Temperature changes, a change in humidity or barometric pressure is an every day occurance. Its fact. Weather changes. The world rotates on its axis and orbits the sun. We tend to not take too much notice unless it’s a drastic change. We reach for layers in winter and something light and breezy for summer. But for people like me, this every day occurrence isn’t so simple.
The slightest change can set off a pain spiral. The sweat caused by the humidity, beading down my leg is painful. It feels like acid burning through my flesh. I can’t just hop in a pool in summer to cool off, because of the pressure of the water. For my right side, water feels like heavy sludge, crushing down on my bones. Having someone disturb the water too close to me sets everything off. I tend to stay inside more often then not, in the air conditioning. Our power bills are horrendous from having to run the air con at 18-22 degrees celsius, especially when it’s 42 in the shade.
It’s like my leg has its own thermostat. I can be cold and want to layer up, but my leg is hot. It is hotter then hot! If I put too many layers on and try to warm myself up, pain. Burning. We can’t run the heater for too long for this reason and I find it really hard to go into businesses who run their heaters high. The toasty warm feeling a normal person has that makes them comfortable, is the complete opposite for me.
But then there is the opposite. The cold burning. When my leg gets too cold and it feels like an ice brick. Have you ever fished around in the bottom of an esky or cooler full of ice that’s melted a little? That feeling on your hand? That burning sensation that forces you to pull your hand out? Imagine that, but not being able to take it out. Having to keep it in there despite that awful feeling. I can’t rub it warm. I can’t hop in the shower and run the hot water over it. I can’t put on long pants or wrap myself in a blanket. I have to wait for it to pass. I have to keep the rest of my body warm in the hope it will warm my leg up a little. Too much and the fire then rages.
It’s so hard to explain it to people sometimes. They look at me like I’m being dramatic. Like I’m one of those little old ladies who say rain is coming because their trick knee is playing up. I find it so hard to get my point across.
Mid summer bbqs outdoors are not enjoyable for me anymore. It just hurts too much. Constantly having to excuse myself to go inside and cool down. Or sitting on my own while everyone else is sitting outside enjoying themselves. All it does is stir up my anxiety. It makes me question evetything and every one. I work myself up into such a state in my head that all I want to do is fade into the shadows, and retreat back home.
If I have to go out in summer, I try to leave it as late as possible in the hope that it cools off. I am not trying to be rude when I turn down your summer party invitations. It’s just hard to enjoy yourself and focus on what is going on around you when that little bit of heat turns into hellfire. If it was an option, I would head to the north pole during summer and move in with Santa and Mrs. Claus.
Life is a little more complicated when you have to take into consideration the effect every weather change will have on you. It’s not just having to consider if it will be hot or cold, sunny or raining. It limits the places you can travel, the things you can do. It has an effect on mood. On pain. My ability to cope. It’s all about trying to do things that don’t cause me to be curled up in a ball, rocking back and forth, crying. I have things I want to do and places I want to go. Some will have to wait. Some may never happen. It’s just part of life now. No one can control mother nature. We just have to come up with ways to adapt.
#CRPS #complexregionalpainsyndrome #depression #anxiety #temperaturechanges #breakingthestigma #fireandice