I felt on top of the world yesterday. Granted I had way too many pain tablets to even count, but I felt on top of the world.. once they kicked in.
Today, I am paying for it. I am paying for it and I want to cry. I often had days before diagnosis when I’d tell my husband, “I can’t. I just can’t do this. I wish there was a nursing home that I could go to where I could sleep, be served food and sleep through the night-unlike a hospital where nurses and patients keep you awake at night. I want to be nurtured, mothered, looked after. I can’t do this. The pain and fatigue are too much. I wonder why.”
That’s the kind of day I’m having, I know why, and it’s only just past 8am.
The loud noise of the children’s shouting to each other from different rooms, my teen daughter’s very loud laugh all set my teeth on edge. I want to join in and just SCREAM as loud as I can. Shout that I need a break. But what would that hell except to frighten them? I want to be in a quiet place, resting my weary body.
I shouldn’t have been a hero yesterday. Moving my heavy queen size bed to clean under it, vacuuming and mopping multiple rooms, hanging laundry, bringing laundry in, hanging more laundry, ironing, working out…And daring to print practice exam papers and do dishes. It was too much for the me I am today. The me I will be until we try biologics AND they work.
For it’s still a long process. I don’t even know when I will be approved. I don’t know if we will afford it. And I don’t even know that the first attempt -Enbrel- will work. What I do know is that all my joints are screaming and I know the screaming is so loud that not all the pain meds in the world will bring the volume down to the level it was at yesterday. What I also fount out this morning I s that doing glute bridges hurts too-as well as some of the other AS specific exercises I’m meant to do.
What I do know is that I’m limping and nobody in my world knows how bad today is. And why should they? It’s not like they can come take the load off my painful, weary shoulders. And they know AS is forever. So, I come to my trusty online journal and share what many others are going through with their ailments.
We will survive -somehow. Don’t ask me how, as I hear my twins screaming and crying and want to join them instead of having to be the one to find the strength to sort it out.
Just breathe. The day is not infinite. Somehow we will find a moment of rest even if it’s right at the very end of it. And we will learn from yesterday to never try again to be the us we used to be before disease took over us.
Today, I have AS and AS has me. But it doesn’t change who I am. Weaker, slower, walking unevenly, silently crying but still holding on and being the me my children deserve. So help me God.
They said I should write a book 