Living with chronic fatigue syndrome: 'I used to climb mountains, now I need a stair lift' 🔴 Lizzy Horn was enjoying being a teenager until she was struck down with an illness she has never recovered from
Lizzy Horn has been living with the debilitating symptoms of Chronic Fatigue Syndrome for half of her life I was a healthy 14-year-old in Bristol, having just been to my first gig with friends, exploring my independence and new found freedoms. I’d go hiking all day, with large rucksacks full of camping gear, soaking up the outdoors.
And then after a month I gradually improved a little. I got downstairs. I went back to school for a few hours a week. But the exhaustion and a whole host of different symptoms followed me. I would put my clothes on ready for school, walk downstairs, and be so completely exhausted that I’d be on the floor in tears because I desperately wanted to attend, but felt so incredibly unwell. I’d fall asleep in offices or classrooms.The more I pushed myself to do, the sicker I got, until after six months of increasing, I went downhill, having to miss more days again, until I couldn’t do anything at all.
That was 14 years ago. Now I’m 28 and mostly housebound or bedridden. Myself and my family have spent all these years navigating medical systems and trying to find out what was happening to my body, and what we could do about it. I have had some great help from the NHS staff over the years, but very little of it was ME related. It’s been so difficult to get support or treatment for ME, as there simply isn’t any treatment, aside from pacing. We truly do need more biomedical research funding.
I’ve been admitted to hospital with horrendous pains and symptoms that test results haven’t had answers for. I’ve also been diagnosed with postural tachycardia syndrome and Ehlers-Danlos syndromes. Having ME complicates the treatment for all of that, and because there are no treatments, and no cure, I am left to manage my ME.
Action for ME has helped me with part funded physio and counselling, to help me learn how to position myself in bed properly to reduce my pain a little, advice on support cushions, how to reduce declines in health, and how to pace. They’ve also helped with talking to someone who understands the losses, and life changes that happen due to ME which is useful. it is difficult watching your peers build a life, date, have a family, a job, a home, all while you are too unwell to build your own life.
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