It has been a very flarey week. Just when I start to recover and function after the weather changes, it decides to change again. I know, I know, I live in Melbourne, which is famous for its four seasons in one day tricks.
Whenever I explain to somebody how much the weather influences my pain and symptoms, I am told that I should move to somewhere with a more stable climate. These are not ill intentioned suggestions, it’s simply that people like to solve problems and when the problem is weather, the first solution is moving. I have heard this from more people than I can even remember, both loved ones and strangers. Relocation destination ideas have ranged from Queensland, to Tasmania, to Perth and all the way over to Canada.
Unfortunately, relocation is not currently an option for me. I require a lot of help and that means that I need to be close to family. I have finally found a wonderful pain specialist who is helping me to improve my quality of life using ketamine infusions. People literally search the world for the right specialist to help their complicated medical conditions, so when one is found it’s a good idea to hold on to them. I also have very little money and from the looks of the new Australian budget plans, I’m going to have even less. Relocating is expensive and just not a feasible option at this time.
If a rich person happens to want to fund my move to a place where the sea air is rich and the clouds are few and also fund my flights back for medical treatment then sure, I’ll move. Come at me, mysterious rich people.
Until then, I’m stuck here in Melbourne, where the weather comes in beautiful and sudden waves that bash me around like dislodged seaweed.
How does weather affect me? Let me count the ways…all of them. All the weather changes, all the CRPS symptoms. It’s all of them.
Heat sets me alight with burning from my bones right through to the place that my skin stops being my skin and the air around me begins. Sometimes, the burning is explosive, like fireworks or nuclear missiles. Sometimes, it’s more tingly, like an itch that I just can’t scratch. Usually, it feels like I’m covered with the sort of sensitive skin that you might find under the fluid of a blister that you happened to pop and pick at. Sometimes the burning is concentrated in specific areas, usually it’s everywhere or on its way to everywhere.
The cold sinks into my joints like it’s been directly injected. It’s an aching like no other. A chill that I can’t warm up, can’t escape. When I do start to get warm, my body overreacts and suddenly I am sweating, burning and freezing at the same time. I feel as though I’m aware of every joint in my body and that they are all made of razor wire instead of cartilage.
Humidity causes my body to puff up as though it’s preparing to float away. Anywhere that can inflame, will inflame and that’s basically most of the wheres in the body. The inflammation burns and aches and cannot stand the lightest touch and gets upset about clothing and movement and is basically just a whiny jerk.
These probably sound like rather severe reactions, however there doesn’t need to be a severe weather change to set them off. The slightest difference can do it, the slightest changes in air pressure and those other atmospheric things that happen when the weather changes that I don’t fully understand.
Along with the different types of pain that I have to navigate my life around, there are some fun extra challenges that come with a malfunctioning nervous system.
Any of the weather related flares described above also bring increased, sometimes crippling fatigue. You know, can’t physically pull myself up from the floor fatigue. It’s not even relaxing, like fatigue should be, because many of my muscles tense in reaction to pain, or twitch, or spasm, or have me rolling around because I can’t get up and I can’t stay still.
Then there’s the symptom that child-me would have simply referred to as being “unco”. Signals in my nervous system aren’t all getting to where they need to go. Some of them need to go to Hell and instead they just keep bouncing around my neurons, but some of them need to go to parts of my body that I’m trying to move and they just…don’t…quite…get…through…and then I bump into the doorway instead of walking through it. Or, I drop the glass instead of placing it on the bench. Or, I whack my arm on the wall instead of just grabbing some toilet paper like a regular person. You see, there’s really no better way to describe this than unco, except maybe unco to the max.
Always, CRPS flares bring the painbrain. Spellcheck tells me that painbrain isn’t a word, but I assure you, it’s a very real thing. Brains are ridiculously special and powerful and a little bit magical, but they still can’t do everything at once. CRPS means that my nervous system gets flooded with signals and my dear, sweet brain simply can’t interpret them all at the same time. However, that doesn’t stop it from trying and the result is a disconnectedness between thoughts, gaps that don’t belong and strange black holes that swallow the word that I was going to say and spit out something irrelevant like “capybara” instead.
Not that capybaras are irrelevant, they’re basically as magical as unicorns and llamas, it’s just not helpful to say “capybara” when you actually mean “carrot”, or “vacuum”, or “please can you make me a cup of tea”.
There are plenty of frustrating things about living with CRPS, however, not being able to control the weather is very high on the list. I am the sky’s puppet, whether I like it or not. I can’t fight the sun, or the moon, or the air. I can’t scare the clouds off by barking madly like my fluffy dog has tried to teach me to do. All I can do is manage my symptoms and try to minimise the flares by being the strongest version of me that I can be.
That’s the whole point of me writing today at all, because the strongest version of me can do something, even just a little thing, to keep herself sane while the warm winds cause havoc in her body. She can explain some symptoms to you and maybe you relate, or now understand her a little bit better. She can type for a while, even though it burns and she can find a sense of accomplishment in having written something today, even though she’s not sure it’s made sense until the tenth re-read beams some sort of clarity through the fog of painbrain.
The strongest version of me can’t push through anything, she’s not Supergirl, but she can push through this particular obstacle on this particular day.
And I’m proud of me for that.
Love & Gritted teeth,