There are different levels of terrible when it comes to my nights. The best case scenarios are the nights when I just sleep badly, kind of like I have my whole life: I wake up easily, I don’t sleep very many hours, I’m tossy turny…

Then there are the nights that are like those described here: nightmares, pain, what feels like mental torture… Those are godawful, of course, but it’s because my body and my brain are doing horrific things, as opposed to feeling like I am infected with a deadly bug. The infected-by-a-deadly-bug nights ~ the ones I call my “malarial episodes” ~ those are the worst, the most indescribable. Those were the nights I thought might kill me, that went on for 6 months, which I described in my diary excerpt here. They made me feel like I was close to death all night and then clawing my way back to life throughout the day, only to have to do it all over again.

In between those last two, are nights like last night. A mini-malaria. When you add drenching sweats to my night, it changes everything. ANY version of insomnia/cramps/nightmares/thrashing etc. is better than that coupled with the sweats. The night sweats I get are sickly. I’m not just sweating, I am shaking and my head feels swollen with red-hot infection. There is sweat behind my ears and behind my knees and running down my chest and dripping down my back and pooling in the low points of my face. I wake up trembling, cold, and scared. Last night, it didn’t last as long as the earlier days ~ I wasn’t incapacitated by cold bone-chills first and it wasn’t as scary ~ that’s why it gets a category all its own.

But, I had a revelation last night. Here’s what I want you to know about my night sweats: they have absolutely no bearing on how hot or cold the room is, whether I’m wearing clothes or not, and whether I’m covered with a duvet and blankets or just a sheet. I tested those options within the first few months of my sickness. We turned the heater on or left the windows cracked. We bought dust mite covers for the mattresses and pillows and duvet. We bought a new allergy-helping duvet and pillow and sheet, an air purifier, a humidity-checker device, we kicked the dogs off the bed and made sure to lift the blinds and air out the room so condensation and mold couldn’t grow ~ but not before 10am, so external allergens wouldn’t be at their highest levels. Blah blah blah.

The important fact was that I had never, ever in my life experienced night sweats until that night that I had gotten sick while writing Christmas cards. I got a very high fever in my teens ~ my mother could tell you if I was drenched in sweat, but I don’t remember it. As a child I remember sleeping on some hay (don’t know where I was), but I always remembered that night because I woke up hotter than I’d ever felt in my life. I was worried that the hay might start to smolder. That was the hottest I had felt while sleeping until this year. And I always joked that I don’t sweat. “I can sit in a sauna and not sweat”, I’d say, so this was a very abnormal thing to happen and it came on very suddenly.

Over the months, I had theories about the sweats and I was positive I was right every time. The doctors ruled out cancer and peri-menopause and all the typically things that cause unexplained sweats. At first I thought I was having a reaction to fatty and/or spicy food. I had one of the worst malarial-type episodes after eating a habenero enchilada and another time after eating fried chicken and macaroni and cheese and another time after a Christmas party at a steak house. I was sure I was right. I stopped eating dairy, gluten, high-fat foods. I wasn’t right. Then I was positive it was the birth control pill. I had been on it continuously for a year and it was Yaz ~ a pill that has had some pretty serious side effects with people (as an aside, my body felt great on it). So, I quit taking the pill for two months and nothing changed. However, when I took my opiate painkiller during my period, my sweats were much worse, so I decided they were caused by the painkiller. I went back on the birth control pill and stopped taking the painkiller. I was wrong. The sweats didn’t stop and I’ve been in pain ever since. Then I 100% believed it was my bowels. I knew, with no doubt, that the sweats happened when I was having bowel pressure of some kind in the night. But, through the last month of IBS awfulness from the new diet and supplements, I had no night sweats. And there was quite a bit of constipation pressure, let me tell you. So, I thought it must be anxiety. I must be having panic attacks in the night. The sweats stopped for the most part when I left work, so I thought this proved it. They came back for a few days when my best friend was coming to visit from Ireland, so I thought that doubly-proved it. However, there have been key times when it didn’t happen ~ when I was a big ball of fear and worry and I didn’t have the sweats. And there have been times when I’m feeling pretty good and positive and they did happen.

Which brings me to last night and my revelation. I’m not sure why it took me this long to see it. The sweats happen when I overexert myself. Evil, evil M.E. I left the house at noon yesterday and I didn’t get back until 6pm, which never happens ~ I’m usually far too careful. And I threw the ball for my dog at the park and I was thinking, “watch out with this activity, girl”, but I wanted to push myself a little and see what would happen. Today, my throwing arm is killing me and my back and my neck… it all hurts and aches. My headache will. not. go. away. But the sweats came, too. And I just realised I didn’t meditate yesterday. I don’t think I have missed meditation more than once or twice in 4 months.

So, not only does overdoing it cause the extreme muscle pain and aches the next day and make me couched, but it causes the sweats? I have to look back through my notes and see if this theory holds up. It is understandable that the sweats didn’t stop until after I left my job because my job was the overexertion. Then, I got a handle on what I could do or not do and the sweats subsided. So, I guess, I just can’t push myself? Then how do I know my limits? How do I get better? This morning, it hurts to move my eyes. Literally. It feels like I strained the muscles that hold my eyeballs and, when I chew, it is painful in my temples. Oh, and my chest is tight this morning and it hasn’t been in weeks. I just said to my husband yesterday: the only good change is no tight chest this month.

My sports medicine doctor, with whom I met to discuss my muscles, wants me to try Lyrica and Ambien. I don’t know anymore. I just don’t know.