I found this photo recently. I’m guessing it was maybe 2012? That’s what most of the first few years of this journey looked like. Seeing myself in photos like this used to make me so sad, and there is still an intense fear of full-on relapse, but I can also feel immense pride looking at this photo now.
I can’t stress enough how little control you have over M.E, but when I sit and think about it I did have choices to make back then and the choices I made then, have helped get me to where I am now.
I believe wholeheartedly that most of it is down to luck, & down to circumstance. I had/have an incredible support system and no other commitments other than the one to myself; to do what my body needed of me. Most essentially, I could rest. Rest and rest and rest. There was no job to try and keep (I stopped working weeks into getting M.E.) There were no children to raise. No bills to pay as I was back in the family home being cared for.
But that 21 year old girl who sat through CFS/ME clinic group sessions with the most toxic & depressed people she had ever met stayed focused on her own journey; theirs became irrelevant. They were deeply unhappy people. Some had suffered for decades. They used the group sessions to offload and I cannot express enough how damaging that was as a 21 year old newly diagnosed sufferer.
I became quite confused by their misery; they were all working, raising children, going out some evenings. I was being spoon fed by my sister & too weak to take the lid off the pen in the first session that required us to write our name badges.
It wasn’t that I felt more entitled to feel miserable or that I felt they should be grateful. It wasn’t that they weren’t justified to feel exactly how they felt. It was a genuine confusion; because I had already started to celebrate the tiny wins & could feel how good that felt. Why was I different? Why wasn’t I miserable?
I came to see it as pure luck that my mindset was different. What upset them most were their expectations & their constant need to make comparisons; to their peers, to their old selves. And I was new to it all; not yet worn down by years and years of such a devastating illness. But almost 9 years in, my mindset remains as it was; seeking out any glimpse of a silver lining. I am learning to champion these things that make me me. Some days I spiral, as anyone would, and cannot feel anything but utter despair for how destructive this illness has been on my life and the lives of those around me. But I bounce-back each and every time. So far.
After just one session I nearly didn’t go back. I came out sobbing; absolutely terrified that my future could only be like their present was. But I did go back. I sat through those wretched sessions; sessions that wiped out the whole of the week. And I took from them the snippets of information that applied to me. And the fact that my younger, more-vulnerable self felt brave enough to go back & sit through those sessions with those people makes me so proud of her.