I just googled “How to be healthy with a chronic illness”

And there wasn’t an answer.

I expect that means I should try to write one myself, but I am busy trying to funnel my limited energy into something useful, in my last weeks of university and the first weeks of my production company.  Apart from that, I am exceptionally sick at the moment – my fingers each feel like they’re being pulled out of their joints, my face and neck feel swollen and watery and I can no longer bend over and get up again.  God knows what will happen when my shoelaces finally unravel.

My instinct is that when you have a chronic illness, you have to put much more cerebral energy into being (relatively) healthy than other people do.  I am not talking about curing the chronic illness or even living like you don’t have it, I mean things like “Should I eat more protein or iron?  Will sitting in a different position lessen my pain?” – things that may have worked to ease the pain or at least provide background comfort for other people.  For myself I know that tea is good for me: it can both perk me up when I’m lagging over essays, and soothe my nerves when I need a rest but have no time for afternoon naps.  It is both water and calcium, and even caffeine, which I tend to find is a potent short-term painkiller.  

As far as I can find, there seem to be two large camps for self-care for the chronically ill.  The first is dismissal: people who are always ill are always ill, right?  So why would we gear nutritional information at them?  This isn’t at all aggressive as far as I can make out, its main symptom seems to be a complete lack of discussion on the matter.  Plenty exists to tell you that if you’re depressed you need exercise and Vitamin D, because it generally accepted that good self-care can improve mental illnesses.  But physical illnesses?  Who knows?  Not the internet.

The second is blame: where information is to be found, it is always at some level victim-blamey.  As chronic illnesses typically cause massive tiredness, they can be associated with loss of strength and stamina, which in our OMGTHINANDFIT society, people cannot dissociate from laziness.  So much of the advice for chronic illness is exercise-focussed that it can sting a little to read it.  I don’t mean at all that exercise isn’t beneficial, but it is also harmful if not done extremely mindfully, and with having something like fibromyalgia, part of taking care of yourself is admitting that you won’t ever have what you previous defined as a physically active life again.  The commonly-touted advice that exercise in progressively higher doses will build up your tolerance is good advice, but only up to a certain point.  Pacing yourself and information about how to get quality sleep are missed off most resources.

Until we can have this discussion, I suppose we all need to keep at the trial and error.  I’ll put the kettle on.

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