Despicable M.E.

That’s me, earlier this week, catching up with a friend. Looking (I think) reasonably healthy, with a beaming smile thanks to a cracking catch-up and a healthy dose of gossip.

An hour later, I was home, in pain, in bed, trying to find the least-worst position to rest my body which was a combination of sweats, burning limbs, sore joints and resembling something akin to a person who had just gone ten rounds in a boxing ring.

For many months my symptoms have most closely matched those of Myalgic Encephalomyelitis, or M.E., but as I’ve mentioned previously that was only my working theory rather than their expert conclusion.

Well, yesterday, at 3.20pm on Wednesday 25 October 2017, one of the specialists who’s been working to suss out what’s wrong called it. “Gary, it’s M.E.”

An excerpt from an email from one of my consultants following a diagnosis of M.E.

As much as it’s what I expected, it was still a lot to take in. Suddenly all the implications of what that meant for me became real.

In recent days the trailer for a new film about one woman’s struggle with M.E. has been doing the rounds. I still haven’t watched Unrest but the trailer neatly sums up what 2017 has been like for me.

My social media feeds show me smiling, happy, going for walks or occasional evenings out. They show a weekend away in Rome and a summer break in the Austrian mountains.

What they don’t show is the hours a day spent in bed, the need to peel my sodden clothes off me, my legs buckling beneath me, or my brain being so foggy that I just can’t find the right words.

I didn’t document my poor fiancé having to, literally, push me back to the hotel in Rome (there was a taxi strike, it was a hellish moment amid an otherwise lovely visit). I didn’t post pictures of me in bed during the day in Austria. While the family were yomping or climbing mountains by day, or heading out to restaurants and concerts by night, I was either dozing or sleeping.

It’s this other side of M.E. that’s hard to understand. And that’s partly my fault. The ‘image’ I choose to project is positive and happy. That’s partly because I like sharing those moments, and it’s partly to give me encouragement to remind me of the things I can do.

But getting the diagnosis yesterday has stirred up lots of emotions and thoughts.

Will I get better? Will I be able to get back to the job I love? Will I be able to do normal things again like days out and going for proper walks? Indeed, when I get married next spring, will I make it through the day?!

I’m operating on the mantra of “worry less, no rush”, so I am trying to let these thoughts and questions pass me by for now.

The more I relax, the more I learn to live with my cycle of energy and fatigue, the more I’ll be able to make the most of what I can do, rather than dwell darkly on the things I can’t.

Anyhow, Gary v2.0 begins now. It’s time to focus on me and M.E. to learn to be the very best I can be.

My first step has been to set up this little website called Zonked Club. It’s in its really early stages. I want it to be a platform where people with M.E. can share their experiences, good and bad, and create a community that understands each other and can learn from each other.

If you get the chance, have a nosey.

Don’t be too judgemental at this stage as it’s just the bare bones, but do please share any thoughts on what you think it could do, and all suggestions for spreading the word are greatly appreciated.

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