stick your finger in the same flame that burnt you before. Accepting means, you take that lesson onwards in life, and by association, know not to put your finger into or near anything that is hot. A reasoned analytical process. So to be able to accept, I must have already learned, and I’ve already proved that I haven’t. I know that I have accepted my illness, that I have accepted to some extent my limitations, as otherwise I would still be trying to go up and down those stupid stairs that keep me apart from the world. So there must be two levels to acceptance, the one that we learn and the one that is a blind reaction, or is it? If it were a blind reaction, then we would do it to everything, and that just isn’t the way humans are, so something else is at play, something else, is changing our behavior.

At best, if anything, I have grown accustomed to not being able to do things. Over time, I have grown used to not having the energy, to not having the strength to do those things that I want. It has been a long slow process. If I sat Adam down, and we discussed it, he would agree with every word I have written. He has spent years pulling his hair out, trying to stop me doing, what we both know, I’m just not able to. He eventually gave up, as he learned that he wasn’t able to stop me, any more than I was. The problem is, we can’t unlearn. Once you know you can do something, unknowing it, doesn’t exist. So we slowly become accustomed to failing. We become accustomed to not have the energy, to not being able, and use to, a more sedentary life. It takes time, but just as I am accustomed to being alone all day, I am accustomed now to not rushing around cleaning everything in sight. Once it really hurt not being able to do those simple things, I still wanted to, but I didn’t. Now it’s because I am used to doing this, and this is what I do. We adapt, that is what people do, we adapt to our limitations and modify our expectations. Just like being forced into changing your line of work, you adapt, and in time, you become accustomed to it, most even find themselves happy in their new role. Disability, is just the same, just more dramatic.

Letting go, handing over the responsibility of life, is hard at first. Again, Adam can vouch for that. At first, I made his life hell, followed him around, double checking everything, but as I became accustomed to it being his role, not mine, I let go. Humans are amazing, we can adapt to anything, we may not want to, but in time we all do it. With the right attitude, we can even enjoy it. What’s better than having someone who does everything for you? Clearly, doing it yourself, but when you can’t, it’s the greatest gift in life we have. We just have to remember to tell them so, every now and then. I have lost count of the number of things that I have agreed I am no longer able to do, as logic is a powerful force, but I have always adjusted to the new reality, not learned or accepted, but adjusted. The future holds some that right now, I don’t believe I will ever be able to adjust to, but then again, I never thought that I could have adjusted as far as I have, yet here I am. Unlike the process of learning or accepting things, you don’t actually know your adjusting until you look back. At the time, you think you fighting, showing this disease who’s boss, but we’re kidding ourselves. All we’re doing is fighting the process that will eventually always win, we always adjust. As for the future, whether I like what lies ahead or not, whether I believe that I can live the way that is predicted for me, I will adjust, but how far. Is this game unending, or is there a point where we can adjust no more. As yet, I can’t answer that, but who knows, as I said, humans are amazing.


Please read my blog from 2 years ago today – 29/01/2014 – How “it” changes

There are some strange things that I have become aware of as the years of illness have passed, one more than any that you simply forget how “it” used to feel. That “it”, well it is almost everything, from how……

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…..

Now or Later

The start of another day, and it all seemed just all to normal. I have said repeatedly that I hate that word as it normally refers to what is average for the population as a whole, but when it comes to my health at any given point in time, there is no other word to use. Today is normal, not your normal, I will agree but that is the problem, we all to easily adjust to our situation and take it from there. It really is a problem that I didn’t think much about until recently, if we didn’t adjust with such ease, would we maybe fight just that bit harder to maintain our full health. I am not saying that it is mine or anyone else fault that they have through illness landed up where they are today, but I just can’t help wondering that if I had put in just that bit more effort into walking when things were getting difficult would I have managed to walk for just that bit longer. Questions that I know there is no way of answering.

