ME/CFS maths goes something like, “one week of careful fun equals at least one month of housebound rest”. At least, that is the case in my life when the careful fun is not quite careful enough. I am currently paying what I like to call the “fun tax”. This is the time I spend crashing and incredibly sick after overdoing things and not pacing well enough. What do I do when I’m paying the fun tax but the migraine has finally gone? Update my blog for the first time in months! So hi!
This summer, I was lucky enough to attend the Edinburgh Fringe Festival for the first time ever. It was an incredible experience, unlike anything I’ve done before, but it was overwhelming and exhausting. While I tried to pace and be very careful at the festival, it apparently wasn’t enough because ever since (about three weeks now and there have yet to be improvements), I have been too sick to go further than the supermarket. Realistically, I have spent the majority of my time being ill in bed.
Something people often forget is that when I am sick in bed, I don’t get the joy of sleeping and not feeling, nor can I do anything to distract myself because even reading is exhausting and causes further crashes. It’s just me, my ceiling, and the few dead mosquitoes crushed on it that I still always accidentally think are spiders! That, and the lovely friends that pop around sometimes, without whom I think I would be completely nuts. Life with ME/CFS can be. So. Damn. Boring.
After almost ten years of being sick, I am usually fairly successful in pacing and allowing myself to safely push the limits on a special occasion. However, sometimes I get things all wrong. And that is when you start paying the fun tax. The thing with the fun tax is that the longer you pay the tax, the less and less worth the fun gets. I generally try not to regret overdoing things and getting over-excited, like I did at the fringe. But when you have to pay such hefty fines for it, it becomes hard not to regret things.
There is something so devastating about being punished by your body for doing something that is not of the ordinary for other people. Things feel very unfair, especially when you see people doing exactly the same thing as you but coming out of it feeling energised and excited. It is very hard not to feel angry and bitter. The longer you spend housebound, the lonelier and more despairing it gets. The more it triggers memories and fear of things getting worse like they were a couple of years ago or like they are for other people.
I know it all sounds very melodramatic – but I did spend an hour crying down the phone today to my mum, so it was not really over-dramatised. Being so sick is just shit. There is not really anything anyone can say about that!
None of these negative yet completely natural emotions really help. Crying doesn’t help – it just gives you a migraine. And that is because ME/CFS is the gift that just keeps on giving. I will have to pay the fun tax time and time again, just like I have in the past. So allowing myself to wallow in despair doesn’t really process anything. I haven’t finished paying the fun tax, the fun tax is for life. That said, there is a fine line between not wallowing and not allowing yourself to feel very legitimate emotions.
Sometimes, I worry that writing blog posts like this is me wallowing in despair. But then I remember that I would imagine most of my acquaintances just think I’m taking a break from performing, or I’m busy doing other things. Despite being very vocal about my illness, I think you really have to see it to understand it. And so writing about the fact that I have been stuck at home for the last three weeks, barely able to leave the house for groceries, and feeling incredibly ill, is a way to communicate to the outside world the realities of having ME/CFS when they aren’t visible.
In conclusion, it is a messy business having ME/CFS and my body really doesn’t like doing fun things. I’d like to say I don’t wish it on my worst enemy but to be very honest, I am not that mature, and I do!
On the plus side for you, I have spent some of my migraine-free time writing more blog posts. So expect more coming up!
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