It has been a really, really long Summer. I feel ragged, like I have been forcibly jammed into this uncomfortable cart on the CRPS roller coaster for far too long. The peaks are too short and the lows are too low. It’s hard to keep moving like this, to keep rattling along the tracks, unable to see whether there are ups or downs around the bends. I barely catch a glimpse of my goals before I am careening by in my out of control carriage and they are lost to the ever-gobbling past.
The relief from my last ketamine/lignocaine infusion was a sweet crest on one of the few peaks of Summer. It was the break that kept me going, a brief respite from the seasonal torture. I was able to go for walks and visit the trees. I was able to push for strength through shorter recovery times. I was able to think and read and understand words, thoughts and emotions. I was able to appreciate it, however pain relief pays little heed to standing ovations and I soon felt myself sucked back under the humid weather.
Humidity is so much more powerful than I could have ever known in my life before chronic illness. There are so many parts of a body that can feel pain, so many pains that can be amplified by simple changes in air pressure and water in the atmosphere. Humidity can sneak inside, like a robber in the night, and cause a catastrophe of physical dysfunction before skipping away gleefully with no cops on its tail.
I watch the weather forecast with brimming tears of hope that become falling tears of fear when there is no cool change on the horizon. I anxiously await wind changes, only to discover that there is too much change and find my body respond by changing pains instead of relieving any. CRPS craves an atmospheric consistency that simply doesn’t exist.
There are so many different ways to hurt. Sometimes it’s a bittersweet relief to switch from burning edges to burning joints, to switch from stabbing to aching, from not being able to stand to not being able to hold a cup of tea. Other times, it’s just too much, too quickly, and too hard to keep up with. I try to find cause and effect between weather changes and symptoms but the lines are so blurry and the results so unwilling to behave the same way twice.
I get so tired of tallying symptoms. It’s exhausting to be unable to escape, it’s exhausting to simply keep breathing. It’s exhausting to try to explain and exhausting to feel alone in the suffering because it feels pointlessly cruel to share it. It’s exhausting to see the disappointment in others when I am not doing better. It’s exhausting to see my own queries for the universe reflected back at me like that. It’s exhausting to force myself to paint on my coping face because it’s more exhausting to feel like a victim. It’s exhausting when coping doesn’t feel powerful, but rather like desperation in disguise. It’s exhausting to have so much uncertainty boiling below my surface, amongst the pain.
The fatigue is so all consuming. It can keep me stranded in bed for much of the day, unable to be awake or asleep but just floating in a dense fog of existence and pain. There’s no fighting fatigue like that, it really doesn’t care how strong my coffee is, or that I’d like to be able to read and write, or that I’d like to go for a walk. I don’t feel like I ask for much, but the fatigue doesn’t care at all. It doesn’t care how small the requests are because it doesn’t live in our constructed human world of work and reward, of logic and reason. Fatigue makes up its own rules and I am just a puppet who dreams of escaping her strings. A very, very tired puppet.
I have to lie down now.
Love & Wishes,