Now you have been diagnosed with ME, what now? Part Two

Part Two of the Swiss-Army-knife that you will need to survive in the wilderness that is M.E

3: Poetry in Motion

Yes, you and your bowels are about to become intimately acquainted. The casual relationship you may have had with your excretory system as a ‘wellsie’ is a thing of the past: you will become savvy with Psillium, engaged with enemas and sanguine with straining. Yes, in the distant past the quality of a day depended on the weather, your love life and chocolate, now it depends on only one thing: have you had a motion??? If the answer is ‘NO’ then it is as if your whole being is plunged into never-ending Winter. NOTHING else occupies me more than this, and I can’t believe I ever took such a complex process for granted. Those of us with constant pain in the lower back/pudendal area are particuarly obsessed.

‘Down-there’ pain+ pain/depression meds+inactivity +loo seat = Shakesperian levels of suffering and needing painkillers and hot water bottle even to attempt it. With trial and error you will find your own ‘regime’ and you will neglect it at your peril.

4) Big Ears
You are going to need big ears to contain all the crap advice that people are going to tell you: from Doctors and Specialists, to people you hardly know, everyone has an opinion on your health…and however poorly thought out or reasoned, they will feel obliged to share it with you. It’s as if you have become famous, everyone feels they know you- they don’t!

5) Alternatives
I can’t sugar coat this- it is not what you want, and BTW is not what I want either, but you are going to need alternatives to the things that made you happy before you were struck by the M word. I can’t tell you what these are, or when you will find them,…. I am not an all-seeing eye- but, whether it is sex, working, or eating what you want, if you used to do it without thinking, the chances are that a) you either have to stop doing it at all, or b) you have to make radical adaptions in order to do some of what you did previously.
You WILL find these alternatives and you will craft a life that is your life- you are a Hero remember and an ‘ME Hero’ has super-powers beyond Marvel.

N.B 6) You are going to forget my case how to count properly :whistle:


Well said. I always feel especially happy when an acquaintance decides to give me 'advice'. A colleague brought me in an article from one of those gossip magazine that cost 50p and have sensational headlines. It was about someone with ME who was bedridden and had started a fundraising campaign. She then pointed out that 'everyone I know with ME is bedridden'! As though the article was proof.

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