…don’t come again another day.
Muscle and joint pain come hand-in-hand with this condition.
I am fortunate enough to not experience chronic pain but others are not so lucky. The pain is constant and neverending and never truly leaves them alone.
For me, it comes and goes with particularly bad bouts of it after some kind of activity, like doing something as wild as having a friend come to visit.
Pain that comes from non-M.E sources has a cataclysmic effect on my M.E. symptoms. Something as small as a paper cut or insect bite or just a small bump from walking into the kitchen table (bad balance, you understand) will, and does, wipe out the rest of my day. Period pain, banging my gums with my toothbrush, wisdom teeth… This is why I have to stay away from getting my legs waxed, for example, or re piercing my ears like I wanted to on a whim.
When I am in pain, it isn’t the area of my body that causes me the most problem. Every time, the main problem becomes my legs. It is as if that tiny paper cut has pulled the plug on the energy supply that provides my legs with much needed strength and energy. It suddenly disappears. My legs become so weak that I am unable to lift them up onto a chair in an attempt to get the blood flowing through my body properly.
For perhaps the first time since my M.E Journey began it was pain that meant I had to cancel plans to see a friend at the weekend.
It hurts too much (pun not intended) to think about it so I won’t go into anymore detail just now, but I am once again so thankful for having the understanding and wonderful friends I have.
Disappointment doesn’t begin to cover it. Perhaps it was M.E’s way of reminding me who’s boss. I had had a lovely week (not necessarily feeling well, but certainly able to bake a cake, meet up with friends and crack on with my driving.) I had dared to celebrate my driving achievements by posting about them on Facebook and even emailing the CFS clinic with the good news. It seems I spoke too soon and, health-wise, things are unravelling at an alarming rate again. Am I on the brink of returning to the Dining Room?
I can count the times I’ve questioned what the point of carrying is, on one hand. This was one of those times. The hope and positivity, the grit and determination was suddenly vanished. It was replaced by anger, frustration, and despair and then finally a hollowness. Numbness.
And my mum seemed to be the same. “Oh Anna. It is so unfair” and then the promise that she and my dad will always, always look after me. “If this is all there is we will always look after you.”
I knew this was coming. It was long overdue. I had dared to enjoy myself and now here we are. It isn’t a full blown relapse*, ‘just’ a setback. Another one. How many times can one person go through this cycle?
So pain, for me, is much more than physical pain. It is the pain of accepting that recovery is perhaps more a state of mind than an actual physical process. I already knew that I was likely to be ‘In Recovery’ for the rest of my life; always an M.E. sufferer but just not a severe sufferer like I had been. Things had been looking so good but I made the huge mistake of believing it was real. I forget what M.E. really is. Unforgiving. Harsh. Cruel. In control.
This is a pain like no other.
*I see a relapse as a return to how things were in The Beginning; relapsing and finding oneself right back at the start line.
M.E. myself and I 