I live in Western New York State. Near Buffalo. We are in the “snow corridor” along I-90. This past February, we went 30 days straight without hitting temperatures above freezing. 30 days! Everywhere we went, things were frozen. Things that shouldn’t have been frozen. There was so much ice and snow that buildings collapsed. Even I started to freeze. And I thought I would never recover.
You see, part of being Autoimmune, for me, is having absolutely no control over my body temperature. It’s actually called dysautonomia and it literally means my autonomic nervous system is broken. My body doesn’t always recognize when it needs to push a temperature change because my immune system has a mind of its own. So I will spike a sudden fever for no reason or be the oddball sitting in the sun at a ballgame with a jacket and a blanket wrapped around me or I will overreact to hot and cold because my body won’t turn on the systems to counteract them.
This makes it hard to be out and about on any given day. Or at least be out and about in a normal way. With Sjogren’s, I cannot be in the sun. I get overheated and I rash out. So I need to have a “wrap” with me all the time. And I have many. In the beginning all I had was a large white cut of cotton-gauze. I wore it while driving to keep the sun off my arms and my chest. But wrapped up like that, I looked like a mummy driving around at the wrong time of year. I got stares. Really strange stares. And I started to look for alternatives to wrapping myself in gauze. I found scarves that were big enough and sheer enough to allow the air to get to me and still keep the sun off. But my sensitivity now extends to my face so I wear my scarves over my head to protect myself. I still get stares. Hopefully, some of them could be staring at my gorgeous wrap!
So I use scarves to keep myself from rashing and to keep myself cool. But when the internal thermometer crashes, it’s chaos. I can go shopping for the insane total of 10 minutes and will end up at the register sweating like I’ve run a marathon wondering if I look normal or if I am as red as my burning face feels. That will probably be the end of my day.
I used to spend my summers watching my boys play baseball sitting with my wrap under an umbrella knowing that some thought I was overreacting to the “sunlight/cancer” research. My body would sweat but I never felt any cooler. Sometimes it was just too hot so I sat in the air conditioned car parked dangerously close to the ballfield but where I could see my kids through the windshield.
I know what people think too. I am overweight. It will be assumed that my problem is that I am out of shape. That I am lazy and self indulgent. I am a heavy, sweaty, red-faced woman trying to catch my breath and chugging bottled water on a bench in Anymall USA. I will never be seen as ill. No one will see “sjogren’s” or “Fibromyalgia” or “Lupus” or any of the 300+ Autoimmune diseases that exist and are yet invisible.So back to This past February. With 30 days below freezing. In a body that doesn’t react like a normal human body. My favorite chair is set up by the front window so I can watch birds. But I also had three of my heavy furry blankets on it. And I had a fan on the table next to it. ‘Cuz ya’ know, it’s totally freezing outside and I’m sweating bullets. Again. Does my face look red to you?