The confusing convalescing continuum

The pretty tangle outside my bedroom window …

I’ve been sick, on and off, for years. If you’ve been reading my work for a while, you will likely know this. You might even have wondered when I will get my bloody shit together. It seems, of late, that I may not. I was diagnosed with Myalgic Encephalomyelitis earlier this year. It was not a surprise. It was good to finally know. But then I realised that it’s an illness with a stigma and very little treatment. I asked for advice from a friend who is living with this condition (thanks Sue!). I remembered an old boss whose daughter had it back in the ‘90s (hey Mr Cohen!) I asked for advice within the ME/CFS community online and received lots (thanks kind sorts!)

Apparently millions of people live with this illness, and many more will have it or something similar in the wake of COVID. It’s often caused by the body’s reaction to a serious virus at some point and it’s thought that body’s mitochondria have issues with getting energy to the cells of folk like me. It’s also suggested that it might be related to a misfiring of the immune system. Lots more study needs to be done, and in the mean time people like me might be left too sick to work – and worse. You can imagine how that impacts and the fact that ME is not considered a disability in Australian (and – I’m just learning – many, MANY other countries) leaves people like me in a pretty tricky situation.

For me the days since I was diagnosed have been the same, but different. Now I know that it’s key to not do a lot, to pace myself, to keep an eye out for the tell-tale signs of a flare (for me those are swollen lymph glands, back pain, blurred vision, heart palpitations, breathlessness, a feeling of not getting enough oxygen, an internal heat, an inner vibrating feeling, insomnia, aching joints, dizziness, a feeling of pressure in my brain, stomach issues, constant crippling exhaustion … for starters.) When I feel a flare coming I need to take to my bed as much as I can. I can sometimes watch something, sometimes read a tiny bit, and very rarely listen to things like podcasts because I just flake out. It’s boring. It’s frustrating. I’d rather be doing all the things I want to do.

It’s not like depression - although you might become depressed if your ME is turning your life into a pile of poop. ME is a physical illness, to be clear.

Sometimes if I do this lying down for a day or two, I regain some of my energy and can manage a couple of the things I used to do before I crash out again. Other times it doesn’t work at all (like this week) and I have to MOSTLY stay in bed.

Some things that help when I feel like this include: a short warm bath in the early morning, lying in bed in a dark-as-possible room, breathing exercises, sitting on the back step drinking a cup of tea, wearing very comfy pants, regular paracetamol (but not too much), anti-viral medication, sipping water with electrolyte and immunity fizzies in it. That’s all I’ve worked out so far.

Some of the worst things you can do for this illness include - working up to doing more exercise (they call that “graded exercise” and it can make the condition much, much worse), cognitive behavioural therapy (it’s a physical condition - you can’t cure a broken leg with CBT and nor can you treat ME with it and denial with accompanying NON-pacing of daily activities (I have tried the last one and it did not work out, pals!)

It’s wildly frustrating to feel this way. I don’t really know how long it’s going to last and I don’t know what the future looks like. What I do know for now is that I have to take each day as it comes, that I have to prioritise the things that make me feel okay and nourish my body (no woo-woo, though!) and that I need to use minimal energy when I do things. Avoiding stress is a huge one too, but if you’ve been reading here you will know that I have to move back to Melbourne in December. I’m trying to find a way to manage that without breaking myself even more, but I don’t know if that will work out.

That said, Melbourne has lots of specialists I can see, so I am looking very much forward to rolling out a care plan when I get back. In the meantime I am cobbling together my own little How To ME guide to help me through the lying down and less-lying down days. I think it’s going to be – as with many other things – a consistent self-kindess approach and keeping an eye out for all the good things that will help. And good doctors. That will help too!

In the mean time I’m going to write about the things that help in my pragmatically positive way, in case that might help others with debilitating chronic health conditions. Like I said, ME is not a mental illness, but it can spark mental ill health alongside the condition. Some approaches to feeling better will be shared. Others will be ME unique.

Wish me luck for my saving up and packing and driving to the boat and journeying across the sea between now and December, pals. I gotta find a way!

Love youse! Thank you for reading this far, if you managed it! Sorry it’s not peachy, but there are going to be peachy bits. I just KNOW it.

xoxo Pip

You can find out more about ME by checking out the #MEAwarenessHour hashtag on social media.

Here’s some information about why Chronic Fatigue Syndrome (the original name for what we now call ME) is not an appropriate one.

Adam @ABrokenBattery

The name Chronic Fatigue Syndrome (CFS) was a "big mistake" because it "trivialises and stigmatises the illness" and "makes it seem unimportant maybe not even real" Dr Anthony Komaroff part of the group who coined the name in the late 80s. #MEAwarenessHour

There is a documentary on Netflix about ME called Unrest. (I found it pretty scary, to be honest. Wah!)

And here’s a video about it by a new friend of mine!