For me, one of the hardest aspects of becoming so unwell with ME is the not knowing. And I don’t mean the daily struggle of not knowing how I’m going to feel after doing any given activity, or not knowing if I’m going to be well enough to keep plans I’ve made with other people. No; I mean the not knowing of whether I’m wholly to blame for the situation I’m in.
Cause of ME
No-one knows for certain what causes ME, but it is generally accepted that it tends to be triggered following a virus or infection. And more often than not, it seems to happen to people who were not only previously fit and healthy – but also led particularly busy and active lifestyles (ie., the polar opposite of sedentary). I know I definitely fit that description.
My Rational Brain
Now, the rational side of my brain tells me it can’t possibly be my own fault that I developed ME. After all, people get viruses and infections ALL the time (as in, lots of people – not the same person. Albeit one person can be unfortunate enough to get repeated viruses and infections. Thankfully, I didn’t). And this includes people with crazy busy and energetic lives, with little time to rest – like me.
When most people get sick, they feel a bit crap for a few days, rest, eat soup, take medication if necessary – and then get back to their version of normal. Bish bash bosh. Sorted. I used to be one of these people. Until the time that I wasn’t. And this is where the irrational side of my brain kicks in.
My Irrational Brain
My ME could have been triggered by the worst urinary tract infection (UTI) of my life. It was brutal and took two rounds of antibiotics to make that bad boy piss off (pun totally intended). However, it could also have been triggered by the ever-so-mild brain haemorrhage I experienced a couple of months later. Or it could have been a combination of both these things that sealed my fate.
The problem is – I’ll never know how much of it (if any) was actually all my own fault. For years I would berate myself with questions over this. Did I do something wrong? Did I somehow cause or exacerbate that UTI? Sex? Jeans too tight perhaps? Is the fact that I didn’t go to the doctor when my head was hemorrhaging responsible? (It hurt like a mofo when the pressure inside my head changed – ie., from coughing, sneezing, bending over etc, but otherwise I thought I had a handle on it). I only found out it was a mild hemorrhage from a scan much later on – once it was too late. Maybe if I’d seen a doctor when it was happening, I wouldn’t have developed ME? Was my lifestyle to blame? I worked hard, played hard, and exercised hard in the gym. I didn’t take much time to rest at all – so is that the reason I’ve had no choice but to rest for the last 6 years?
Honestly, the not knowing how I’m going to feel from one day to the next is small fry compared to the bigger Unknown of: If I had done something differently six years ago, would I still be healthy today?
And learning to be at peace with that Unknown is the only answer I will ever have.
Big Ugly Piece of Peace
It’s a tough Unknown to exist alongside everyday, and for the most part, me and it are rarely on speaking terms. Thankfully however, after six long years of attacking and picking it apart … I think I’ve finally found something resembling peace with its big ugly presence.
Over to You …
Those of you with ME, when you think back to what may have triggered it – do you blame yourself? Do you ever wonder how things would have turned out if you had done something differently? And have you found peace with your Unknown?