“I Don’t Care, I Love It”

Skinny jeans, windows down, loud trashy pop music that feels like summer, four friends heading to the beach. I live for moments like this, moments where I just feel human again.

An hour later…

Arcades, the chip shop we used to sit in when we had no classes in sixth form and fancied an outing; fish and chips on the beach, leaving Winston the wheelchair in the car because I’m a stubborn idiot and I don’t want to be “that person” again, laughter, no worries, sun. Correction – I like for moments like this. This is closer to who I was. It reminds me of sixth form and study leave where we spent our days doing anything but revising for our A levels. I have been pushed along this sea front and around these arcades in Winston so many times, with so many different friends and sometimes even my family (who introduced me to the idea of coming here). This is the town my mum grew up in, it is a place where I’ve laughed on the pier in the rain and been driven to with an IV pump when I was let out of hospital for the afternoon and eaten ice creams while watching the sea roll in. It is a place where nothing matters, so far from home and so far from reality.

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There were knitted things covering the railings all the way along the pier and I couldn’t help but take a picture. Yes these are boring beach pictures, but I was able to take them, because I was there doing a normal human thing, and that fact is so awesome that these images just had to be shared (also because today was awesome).

I feel dizzy and I can’t keep my eyes open and I can hardly breathe but I will not use Winston and I no longer care and I. Am just. Me.

“I don’t care, I love it” – Icona Pop (feat. Charlie XCX), I Love It (this song was played extremely loudly in the car on the way to the beach and could not be more suitable for the way I felt).

I wrote everything up to this point while I was at the beach. Last night sixth form friend asked us all what we were doing today (the group of us that are going to Norfolk), and we managed to half plan an outing to a place sixth form friend and I used to go. Different friends, newer car, worse music, but the same awesomeness as before. I tried to back out of it a lot, because I knew there would be walking and I didn’t want to annoy my body, and I was so embarrassed about the idea of Winston, especially as recent events have fuelled my I want to act like a healthy person until the last possible second before I have to admit that I’m not mentality.

My friends were awesome about this. I’ve known sixth form friend’s girlfriend (who I feel needs a better name than that) for about a week, and we both feel as though we have been friends for so much longer (she’s already sat in A&E and watched me get incredibly sick). The guy I used to have a crush on repeated his last year of sixth form due to health issues (I discovered today that he’s been fairly recently diagnosed with chronic fatigue syndrome, and that we are therefore kind of kindred spirits a little because hey both our bodies are idiots and yay I will not be alone in my occasional inability to human when we go to Norfolk next week) and hasn’t spoken to me since I left, because most people haven’t. I wasn’t expecting them to tolerate it or to want to deal with the health as well as sixth form friend has…

They showed me what an idiot I was.

The guy I used to have a crush on joked and said he would pull me around on a skateboard, there was a lot of joking and banter and he made me feel ok about the whole Winston thing – in fact, he was the one who said I should use Winston and that walking wouldn’t be an issue that way. Sixth form friend’s girlfriend was horrified at the idea that people would be weirded out by my health or be scared to have me around (like most of my family and my ex-“friends”) She told me she could never do that to anyone, but especially not someone so awesome (she is mistaken, I am not awesome). Basically they all really calmed me down about it and said they weren’t going to judge and I had no need to be embarrassed. They said they would be there always and that… That made me feel all the feels. Beyond that, it restored my faith in humanity quite a lot. So this morning Winston was packed into the car too… And they went to get him out of the boot when we got to the seaside, but I was all what will really happen if I just stand around a little bit and walk a tiny way? Can you already guess how stupid that was?

At first, it was fine. Ish… Within about five minutes of simply standing and slowly strolling around an arcade, I was exhausted. I was dizzy. I was a little out of breath. But… I was happy. I was standing on my own two legs and I didn’t want to let that go. I walked along the seafront to the fish and chip shop. We had to sit down for a very long time after that, but everyone was cool about it, and eventually my body was sufficiently chill enough to let us walk back to the pier. The group was mainly split in half, with the two healthy love birds walking ahead, and the remaining two of us (aka the third and fourth wheel) trundling along behind at a slower pace, chatting away about anything and everything. I got an ice cream on the pier, the boys got some beer; we walked back and sat on the beach for ages, again paired off into our own conversations. I said I missed sailing, forgetting that the guy I used to have a crush on also used to sail. This lead to a long and heavenly conversation full of nautical jargon and general sailing awesomeness, and the suggestion that at some point we need to sail together.

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The beach

We went back into the arcade, and I could barely keep my eyes open and could only stay upright if I was walking. Attempts to stand still were ridiculous. My friends aren’t stupid. Sixth form friend remained oblivious, but the other two looked at me slumped in a chair and were all,

“Are you slightly dying? You look like you’re slightly dying? Let’s go and get the wheelchair.” A sensible suggestion. I must look almost as awful as I feel. But no, I’d rather fall down right now. I am enjoying pretending to be normal far too much. I am, for the moment, one of you. I thought, because hey, stubbornness.

Eventually I genuinely didn’t know how I was going to be able to stand or walk for any longer. I felt awful. The guy I used to have a crush on noticed this and we went and sat on the beach together and just chatted some more. I found an empty crab shell which the biologist in me loved. I took a couple of photos for this blog post. I lay back in the pebbles, gave in to my body, and lost the ability to function. The lovebirds joined us a while later and we played a game trying to hit stones off of the wooden divider thing (we think it’s called a groin but that made us laugh a lot). I didn’t even have the strength left to throw. I didn’t know how I was going to move. Sleep was dragging and dragging at my eyelids and I was trying to resist. It didn’t work.

Somehow I got back to the car, my steps slow and clumsy like I was drunk. I was completely exhausted, I had no idea how I was moving or how I was heaving such heavy air into my lungs, I just knew I couldn’t stop. I accidentally slept most of the way home. I can’t really walk right now. Physically I am completely and utterly exhausted. Just from an hour or two of mostly walking between chairs at different arcade machines. But I did it. This should be a reminder of my incapabilities, but it isn’t. It is a triumph in the face of my crappy health and I needed it to know that it will not rule over me. I needed to feel like I still had the helm of this ship, even though it is grounded and sinking.

If you’d have told me this time last year that I would be in this situation now (generally speaking… Or even a few months ago with regard to the flat situation)… I… I… (cannot compute)… Last time I was on that beach with friends, I was unwell and my health looked rubbish and I had a tendency to become suddenly unconscious and seriously ill A LOT and be rushed to hospital with blue lights, and things looked bleak… But I wasn’t prepared for the year I just had, I wasn’t prepared to end up here. Oh well. It is what it is. It has made me incredibly, incredibly grateful for days like today. In fact, it is the reason that days like today take my breath away.

I got home to two reminders of my defectiveness – a letter to go to see a maxillo-facial consultant about the general anaesthetic I’ve been waiting to hear about for a while (after a horrible infection of my wisdom tooth led to me becoming very seriously ill just before Christmas, remember that? Well, even if you don’t have a clue as to what went on then, my jaw needs sorting)… And an email from the London consultant who finally decided to try stuff, saying that he is “very concerned” about… Me. More on this last point later; I’m currently searching the internet for some random human beings to share a flat with, and hoping that none of them turn out to be mass murderers or anything.

No way but through.

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