This morning, I sat on my stairs and cried.
I’d just returned from the first hospital visit of the day. I was exhausted, in bone-crushing pain, and thought I couldn’t take another moment. The realisation I would have to climb the five flights of steps up to my front door was too much. Through sobs, I made the decision that I couldn’t fight this anymore.
After all. How can you keep fighting something, when you don’t know what it is?
And then my boyfriend came and wrapped his arms round me and reminded me that I could do it. That there were reasons to keep trying. That no-one can do it except me…and that somewhere, deep down, I still had the strength.
Even if I don’t always know where to find it.
For over 3000 days I have been looking for answers. I have been through every peak and trough that one person possibly could, and am still not in possession of the truth. I have diagnoses thrown at me then ripped away, and put on courses of medication and then told they’re dangerous. I can’t sleep, then I can’t wake up; I can’t bend, then I can’t straighten. I do everything I can to be positive, then I have all the hope drained away and the fear creeps in again. It’s like living in a spin cycle. You never, ever get to rest. Just when I think it’s slowing down…it speeds up again, tossing me around and spinning me out of control of anything in my own life.
I cannot explain how it feels to be in almost constant pain. To have every muscle, bone, tendon and ligament ache, all the time. I have dead arms and legs up to 24 hours a day. Pins and needles surge through my hands and feet. My joints creak, crack and seize. My head feels like it’s going to explode. I can’t raise my hands above my head without feeling like I’m going to collapse with exhaustion. I wake in the night and can’t roll over, can’t move my elbows, knees or hips. Most mornings at the moment, I can’t even sit up unassisted. I need help to reach my pain medication. I am locked in a prison that’s my own body, and it’s torture.
Sometimes, I want to break…just so it will be over.
I long to be carefree again. I’d give anything to be able to just run over to the shops, go out without planning for hours in advance. I want to be able to have fun. I want to have one day – just one – in a week where I am not so exhausted and scared that I sit here, alone, sobbing to myself over the pain, the loss, the exhaustion.
Most people write plans in their diary and just know, save for an emergency, that they’ll be there. I write plans in my diary and stare at them for 3 days before, panicked about being able to go, about being fit enough to get dressed. I worry about having the energy to get down the stairs, I get scared about putting on the brave face and not telling anyone how much it hurts. I am constantly consumed with guilt about letting people down, ruining people’s fun. I am a shadow of the person I once was.
Most people get fantastic opportunities and grab them with both hands. I have to think every detail through, and end up turning most of them down. I try so hard to be “normal”, but often have no strength to get through a day.
Every now and then, I’ll start to feel a little bit better. I’ll gather the energy to see friends. I’ll make the most of it. And then for 3, 4, 5 days later, I’m made to pay. I get stuck here in my shell again, unable to move, unable to break free of this horrible pressure that surrounds me. My bones seize up, my body turns to stone, I can’t lift my head from the pillow or get comfortable, no matter how hard I try. My beautiful partner bears the brunt of my frustration, listens to me cry, get angry, curse whatever it is that is stripping me of my own right to choose, where I go, when, with whom. I just want to be able to make decisions for myself again – not based on whatever this demon inside me allows.
I know everyone means well, but it’s so tiring hearing people say how well I look, when I do get out. I don’t have broken bones, or scars, so there are no clues…except maybe the bags under my eyes, or the slight slump in my posture. I don’t leave the house when I’m at my worse, and am too proud to stand in a corner crying, no matter how bad it gets. So yeah, I look OK. A lot of work goes into that. Thank you for noticing.
And I know everyone means the best when they say “get well soon”, or “hope you’re better now”. But sometimes I want to scream. I feel guilty. I feel like I should be better, that its somehow my fault I’m not. I feel that people think I’m weak, pathetic, for always being ill. For always making excuses, cancelling meetings. I don’t mean to. I want to be like everyone else. I’d do anything to be able to work full time again. To be like you.
It’s hard when people ask – “what’s wrong?”. After 9 years, I should be able to reel off the facts. But the truth is, we still don’t know. I’m having tests. I’m waiting. I wish I could tell you. I wish I could wear a badge that explains it all. But I’m not qualified to say. The Rheumatologist thinks it certain things, like Fibromyalgia or Chronic Fatigue…but I’ve heard all this before. I’ve pinned my hopes or fears on what they tell me – started off on a course of treatment, and then been told they were wrong – so many times. So…until it’s confirmed, in writing, with no ifs or maybes…it remains unknown. I can tell you what the Doctors think it might be…but it’s me who looks stupid when they change their minds. It’s frustrating – no – it’s soul destroying.
I just want answers.
So. Where are we?
Well, I guess I’m still fighting. I’m at the top of the stairs. But medically? We’re nowhere new. I have seen the Rheumatologist. I have had the blood test, the x-rays.
This morning, I had a radioactive injection into my veins – and my clawed hands scanned. I have to go back this afternoon to have a whole body scan, once this radioactive stuff has worked its way through my bones. Right now, I just want to sleep forever. I want to give up.
But I won’t. I never do. I’ll keep going. I’ll drag myself back to the hospital later. I’ll do whatever they need me to do.
One day, we may even get answers.
Til then? I guess I’ll keep waiting. And fighting. And trying not to cry anymore.
(This article was written on 19th October, 2012. It’s now 22nd, and the weekend wasn’t too bad. I needed to vent, and for now, it’s a little better. )