EDS Awareness Month (day four) – A Day with EDS


No two days are the same, sometimes bed rest is the only option!!

When I initially fell ill, I ended up bedbound for months! This obviously impacted me greatly as I had previously been very active (a special constable for TVP) and also had a full time job as a accounts assistant. To lose my independence was a huge blow, I am still coming to terms with it all these years later.

Most days with EDS now involve ensuring my medication is up to date AND remembering to take it.

If I’m having a tough pain day, this will be either a bed rest day or a chill on the sofa, catching up on TV. If pain is manageable I have a list of jobs that need to be done, day by day for the week. This way I can mark off what I’ve done and feel a sense of achievement. I never push into pain, if I’m dizzy, struggling with pain or just run out of spoons, I stop !

For my gastro issues I now only have meal replacements for breakfast and lunch, this resting of my stomach means I can try and eat one small meal a day, hopefully without too much pain or other issues.

Having hubby as my full time carer means I’m never left alone or struggling.

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