ME Awareness: “While in many ways it was a relief to finally have a diagnosis, both I and my husband were devastated,” by Carolyn White | 17 May 2020


The Lost Years by Carolyn White.

I was formally diagnosed with M.E. (myalgic encephalomyelitis) in September 2018. It followed many years of various symptoms being dismissed by my doctors as unimportant because nothing ever showed up on the countless blood tests.

Carolyn White.

While in many ways it was a relief to finally have a diagnosis and know that I wasn’t mad, or a hypochondriac, or a nuisance – or any of the other negative labels I’d been given over the years – I have to say both I and my husband were devastated.

Work and finances

Even though at this point I’d been retired from work for more than 2 years on health grounds, in my mind I was still convinced that this would be like all the other occasions over the years when I’d crashed and that with time and rest I would be able to return to employment.

In one fell swoop any hope of that happening was gone and I felt as though, since I no longer served any purpose, there was no reason for my existence.

My health has been erratic for most of my adult life. I first noticed how exhausted I had become back in 1988 and was diagnosed with an under-active thyroid gland.

However, while my blood tests showed the medication was working, I felt no better and there followed my first block of absence from work for more than 6 months.

My GP signed me fit to return on the basis that the more you do, the more you can do. This set the pattern for the rest of my working life.

By the mid 1990’s I was so tired I could hardly breathe – my GP acknowledged that that was excessive tiredness but would not say I was unfit for work.

By this time, I was caught in the financial trap that without benefits we would not be able to pay the mortgage, but I was not considered sick enough to qualify for them. So, I kept on working, pushing myself to my absolute limit year after year after year.

Ordination

“I didn’t complete my degree but received sufficient qualifications to be ordained in September 2007.”

In the spring of 2003, I was accepted to train for ordained ministry, which meant completing a 4-year degree course in Manchester.

This would entail attending college and 2 concurrent placements in both a church and a charitable organisation.

After so many years of pushing myself so hard I had no idea how much lower than normal my energy levels were, so I thought this was achievable.

Unfortunately, before I could start at college I was hospitalised with labyrinthitis and have never fully recovered.

With hindsight, and knowing what I know now about M.E., it seems incredible that of all the doctors I saw regarding my lack of recovery, no one even suggested I might have a real problem.

The ‘best’ advice I got was that I could recover tomorrow, but no one knew for sure. I didn’t recover and limped through 4 years at college.

I didn’t complete my degree but received sufficient qualifications to be ordained in September 2007, having missed out on many of the extra-curricular activities that would have enhanced my ministry.

I wish I could say everything went well from then on, however, with no reserves of energy, I was an accident waiting to happen. Eventually, towards the end of 2015 I crashed and burned completely.

Losing out

So, that’s the history of my life with M.E., but the question asked was what am I missing in life now compared to before the M.E.? Honest answer, I can’t remember that far back!

“I don’t remember the last time I went out on my own, even just to browse around the shops.”

I have always paced myself to enable me to do the essential things like paying the bills and have given up much of what I enjoyed along the way.

When I was young, I used to knit, do embroidery and dressmaking, travel, but these things fell by the wayside many years ago.

I love gardening; it’s hard as Spring approaches knowing I can’t get outside. I have always loved to read anything I can get my hands on.

Now I’ve improved enough to be able to actually read a novel, although I can’t remember the characters in the story – which has the bonus that I can re-read a book as if it’s completely new to me (the novelty of that soon wears off.)

I used to read my Bible every day, now my eyes flit all over the page when I try to concentrate properly – that is something I really miss, but I realise most people wouldn’t consider it as much of a loss.

I don’t remember the last time I went out on my own, even just to browse around the shops.

My mobility scooter sits in the shed as I don’t have the energy to negotiate the uneven pavements round our home and concentrate on dodging the people who walk straight at me as if I’m invisible.

Supermarket shopping is traumatic in a wheelchair, so I go there as infrequently as possible. And I miss the freedom of being able to jump in the car and go where I want, when I want.

One thing stands out above all else, though, that I miss beyond everything else – relationships with other people.

All this month we are sharing your stories and discussing life with M.E. Join the us on MEA Facebook.

My social circle has reduced to 4 members of my family, a small group of people to share coffee with after church each week, and only 1 or 2 dedicated friends who still try to ring me, if not necessarily visit.

Going out and socialising by myself is impossible, and it worries me that I am getting so isolated that I no longer want to go out.

Blessings

With M.E., it’s very easy to focus on what we’ve lost and forget to count our blessings.

I may have been ill most of my life, but I took every opportunity that came my way, within my limitations.

I would have had a very different life if I’d known how ill I was from the beginning, I certainly wouldn’t have been to the many places I’ve had the pleasure of visiting, nor met so many wonderful people.

I’m not yet at a place where I can embrace my illness and find a new role for myself, I still need to find activities that can replace those things I miss.

However, it no longer feels like the end of the world.

ME Awareness Week Monday 11th – Sunday 17th May 2020

The Lost Years

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