"I feel like I walk a tightrope with my energy levels"
December 04, 2017
“Action for M.E.'s resources, including their guides about coping with M.E. at work, have been brilliant and really useful” says Hattie, age 27. “I have had a lot of sick days in the past year, and my M.E. means that I am not always able to work at my full capacity, feeling like I'm moving through treacle with a body that's as heavy as cement). I used Action for M.E.’s Employer’s guide to M.E. to sort out reasonable adjustments. I now work half the number of hours, and am able to take regular rest breaks, and have a more supportive chair etc. It means my sick leave has dropped from about one day a week, to hardly any sick days at all.
"I am able to work part-time, but this means I’m not able to do much around the house. Some days, my husband has to help me do everything- from washing my hair, to getting into my pyjamas. I’m really fortunate that he’s an excellent cook so he does all the work in the kitchen too.
“Pain, post-exertional malaise and brain fog are my most challenging symptoms. I am unable to do any exercise, which is particularly painful as, until I became really ill in autumn 2015, I had taken a ballet class once a week from the age of three. I am so sad that I cannot dance at the moment.
“I feel like I walk a tightrope with my energy levels, and if I do even slightly too much, I can be paying for it for days. A stressful work day can leave me confined to bed for the rest of the week, or doing slightly more cleaning than I am able means I will be unable to do anything apart from rest for days afterwards. It is so frustrating being so limited, and I feel real grief at how my world has become smaller. I used to be a really active person who did loads of stuff. It is so frustrating and sad that I am unable to do this anymore. It feels like my body is working against me.
“Brain fog is also an alarming symptom. I am a press officer, who writes for a living, so the days when I cannot think of any words, or put sentences together are problematic. It feels like I am having to pull every word from the bottom of a deep pool before I can write or say them- it takes a monumental effort. I also find myself doing really strange things- like putting my hairbrush in the dishwasher, or trying to open the door at work by entering my pin number and not the doorcode.”
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