Always Tired, what does life with ME look like (Myalgic Encephalomyelitis)

Updated: Dec 14, 2020

When I talk about ME/ Chronic Fatigue Syndrome, I usually put my efforts into drawing attention to the fact that, despite its confusing name, it's not just 'feeling tired'. ME is a long-term neurological condition which impacts all of the bodies systems, most notably the immune and nervous system.

People with ME experience debilitating fatigue, pain, post-exertional malaise and cognitive difficulties. The full range of symptoms is seemingly infinite, covering everything from an inability to regulate our temperature to brain fog and instability. Aren't we lucky, some people have it all.

But today I want to talk about the fatigue. The exhaustion. The always tired.

A few years ago, I was characterised as having severe ME. I couldn't get out of bed. My mum would often find me crumpled on the bathroom floor after attempting to brush my own teeth.

I remember lying in bed, imagining what it would be like to stand at a bus stop, holding my coat above my head in a vain attempt to stop my hair from being soaked in the rain. The idea of being outside on my own, not only standing up but raising my hands above my head, was absolute fantasy. I wanted to experience it with the level of desire most people have when thinking about the lottery.

The first day I was able to sit up for 5 minutes and put together 3 pieces of a jigsaw puzzle will forever be one of the happiest moments of my life.

Over a series of months I completed 3 jigsaw puzzles. Piece by piece, in 5, then 10, then 15 minute bursts. Each week, slightly easier than the last.

I don't know how or why my body decided to change course and heal itself. But it got me here, to life with Moderate ME. Where I still can't stand at a bus stop in the rain, but I can do so much more than lie in my bed imagining it.

But living with Moderate ME is tricky. Because after a while you stop being amazed at being able to brush your own teeth and you start to wonder what it'd be like to wash your own hair. Or wear make up again. Maybe wear clothes instead of pjs. Sit at your desk instead of the couch. The more you get the more you want.

It's a cruel game and the second you push yourself too far, you've risked relapsing back to when you had nothing.

I'm always tired. Physically and mentally. It's not the type of tired you feel after a long hard day. It's a flu-like, bone-deep, black-hole tired.

And it's hard. Because now I've got a taste of what life could be like, I want it. God there is SO much I want.

So in my own, slow and steady way, I'm doing it. Just like I completed those puzzles, one piece at a time. And honestly? If I could plug myself in and have all the energy in the world, I don't think I would. ME has taught me how to have water-tight focus on my goals & values. I don't have the luxury of faffing about. I'm an expert at time-management and I have the patience of saint. I've had to learn to communicate in an abundance of ways. And most importantly, I know better than to take the little things for granted.

Plus, if it wasn't for the fact I'm always tired, I wouldn't have such a banging pyjama collection.

If you'd like to learn more about ME and access support, Action for ME have a range of resources available over on their site.

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