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Thread by @Annakwood: "Today is the 10th anniversary of the day that I became housebound with severe . To mark the occasion here’s a thread: 10 years ago I came […]" #ME #mecfs #MillionsMissing #MyalgicE

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Today is the 10th anniversary of the day that I became housebound with severe #ME. To mark the occasion here’s a thread:

10 years ago I came home from work unbelievably overwhelmingly exhausted. #mecfs #MillionsMissing #MyalgicE #meawarenesshour
2/ I thought 2 weeks off would fix it. It didn’t. After 6 weeks I was desperate to go back to work.
I held a fellowship in bio-nano-technology at a Scottish University. I tried a phased return starting with 1 hour per day. Twice. Each time I crashed and became more unwell.
3/ Since then I have been 95% housebound- it is rare for me to leave the house for more than 1 hour per week, and common not to leave the house at all for 3-4 weeks.
Still, I’m lucky – I’m not bed bound, like so many.
4/ It is hard to describe the overwhelming level of exhaustion in those really bad days – even I forget how bad it can be until it happens again – it’s as if the mind blocks the worst times to protect us.

One of the hardest parts of being housebound is the isolation.
5/I remember the joy of the postman knocking on the door because that was the only human interaction that I would have that week (apart from my husband).
6/ The biggest shock is the lack of medical support. There is literally nothing.

If I didn’t occasionally try to phone my GP I would have no care whatsoever. How can it be ok to be housebound for 10 years with no support?
7/ Claiming benefits was a heart wrenching experience. It took all my energy for 3 weeks to fill in the 40 page form. Focussing in detail on the most intimate details of your illness is hard especially when you are newly ill.
8/ After an assessment I scored 12 points. You need 15, so I was told I was fit for work.
6 months later I won my appeal. But the benefit scrounger rhetoric is hard to deal with, it is pervasive. How do you have a sense of self-worth in this climate when you can’t work?
9/ There have been joys as well – once I was well enough I started an online part-time MSc. The tutors and other students were fantastic.
The course felt like a life-saver, giving me something to think about other than being ill. Passing with a distinction was very special.
10/ Since then I’ve continued this work. I’ve now published 4 papers and currently work 5 hours per week.
But what we really need is more funding for research. There are tantalising pieces of work showing abnormalities
11/ in the immune system, in the energy production system, so my final plea, if you’ve got this far, is to raise money or donate to biomedical research efforts eg justgiving.com/campaigns/char…

omf.ngo/donate-to-the-…
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