That next step

I am coming to the conclusion that how I feel now, is probably how I am going to remain feeling. It has been too long now since I felt any other way, for it to go backwards. The problem with haveing a condition that is both progressive and has flares is actually telling the difference. Not all flares are wildly dramatic, unlike my understanding from other blogs that I had read. From them, I thought all flares appeared suddenly and totally destroyed you. In fact, I thought it wasn’t a flare unless you became bedbound, had a wildly dramatic change in a symptom, or found yourself in the hospital. Wrong. A “flare” is any unexplainable change in your health or your body. It’s as simple as that. The key word is change. It can be anything from finding yourself more tired than usual, to losing the use of a limb. If it hasn’t happened before, or not to that extreme extent, plus it lasts more than a day, then that’s a “flare”, just as much as the dramatic stuff is. The final definition of a “flare” is, it also goes away again, maybe not completely, but they always settle down to a large extent. Yes, that does mean with the milder stuff that you can’t be sure until it’s gone, just what is happening to you. Which is why I started to refer to much of my health as being phasic, rather than just having flares and progression. Especially, when I reached the point where there wasn’t a symptom that I hadn’t had before. Health more than any other thing proves perfectly that nothing in life is just black and white. Hence my need for the third state. Progression is my everyday life, phasic, the humps on that road and flares, are the car crashes we can’t escape. Three states make far more sense than just two.

Before I knew better, I thought that health had rules to it, that when you got ill, you would be handed a leaflet that laid out what you could expect, from your condition. The truth is, there are no rules, no leaflets, nothing that helps you through any of it. Worse than that, it can take you years to work that out. Your health changes, something happens that you didn’t expect, and you don’t have the slightest idea what to do next. Doctors don’t help, they’re as much use as a short piece of wet rope. Yes, if you have a dramatic flare then we need them to prescribe steroids, but other than that, they can do nothing for us. So you start working it out for yourself as you have no other option. To their faces, you use the terminology they do, to ourselves we name things with words that feel are right. So if some symptoms come and go, a bit worse this time than the last, sticks around for a while, then fades away, well in my world they’re phasic, not “flares”, nor progression. When they step up and don’t go away, don’t get any better despite doing all the things you can think of, well there is no choice left, other than to accept it as progression.

It’s been weeks, closing on months, since I last felt anything close to what I once called normal. There’s another word, “normal”, there isn’t anything to replace it, so it’s there. “Normal”, it’s something that also changes, it’s never the same for more than a day, so how can it be “normal” Well it’s another way of saying we have accepted where we are, as how we will be forever. It doesn’t mean that we like it, it just means that we have accepted it. After weeks of writing about how things are wrong, how I don’t feel as I should, well today, I’ve accepted that this is my new “normal” thanks to progression. This isn’t phasic as I hoped it was, it has done nothing but get worse and stay worse. If progression needs a definition, well that’s it.

I find it hard now to believe that I was ever like other people. That I once went out and about. That I could once run, climb and dance, all with passion and joy. Which is actually one of the cruelties of this illness, it’s taken out someone who lived life with passion. Who never once had a car, avoided buses and trains and took pleasure in just walking everywhere. I look now at a world filled with people who do everything to avoid using their legs, now I can’t, where is the fairness in that? Here I am stuck using a wheelchair just to manage to get from one side of a room to another, yet, this is my normal. I guess, “normal”, is what you make it, in whatever way you can. Mine now means feeling nauseous and tired without the energy to just stand up and fetch something. Constantly tired, able to sleep at the drop of a hat and with a body that knows more pain, that it does silence. Every change that I go through, I name them all phasic, in the hope that they will go away. If I’m honest, it ceased having any hope of it being such several weeks ago, I just kept hoping. Hope is something you hold onto tightly and grip gets even stronger the longer you are ill. Without it, what do you have?

The good thing about declaring the new “normal”, is it means I can now let go of the old. Just as I forgot about running as an option, I can now let go of the possibility of ever being truly awake and I can look forwards from now. That’s why accepting is good, it’s not about giving up, it’s about moving forwards and stopping that terrible yearning for the past. If you spend your life looking back, you’re never going to move anywhere. So here we are, at a new dawn and life is good.

