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……

The problem of progression

I am sure some of you may have picked up yesterday on what my thinking was, I needed to do a little more research and yes I wanted to talk to Adam about it, which we did last night. I am wondering rightly or wrongly if I am loosing control in my speech center. From what I know now it is possible. I wasn’t sure if your speech center just dealt with your words and talking or if it also dealt with the understanding of others and it does. It has been a slow process over many years that my speech has slowly slipped to where it is now, until about 3 months ago it had stayed in a rather level position and then suddenly it started to get worse and worse, at the same time, I started to notice that I didn’t always understand what was being said to me. Now that I spent yesterday reading what ever I could find on line about it, I believe that it is a reasonable conclusion to come to. I also know totally that it is linked strongly to my concentration, if I am distracted that is when despite trying to multitask as in writing and listening, then I loose the detail of what is being said and it turns into something I can’t understand. So it is something I need to keep eye on but not worry about.

That appears to be what is happening all over me in the past few months, old symptoms getting slowly worse and being joined by new ones that slot in beside the old ones. Progression is as I think I said before a hard thing to actually really measure until there is a big change. That doesn’t mean that nothing is happening in the mean time, it is, but too slow on a daily bases to be able to measure. The form of MS I have is really odd as clearly I still have flares and they throw everything up in the air and I have no idea what is going to be the final outcome. But in a strange way, flares are easier to handle than this slow, bitty, not measured and not clear slip. Flares may seem dramatic and unstable but they usually only last a few days or weeks and then they settle down, leaving behind a battle field that parts heal and parts remain as damaged for all time, but they end!

Progression leaves me with this long list of that bit and this bit and no idea at what point I have to reach, to be able to say it is worse to a significant point. For those who have Relapse Remitting MS on the main they recover as it say they go into remission, my remission is progression onwards and downwards, without any true improvement. So instances like this week where I make a new note on my list, are all part of the game, it is just that I know ultimately it is a game I will loose. there are days when I can look aback on the whole 5 nearly 6 years of being housebound I have slipped a long way but I actually think now that the fact I lost my left hand, and I couldn’t use my wheelchair, was a blessing in disguise. Yes things have got a lot worse, but I am now sure that if that hadn’t happened when it did, I would now be a lot worse. The stress of everyday life was destroying me at a ridiculous speed, removing that stress clearly made a difference, if that hadn’t happened I have little doubt that I would have been in a condition where sitting here still enjoying my life may well have been impossible.

So my list grew, so what, it wasn’t unexpected or even unpredictable, I just wait now to discover what next.