ME Awareness week:
‘Staying at home’ with ME – Sarah’s story

Having had ME for 27 years I’m not expecting to get better.

Every day requires time spent lying down, experiencing pain in my muscles and joints and sensitivity to noise, smells and light.

Here’s the set up in my bedroom – books, stitching, films and body cream – my skin is sensitive and itchy.

Sometimes I can’t pull the covers on my bed up as I don’t have the energy. I have lots of covers even in summer because I’m always cold.

I no longer think much about my illness and no longer grieve what I’ve lost in terms of career. I’m sad I can’t do things though, my low energy doesn’t allow the swimming, cycling or walking I used to enjoy- I can still do some at a lower level.

I never feel I’m thinking clearly and often feel vague or unfocussed.

Being housebound isn’t a new experience for me. I’m fortunate enough to live fairly comfortably and have some outside space. I even have a summerhouse so I can lie down in a different space.

Sarah, South West Wales