Just because you have objective truths fuelling your fatigue doesn’t make it any easier to accept.

I am in remission, in essence. But that doesn’t mean that I’m healthy. It means that my CRP levels are acceptable. My ferritin isn’t too bad. I don’t have urgency that inhibits my movements day-to-day. I go to the bathroom more than average but that’s partly because I have less intestine than average.  Four or five trips a day is fine for me. There’s no blood, no mucous, infrequent cramps, relatively infrequent full-blown diarrhoea.

But my bones ache. Arthritis can be a secondary symptom of IBD, or it can develop as a result of the medications. It’s hard to tell whether non-intestinal pain is related to Crohn’s, meds, or something else making the most of my weakened immune system.

I get through the working week. The stress, the extra hours, the fear that I’m not doing things properly. I work full-time, so things must be all right.

But I pray for seats on the train because I feel like I might pass out if I stand in the packed carriage for too long. I spend too much money on food, for all meals, because I rarely have the energy to cook dinner, let along make sure there’s enough for lunch the next day. And if I do have the energy for cooking, I still hesitate, because I might not have the energy to clean up after. And is a cooked meal worth it if the after effect is insects that your flat seems predisposed to hosting because the dishes and components were left out after the fact?

I feel exhausted at work, and tasks take longer than they should because I can’t concentrate properly. I drink coffee that half helps, half hinders. I live in a constant state of anxiety that I can’t do things properly, that pouring all my energy into work leaves so little to draw upon in my own time.

I say yes to things I believe in and then don’t do enough for them. Helping with the Crohn’s & Colitis Support Group for Auckland, because I need to give back and make sure that people know what help is there for them. I feel a responsibility to make the most of the fact that I come from a place of medical privilege, if that makes sense, in that I have a deeper understanding of the science and the systems and of what you’re allowed to ask for an say no to than some. I feel the need to help people advocate for themselves. Because it’s so hard.

I touch my hair and wonder how long since I washed it, feel revulsion at whether I’ve managed to have a shower in the last 48 hours. If I don’t do it as soon as I get home, it’s all too often too hard to get up and do it.

I feel guilty when I cough, sneeze, wheeze at work. I come down with things worse than anyone and it lingers… and the dry air and the great numbers of people mean I’ve become an incubator for every cold or malady that comes by. Corporate life and chronic illness are not great bedfellows.

I joined a gym and haven’t gone in several weeks. When I get home from work, I don’t have the wherewithal to go out again. I lie down. I try to make sure I’ve preemptively gotten my things together for the next day, so I can sleep in as late as possible. That’s one thing I do have down to an art – the quick turnaround morning. Get up. Get dressed. Go to bathroom. Leave. But if I haven’t prepped gym gear the night before, the chances of getting my act together are slim to none.

And lo, here’s the fatigue in action: I wrote this on Friday morning and then went to rest, and haven’t had the wherewithal to get back to it to now. And now I don’t know how to finish it. So here it is, as it is. I’m very tired.

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Basically, I deal in words.

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