I don’t know if it’s an actual thing but I bet any disabled person would recognise the frustration and the impact of medical fatigue. That is to say, having your life run by a never ending cycle of appointments meant to maintain you.
I have spoken a lot about the impact that the deterioration of my condition is having on my mental health. I feel fragile often, overwhelmed regularly and cheated pretty much always. But I choose to own my feelings. I will not deny them because I finally agree that I am important.
But a new battle is apparent.
I cannot live my life how I, as a person, a mother want to live. I am not afforded that level of control.
Because even when I am able to stop working, maybe have another child and cherish my family, I will always be beholden to an ever growing roster of appointments.
At the moment, I am still trying to maintain my hours at work because know, money’s useful. But actually at the moment, I’m averaging 3 hours a week on appointments, not even accounting for travelling in the first place. The two together is draining me.
Yesterday was podiatry to talk through my hip pain when walking. Didn’t get much from it really. So instead I need to go back to the Functional Electrostimulation clinic and see if they have anyone that can support me. (Their little box shocks my weak leg into pulling straight. Using the leg as it should be after 30 years is strange and pain is to be expected I’m told!)
Today is physio and then counselling. Both absolutely necessary, the former of which takes 6 hours because I have to get the train because I can’t safely drive the distance. This results in less time with Squidgelet cos I have to swap my days off to accommodate.
Then there’s massages which constitute my most peaceful hour of the week. I wish it could be more often.
I know they all have vital functions but my God, can there just stop being things I must do.
I’m starting to feel more like a condition than a person. That has a real emotional toll. And so round and round it goes.
Medical fatigue is real.