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……

Minority to Majority

For one just hour look at the world upside down, a strange request possibly, let me explain, just for today don’t just do things think about what you are doing. Take all the things you find simple through out your day, those simple tasks like getting dressed making a cup of coffee, as you do each of these things try and do them with just one hand, or without bending a knee, or even something as small as not being able to bend your index figures, as though they are paralysed. Each thing you do, stop some part of you from working as normal, through every action you make continue to look at the problem that one tiny part of you, not doing what it should can make impossible the things you take for granted. If at the end of that hour you haven’t change your view of your world, well try it again but do it 100% not just sort off. If you do it from your heart, you will get a glimpse of the life that millions live daily.

I am sitting here looking at my little dish filled with the tablets that I have to swallow this morning, I’ve eaten my half slice of bread and drunk my first coffee of the day, so now it is the tablets. It’s silly how you do something daily and daily you dread doing it. All my life I have never like swallowing tablets and now when so many stick I have some of my medication in a syrup form, but too many meds still come in tablet form only. I just don’t see the logic when everything I take are meds for Chronic Illnesses, the types of condition that means you have to keep on for ever, taking them, yet the makers don’t think what it is like to keep swallowing their horse pills, or how when so many conditions have swallowing problems, that it might be a good idea to have a liquid form where possible. Companies of all sorts really are guilty of not actually employing joined up thinking, taking that step to look at what they make, the how and who may be the end user. Who was the bright spark who thought that making their tablets the size of a micro dot, in a plastic pop-out pack so close together that with poor dexterity you can not fail to pop out more than one? Economics, I know, the cost factor is the driving force but surly a little thought needs to be applied to life as well.

Even before I was diagnosed with MS and the worst of my problems developed, the insistence of the modern world to make things smaller and smaller each day, caused me problems. I don’t know how you get on with childproof caps but I hate them! I always have. I do see the point but I can honestly say that I haven’t had a child in any of my homes for over 20 yrs, I don’t know one single person with a child so surly I should have the option of normal caps on things. The companies who make bottle caps could easily sell packs of normal caps without bottles, they are standard sizes if you haven’t noticed, interchangeable between products and different sized containers, I could then throw away the child cap and replace with one I can manage with ease. They wouldn’t make a fortune, but I am sure it would more than just pay for itself. I am not talking about rocket science just simple options to make life simple. It may seem like a tiny unimportant problem, in my cupboards now are loads of containers that take not just time, but precious energy to navigate their entrance.

Once you have an illness like mine you start to see everything in a different way, nothing is about design first, cost has to be a factor but it is all to often about how I can use it and how much energy does something take. I know all to well now that the same problems I have had for the last few years, are also the problems that too many of our elderly face daily as well, we might not all become ill but we do all become old, regardless how we pretend for most of our lives, that it will never happen to us, we can’t escape it. It would be wonderful to think that all you had to do was write a letter to a company and point out their error and things would change, they wouldn’t, but with our rapidly aging population you would think that they would already be adapting to aid the majority, as that is what our world is facing right now, a society where the minority problems of the disabled are becoming the problems of the majority.