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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