Sometimes, looking at things from a sideways angle is helpful...

Sunday, 22 September 2013

A day in the life of a disabled student

Obviously not any disabled student, just this one. Nonetheless, I think for people without disabilities, or with different forms of disability might find this interesting.

I wake up. My day is determined by where I'm at on the pain scale. Generally, this ranges from a 9 (I wake up screaming) to a 5 (I wake up with enough pain not to be able to function academically or seriously, but little enough that at least I can communicate casually with relative ease). This pain level determines the speed at which I roll over and take my medication - if I'm in a lot of pain that's going to take a lot longer. Once I've taken them, I start to feel better. One of them works quite quickly which is good, and for which I'm eternally thankful, although I keep having to change them, currently for reasons outside my control, so we'll see how long that lasts. The problem is, I now need to eat, so hopefully my carer arrives soon. As long as they're not late, I eat before I get the chance to throw my medication up.

However, where possible, before eating I shower, generally as soon as they arrive. Showering is exhausting but necessary nonetheless. One of my medications, no idea which one, make me sweat excessively, and when you live in bed, often showering and brushing your teeth is a taste of humanity, so I try to do it as often as possible. It's hard to feel human when the divide between your pyjamas and your day clothes is basically non-existent, because anything that's not soft and loose drives your pain up the scale by a point or two. Showering daily is something that I really appreciate the facility to do, but which I'm also beginning to realise might be more effort than I'm well enough to manage. Look at that statement for a second, especially if you don't have a condition that saps your energy. I'm not well enough to shower daily. Think about how that feels.

Let's go into that shower a bit more, shall we, for the days I decide I am able to have one. It entails being undressed by a carer, who I've potentially only met once before (though that's rarely the case), and having them help wash me. Not my entire naked body, I do my genitals, at least, myself, but they see me naked, and have to help me wash, then dry myself when I emerge freezing cold because the amount of physical exertion makes my body cold no matter how hot I heat the bathroom and shaking from dysphoria and the brink of a panic attack because I can't deal with not having completed my medical transition and being seen naked anyway. It's still worth it because when I'm clean for a few moments I feel human. I feel like I look like a well person, for a moment.

Not for long. At the moment I tend to have to return to bed to eat breakfast. And "eat" is a vague word, the shower saps my energy so often I end up sleeping before I can eat, which results in me throwing up my morning medication, which means that it doesn't work nearly so well that day. I have coffee or tea, depending on whether I need to be functional, and a bowl of porridge. Something solid to start the day, I tell myself.

If I'm well enough not to have to return to bed, then I might have breakfast outside. I love the smell of autumn but the doors in my (adapted) flat are so heavy opening them is a challenge - in my manual wheelchair it's a battle of physical strength, in the borrowed electric it's more of a battle of timing, so it's nice to have them opened for me. Outside, I gaze into the woods, and enjoy a hot drink and some calmness after the shower. Whether that'll change when there are likely to be crowds of students wandering around outside, I don't know.

I certainly go back to bed after that. I lie in bed and worry about how I'll get through the day, the week, the year, mostly, the final year of a degree I poured my heart and soul into, before I got sick. I might even try to study a bit, while I talk a carer through making lunch. Sometimes I want them to talk back, sometimes they're the only bit of conversation I'll get that day. Other times I want to study, or to sleep, or I'm just too exhausted to manage conversation. I get to the point where I'm too ill to speak, where if a fire started in my block, I'd be stuck in bed, with a non-responsive body.

Everything feels so much, on an average day I have two functional hours where I can concentrate on work, where I can study, do political work, SU work, organise myself, and organise other people, make sure I'm on top of the rotas, payroll, employing four people is a huge amount of work, but not having care would  kill me, so... well, you toss that coin. I feel like I spend about half my functional time in a day organising being disabled, and have about half of it for everything else.

I can do stuff outside that functional time, but it doesn't end as well, it's harder work, less effective, burns energy I can't afford to burn, drives me rapidly into a state where I'm too exhausted to eat or drink or take my meds, which becomes a dangerous vicious cycle, so I have to be careful not to overwork, but I also have to work enough to do well enough in my degree. That's aside from my other commitments; I have three roles that I need to fulfill to some extent, and I have my own needs, my friendships, my mental health (which demands regular social interaction to keep me ticking over). Thankfully at the moment my friends are willing to come and visit me to spend time with me. I can't help but think that willingness will run out.

When I'm hungry, and on an okay day, I'll have lunch. This is left by the morning carer. Either ready to eat immediately or just in need of a quick microwave. I don't trust myself with cooking beyond that any more, it's too easy to spill things on my lap in a wheelchair, and nor do I have the energy to cook beyond that. If the day isn't so good it becomes scary - because I might get locked out because of heavy doors and delayed assisted opening, because I might not be able to transfer back into my wheelchair to get into the kitchen to have lunch. I also try to go to the toilet a few times a day, which is also scary for similar reasons and difficult, and often requires a rest afterwards if I want to preserve energy. I also have medication to take so I have to hope my morning carer has left me with water, or I probably have to go and get that as well. Given that information, you can probably see why going out is hard work, and the idea of lectures is hard work.

Two evenings a week I have a meeting. One evening a week I have a guaranteed friend over for dinner. Other evenings are a bit more open, which sadly doesn't mean having more energy with which to work. My carer helps me change and makes me dinner. If I want to go out for the night, I do so in clothes I can then sleep in. Otherwise I'm unable to sleep. Given that I can only really sleep in jogging bottoms, that's what I have to go out in, if I'm going out after my carer's been and gone. No more dressing up for nights out, that's for sure. Or rather, if I want to do that I have to find a way of convincing someone to come home with me afterwards and undress me. And that's not a particularly good way of picking someone up in a club. However, given how desexualised visibly disabled people are anyway, it probably wouldn't make much difference how good I was at flirting, given the wheelchair attached to me!

Anyway, I'm in bed by 10pm most nights, probably curled up on my laptop or doing some more studying. If I do it in little bits it feels more manageable.

This doesn't sound too bad right? Sore and tired all the time, but still doing things? You could manage it for a day, maybe even a week? How about a month, a year.

A future of lying in bed most of the time, because even sitting up takes energy, a future of being near-unemployable because you simply can't do the hours that a job takes, a future of losing friends because you can't put the energy into the friendship that it requires, a future of brainfog and exhaustion and agony, and wishing it could be different. Wishing you could have a body that works.

That's the thing. This isn't just a day in my life, this is  my life. It isn't just the day to day pattern of pain and exhaustion, but also the crushing depression that comes with looking at this, and looking back at myself, and realising who I used to have the potential to be

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