My friends, it doesn’t happen very often, but every once in a blue moon, I have a day where I wonder if this is really IT. If life is really going to be like THIS.
Today, as I came to rest in bed after having my sister and nephew visit, I questioned whether my life will ever be more than this. This needing to take to my bed after a relaxing catch-up with someone I’ve known my whole life because the exertion has left me unwell.
And it’s a complex thing to question. Because the very sister who just visited me, in my very own home, is the one who spoon fed me in my Dining Room bed or on the sofa when we lived at home together.
Surely, compared to that time, this should be enough?
I am living a life I never dared to even think about in those early years. I’m the first to tell you I’m happy and my life is good. How I’m living well, within my limits.
But you know what, sometimes it’s not enough. And that is perfectly okay. You won’t find toxic positivity here.
It is still the cycle of Bedbound, Housebound, Little Adventure. Bedbound, Housebound, Little Adventure. I plan and pace and prioritise and I have seen monumental improvement. But it’s still 24/7 illness. Just to a slightly lesser degree. It’s okay if that’s not enough some days. Luckily for me I don’t feel this way very often at all.
I am aware that some of these feelings are a result of my internalised ableism and from living in a capitalist society. But it can all seem quite mundane. Hobbies are the stuff of dreams. Even my children’s polymer clay has been back in its box for months, as I am unable to work the clay.
I would like a job. I would like to spend time with my family without having to weigh up whether or not I can. I would like to never have to visit of Doctor again. I would like to see my friends regularly. I would like freedom from this illness.
So I’m letting it be for today. I’ve had a cry. I’m snuggling down with a soft blanket. I’ve lit new candle. I’ve got chocolate in the cupboard.
Tomorrow is a new day.