Originally Posted by DorothyDot
You know what is far, far worse than chronic pain and pain flare-ups?
Having chronic pain and flare-ups all by yourself. No one else is there with you. Friends get fed up with helping you all the time. You don't dare talk about it because no one wants to be around so much negative.
Hurting by your self is the worst.
It really is. I want, in my later life, to become a counsellor for the sick and the dying, because the one thing I didn't have when I was really bad, and other people I've known who were dying didn't have, is someone to say, 'this is really, really ****, and I'm really scared and sad and angry' to. People are so scared that you're losing hope that the minute you start talking about your pain or how much you've lost or the things you wish you could do they try to jolly you out of it, and try to distract you.
I found that the only way I could cope, long-term, with everything that I'd lost both in the past and the future, was to face it headon. To sit with the knowledge of what was gone, what would never be, and accept it. To not spend my days being groundlessly positive about 'getting better tomorrow' but about doing what I could today. I had to say to myself that I have this thing, and I'll probably have it for the rest of my life, and I probably won't get to do a bunch of things I really wanted to. I'm probably going to need care for the rest of my life, and will always need to rely on others, and not be self-sufficient (which I hate).
And then I had to look at what I have left and make the best life I can out of it. It's not what I dreamed of, but whose life really is? And I hope that there'll be some kind of cure before I die and I can have a few years of doing all the things I wanted to, but if not, at least I'll have lived and not spent my life waiting to get better.
Sorry, rant rant rant. I made a whole website about it 7 years ago, but it's a little emo and angsty ;-)