 

Please read my blog from 2 years ago today – 04/03/2014 – Just deal with it

I seem to be slightly closer to be on track today which is odd if you consider just how little has actually changed since yesterday. Out of all the things that could possibly drive me mad at any time, this hesitation, or stuttering fingers is really driving me nuts! I hadn’t realised just how much I actually express myself by typing and just how much time I really do spend every day communicating without saying a single word. I suppose I shouldn’t be surprised to find that my vocal stutters have relocated themselves into my fingers as thier power to anger me through talking had become somewhat limited once I became housebound. Joking aside, my dexterity hasn’t really change that much in the last few years, yes I drop small fiddle things, spend more time than most searching around the kitchen floor for that coke bottle cap, or tablet……

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……

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I didn’t expect it to happen, but yesterday actually worked out far better than I could have expected. So, OK, I was beating myself up for the first half of it, but once I got past the point of not being able to function, because of the clock. I actually made it work. Lunchtime arrived as always, just after 1 pm, despite the fact, I started my day a whole hour later than usual. I made it, to the right point in my day, at exactly the right time. It actually felt really good, something I had planned out, thought about and pondered over, worked first time. No, my energy levels weren’t suddenly boosted, but that would have been expecting just a little too much. That I know is going to take time, hopefully, not as long as it took to reach permanent exhaustion, but time. The real test will be when we reach next Saturday, will I have managed to get that so longed for extra sleep, and will Adam have managed to get out of the house on time daily, without me sitting in the background reminding him the clock is ticking?

I know that it’s a huge hope, but if I can make the new system work for us both, I actually think it should change a lot more than just sleep. When you spend your entire time tired, worn out to the point that you no longer really function as a person, more existing as an automaton, just going through the motions, well, you become lost. If I am honest, I have been lost for a very long time now. There have been glimpses of me, the odd flash here and there, but the rest has been more like living as a shadow. Illness does that to you, it doesn’t just steal your health, it steals everything about you. I know I am never going to be the bright, active, bubbly person I once was. I’m never going to stick on a CD and dancing until I drop, as I’d drop on the third beat, which would kind of defeat the purpose and also be cheating. All I want is to be able to put life back into my voice and my mind. Sometimes, it can truly feel as though I am no longer me, but that, I have worked out, is a state of mind, more than a fact.

All of us have this image, this montage of all our best bits, we are seeing what is actually a mythical creature that never existed, but we tell ourselves, that is us, and it’s who we were and should be forever. Pick away at the edges, and all its component parts, start to fall apart. They belong to different ages, different phases of our life, they were never, all there at any one single time. I want to be somewhere in my 30’s again, with the perfect unmarked body I had when I was 16, but with the tone and energy I when I was a DJ. I want the hair, I had when I was 34, the zest for life I found when I was 28, and the innocence I still had when I was 18 and every speck of knowledge that I have right now. The talents that were stifled when I was in my 20’s and so much more that it would take my hours to list. None of them, all ever belonged in the same time, she is my mythical creature, who never existed and therefore, there is no way, she can ever exist again. So that voice inside me, that is still screaming, “I want to be me”, is asking for more than the impossible, as in many ways, I don’t even know now, who I am. The last 14 years of my life, have been so locked up in my health, that me, is someone I don’t really know, I just don’t want to be her. “My life was never meant to be this way”, I guess, ill or healthy we all say that, silently inside to ourselves. When Adam and I first married, we had such plans, our lives were going to be so good. This was supposed to be our first home, the place where we set out together, learned how to put together a home and then to sell it, and moved on to bigger and better places to live. We had our lives, everything worked out, right through to that cottage in Arran, the place that would be our final home, an early retirment together. It didn’t work that way. Two room plus utilities, our first and our only ever home. I suppose, we all once thought we would be superstars, bright lights that would burn a trail, taking with us and leaving behind us, nothing but happiness to those who follow. Not sat in a wheelchair, locked inside a home that we love, but would do anything to be able to leave. I have long since given up the wish to be well, to be fit and healthy. I’ve accepted what has happened, and that it can’t be changed, but is it really too much to ask, just to have a little more life, in my life.

