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……
“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.” –
Oh man I relate to this paragraph SOOO much! I had severe chronic pain a few years ago (slowly but surely recovering) and wow did I get a slap in the face as to how the health system actually works. One doctor told me it was in my head. Another told me “Stop stressing, you’ll be fine in a few months.” And another didn’t even look at me when he said “I can’t help you.” Terrible.
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And yet there are millions of people wondering around out there, who still think, you get sick, doctors heal you and that’s it. They pay their contributions to governments and insurance companies, believing that when the unthinkable happens they are there to save us. THEY’RE NOT.The biggest joke of all, is we can’t get that message across to them, so they just keep on paying and keep on walking around in a cocoon made of nothing but lies.
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I know what I’ve been looking for since DX, was some sort of explanation for what I was going to deal with. I was expecting my health TO follow rules. Could be why my depression is so bad. Your post gave me a sense of relief. And has lightened my mind and heart. Thank you.
((Hugs and love to you and Adam))
If there were rule, or a set plan, life would be ease. It is only when life is chaotic that we flounder around grabbing at straws. That’s why it’s best to live for today, and to let tomorrow take care of it self. I know that’s an old saying, but the older they are, the more truth they normally hold.
Take care (((Hugs)))
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You are absolutely right! I do live by that saying with everything…. Except me..I have trouble. I can’t seem to let go of the control over my body. That’s really stupid now that I read that back..😕. I’m still a big work in process. Everyday is a new day to work through my brain and emotions. Hardest job I’ve ever had.
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Well said your post offers relief for me too.
I m often in no mans land as for progression, at least hopefully we can accept it s not just us because it is a lonely place to be. Sharing this and being able to write these feelings to a tee etc..is of immense comfort.
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I love this. So many times people think acceptance is giving up.
It isn’t. It’s freeing. You stop longing for things that used to be.
That doesn’t mean you give up.
I haven’t given up.
I may be able to do some things again, maybe not, that’s okay.
It’s being okay with it that makes it better.
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It’s a message that is hard to get through to those who are newly diagnosed. No one wants to think that they can’t do what they once did with ease. It always takes time