This post is inspired by Pippa Stacey’s book “Dear Chronic Illness”.
“Dear Chronic Illness” features a series of “letters” written by sufferers of various chronic illnesses, including M.E., Fibromyalgia and Ehlers-Danlos Syndrome. Each letter is written to each condition, each letter beautifully written.
The book represents a therapeutic concept, writing to someone or something, getting down onto paper one’s inner thoughts and feelings.
For me, there are several aspects of living with chronic illness that I have massively struggled to come to terms with. One of which is post-exertional malaise, or PEM for short.
PEM is the hallmark feature of life with ME/CFS. Post-Exertional Malaise is characterised by a worsening of symptoms following minimal exertion, whether that be physical or mental. The thing that makes PEM so disruptive is that it is delayed by generally 12 – 48 hours after such exertion, and can last for days, if not weeks.
So from being inspired by “Dear Chronic Illness”, I decided to attempt my own version. Here goes…
As I lie here on the sofa, writing away at my laptop, my leg muscles are burning. I have ear plugs in to protect myself from the day-to-day noises outside. I’m covered in a blanket as I’m thoroughly freezing, despite head to toe thermals and central heating. My ability to get words out and speak in full sentences in conversation has evaded me. The names for the most basic of items around the house, lost.
PEM, you are the one who has made me give up my job, my hobbies, any kind of full day out somewhere. You are the one who has forced me to never be too far from home, knowing full well a “crash” could happen at any point. You are the one who has forced me to nap for at least 2 hours a day.
PEM, you are the one responsible for me missing out on activities with my daughter. You are the one responsible for me having to now fork out for the hire of a seriously heavy (but actually quite jazzy) powerchair just to get around.
But do I dislike you? Am I angry with you? No, I’m not.
You have delivered me (and therefore my hubby and daughter) this – albeit rather shitty – chronic illness package, with my name on. The metaphorical gift-tag on said package: what are you going to do about it? You might as well be asking me: am I going to mope at home? Yes, most of the time. But am I going to let it make me depressed? No, I bloody am not.
PEM, you have changed mine and my family’s life in more ways than I could ever imagine. But actually, maybe there’s a reason for it? Maybe, just maybe, you’ve forced me to re-evaluate how I approach daily life. It isn’t great, there’s no sugar coating that fact. I’d much, much, prefer to be working back in my job as a teacher, earning a salary, or if not, at least be able to spend full days with my daughter without having to get outside help just to get through that.
But do you know what? PEM, you have made me much more chilled out than I’ve ever been before, because you turn up most strongly when I’m most stressed, most angry, most hyper in emotional terms. You’ve forced me to actually calm down, take things that bit easier. Ironic considering you’ve turned me into a wheelchair-using 30-something year old.
I’m not going to thank you in some gushing speech, PEM, because quite frankly you are not a symptom I want to continue having. But for now, this is the package you’ve delivered me and this is how things are going to be from now on.
I continue to hold onto the hope that I may at some point be able to cope with a full day out and about.
But until then, the sofa it is.
Until next time,
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