Tender Points & Trigger Points
Tender points and trigger points on someone like me a laughable. There is no place on my body that you can poke or prod that isn’t accompanied by a pain response. Touch/pressure = pain. It may be sharp and sudden, or it may be delayed and yield a burning sensation, but in the end, pain is a part of my ability to sense things, not something I feel when pressing on a specific area.
The widespread pain is constant, it never “goes away.” I feel every muscle, joint, bone, and nerve right now because they are all in pain right now. CSS isn’t muscle pain, pain in a nerve cluster, it’s everywhere all of the time. A massage is a form of torture, a hug is something you endure, and the thought of being with a romantic partner is about as exciting as the prospect of rolling around naked on broken glass.
Everything in the house that is hard or edged might as well be a double bladed sword, because that’s what it feels like to run into them. Add on top of all of this the brain fog and lack of coordination, and suddenly your perspective of your safe and happy home becomes a cruel joke consisting of sharp shards of glass sticking out of everything and you being to wobbly to avoid them on a regular basis.
“Does it hurt here” is a pointless inquiry. “Does it hurt here more than usual” is more appropriate.
So what can one do to cope? Keep yourself busy. Even stuck in my home all day, even stuck on my futon all day, I can still manage to keep myself preoccupied with different projects. As long as I don’t commit myself to specific activities at specific times because my health is entirely unpredictable, I can enjoy these projects over the course of many years.
Granted, they are all online, like this blog, but knowing that I am doing something worthwhile with my time keeps me going, and keeping myself going is what keeps my mind off the pain. Throw in the fatigue, and every project is something that takes a great deal of will power, and maybe a little OCD and hyper-focus, to get done.
If I don’t enjoy it, it’s a chore, not a hobby. My hobbies are my escape, not just mindless busy work. They need to be challenging to keep my mind sharp, but not stressful, which yields sharp pains. It’s a fine balance maintained by insight into what my body and mind are capable of doing “today” or “right now.” I make lists of things that need to get done, like chores, and I tackle them in order of how I feel and what I think I can do at that particular moment. I may tackle a whole chore, or break it down into steps and get as many of those steps done as I can today. While out in the real world this would leave life very unpredictable, at home life is still pretty predictable, and if I don’t get everything done on the list, that’s OK, there’s always tomorrow, I did my best today.