ZZzzzzzz!

This weekend I was at an event. About 7 hours in, I walked past someone who made a comment about me being tireless. I decided to give a very honest response, "Actually, right now I am very tired, in significant pain, and my brain isn't working very well." He seemed quite surprised but when we needed help later, he was one of most willing to pitch in.

I learned very early that there is no honor in whining or complaining and that a non-verbal complaint can be considered annoying if expressed too often. When a job needs to be done, it is necessary to suck it up and get to work. Hiding pain or some level of exhaustion became a functional skill. 

If you look at me and know that I am in pain or if I complain, the level is probably quite high. If I mention fatigue, there is a definitive chance that my body and brain feel very sluggish.

Last week I had a lot of energy expenditure almost every day. I knew I would pay for it this week but I thought that I'd probably be fine by Tuesday or Wednesday, at the latest. 

Wednesday is definitely the best day I had all week but I still needed coffee to make it through my evening class. 24 oz of coffee at 6 PM, 1 hour of class where I was probably only active for less than half of the class, and then home to sleep - with no trouble falling asleep. If fatigue is not a factor, coffee after 2 PM will make it hard to sleep.

Sometimes I find autoimmune fatigue as frustrating as the pain. Maybe more so. 

Today was a struggle. I could feel the foggy brain when I got up. Water, coffee, water, black tea - hydration and caffeine - to get through the morning. Good friends at lunch and then back to back meetings all afternoon... grateful for some adrenaline to force me through the fog... and by 5 PM, just about ready for rest. Sleep will come early tonight.

The time it takes to recoup energy seems to be longer now than a few months back. Another sign that the disease is active.

So, if it takes me some extra time to respond to you, in person or virtually, please give me a little extra time like my friend did on Tuesday. 

He and his daughter asked for a high-five relative to something in our conversation and I am sure the pause while I processed what they wanted was quite long, but they did not rush me. "Yes. High five." 

The extra few seconds or minute to think gave me the ability to interact as a friend instead of as a sick person. That makes a big difference for mental health.