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 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.”
“I didn’t complete my degree but received sufficient qualifications to be ordained in September 2007.”
“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 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.”
“The first big challenge was when I became wheelchair-bound 3 years ago. The next loss was when I could no longer read or watch a film.”
“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?”
ME Carers Connected can help put carers in touch with one another for mutual support and to share experiences.
What is your relationship like with your GP? Dr Shepherd will use the feedback we receive when talking with NICE and will also help answer questions on MEA Facebook this week.
Catherine Allen, 22, was initially told she was just tired like most teenagers until she was diagnosed
When you are sick with M.E. maintaining relationships can be very hard. Marion writes about the challenges we can all face.