I was a pretty ‘normal’ child with regards to health. I was pretty healthy but got the odd cold or sickness bug. The only weird thing was that I could eat something sweet like chocolate cake or ice cream and be sick right after, then fine after that.
Around my 18th birthday I got a chest infection. It lasted about a week but it cleared up. I was having a really hard time at sixth form with what we thought was depression (although something wasn’t quite right mentally. I think a lot of it was the start of my M.E) I ended up dropping out of school in February. I spent a lot of time sleeping for hours now I had free days and also a lot of time watching TV shows and YouTube in bed.
After the summer I went back to redo my last year in sixth form. For the first few weeks it was amazing. I’ve always loved learning and I made lots of new friends. I started a lunchtime cheerleading club for the lower years. We even went on a geography trip to the seaside and I auditioned for the school play ‘The Sound Of Music’ and played the part of a nun.
I think it was about the week of the show in about October or November when we realised something was wrong. I’d been coming straight home from school and sleeping for a few weeks. We all just thought the change in my activities of going back to school was wearing me out, but soon we realised it was far more than that.
At first we thought it was glandular fever so we went to have blood tests (always a trail because I have tricky veins.) But all the bloods came back clear so it couldn’t be that. I was taking days off school because of my fatigue. I even remember going to cheerleading and not being able to understand why I couldn’t do things I should be finding easy. So we went to see the GP. My GP was on leave so we saw another one at my surgery who said “all teenagers are tired, you’re probably just lazy.” When my normal GP was back he told us it could well be CFS/ME and referred me to a specialist who told me the scariest thing of all “there is no cure!”
I got sicker and sicker so my mum found a private doctor in Bristol which is about an hour away from me, I think I should have listened when he told me to leave school again but I was determined to get my A-levels. I spent the rest of that school year coming into school late and going home in each of my frees. I was lucky to have a mum who didn’t work and a house a few minutes drive from school. I would often come home after 2 lessons sleep in my school uniform and go back to school in my crumpled shirt for my last lesson. I would photocopy my friends work from lessons and have even called asleep in school a few times.
Study leave for my exams came and by this point I couldn’t read more than a few sentences. My mum would read my study notes out and record then onto my phone. My brother did many of the same subjects and he helped me out too. But I would always be revising with sunglasses and earplugs. I did ok in my exams especially considering how unwell I was. I’m sure I’m the only one who brought a pillow into the exam room.
Since then (about 3 years) I am a little better than I was then but I attribute that to resting more. I still get some horrible symptoms, that I could never lost completely. As you can probably tell I can read a little better, still not a book but social media and things. My symptoms include: fatigue, headaches, stomach and bowel problems, muscle pain, muscle weakness, sensitivity too light, sound, foods and intolerance of alcohol to name just a few.
I have an electric wheelchair which makes my life easier. I help at the local primary school on Friday morning which i really enjoy. I hope in the future I can become a primary school teacher.
My life certainly has added challenges compared to a ‘healthy’ person but I try and take each day as it comes and education people that ME/CFS is #notjustfatigue