I try hard not to dwell, on what I didn’t have time to do, before the door closed, or the plans I once thought, would come to fruition within them. Looking backwards is a trial, one that should be avoided, unless it’s on only the happiest of days. Those days, which regardless of health, would always have shone, the ones that make me smile and always make me happy. Forwards became the only direction I would let my legs, and now my wheels to take me, but some way along that path, I feel I got lost. I am more than someone to be fed with tablets, kept topped up with fluids and occasionally fed. I know I’m a person, but who, I’m no longer sure. I once had so many tags that spoke of me, words that I happily used to describe me, but most have now fallen off, dropped along the way and thanks to my health, I can’t reach to pick up again. That’s what chronic illness does, it steals, it strips away and shreds our lives into such fine pieces, that we can’t put them back together, leaving us only questions, always without answers. We can rebuild, put together a new life, over and over again, but it is only a matter of time, before, it’s all shredded once more. Each rebuild gets harder, each has fewer pieces, as we don’t want to make those mistakes again. We have to build within our strength, within our diminished energy levels and our dwindling abilities. No matter what we do, we find ourselves back here again, asking the same questions and desperately seeking for who we are and what we’re good for.

As long as there is a smile, that glimmer of happiness, we know there is a purpose, a reason that we keep trying to live. Maybe, we shouldn’t be asking or searching for who we were, rather who we are. Maybe, there is more than one reason, why, we can’t make our mythical creatures live. Maybe, we just need to accept who we are, like that person or not, it’s the only one we have, the only option open to us now, as all others, have been taken away. I’m not mythical, I’m human, and a sick one at that, but I can’t change that, this is what life dealt for me. God, I wish I had learned to play cards.

 

Please read my blog from 2 years ago today – 21/12/2013 – Amputation hurts

I seem to be having trouble with sitting again this morning, there just isn’t a position that will let me sit for any great length of time. It is always the simplest things that seem to make life difficult or uncomfortable……

 

 

 

 

 

Week five: It’s not over

If there is one truth that can’t be escaped, it is the fact that there are as many right ways to live, as there are people on this planet. We all like to think that we have got it right, that we are the ones who can show other the way to be happy, but the truth is, none of us can. When it comes down to it, we are the only people who have both the right, and the understanding required, to know what is right for us. So why is it, that every day millions scour magazines, websites and TV channels, for that ultimate piece of wisdom, that one must have item, or that perfect person, who will make our lives better, if not forever, at least for today? If we were content in our lives, we wouldn’t keep searching in the hope that there is something out there, that we just have to find, and our lives will be perfect. It’s a fact that one group of people have made a living out of for the last century, the marketing men, they know our self-doubt and they play on it constantly. The more that they exploit that discontent, the more they make it grow, creating the perfect circle that keeps them in work. They, though, are the last people that we should listen to because if we are discontent with our lives, it is only us that can fix it and that takes a huge amount of trust.

When I was first diagnosed with PRMS, I went through all that normal things that I believe is all part of accepting what is happening to us. It is without a doubt, one of the hardest thing to go through. Our entire lives have just had the rug pulled out from under us, and rather than landing on the floor, we are like “Alice in Wonderland”, falling and falling and falling, with no idea when or where the bottom of that hole is. We grab at all those roots sticking out of the sides, at all the objects that we pass, the occasional one, appears to slow us for a while. All too often, they fail and we go on free falling and searching. Eventually, as time passes, we learn enough to slow our speed down to more of a float than a fall, but floating in space, isn’t an answer to the millions of questions no one has the answers to. I believe it is at that point that our future is really written, we either accept totally blindly, that there are no answers, that this is our life and we had better get on with it and live, or we fall apart. Blind trust isn’t something we as humans are trained to do, in fact, we are brought up to do the total opposite. We’re taught that everything has to have an answer, that all illness has a cure and that doctors are gods. That if we just demand enough, complain loudly enough, research and demand again, we will get better. They lied to us. But if you can accept that, and then take that leap of faith, to put your trust in nothing, and no one greater than yourself, well, you’re still not going to get better, but you can have a good life and you can stop both floating around and better still, falling.

