These paroxysms of electric shooting pains continued throughout the night, intermittently and always without warning. I fought emotionally to stay strong, to breathe through them and not go into a state of panic. I tried to sleep but the pain was so powerful it would jolt me awake.
By Saturday morning the pains became continuous, shooting and throbbing pains every few seconds adding up to hundreds every hour. Any movement made it worse/ unbearable, any sudden noise made it worse. Resting on my bed didn’t stop it; sitting still, watching TV, playing games on the iPad didn’t stop it. My foot and lower leg had turned permanently deep red, not unlike the colour of beetroot, my foot felt like it was burning.
Saturday evening I managed to eat some tea that John had cooked, he takes over the cooking when I am like this, he put my plate on a small table next to where I was sitting and he brought over the salt and a serviette, just like in a little cafe. Eating tea helped a bit, it was a good distraction and it also got me thinking that in my own way I was actually pushing through the pain, not by walking which would have been impossible, but by pushing through the pain in order to function. Eating, going to the bathroom etc all required a conscious continuous effort to not panic and give in to the pain. By concentrating on eating my meal despite the pain I was telling it that it was not that important, thereby hopefully contributing to calming my sympathetic nervous system.
So my body jumps a little, sometimes a lot, with each pain. My face grimaces and I groan, occasionally I do the deep breathing technique of alternative nostril breathing, it can help to stop me panicking. The pain continued all night without letting up and I became tired and exhausted.
It’s hard to explain what a pain flare is really like to other people and most of the time I don't even bother but I often wonder what people really think because I look so well I've been told and on a good day I can even look terrific apparently! Most days I make an effort to look my best as it makes me feel better about my changed life with all its complexities.
Some days my small world stops, Friday was such a day. All the things that sustain me wait. My studio is locked, blinds down, waiting. My scooter is covered and plugged in, waiting. If you are a reader with CRPS and you are experiencing a bad pain flare, we can wait together because eventually the pain flare will settle, it may be a matter of days or weeks but better days will come our way. If you are a carer/ family member take comfort that my carer is also waiting and feeling anxious, I see him watching the monster attacking me, I see his helplessness and wish things were different. So we all wait together.
November 4th is CRPS awareness day throughout the world, CRPS continues to make life hell at times and we need a cure, we need more research and more effective and accessible treatments, we need this pain to be taken seriously and be acknowledged for the impact it has on so many people.