We'd like to share a young person's story about managing ME and their education.
Alex is 14 years old and has written this for us. We are so grateful to him for taking the time to share his story.
"When I first became poorly I would only go in for one session every other day for an hour, but this was too much for my body to handle. It left me in tears, I was exhausted and in pain. Pretty quickly this dropped to one session on a Friday, IT, which I really enjoyed. It was still exhausting but because it was once a week I could recover from my crashes, whereas every other day gave me no time to recover. I was soon in a wheelchair (which my friends loved to push!) and this helped, as it reduced my pain but did lead to negative comments from pupils that didn’t know me.
My consultant made the decision to sign me out of education in school and recommended online learning. This was really positive for me, as I no longer needed to push myself to get up, get dressed and fed before travelling to school (this was as exhausting as it was attending school), now I could get up when I wanted, eat breakfast and attend school in my pj’s if I wanted to!
I started with one lesson a day, (Monday – Thursday) and I was able to pace my new red activity, so I wasn’t booming and busting. Gradually we upped it to include homework as well as the lesson. Over the next year we increased it to 2 lessons and homework from both subjects, I swapped English for Science during the Summer term of 2020 and finally we were able to increase it this September to three lessons with homework, so I am studying English, Maths and Science which will give me the correct number of GCSE’s to move into further education in September 2022.
There have been good days and bad days, my brain fog can have an impact in my lessons and my ability to concentrate/find the right wording, but overall being able to attend school on line has meant I have been able to continue with my education but I haven’t fallen into a cycle of crashing and burning, whereas unfortunately, many other children with ME do.
Like a normal teenager there are some days when I wish I could stay in bed, but I do understand the importance of an education so I am grateful for how lucky I have been so far that my school (Wellington Academy) provide me with an online provision.
I am proud of how far I have come, I can remember the day I became poorly with ME and couldn’t get out of bed, had to bum shuffle up and down stairs, whereas now I can pace, carefully, my mobility and education."
By Alexander Cousins
Age 14