“But you’ve gone through so much worse. This is nothing in comparison to that, right?”
Haha. Hahaha. HahahahahahaNOPE. This thing could kill me within hours. It’s up there with the worst of the things I have and will face. It makes me feel like I’m dying because it’s kinda killing me and if I walked into a hospital right now they’d put me in the resuscitation unit and man the panic stations when they failed to get in an IV line. But I’m like this so often that you think I don’t look sick. You can’t see me right now, but you’re so used to me looking unwell that you think that’s healthy me.
Today was a day of defeat. It was a day of damage limitation and duvets and letting my dog up onto the sofa he isn’t allowed on because he wouldn’t leave my side and wanted to snuggle. It was a day of a nausea so intense I couldn’t even drink water. It was a day of a splitting headache so severe that it gave me visual disturbances and an inability to stand even the dimmest light present in a darkened room. It was a day where my heart decided that 170bpm was an appropriate rate to beat at while I was curled up half asleep, and my blood pressure was so low that I couldn’t feel a peripheral pulse. It was a day where dizziness had me disorientated and stumbling, and everything spun. And it was a day of acidosis. As if my heart being a poop wasn’t enough of a present for today. My dog knew. He just knew.
I woke up this morning, realised I was seriously unwell, injected intravenously, went to sleep, and attempted the whole process of waking up again a few hours later. I felt slightly less grim, but still knew I was seriously unwell. If I’d have called an ambulance at that stage it would have used blue lights and sirens for the heart rate alone. I was in acidosis. Almost as bad as the other day. I was experiencing symptoms that I don’t usually get until my pH is around 7.1 or below. I had been planning to properly start my uni work today and begin the mammoth task of catching up, but I couldn’t do anything at all. I thought my room was dark but there was still enough brightness in the darkness to hurt my eyes. I grabbed my quilt and my injections and medications that I need in the morning, and made my way downstairs because our living room has thicker curtains which I thought might block out more light. My dog followed. He has refused to leave my side for anything, and if I leave the room he runs after me in a sort of panic. He wakes every few minutes when he’s asleep, lifts his head to look at me, and if he can see me and I am moving or acknowledge his presence, he goes straight back to sleep. If he can’t quite see me or I’m half asleep, he gets up and puts his face right next to mine on the bed. If I still don’t do anything, he nudges me until I move or groan (or even better, tell him he’s a good boy) and then immediately curls up and goes back to sleep. We were home alone for most of the day, but I felt safe. He knows when I’m not well. He turns into my little protector.
The first thing my mum said when she came home from work to find me curled up on the sofa was “Oh *** you look rough!” At this point it hit home to me how unwell I was. My dog sat right by me, his back to me, letting me stroke him. I at last managed to drink something and ate a tiny amount of food, but my heart was RACING and although I could look at light and stuff again, my head still ached awfully.
“You aren’t really getting much work done, are you?” My mum sounded exasperated and almost irritated/disapproving. I couldn’t be dealing with that. I’ve done some work over the past couple of days, and it isn’t her job to judge me and get on my back about work any more.
“Why haven’t you got a boyfriend?” Was her next question. Because it isn’t a priority right now. Because I don’t need a boyfriend to feel like a person. Because I need to learn to like myself before I can let someone else even think about loving me. Because I can’t love and I can’t trust because of all the things that happened when I was younger. Because right now and for the last few months every spare thought has been eaten up by me trying to figure out what to do to stop myself dying?… I felt like throwing the sofa I was laid on. I felt like she thought I was doing something wrong. I felt insulted.
I slept for most of the day. I woke feeling like I needed to sleep for hours all over again. I couldn’t keep my eyes open, I couldn’t stay awake. I was freezing. I had a long hot bath (I usually shower but there was no way I could stand for so long) while my mum sat in the next room wrapping Christmas presents. We had a chat which mostly involved her asking me the age of people’s kids and us trying to work out if the present she’d bought was appropriate for each child. It was kind of nice.
