Not For Long, But “I’m Taking My Time On My Ride”

People whose idea of unwell is a cold seem to underestimate my inability to human (and in fact, people who are almost as broken). I am too embarrassed to let them see it, even when it is apparent to me that I’m in trouble. You know where this is going, don’t you?
It came back again. I don’t even need to say what, do I? If you read my last post you’ll have some sort of idea. I cannot beat this. I cannot avoid it. Very soon there will be no way but through it. I should be in hospital right now. I should be in resus. I need serious help. And yet I cannot overcome my desire to cling to this freedom. I need a break. I need this break. I am so far from my family and from hospital appointments and impending surgeries and scans and telling one of my doctors about the mysterious bundle of mutant cells I have discovered that is raw and likes to bleed a lot for no reason (nothing to worry about, totally harmless I’m sure, but very annoying). I don’t want to live under the weight of all of that right now. I am free to breathe – to be with my friends and forget it all and feel like a normal 20 year old even though I will never be normal and I… Need that. I need it more than the numerous injections and tablets that keep me alive and police my body every day. For the sake of myself I need this happiness to last. I need this. I just need it. 

It won’t last. We’ve been here just over a couple of hours, and sixth form friend waked is around the centre of the caravan park on a tour. It was a couple of hundred metres but it was too far, especially when you’re on the verge of a medical emergency and your body isn’t metabolising glucose so has NO energy. I was breathing heavily and I knew what it meant. There was nothing I could do to stop it. I didn’t want to say I couldn’t walk such a teeny tiny short distance. I somehow got back to our static caravan, and then we decided to go shopping to two supermarkets for food and stuff. Before that, sixth form friend made us all walk about twenty metres to the beach (we met an adorable and very stubborn Jack Russel called Jack, who wanted to go to the beach and refused to walk in any other direction). I didn’t want to be left behind. Somehow I walked. I held myself up using the fence. Nobody had any idea how unwell I was… I was kind of weirdly really pleased with myself for successfully hiding it.

A supermarket is a bad place to notice you are no longer on the edge of an emergency. I was barely conscious. I couldn’t stand still because I knew I would fall to the ground. I cannot describe how unpleasant and unwell this situation makes a person feel. It feels like septicaemia without the raging temperature and the shaking… It’s rough. A panic should have kicked in, but it wasn’t the panic I was expecting. All I could think was we’ve not even been here two hours please no. I am such an idiot what even am I? Self, you’re an utter dick. What even is this? You knew! And then… I can fix it. Just don’t lose consciousness. Don’t throw up. Somehow walk in a straight line and for goodness sake figure out how to hold your head up. Lungs, chill. I know why you’re breathing like that but we don’t have the energy to breathe this heavily and I know it is laboured breathing but seriously you are not helping yourselves. I’ve got this.

I walked straight in when we got back. I found the drug I needed. Hardly able to focus my vision I injected it into a vein. I crashed out on the sofa. I cannot move. I can’t get up. The world is spinning and I feel sick and my head is pounding. I barely have the energy to breathe. I can’t hold my head up. They all want to walk to the beach now. My actual (and slurred) response was,

“No guys I’m dead we can’t move.” Dramatic, but I needed them to get the point, and it is very unlike me to say no because of my body so they understood that things weren’t great. They keep offering me cider and still have no idea what is going on inside of me. I want it that way. I do not want to bother them. This is such a mess.


But this is not a mess, it is the beach we are by (ok the water is freakishly brown but is there any other colour for an English sea? Except maybe in Cornwall but that isnt’t England it is HEAVEN). We are having a barbecue here tonight… If I somehow manage to human just a little bit
All I can do now is hope that what I did will be enough. It won’t fix this, it will temporarily move me a little closer to safety but not out of this disaster. My body will fight because hey it’s amazing at that, but sometime very soon I won’t be able to help it. 

This is my body. This is the one constant in my life that should be fine when everything else falls apart. The one thing I should be able to control is floundering before my eyes and there is nothing I can do to stop it. It makes me feel like such a failure. I feel so responsible and deep down I know I’m not. 

I can hardly keep my eyes open. I could not stand now if I was asked to. I could not sit up for myself. 

I will just keep trying to save myself until I can’t any more. Usually this lasts a couple of days. And I’ve no idea who to turn to after the whole “I’m listening, I just refuse to accept what you’re saying” saga. It’s really knocked my confidence and I’m hours away from Kent or London. I need to sleep because my body won’t let me do anything but, and right after that…

There is only one thing to do – live (or cal an ambulance. For those of you who know me or have read this blog and know how I feel about bothering ambulance crews, do you now appreciate how disastrous this is?). Stupidity is not the way. Time to be sensible. 

Every extra day I get outside of hospital is worth it, and I can’t even bring myself to think about hospital right now because I want to stay happy until the last possible moment.

It’s going to be ok right up until it isn’t. I’m so grateful just for this right now (where I am and who I’m with… And even my health, because this could be worse, there are people who will not see the next second, there are people in this situation in hospitals terrified. I am not in hospital. I am not terrified. I am free. I am being sensible. I have been given an opportunity to feel normal by an incredible trio of friends and I could never ever ask for a single thing more than that. Happiness seems to make everything so… Positive).

Now to go try and save my own butt.

This is why I call myself Icarus (which is what I was going to call my t-shirt company but the name is taken). Right now, Icarus is flying way too close to the sun. I should be plummeting to earth. I am. But…

“I’m falling, so I’m taking my time on my ride” – Twenty One Pilots, Ride

It hasn’t even been two weeks since last time – the grim reaper must have nothing better to do. I wish he’d give me a teeny tiny break. I know that’s so pathetic and ungrateful but I’d like a little reprieve. 

Here we go again, I guess. Too happy at recent life to melt down, to fear, to think about what I now know is inevitable. 

Tough to say. Tougher to know. Even tougher to watch, which is why I’m glad nobody else knows.

No way but through 


4 thoughts on “Not For Long, But “I’m Taking My Time On My Ride”

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