R
Revision
Guest
Original poster
I'm adjusting. I don't know, that might be a lie. I don't know anymore and I'm tired of trying to be brave and smile and I haven't had time to curl up and cry like I really need to. There are tears, but they have to go away fast cause no one has this time thing anymore.
I've been diagnosed with stuff, might be diagnosed even better. I know what's wrong with me. I know it's not all my brain making me think my body is falling apart. I have a name, at least a temporary one, for what I'm going through. And it helps. But it isn't enough. I've shoved it all to the back of my mind for years. The myriad, disconnected things wrong with me have been pushed away, relegated to the land of "it just is" or "I'm overreacting" and I've just gone on with life. And torn my body to shreds in doing so.
And now I know it is real. And know I can't go through life without looking at the broken person in the mirror. The person whose shoulder subluxes and whose body aches, whose clothes are enough to rub her skin raw and who faints and has to spend the evening in bed because she can't get the room to stop spinning. The person whose hands sometimes hurt so bad that she can't type. The person who hasn't put pen to paper to draw in a month almost because repeated trauma and body stress has caused potential tendonitis in more than one joint on her dominant hand. The person who has been in the ER five times already this year. I think it's five. I lose count. The person whom everyone worries about but must go on and smile around because they have to keep it positive lest it get awkward.
Dammit, I'm still me! I'm still Revi. And yes, I need to be able to talk about this. And no, it doesn't have to be all we talk about. This name! This thing! It's here! It isn't going away and it is terrifying. I may very soon have to pick out braces and a cane. I may very soon have to even pick out a damn wheel chair. I have to plan every aspect of every day and have for years. I have to know I have the energy to make it through and not wilt halfway. I have to choose what CLOTHES I wear with exceeding care, because too long in the wrong thing causes skin to raw, or weighs too much, or presses on trigger points.
I have to ask my friends and lovedones to help, to cut my fucking food sometimes. Do you have any idea how embarrassing that is, how damn helpless I feel when I have to wear my wrist splint, how much it sucks to have to use the motorized carts at the grocery and have people stare accusingly at me like I can control this and it is all because I am lazy?! Do you know what it's like to desperately want to just be close to someone but know that tonight their touch is going to cause you agony? Do you know what it's like for the brush of the air of a fan to make your body cramp?
Some days, I'm nearly okay. It doesn't hurt so bad and I can do stuff and be productive. I've had two nearly pain free days in almost five years. Of course I've also fainted at the grocery store. Had to call a cab because I can no longer possibly get home. Had to ride a mechanized scooter at the county fair because I can no longer stand more than an hour at a time without being exhausted and sore.
So yes, I talk about it. And I do my best to sum up, to keep things light. But this is it. This is the rest of my life. And it's real. I have to get used to that.
I've been diagnosed with stuff, might be diagnosed even better. I know what's wrong with me. I know it's not all my brain making me think my body is falling apart. I have a name, at least a temporary one, for what I'm going through. And it helps. But it isn't enough. I've shoved it all to the back of my mind for years. The myriad, disconnected things wrong with me have been pushed away, relegated to the land of "it just is" or "I'm overreacting" and I've just gone on with life. And torn my body to shreds in doing so.
And now I know it is real. And know I can't go through life without looking at the broken person in the mirror. The person whose shoulder subluxes and whose body aches, whose clothes are enough to rub her skin raw and who faints and has to spend the evening in bed because she can't get the room to stop spinning. The person whose hands sometimes hurt so bad that she can't type. The person who hasn't put pen to paper to draw in a month almost because repeated trauma and body stress has caused potential tendonitis in more than one joint on her dominant hand. The person who has been in the ER five times already this year. I think it's five. I lose count. The person whom everyone worries about but must go on and smile around because they have to keep it positive lest it get awkward.
Dammit, I'm still me! I'm still Revi. And yes, I need to be able to talk about this. And no, it doesn't have to be all we talk about. This name! This thing! It's here! It isn't going away and it is terrifying. I may very soon have to pick out braces and a cane. I may very soon have to even pick out a damn wheel chair. I have to plan every aspect of every day and have for years. I have to know I have the energy to make it through and not wilt halfway. I have to choose what CLOTHES I wear with exceeding care, because too long in the wrong thing causes skin to raw, or weighs too much, or presses on trigger points.
I have to ask my friends and lovedones to help, to cut my fucking food sometimes. Do you have any idea how embarrassing that is, how damn helpless I feel when I have to wear my wrist splint, how much it sucks to have to use the motorized carts at the grocery and have people stare accusingly at me like I can control this and it is all because I am lazy?! Do you know what it's like to desperately want to just be close to someone but know that tonight their touch is going to cause you agony? Do you know what it's like for the brush of the air of a fan to make your body cramp?
Some days, I'm nearly okay. It doesn't hurt so bad and I can do stuff and be productive. I've had two nearly pain free days in almost five years. Of course I've also fainted at the grocery store. Had to call a cab because I can no longer possibly get home. Had to ride a mechanized scooter at the county fair because I can no longer stand more than an hour at a time without being exhausted and sore.
So yes, I talk about it. And I do my best to sum up, to keep things light. But this is it. This is the rest of my life. And it's real. I have to get used to that.
