M.E. changed his mum from “being called Tigger because she was always so full of life” to someone who now has to count every ounce of energy used in case it runs out and leaves her floored for days.
Holly aged 9, has written about her mum, Chantalle, and explains what life is like being the daughter of a parent with M.E.
“Without doubt my biggest regret has been that I have not been able to have my own family.”
“My husband has taken on housework, shopping, cooking and the garden so is effectively my carer.”
“There is still such a stigma attached to M.E. that I rarely talk about it even if people ask – I’m worried by their reaction.”
“My daughter is so ill she has had to disengage with her education. She has been house-bound for three years and bed-bound for the majority of this time.”
“M.E. still affects every aspect of my life. Attending school was a huge hurdle for me and one I still struggle with.”
“I’ve tried so many different methods to manage my symptoms. Medication helps to a degree alongside self-management techniques.”
“I’ve got steadily worse, less and less able to work, missing out on all social outings, not able to take holidays due mainly to lack of finances…”
“I’d like to say once I got the diagnosis, things got easier, but they didn’t. I ended up bedbound then ultimately paralysed in some of the darkest days I’ve experienced.”
“Positives are there but, in the depths of this dreadful disorder, sometimes they are very hard to see.”
“While writing this I am again thinking, “Why me?” I do not know when I am going to stop thinking about his question, maybe I never will.”
“I grieve for the old me, while managing the situation I am currently in, and looking into the future and questioning, will I ever be well enough?”
For ME Awareness, the ME Association will be featuring stories from people with M.E. every day throughout May.
Catherine Allen, 22, was initially told she was just tired like most teenagers until she was diagnosed
This year marks 10 years of M.E for me. With 6 1/2 of those being severe, I wanted to write a little something that might help others cope.