“Unload the dishwasher before dad gets home.” My mum said to me on the phone. My little brother, WHO ACTUALLY LIVES IN THIS HOUSE, refused to help me. I feel like a guest here, like I don’t belong, yet it’s quite ok for me to be integrated into the family fully when some chores need to be done. I was dizzy. I didn’t care if that meant I broke a plate, I just did as I was told.
My dad got home and wasn’t happy that I had blankets on the sofa. Of course, he couldn’t say anything to me, but I heard him bitching to my mum and to make everybody’s lives easier I dragged myself upstairs, feeling as though I were in the way and like a piece of dirt all over again (I tried to help them with something and was ignored and basically told to buzz off). I realised why I’d been spending all day in my room until this point, but I don’t like being shut away.
My dog and I went back upstairs. I curled up on my bed, so tired that I couldn’t think straight. I don’t do duvet days. I rarely admit defeat. I keep going until/while I’m literally dying (Last week I sat an exam with a pH of at most 7.1, then completed and submitted my coursework and tried to go to the library before going to hospital on foot and by bus, where we discovered my pH was 6.9 and I shouldn’t really have been conscious, let alone able to stand.) I don’t like to bother people and I’m always frightened that I’m just overreacting and people will be annoyed with me for wasting their time. For me to spend a day curled up under my quilt, not even attempting uni work, with my laptop shut down and out of sight and my headphones in another room… I have to be very, very ill.
But that’s difficult for people to comprehend. There’s no blood pouring out of me. I don’t have any gaping wounds or visible deformities. People can relate to the flu or to surgery because they are likely to have experienced one or both, and they understand what surgery involves. They don’t understand things they can’t see. They don’t understand acidosis and tachycardia and migraines (I don’t count migraines among my health hiccups. I don’t get them too often, and although some last an awfully long time and all are debilitating, this one only lasted a few hours thanks to the magic of the tablet I finally managed to ingest. It’s like diabetes – it’s so normal to me I forget to label it a hiccup, yet it brings me to my knees sometimes). When I told my friend I was in acidosis again and my heart was being a poop, she responded to my message about how awful the situation was becoming with
“But you’ve gone through so much worse. This is nothing in comparison to that”
She said I’ve had surgery and surgery is MAJOR and this wasn’t surgery so it couldn’t be anywhere near as bad. It was worse. It could kill me within hours. It should. I shouldn’t be able to fix it outside of hospital but I pump myself full of IVs using unorthodox methods to do so, and drift along with a slightly low pH (around 7.25-7.3) for as many days as I can (which I shouldn’t be able to do, but my superhuman body is so used to this state that it can just about function, and doing hourly injections – not of everything I need, but of one thing that does at least something – I can hold off the fatal levels for a while instead of reaching them within hours as I should do).
She went on reassuring me, saying that if I can bring myself to go to hospital I might not be in there as long and I will be that step closer to getting better. She said that I’ll get better, and we can travel. But that’s the point.
I’m not getting better.
We don’t know how to make me better.
We don’t know how to fix the major health hiccups, how to tame the rebellious organs, how to stop new ones going wrong in unrelated ways.
That’s the point.
People don’t know how to understand that, because in their eyes hospitals fix everything.
She was amazing about my PTSD. She told me I wasn’t stupid for it or whatever anyone else had said to me about it. She said that I was still in there. She said so many amazing things, she said she’ll always be there to talk and she’ll help however she can. She understood that the PTSD isn’t me, and she told me not to call it a monster because it gives it too much power. We named it the snake, because I really hate snakes. She was so helpful about it all. She really, really understood and she made me feel like so much less of a freak about what’s going on inside my skull.
I’m at the stage where I worry about whether I can do enough to allow me to wake up alive tomorrow. I’m at the stage where I don’t know how I will get through tomorrow. I can only try.
No way but through.