Accepting ME · Living with ME

The Dress Alteration

Six years ago (almost to the day) I received a phone call from my doctor announcing whatever alien species had invaded my body weeks earlier –  in late December  – had taken his UFO and flown elsewhere.

Her delight mirrored by the fact my ESR reading had dropped, my bloods were reading normal and nothing had shown up in any of her tests.

Sitting at the end of the phone line, I listened to this wonderful news, feeling anything but wonderful.

The day of the phone call occurred after a week in work/week off work sick, carousel ride. That week giving itself up to a week’s holiday. My thinking at the time was well if I take a weeks annual leave as opposed to sick leave, and try and do something fun instead of being plonked on my couch, then maybe I could somehow trick my body into believing it wasn’t sick at all. This plan didn’t exactly pan out, actually it spectacularly failed on the very first day.

The first day of this new thinking process was to drive to get my hair cut – an overdue appointment which had been postponed throughout January and early February – an appointment I managed to keep that day.

With my new tidy hair, I drove a little further, parking in a multi-story parking lot with the aim to amble Shop Street in Galway city. After all I was on holiday, a short gander through the shops was deserved.

I never made it to the shops that day, instead I found myself clinging to a cup of juice in the public seating area of the shopping centre above the car park, wondering how I was going to get back to my car.

Sitting amid bustling bags and handbags, my mouth made a smile at the strangers seated around me, strangers I feared would have to help me.

Thankfully, breaking the process of getting back to the parking lot down, I managed to make it on my own. First, taking the steps to the lift, where I let my body rest against the back wall, then taking the steps to the ticket machine, where again I had a rest, until finally making a perfect straight line to my car, where I rested some more before turning the key in the ignition.

That for me, was the day I knew something was wrong with my body. And so listening to my excited doctor days later, a doctor telling me I was bettered and ready to return to work, well all I can say was, I was utterly confused.

After that phone call, worrying this illness was somehow concocted by me in some make believe world I’d become trapped in, I contacted my physio and club mate, explaining this great news of betterment. Asking how to go about returning to training and running, having done nothing for weeks.

Listening, she explained I’d first have to walk, then run. Stating training for a race was not to occur for at least six weeks, once I was capable of running 10km again.

Putting the phone down. I sobbed.

Throughout that January and early February I believed a 50km race in the June of that year was still a possibility. Running was a passion of mine, racing too a passion. That day, my planned race fluttered into the distance as I owned up to the fact my body simply wouldn’t be ready.

After one minute of sobbing, I suddenly hit myself across the ear and told myself to cop on. Sh** happened. I had to get over it, move on, focus on walking and building my body back up again, after all, the 50km race would still be there the following year. I had a year and four months to see to it I was on that starting line.

Move on I did, for half a day.

Returning to work wasn’t the fanfare it was supposed to be. I was still as sick as I’d been, still unable to complete the tasks set out before me and so ended up reducing my hours from 8 to 4, again thinking I could somehow make my body think it wasn’t sick.

Two days later I rang my doctor again, only this time she didn’t bring me into her surgery, she immediately stated something was amiss with my body, something she’d missed and so referred me to a consultant who later diagnosed my ME.

So began the journey I’m still travelling.

In place of running and training, I’ve learnt how to garden. (There’s a young tomato plant currently sitting on my living room windowsill, a small tiny seedling I sowed two weeks ago – a plant I’m incredibly proud of – I’ve never grown tomatoes before). And in place of work, I’ve learnt how to do small pieces of writing for others, and in place of the life I once had, is another. An equally important life, although considerably altered.



2 thoughts on “The Dress Alteration

  1. I was afraid you were going to tell me that when you talked to the doctor the second time, she didn’t bring you in to the surgery because she didn’t believe you, and that you had embarked on the horror that is living without a diagnosis, with the doctors and everyone else thinking you were making it all up or it was all in your head, an experience far too common.

    You were actually lucky: many sufferers have gone for very long times, and end up self-diagnosing. At least you were spared that.

    I still have a group of doctors who, while they don’t disbelieve me, make zero effort to find out what that means and how it affects my care, and I don’t have the energy to look farther, so I live with the exhaustion, have learned my own methods to cope, and don’t know anyone who has it better, and whose doctor could help. It is very little fun.

  2. This is so well written, and I’m sure there are many of us that can relate. I pushed on at work, even after diagnosis, not wanting to believe this was ME. The disease got me in the end, and now I write and paint, and build a new life. Always enjoy your posts.

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