ME Awareness: “I have had symptoms of ME since I was a teenager – over 50 years ago,” by Ann Jones | 22 May 2020
May 22, 2020
The Lost Years by Ann Jones.
I have had symptoms of M.E. (myalgic encephalomyelitis) since I was a teenager – over 50 years now.
My diagnosis was complicated as a severely under active thyroid was diagnosed first but treatment never solved the extreme fatigue.
“I hope to see a diagnostic test within my lifetime and a sea-change in the attitude to M.E. by disbelievers.”
I am very fortunate in that I now have moderate M.E. and an understanding and supportive husband.
I struggled at school but somehow managed to qualify as a physiotherapist. Unfortunately, I have been unable to work for over 30 years.
My husband has taken on housework, shopping, cooking and the garden so is effectively my carer.
My son missed out on outings and activities when young. I wasn’t able to give either of my parents or my brother as much help as I felt I should in their later years and can’t help as I would like with my granddaughter.
All of my family has been affected by M.E. too.
I look alright, so people say, so I try to live up to the expectation of the healthy-world but spend most of the time in a state of recovery from the very few things I can do.
I am constantly aware of the alter-ego I could have been, living my life as a healthy person, and feel stuck in a parallel pale universe; a hair’s breadth away. I do try to be cheerful with others.
I miss so many things:
Ann completed a ‘slow marathon' recently for the ME Association. We'll blog her story next week.
The ability to work – for financial independence and for the interest, experience and self-respect I would gain from being employed.
A social life – I am now limited to an ME support group (invaluable) and time with family.
Holidays and travel.
Hobbies e.g. walking.
Driving.
Participating in life rather than observing it from a distance.
Waking up in the morning feeling refreshed.
Looking forward to events.
Even after all this time it is a struggle to accept that I
have M.E. but I have an ongoing project to live by my own guidelines to
maintain what health I have and to make the best of the situation.
Appreciation of the little things is a great help, keeping
informed of recent research really keeps me going and the commitment of the
ever-growing body of researchers is very encouraging.
I hope to see a diagnostic test within my lifetime and a
sea-change in the attitude to M.E. by disbelievers.
We are a national charity working hard to make the UK a better place for
people whose lives have been devastated by an
often-misunderstood neurological disease.
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