The EDS Lass writes about life with EDS, articles on relevant topics including human rights, and blogs about lifestyle and her medical journey.
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One of the most signigicant life-impcting things I have found very tricky and frustrating is the difficulty in planning, with a condition which is unpredictable. At times it can feel like damned if you do (make plans), damned if you don’t (make plans); EDS-y days can mean plans are cancelled (and money lost), while not making plans feels sad or looks like disoranigsation.
I had some generalised fatigue prior to my health downfall, starting in 2016. I can see now, looking back, that I was managing some fatigue years prior. For example, when I worked full time while living in a lively household, I would frequently be asked if I wanted to join in with this or that plan, after work on a week day, or a weekend away. I wanted to, but found myself saying ‘not this time’ a fair amount of times. I can see looking back that I was fatigued, and somewhat unconsciously doing some form of pacing.
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The EDS Lass 