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5:47am May 20, 2014

Remission; what they don’t tell you…

45hundredtimes:

What they don’t tell you about Remission is; you spend a few weeks, months, or for the lucky ones, years feelings good. I say good, but every spoonie knows that term is relative - you know what I mean. You spend that time being able to do things you weren’t able to do before the Remission Gods smiled on you; able to walk further, go out more often, shower standing up, your apetite comes back, you gain or lose that weight that you needed - you know, all the little things that we once took for granted before we got sick. So, you spend all this time running around doing things you weren’t able to do a few months ago, you’re lower on the pain scale, and you never, ever forget what it’s like to be in mind-numbing, screaming, doubled over on the floor agony, but you do get …further away from it. You become less used to it. So when your remission comes to an end and you start to go downhill and relapse again, everything hits you like a fucking tonne of bricks, because you’re not used to it any more. Your whole body just… gives up. You’re tired all the time, your shoulders constantly ache, your legs won’t hold you up any more… and the pain from whatever chronic illness you suffer (lower abdominal pain in my case) blinds you. It’s the same pain you experienced before remission, nothing has changed, but because you’ve been feelings so “W” (not even going to type the W word - that word is cursed for me) - it feels twice as bad as you remember. 

So, that kind of poses the question, is remission worth it? Is a few good months worth the freight train hitting you at the end of it? 
Yes, I think it is. 

I’ve been thinking a lot about this since starting the dexamethasone, because it makes it so that my adrenal insufficiency is barely symptomatic, as opposed to ready to kill me.  But I’m always aware that things could suddenly get worse in a big way again.