Being able to adjust is physiologically clearly a great thing, otherwise I would be totally engulfed in depression and I probably wouldn’t be writing this now. I don’t think that I exactly gave in at any point and just accepted what my body was doing, but I did give into the nagging from the medical profession and accepted my wheelchair. I know they were just trying to offer the help my body needed but it will always be that niggle in the back of my mind. I suppose that I have good reason to feel that way, as I had no diagnosis for nearly 20yrs and through out that time I managed on my own. I know they worked out what was wrong because my illness changed from relapse remission to progressive, but it also opened the door to being allowed to be ill, before that I just had to keep going no sick leave, no feeling sorry for myself, just pushing on through life. I am grateful for all the help I have had, but I think you can see what I am saying, knowing what is wrong makes you feel sane, but it makes room for so many other things as well.

I’m no doctor or a physiologist but living through so many changes and so many peaks and troughs of health, forces me to try and understand why or how I accept or react to what is happening. I have found that I react amazingly well to the major thing, but get easily frustrated and even at times distressed by the smaller things. I know that sounds like the wrong way round but that me I guess. The morning I woke up to find my left arm no longer worked I managed to get dressed and to go to work, I don’t remember even the slightest tear or anything other than a matter of fact attitude, and being annoyed as I burnt a tuft of hair off with my hair dryer, that distressed me more than loosing the use of an arm did. Back to front, no distress when I have knocked myself out, gouged cuts in my arms or any of the major things. I suppose they are all things that are out of my control so why get upset about it, it won’t help me or anyone else either. Maybe that is why I cope better than some others, when things go wrong I put my energy into how to work round it and with it, rather than what I can’t do any longer. I focus on life being as normal as possible and that is the normal I don’t like, but I use it as a gauge, it allows me to try and bring my life as much as possible in line with the rest of the world. I know they will never be equal again, and forcing myself now is to late, the damage is done, I just have to live to the fullest that I am now capable of and remember to be happy that I can do it at all, as one day, well I won’t be. How I cope when that happens well I guess we will see.


I seem to be always finding excused in the last few days not to do anything, I’m not sure why but I was even having to push myself to write and that isn’t the normal feeling for me at all. The only thing I can think of is down to my left hand. As I have written about on several occasions I lost totally the use of my left arm and despite it returning it never came back fully. It has frequently had me believing that it was going again due to strange feelings in it or pain, well once again it is playing with me. In the last few days I have lost the odd finger for a while and then it returns and of course typing makes me very aware of, and it is hard not to keep waiting for something else to happen, expecting the whole thing to just vanish again. I suspect that anyone would be the same but I take these things personally now, it is almost as though I get upset when I have adapted everything around my MS and Fibro and it then starts doing rotten thing to me that I don’t deserve. That all sounds a little childish I know but well it feels like a child like battle constantly, a sort of ‘tit for tat’ situation. I do something that they don’t like and they make me pay for it, they do something I don’t like and I sulk.

The longer I am ill, the more it feel totally like being in a symbiotic relationship, and the more I think of it that way. I have never felt as though I am in a fight to stay well, as I know that is stupid and anyway the more you fight either MS or Fibro the harder they kickback, it is far more about getting a balance and then working with them, and it works. On the whole I have walked the tightrope for years and stayed on it reasonably well. When things start playing up, I start looking at everything I have been doing and look for what could possibly be the reason so I avoid repeat it. If I can’t find the reason, that is when I start worrying about the why and what next. My hand playing up is becoming a frequent occurrence which leads me to thinking that I have to so some reassessing, what I have been expecting from it, may well not be the reality and maybe I need to lower the bar a little. I don’t like doing that with anything because it becomes a notch on the downwards slope, something I always take seriously. I don’t suppose any of us like to lower the expectations of ourselves as it takes a chunk out of our self esteem, like it or not, we are all delicate psychologically, it would be great to just shrug your shoulders and move on again as though nothing has changed.

Progressive illnesses are difficult that way, as anyone with one will tell you I am sure. It isn’t like having for example a broken leg that when healed leaves you with a limp that will never go away, you learn how to deal with your limp and it is part of your life but it isn’t going to get worse, all your adjusting is done and it just becomes a fact. Everyday anything could change in my health, I don’t know what it will be, or what it will do, some symptom I have now could get worse or a new symptom could appear, there is constant adjusting, constant changes to my ability and constant reassessing of how to live with it. I can’t actually remember the last day that I didn’t feel something or notice something and found my mind starting the process just in case the worst happens. Living like that could destroy you very quickly, unless you find your way of dealing with it. I am now careful not to let my mind run to far, as I have learned that it is still more likely not to happen than happen. It is human nature, we all do it and we all need to do it, so if some idiot says to you don’t worry, hit them. No, OK it might make you feel better for a while, but I can’t recommend violence, but the skill is to not worry to far, always remember the balance that the worst case scenario rarely actually happens.

