I May Be in Remission, but I Still Carry the Burden of Fatigue

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

I am in remission, in essence. But that doesn’t mean I’m healthy. It means 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 diarrhea.

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 alone 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 and 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 just 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.

But the gym’s got a new class schedule launching this week. So perhaps I’ll review it, perhaps the stars will align and I’ll put a yoga class in my phone calendar and hope for the best. Maybe, now that it’s winter in my hemisphere, I’ll bust out the crockpot and make something rich and comforting and able to be frozen in large batches. I might allow myself to take a sick day instead of percolate in the petri dish that is office life. I could start saying no to invitations – or reconfigure them to be on my body’s terms.

I could do these things. I may yet do these things. I know the options are there. The next step? To keep that list of maybes running through my head, so that when I see an opening in my day, a window of opportunity where I can think about me and more importantly act on it – I can start those processes of rebuilding. And even if it’s just a few hours of unexpected whizz-bang energy, those might mean a new series of asanas I can keep tucked away, or a freezer full of stew. And that, Future Self, is something that will lessen your burden.

This post originally appeared on Briar’s blog.

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