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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
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.
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.
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.
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?
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?
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.
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
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-…
omf.ngo/donate-to-the-…
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