I have awarded myself this massive gold star because one week of M.E. symptoms is too long, never mind a decade. I have survived and I deserve a giant gold star for that!
I had so many things that I wanted to say about my progress and my triumphs and the ways I’ve adapted to life with M.E. since September 2010. I was adding to the draft blog posts here and there (as is the way I blog.) And then I woke up on 31st August in a really bad way.
I never imagined, even a couple of weeks beforehand, that I’d spend my M.E. anniversary so close in severity to how things were for me back then.
And yet here I am.
I have come on in leaps and bounds my friends, and I could measure my progress in the unconventional ways of the chronically ill; being able to peel the lid off a new carton of milk, walking from one room to the next without much thought or strain, being able to brush my teeth more often than not, being able to pull open the kitchen door myself, mostly making it to the front door in time when the doorbell rang and I was already downstairs…
And whilst I always savoured those things and was so grateful for them, it still sucks that they’re not achievable right now. It’s been a long old slog these last few weeks.
I wanted to mark me surviving 10 years of M.E. in a way that showed others that a good life can be moulded around your health. And while I wholeheartedly believe that and am proof of that, I just don’t have it in me right now to say those words.
I strive for authenticity here. I’m not sure how I feel about the phrase ‘Toxic Positivity’, but I know that I don’t want to be ‘that’. Glossy, filtered, carefully-scheduled posts that brush over the darker side (or reality) of chronic illness, have never been my way.
I think this is well and truly my normal now isn’t it; this life with M.E. Well crumbs…
10 years ago, on 10th September 2010, my life with M.E. started with my first medical appointment to investigate why my vision was suddenly out of focus and blurry in a way that couldn’t be attributed to my prescription. It’s never improved.
I would make it through the next three weeks of September 2010 until my life simply stopped. It was completely and brutally turned upside down. A lot of people experience a gradual and slow onset of M.E. I had the opposite. I couldn’t walk. Could barely communicate. Went on to need to be spoon fed. Needed to have my hair cut off. Was wheeled from my new ‘bedroom’ in the dining room to the toilet.
By the 18th November 2010*, we would be told it was Chronic Fatigue Syndrome (or perhaps Addison’s Disease but they didn’t bother testing me for that until 2019!)
“Have a quiet Christmas and see how you are in the New Year” were the Neurologist’s parting words.
And yet here we are.
We are the most resilient and tenacious of all the people, my friends. Don’t you ever forget it.
This setback is gruelling. Week 5 and the improvement is minuscule if there at all. My husband assures me I’m able to hold a conversation more easily and the fact I’m more aware of my suffering shows that there has perhaps been some progress. At my worst I have little idea of what it is I’m enduring.
I’m all for being my poorly body’s biggest cheerleader as it tries its best to function. But it’s hard not to declare it an absolute arsehole at this point.
Patience is something I have learnt over the years. I need to put that in practice now. Clinging on to hope (and him.) So often that’s all we can do.
*Yes that is a very quick diagnosis for this condition.