Progression is difficult but you and I can live with it as long as we don’t become paranoid about it. I might loose my left hand again, today, tomorrow or next year, or even never again, but I am aware of it and I am ready for it, but I don’t let myself worry about it beyond that. I set my balance and I have to keep to it not just so I don’t drive myself and those around my nuts but because that level of stress is just what MS and Fibro don’t need, they then have the excuse to run wild and then the worst case scenario is far more likely to happen.

Update, views and affirmations

A new week and I hope a better one! I ate very little yesterday as I wanted to rest my stomach, but I am going back to normal today. Despite the trauma of Saturday night I am glad to say that the MST and I are now making friends, it’s taken a little time but friendships are rarely instant. I am now on my 3rd 12 hrs on 70mg and I no longer feel doped or bad pain, there is always some pain and I think it is unrealistic to expect total pain free results from any drug, after all show me the person who doesn’t have mild aches and pains.

The past 24hrs has once again proved to me that what I believe about getting to know your illness is essential to being able to live with it and move on with life. To me life with MS isn’t life with MS, it is just life, I know my MS and I know the difference to being ill on top of it. I felt the same on Saturday night as you would if you suddenly started vomiting, to try and explain this is a little hard as my view of healthy is skewed, actually that is the simplest way, I now simply see the daily effects of MS as healthy, so anything on top is ill. I guess that sounds a little nuts, but you have to remember my life is a little nuts. I was so drained last night that I had planned to go to bed really early but then pushed on an extra hour for two reasons, I didn’t feel I had seen Adam really this weekend and I had made the fatal mistake of watching a film, I have to say that is one of the things I don’t like with films, they are too long. A one hour program disrupts a short period of time a film disrupts everything, any way I made it to bed at 9:00 but even sleeping to the alarm today, I am still tireder than I should be so it may well be another short day.

How we view illness I think really is the truth behind how we deal with it. If you are a person who believes that you are dieing when you have a cold, I think you will be a person who will find it harder to adapt to a life of illness with independence. I never let illness stop me unless it was beyond my control, the only illness that stopped me as a child was Glandular Fever and as an adult Pneumonia, off hand other than the odd days of dealing with food poisoning and so on, I have kept going, working through it and on. Since MS got me, it has been a psychological adjustment at each stage that has hit me hardest rather than the physical ones, physically I have always pushed through, mentally it has taken longer.

On the flip side those who crave nursing when they have a minor bug, I think, are the ones who at first will feel far more than I did, that they have hit the end of everything. They are the ones I have met who have a need for some reason to tell everyone about their illness, at every turn, holding it up as a flag to the world saying be kind to me, I’m ill. Like the woman I met at the MS society meetings, who had to have it worse then others, and who claimed she couldn’t possibly work as MS wouldn’t let them. I am in no way putting these people down, I really believe they psychologically have no choice in their behavior and feelings, they are as honest about their illness as I am, the difference is I am preconditioned to keep going, just as they are to stop and need help. Truthfully I feel so sorry for them as they are missing so much, but I am not sure how to reach them and show them that any Chronic illness isn’t the end, until the end finally comes.

I find I am writing for more and more reasons, the more people that I meet who are going through their own personal fight with a huge range of illness, the more I feel I have to keep giving a voice not just to me but to them as well, not all have the ability to write for themselves and not all the health to. Around the world there are voices that aren’t heard or listened to, voices like mine, trying to find out what now and what next, what does something feel like, is it me is it my illness, am I going mad or is this to be expected. I can’t talk for all of them as I don’t luckily have all the illnesses, so I talk for me and I hope they find and echo of themselves. If you found yourself with something happening to you, something that is taking away the normality we all prize, then where do you turn and who will tell you the truth. That is all I can promise all those voices, I will tell the truth, where ever that take me and I will continue to shout at all who will listen.