- Chronic Fatigue Syndrome / M.E.
- Interviews
Amy's interview
How did all start?
Developed chronic insomnia at age 9.
Started to become ill age 12 with M.E./Chronic Fatigue Syndrome finally diagnosed age 18
Developed Fibromyalgia age 13, diagnosed age 14
Developed Hyper-mobility Syndrome age 13/14 finally diagnosed at age 16
Scoliosis found age 17
Severe and permanent cystitis age 23
Stomach Ulcer age 25
Do you already have a diagnosis? How long did it take you to get it?
See above
What has been the most useful thing for you so far?
Amitriptyline (Nerve pain and insomnia)
Cimetidine (cystitis)
Deep tissue massage (good for everything)
Electric blanket on bed (good for pain in muscles and joints)
What have been your biggest difficulties?
At first the biggest difficulties was being believed and getting a diagnosis.
M.E./C.F.S being a chronic fluctuating illness means it is impossible to plan ahead or make firm commitments to anything.
The fibromyalgia and H.M.S is so bad i can't use my hands for very much including simple things like hand writing.
How has your social and family environment reacted? Have your social or family relationships changed?
They fluctuate with the illness, during bad patches people i thought were firm friends lose interest. Making friends is never very easy as i don't see many people, and the derision you get if you say you're disabled can be very hurtful, so i don't tend to tell people.
My mother supported me brilliantly when i was a child, she was the only person who believed me and stood up for me and to be honest, if not for her, i wouldn't be here.
What things have you stopped doing?
I've been ill for so long it is hard to say as i am in my 30s now.
What do you think about the future?
I take one day at a time and try not to think about it.
So far, which years have been the best years in your life? What have you done during them?
Age 21-25 i had a period of better health which meant i was able to socialise more. I went on holidays, went out with friends, made it to a few gigs etc I was even able to go on walks.
I had a good summer in 2015 and got married.
What would you like to do if you didn’t have your condition?
I wanted to be a Volcanologist when i was at school. I didn't go to college or university so if i got better now i'd like to be an author and/or create art.
If you had to describe your life in a sentence, what would it be?
A paradox- i am exhausted all the time yet cannot sleep.
Finally, what advice would you give to a person in a similar situation?
Give yourself time to find things that work for you.
Try not to beat yourself up over things you cannot change.
Find things that make you smile and laugh.
