hello!! i’ve decided to make this blog to spread awareness about me/cfs, which stands for myalgic encephalomyelitis / chronic fatigue syndrome, although many people are calling for a change to the second part of the name because it is so misleading about what the condition actually is.
i have had me/cfs since i was 15 after catching the flu right in the middle of burnout, and became completely bedbound at 16. i am 18 now, still bedbound, and need a peg-j (long-term surgical feeding tube) and full time care because my condition (and co-morbid conditions such as gastroparesis) makes me unable to eat enough or take care of myself. i have been ‘very severe’ for over two years now, although some time periods have definitely been worse than others.
i feel there is so little general awareness about this illness, and the people who have heard of it completely misinterpret what it is, thinking it means we are “just tired,” which could not be more wrong. i cannot speak, i cannot read books, i cannot even lie in certain positions in my bed. even typing out this post is exhausting me.
but despite this demon of a disease i am very set on remaining positive ‼️
i’m here to share my own experiences and answer any questions you might have - don’t worry about sensitivity, if you’re curious, just ask! there should be an ask box on my profile :)
i’m unsure how frequently i will post as my energy levels are unpredictable, but i’m very determined to help others learn about what me/cfs is and how to spot the signs, and also to make it clear how real and serious it can be.
if you know me irl and recognise me from this no you don’t 🙏