It goes back to my opening lines, ” there are as many right ways to live, as there are people on this planet” and that isn’t changed by health. Actually, I think our chronic health, makes it even more true. Like it or not, society sees us as a subsection, not quite like them, but regardless of that, we should still fit into the plug hole created for us. You can hit yourself over the head with a mallet forever, once you have a chronic illness, you will never fit, ever, again. Society, quite wrongly, puts health quite far down on the list of important things required to be seen as a successful human. We judge ourselves by our looks, our brains, our personalities, our earning abilities, our social acceptance, social standing and our likeability, not all in that order, but all more important than health. Wrong, because without health, all of those fall apart. As we were falling all those things bit by bit were being blown away be the updraft, we may not have seen it at first, but eventually, we can’t help but have to. Keep falling and you fall into another endless pit, the one of depression, make that leap of faith and decide to trust yourself, to build your own life, your own standards, and your own understanding of self, and you stand a chance of living well, despite it all.

For me, one of the things I had to get through to my pig-headed self was that there was nothing, I can control nothing and there were no battles that I can win. I didn’t possess the power to change anything, it was all going to happen just the way it wanted, regardless of what I did. Friends left, work left, money left, health left, mobility left, looks faded, weight went on and the outside door, closed forever. I couldn’t change a single thing, or control even a single hair on my own head. The only thing I could do was live and that had to be my starting point. Not much to build from you might think, but it was the only thing I had, that hadn’t left, that I had true control over. We all have that ultimate power, to decide if we live or die, it’s the only thing, that once you have had what feels like everything stripped away from you, that is left and is ultimately the only thing we ever have true control over. It took me three years of being housebound, to realise that I had to stop looking outwards for the answers and I had to start looking inwards. If we are going to be happy, if we are going to have a life that means something to us first and other secondly, then inside is where we all have to look. It’s not always pleasant and it’s often almost impossible when your fighting with a body that does what it wants whenever it feels like it, but inside us, is where we find the true us, our true desires, needs, wants and goals.

Recently, I had forgotten all of that, I had let myself be beguiled by all those baubles of life that none of us really need, the things other think we want. I had let myself question what was happening to me and where the answers were to making it all go away. It couldn’t be made to go away 14 years ago when it was diagnosed, it isn’t going to be made to go away now. I can’t get back those who are gone, or the things that I lost. After 5 years of stability, I was falling again and life was out of control. I can see clearly now what through everything out of kilter, why I wanted so badly to make things change and it was all my own fault. I stupidly thought that accepting the loss of being able to walk was as simple as sitting down on my wheelchair. I didn’t think that I had to do anything else other than that, after all, I had done it before. Because I didn’t take the time to go through all those steps of loss, and just leapfrog over them all, what I did was open a huge gash and blood was flowing out in all directions. My attempts to patch it were feeble and ineffectual, I was in denial of the fact I was grieving. When you grieve, you don’t just grieve for what you have just lost, you also open all the grief you have ever felt, in the past.

Every step that our health takes, even when like this one, we know it is written there in our future just waiting for us, still hurts. I thought I had learnt that lesson, that I was passed all that stupid stiff upper lip rubbish. It has its place in front of other, but to ourselves, never. I need to look inside, to myself and to live my life, not the lives of others. I have to accept again and to rebuild around what has happened. Just being able to make my way around the house without bumping into things, is learnt skill, it’s not acceptance. Enjoying being able to do things for me again is a bauble, not acceptance. Finding pleasure in just sitting quietly enjoying a meal I made and a break from sitting here at my PC, is emotion, not acceptance. There is no comparison, nothing that can even bring them into the same sentence. My legs are never going to carry me more than a few steps ever again, fact. Easy to say, even easier to type, hard, really hard to accept. But I have to and I have to do it fully, without brushing any of it under the carpet and hope that it will somehow stay there.

Please read my blog from 2 years ago today – 14/10/2013 – The truth of what life requires

Another week of who knows what? I know that logic says that if you are housebound and ill that everyday should really be like all the rest, but it never really is. I thought when I was no longer working that I would find it impossible to…..