The ups and downs of a chronic illness

I have been ill for two and a half years now. Not that long, in chronic illness terms. There are people who have been battling for decades. But long enough that I probably should have learnt by now that this illness fluctuates. There are times when I feel relatively normal and start thinking that maybe this is it – maybe I am actually recovering. And every time, without fail, I get overexcited. I start pushing myself more, being more active, forget about pacing and try to wring out every last bit of this extra energy while it lasts. Unfortunately, though, it never lasts. I’m not recovered, my body still reacts badly to this increase in activity and inevitably I crash again. Maybe it’s a migraine that lasts for days or weeks. Maybe it’s being slammed with fatigue which makes it hard to think straight or do much of anything beyond showering and eating. But it always comes eventually. And each time it does, I struggle to accept that I will once again recover, at least to a decent baseline. My body feels like it’s dying (ok, slight exaggeration but it’s not far off), my brain feels full of cotton wool, my head wants to explode. But, as the saying goes,

This too shall pass

At least it always has before. So I increase my meditation, try to stop the rising panic that it won’t pass – that this illness is progressing and my current state is my ‘new normal’.

I went on holiday earlier this month and holidays always lead to me over exerting myself. The change in location, the distractions, the desperate desire to be ‘normal’ again always result in less rest, ignoring my usual pacing, not listening to my body and just making the most of time with family and friends.

Enjoying time in the sea

We had a wonderful time, with a few fatigue blips, and I arrived home still feeling able to do much more, so I did. I threw myself back into work, into socialising and ignored the slowly developing signs that actually my body was crying out to stop, to rest. So I got hit by the mother of all migraines with a side of fatigue and brain fog and now I am cursing myself for once again, not learning.

Spending most of the bank holiday in bed

Hopefully this latest crash won’t last long and I can find my way back to a decent baseline and attempt to actually learn, finally, that I can’t let myself do every single thing I want to when I’m feeling good – I need to remember I’m not the same person I was two and a half years ago and to accept my current limitations. Maybe next time…

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