13 years ago today I had my first medical appointment to mark what would be the end of life as I’d known it for 21 years. My vision was out of focus and blurry, but in a way that was very different to a change in my prescription. By the 28th of the month I’d lost almost all of my abilities. Working. Driving. Walking. Talking. Even chewing was on its way out.
It has always served me well to mark this day in some way. Usually with cake. Each to their own. My sister used to buy me a children’s birthday card with the right number on the front.
I have done my best for 13 long years. I’ve adapted as best I can to this situation and these circumstances. I’ve grieved the person I was and the person I might have been. And so I will champion the person I am now; the result of the hardest experience I’ve ever had to endure. Able to adapt and regroup and give in to the symptoms whilst never giving up on the possibility that tomorrow might be even a tiny bit easier in some way.
To those at the beginning of their own experience with chronic illness, it’s going to be okay. Different, and very hard, but also okay. (It’s amazing and heartbreaking how our definitions of okay will change.)
Lean on those who have gone before you. Learn from their experiences. Find ‘your people’ within this vast community. Kick and scream every now and then, but learn that so much precious energy gets burned up far quicker doing those things. There is so much peace and contentment in acceptance, in whatever level of that you can reach. Yes, acceptance wavers. But so too does the grief and sadness.
We might not want this to be our new normal, but I’m afraid what we want has little bearing on the situation.
13 years. Every single one of my friends has now known me with M.E. for longer than they new me before it.
Today will be a day of reflection and feeling proud of myself and buckets of grief but, most of all, cake.
IMAGES: 1. A slice of coffee and walnut cake on an orange plate. 13 candles are piled next to it. 2. Anna in Christmas 2010 before her makeshift dining room bed (a mattress on the floor) became a proper dining room bedroom. She’s giving a thumbs up in her bed.
'M.E. myself and I' by Anna Redshaw 