Founder of Health Rising and Phoenix Rising
Good overview of some of the unusual limitations that ME/CFS often imposes. How many diseases can just cut you off at the knees so thoroughly with regard to functioning?
My story is very similar to yours. I was the all-rounder, got very good grades, was captain of the sports team, represented the school as Deputy head girl, got lead roles in the school plays, and was popular with both my peers and my teachers. I was 21 when I became ill and I choose to see myself as lucky that M.E. hit me when it did; after school and university but before I'd started full time work, bought a house or had children.
To miss out on 'the best years of your life' is soul destroying. Many, if not most, young people with M.E. are missing out on an education. I on the other hand have the qualifications but they are redundant, useless and likely to never be of use. I feel like my life never got going. The wind was taken out of my sails within a few weeks of graduating from university.
I had no idea that life could be like this. As you grow up you don't dream about a life like this. You dream about travel and university and earning your own money, living in your own home, meeting the perfect partner, starting a family... Very few, if anyone, is prepared for a life like this. A life so at odds with the norm. It is scary. Disney did not prepare us for this!
My friends are starting to get engaged and talk about marriage and starting a family. When we discuss our days, mine is worlds apart from theirs. The token response is that I'm still so young and have plenty of time to build a life like that for myself, that I don't know what the future holds... I won't lie, it gets on my nerves now.