Thursday, 11 July 2013

30 Day Chronic Illness Challenge: Day 12

Day 12: Briefly explain to a healthy person what it is like to live with this illness.

This was again a surprisingly difficult question to answer. Outside of family and close friends, I don't tend to explain very much to healthy people. That's not because I expect adverse reactions, but just because I'm far more comfortable explaining myself to other people afflicted with ill health because the oddities aren't quite so strange to them.


If you’re a fantasy literature fan like myself, you’ll no doubt have come across the concept of wizardy folk who can make people “feel” pain by some sort of nefarious means.

It’s like being followed around by one of these dastardly characters, who’s invisible and bearing a grudge.

In more mundane terms there are well over sixty different individual symptoms which are recognised to be a part of FM or to frequently exist in co-morbidity. My main issues are the very typical deep seated aches and pains with accompanying stiffness and loss of dexterity, unreasonable fatigue and exhaustion, bowel problems, sensory overload (particularly sound), cognitive dysfunction (“fibro fog”, impaired memory and concentration and inexplicable blank moments), pronounced dysmenorrhoea, difficulty regulating my temperature and phases of severe allodynia, both static and dynamic.    

Oh, and if you have ambitions in the Game of Thrones I suggest not being a Stark. Inevitable though “winter is coming” might be, it’s damned unwelcome for FM patients.

Interstitial Cystitis

You’re not attached to unbroken nights of sleep and non-hyperactive bladder function are you? Good, because in terms of IC the logic of those two normalities does not compute.

Before being placed on medication which has thankfully calmed things down a good deal, I hadn’t had an unbroken night in nearly six months. I was up four or five times a night every night.  

Although it’s not entirely accurate the best way I can think of to describe it (at least for me, although I’m  not a yardstick as mine isn’t severe) is to think of having constant symptoms of a low-grade water infection, accompanied by the existence of a tiny little person with a hammer who has decided your kidneys make handy anvil substitutes.

As a result I have to be careful what I eat and drink and the goal is to limit exacerbation and irritation as much as possible. For me this means eliminating anything citrus – I cannot put into words how much I miss fresh orange juice in the current glorious weather – alcohol, carbonated drinks, cranberries and any derivatives and limiting caffeine intake to a minimum.  There are plenty more, and the aim is to eliminate acidic substances from the diet to sooth the constant irritation.

In closing, I’ll offer this take on autoimmune disease because if nothing else it made me chuckle:
(I am far too easily amused. Image courtesy of

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