1999 Employed full time as Civil Servant, no problems and inline for promotion. Two children in early teens, one with ADHD. Commisioned to paint picture for work. Very involved in Union activity.
February 1999, suffer from very bad illness/virus. No idea what this was but it has been suggested that it was Meningitis or Glandular Fever. Had very high temperature, unable to move, light sensitivity, totally unable to function without help. This continued for nearly 7 weeks.
Went back to work. Overhead lighting caused me bad headaches so had to wear sun shade. Poor management made me feel guilty, unworthy and useless.
After taking a career break, moving to another location so we could keep a roof over our heads without my money, and a total change of life I desperately hoped that at some point life would improve.
Took on an Art course as an entrance to Uni. Failed miserably as I couldn't keep up with the work/homework/lessons. Left, deflated, disappointed and thouroughly disliking 'me'.
Different docter suggested ME and referred me to neurologist and later some proffeser allegedly interested in ME. Both were bitterly dissapointing. Neurologist said I didnt have MS, so he couldnt help. Proffeser said I may have ME, but this was something I was born with, it was my 'drivers' and the cure was within myself.
Seriously considered suicide, but fantastic support from husband and children - at that point young adults, staid my hand.
After battle finally got a specialist to agree that I had ME and to confirm in writing that it would never get better. Great......got medically retired from work. One pressure less!
I have battled daily with this illness. I still am not sure if the diagnosis is correct as I can walk for a slow mile or more.
BUT, I can't walk my dogs. I can't clean my house. I forget what I'm doing so easily. Two burned saucepans later..... Hubby makes sure I take daily meds - have also since developed heart problem (unstable angina). Under active thyroid which is treated medication. Further thyroid crash, only just picked up by GP(saint!!!!)Ops for carpal tunnel ended up with blood clot on lung - deep joy.
Started forgetting how to write/hear/link to reality. This is noticably worse when stranger asks questions e.g.docter, DSS etc. Also forget how to talk - very scary and frustrating. I know the word I'm heading for and can find all the words around it - involantary charades!!!
However, blessed with a great husband. I have a very great sense of humour and determination that there is a silver lining to every cloud, not a cloud to every silver lining.
It feels like it is my brain that has the most problem. The aches and pains I can 'manage'. I think of myself as a battery and try very hard not to let myself 'run flat'. Sometimes this can happen very quickly. What happens one day must be paid for the next (or next few days).
A friend of my husband recommended that I try Provigil/ Modifinal.
This is rountinely prescribed on the continent for those with ME. It was originally developed for those suffering from Narcalepsy. It has been used here for same, and MS and ME.
From sleeping 18 hours a day it helps me to stay awake for much longer. Although the old brain doesn't always admit it is awake.....but I know the truth!!!!
However, there are far worse things that happen at sea, and there is always someone worse than me - so keep looking on the brightside. But I still cannot accept this illness. I will fight the b*****d illness until I die. It will not win!!!!!!
Added: 14th September 2010