It has been night for a long time

It’s wet and cold outside and I almost feel like myself again. I woke up early, at dawn, and didn’t move. For a moment, I was too scared to move, worried that the pain would come rushing back, that I’d be pulled into or out of the rabbit hole and I wasn’t sure that I wanted it to happen. It used to be easier to let go of reality and just go wherever the headache takes me without objection. Migraine aura’s are exhausting and when the headache and nausea kicks in, it’s difficult to not want to scream. It hurts, more than anything in the world and vomiting makes the pain worse. I know from experience that pain has a kind of limit for me so far. On a scale of one to ten, when you reach ten it’s unbearable and it just can’t go any higher. There’s degrees of pain and then, suddenly, you reach that point where you realize you can’t deal with it, you can’t live with it, you can’t breathe or think or talk about it, it just hurts too much. I also know that feeling as if you can’t endure it is a decision not a fact. Either you endure it thinking that you can’t or you endure it knowing that you can or you try to kill yourself or make it stop in some way. Of all those options, aiming for the sea of calm is the most rational thing to do. Sometimes I’m brave enough to succeed and other times I panic and think over and over, I can’t do this, I can’t do this, I can’t do this, whilst I’m already doing it.

I try not to compare my life to anybody else’s. I try to focus on the positive, think about the good, do something that makes me happy at least once a day. Occassionally though, when it gets to the point where the world is inside out, upside down and spinning too fast, I wonder what it’s like to not be sick. I wonder how I would be different, if I would enjoy doing different things, if I would have different interests, if I would be happier. I don’t think being healthy makes you happy, but some days, it sure does seem to make it easier. It sometimes feels as if being sick is all there is, as if it takes over everything I do, everything I am and takes away everything I want, everything I want to do and everything I want to be. I had plans for last night, things I wanted to do, but then one of my cervical vertebrae slipped out of place, screwed up blood flow to my brain and induced one of the worst migraine headaches I have had in a long time. It didn’t care about my plans or my wants or needs or how motivated I was feeling to carry on, it knocked me over and kept me pressed down and there was nothing I could do about it. My hands are tied and whether I sink or swim is not up to me in the slightest. All I can do is try and stay calm and tread water as best I can for as long as I can and when I can’t do that anymore, to try and float along on my back and think don’t sink, don’t drown, don’t think too much.

Perdido Street Station is one of my favourite books. It’s one of the places I go in my mind when I need to escape. I love the language, the sentences it gives up, the story and the suspense, I like New Crobuzan, it’s a city that brims with life and I have the greatest empathy for Yagharek and his struggle, but mostly I love reading about Isaac and Lin, as heartbreaking as it turns out in the end. One of my favourite parts is the first few pages and then, a single paragraph near the end, “Lin had seemed disappointed and hurt, then she hugged him, happily and suddenly. Then she curled up in despair. Isaac had tasted her emissions in the air around them. He had known that she was crying herself to sleep.”

I cry more than I used to. There was a time when I would just shut down all my emotions, thinking that if I didn’t feel anything, maybe I wouldn’t feel pain either. I didn’t care about me or the world or anybody else, as long as it numbed the pain just a little bit, it was a small price to pay. I have realized since that it’s not a small price, it’s too big a price. Pain is a horrible, horrible thing, particularly when it invades your mind and steals your thoughts, your character, your personality and becomes part of who you are, but there are worse things. Getting wrapped up in it and cocooning yourself in, hoping to survive without giving any thought to the people around you and what your pain does to them, that’s worse. I don’t think I’ve ever been that self-involved, I carry too much guilt around with me about time and energy and effort I’ve taken from others without being able to give anything back. I enjoy taking care of people; knowing what it’s like to be miserable and alone, I enjoy being there for someone else when they’re in pain, miserable and alone. I guess when you’ve been there, it’s impossible to not want to help. Having helped, I also know how tiring and exhausting it can be. Taking care of someone has to be one of the hardest and most demanding endeavours in the world.

I still have remnants of the headache today, move too much and it pours back in. It’s difficult not to squirm in panicked anticipation, knowing how bad it can really get when it does return. I wish I was braver, stronger, held together by more than just blind determination to get through whatever I have to get through in whichever way I can manage it. I wish I had more dignity and control. I wish I needed less. I dislocated my ankle in my sleep and rather than wake up, just incorporated the pain into my dream. I woke up at dawn and it was murder. Took two hours to get it back in. For a while I didn’t even remember going to bed with a severe migraine. Pain and things going wrong has a way of taking over life. I try to fight it when I can, try to keep doing whatever I can do for as long as I can, but there comes a time when giving in is all that’s left. I’m better this morning and I take advantage of it, but as the pain slowly creeps back and fatigue builds, I know that better isn’t going to last very long. Soon I’ll be lying down, staring at the ceiling, wishing time away until the next little bit better arrives. I wish I had better answers, better ways of coping, but sometimes waiting seems to be all that there is.

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