expectations

I am having quite a hard day.

There’s not really any single thing making it hard. I woke up at a fairly normal time, spent my customary hour in the bathroom, and then had my usual post-ablutions snooze. Yes, really, the exhaustion is so real that something as simple as emptying my bowels (wow, talk about clinical vocabulary) and taking a shower takes ALL of the energy out of me!!

I got up – eventually – and took a five-minute walk across campus to print something out. Came back and ate some food. Sat down and tried to think about this lab report that’s due Thursday that I have to finish.

It’s not coming. Just as usual, the brain fog has settled itself inside my skull for another day of pure uselessness. Every thought is slow to arrive, like a delayed train. And, like a frustrated commuter, there I stand, powerless to do anything about it, except maybe write some angry Tweets to the train company and HERE is precisely where this analogy breaks down. Anyway – back to the point. The point is that my brain is straight-up not co-operating. I think, for me, the most apt way to describe it is like a TV screen filled with static, or the pause after a teacher asks you a question but before your brain scrambles to make you blurt out the answer. That brief moment of spiking anxiety, the tip-of-the-tongue feeling, the idea that the answer is so close and yet so far away at the same time – that’s how I feel today.

The physical symptoms aren’t helping, either. I’m flaring at the moment, although to what extent remains to be determined: my disease is mostly in the small bowel, and although my last colonoscopy showed disease activity in the terminal ileum and slight overspill into the colon, we aren’t sure how far up the damage stretches. I’m waiting for an abdominal MRI to be scheduled and carried out before we can decide on an action plan. This waiting is the worst. I am, effectively, in limbo: the damage needs to be documented before we can start treating it, but I’ve been in a slow downward spiral for at least a year now. In the last six months, it has started to speed up. Here I am: waging war on myself from the inside, and trying to patiently pretend that I am doing fine on the outside.

The fact that my body is doing its best to scupper my carefully-laid plans hurts. I’m the type of person who likes to plot out everything they’re going to do for the day in an organizer, and tick everything off as it’s done: otherwise, I don’t feel like I’ve done enough, and guilt creeps up on me. I want this work out of the way, I don’t want it lurking in the back of my thoughts constantly. Sure, there’s always more work to be done, but that’s further off, and I can deal with it.

The guilt that I mentioned is the hardest thing to live with. I had a realisation earlier on (in the shower, which is where most of my profound thinking is done) that I would never be so hard on someone else in my situation as I am on myself. That I have a standing extension for university work for a reason, and this is the reason. This realisation was so sudden that I actually burst into tears then and there – mildly embarrassing, but it’s not like anyone was around. But what’s different? Why can’t I cut myself some slack? I guess I’m just still, even after all this time, unable to shake the feeling that I should be keeping up with the ‘normal’ crowd. I look like them, I should be able to be like them too, right? No. And the rational part of me knows that… but the irrational part of me refuses to listen.

I can compromise, though. So, I’ll make a sandwich, have a nap, and work for a little while in a couple of hours. Maybe then I can be satisfied that I’m doing what I can.

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