Monday 14 April 2014

The Onset of M.E

Memoirs aren't for everyone, some people like them, some don't. I haven't led an outstanding life, more one where my well laid plans went wrong. That's not glass half empty, that's fact. I'm sure many people will relate to this. In 1995, just after my 40th birthday my plans went wrong in spectacular fashion. This excerpt from my memoir BETTER OR DEAD, sequel to Shadow Across the Sun, is how it all started.

The first part of the book may seem  little slow to fellow M.E/C.F.S sufferers who want to compare their experiences to mine but I hope you'll bear with me through my 'normal' life until this post below which as the title says was the onset of M.E. It perhaps will help indicate why we grieve for our lives as they were before the illness struck.

If you can identify with it and subsequently download the book, I'd be so grateful for a review on the book's Amazon page.
Many thanks.

It was sometime after the Easter holidays that I started to feel weird. I couldn’t put my finger on it at first. I’d just feel a bit disorientated. It panicked me a little. I wondered if I’d got epilepsy coming on. What if I had? I wouldn’t be able to drive, then how would I get to work?

At the end of April Barry had come to see the boys one Sunday and I went to the local shop while they were together. It is only about a five minute walk up the bank to the top of the estate and I’d done it a million times and thought nothing of it. That day however, when I got to the top of the bank I was gasping for breath, I was exhausted and almost had to stop and rest. ‘My God,’ I thought, ‘what if I’ve got a heart problem and can’t work?’ I completed my errand but when I got back home I was so exhausted I had to sit and rest for half an hour. I’d never known anything like it.

After a few days I thought no more of it and thought I must have had an off day. Then it happened again. I’d gone to pick Elliot up from school after work – I can even remember what I was wearing, an animal print blouse – and I’d had to park at the bottom of the bank where the school was situated. I had the overwhelming feeling that I couldn’t walk up that bank, but of course I had to to fetch Elliot. When I reached the playground I was worn out and glad to stand and rest while I waited for him. We were due to walk up to the Salvation Army citadel in town that evening for St Michael’s children to sing. How on earth would I manage to do that if I’d struggled to walk from the car? I did manage; the weak attack passed.

The next two attacks came over half term. The first one was when I was doing some gardening. My back became suddenly very weak and I had to go in and sit down. The second was when I was peeling carrots for Sunday lunch. Sunday was usually a busy day. Both boys played football. Matt went with his friend and I took Elliot to lads and dads but fortunately not that day. It was the same as before, my back became suddenly weak and I went and sat on a dining chair by the table. Matt came in and saw me and asked what was wrong.

“I don’t know,” I said, “I was just peeling the veg for lunch and I went really weak.” I looked into his concerned young face. “Oh Matt what if I’m ill and can’t work? How will we manage?”

He put a reassuring arm round my shoulders. “You’ll be all right. Perhaps you just needed a sit down.”

I seemed to be needing to sit down a lot!

I went to the doctors and saw Dr Collins and told him of the weak attacks and the weakness in my back. I told him that it scared me and made me panic. He signed me off sick for a week and put anxiety state on the sick note. Naïvely I thought that after a week I’d be fine.

At first I was once I returned to work but I’d get strange feelings like a sudden urge to lie down on the settee, a feeling of what a long way it was to Kerry’s room when previously I’d skipped up the stairs. One evening I had the most excruciating headache and had to lie on the settee. Rob and Leah had come round to play games but I couldn’t join in, they played upstairs; Emily and Cassie had also come round.

“Play quietly,” she told the boys as Cassie rushed up the stairs to join them, “your mum’s got a headache.”

The most frightening thing happened in Asda. Our Thursday evening routine was, I’d come home from work, pick the boys up and we’d go to Asda in Wolstanton to do the shopping, where we’d have our tea and I’d buy the boys a magazine. We collected the trolley, got inside and the boys shot off to look at the magazines. As I entered the greengrocery section my back went weak and instead of enjoying selecting what I’d buy I just threw the items in the trolley. When I got to the shampoo aisle I picked a bottle up, turned it over to read the back and suddenly all the words blurred into one. I squinted, I blinked but all of the letters became jumbled up and didn’t make words. I panicked, big time! I’d got to drive home, for some way down the A500, a dual carriageway and a fast road and I couldn’t see straight. I rushed round the store throwing everything on my list into the trolley then rounded up the boys.

“Come on we’ll have to be quick, I don’t feel very well,” I told them.

They looked at me with puzzled expressions but put their magazines into the trolley and we headed off to the checkouts and the café. As they chose what they wanted to eat I just wanted to get out. I’ve learned since that that was my fight or flight reflex kicking in and at that moment it was telling me that I had to get us home, but I couldn’t disappoint the boys, they liked their Thursday tea in Asda.

I ordered a jacket potato and they had beans and turkey dinosaurs or something and we found a table. I bolted part of my potato but I couldn’t sit still to eat it, every instinct was screaming GO, GO, whilst by contrast they chatted leisurely. Luckily we were sitting near a fan in the ceiling and I had to go and stand under it to cool off. They seemed to be eating in slow motion, as though they had all the time in the world, which normally they would have but not that evening.

“Don’t talk, eat,” I commanded, wafting my hands as if shovelling food into their mouths from my position under the cool air fan.

They looked at me as though I’d lost the plot but I just repeated, “Eat!”

After what seemed like an eternity they finished their meal and I rushed them at breakneck speed to the car. I unlocked it, they got in, settling down to read their magazines, Matt in the front, Elliot in the back and I threw the shopping into the boot and raced to return the trolley, then raced back to the car as though I was in an Olympic track event and everything depended on my speed. My hands were shaking as I put the key in the ignition and pulled off the car park. I had to go for petrol then my next challenge arose, the other traffic on the road.

“Don’t read that magazine,” I ordered Matt, “you’ll have to look for traffic with me.”

He looked a bit bewildered – I think they both thought I’d taken leave of my senses – but he did as I asked and I felt better for his back up. By the time we reached home I was shaking from head to toe and once we’d unloaded the shopping both boys could enjoy their magazines. When it was all put away I could at last relax myself – but what ever was wrong with me?

I went back to the doctors and saw a different doctor, a young female doctor, new to the practice. I told her of the episode in Asda, of my back going weak then my eyes going weak and the words on the shampoo bottle running into one.

She almost sneered at me. “Well there’s nothing to connect your back and your eyes,” she said with contempt and I came away with still no explanation as to what was wrong with me.

If you wish to make a donation to M.E. research or to organise a fundraising event please visit 
Postal address: ME Research UK, The Gateway, North Methven Street, Perth PH1 5PP 

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