Just in a moment it began….it started as a little bit of pressure, a little nerve fire above my forehead… then it came, a rush of pain, a hot, fast moving spiral of extreme pain, rolling around in my head, then the build up of nausea, don’t move, please don’t throw up…..having a fused neck from C4-C7, the last thing you want to do is throw up…Sitting as still as I can, I waited…..not moving, almost screaming…..but who would hear me, no one is here……still waiting for the pain to subside, can I drive? No, it will pass. Slowly the swirling of pain is slowing down, almost stopping, until it haunts, right in the back of my head……right where the atrophy is sitting on my cerebellum….. I look at the clock, although it seemed as if hours had passed, only minutes until I am back to my normal, my normal….
Being called a liar is not nice, especially when you’re being totally honest, and that’s a scenario that is too often experienced by people living with invisible illnesses such as arthritis and complex regional pain syndrome, or CRPS. Their pain is not visually apparent, so when they park in disabled spaces or complain about feeling unwell, they can frequently be treated with derision from others who have no idea what that person is going through.
Fifteen years ago, lupus patient Christine Miserandino felt that words were insufficient to adequately communicate to able-bodied people what it is like to struggle daily with chronic illness. Instead, she used 12 spoons in a café as a metaphor for her daily energy stores and gave the spoons to her friend, taking one back every time an activity like taking a shower or getting dressed was mentioned. The message gradually got through to Christine’s friend, who was shocked by the revelations of the experiment.
Strategic spoon management is crucial for people living with chronic pain and illness, but they can utilize a few tactics to make their condition easier to bear. For instance, they might batch-cook on a day off so that there are readymade meals waiting for them on hectic days where cooking could present a struggle. Also, it helps to keep a stock of food close to your bed for days when the pain is at its worst; at least this means you won’t need to get up to eat if there is nobody else around.
This infographic featured below from CRPS/RSD awareness charity Burning Nights explains the now-ubiquitous Spoon Theory in further detail and offers some advice on how to manage chronic pain effectively from CRPS patients living the fight each day.
Courtesy: Burning Nights