Much like a bad pain day, autoimmune fatigue is hard to relate to if you’re not autoimmune. It’s like the exhaustion you feel when you’re coming down with the flu or a nasty sinus infection, but instead of subsiding after the illness is over, the fatigue is always there grinding away in the background. Before I was diagnosed, I thought I was just a lazy person who lacked the motivation to stay awake. Now I know differently. My immune system is constantly “sick”; constantly at war with the rest of my body.
A few weeks ago, I was sick – as in sick with germs – and I’m still recovering. It takes a long time to get back to normal when I catch a pathogen, so I try to avoid catching even a sniffle since I know it will be weeks before I recover. The asthma symptoms have decreased from potentially life threatening attacks to mildly annoying. I’m finally off prednisone, however, and I’m thankful for that. I still need a steroid inhaler, generic mucinex, and a rescue inhaler so I don’t wheeze while I’m at work.
Fatigue is my biggest struggle when I’m recovering. I constantly feel weak and tired. To manage the fatigue, I’ve been taking a nap every evening after work – sometimes for 3-4hrs – so I have energy do chores around the house. Since I’m moving next week, I’m running out of time to get things done.
My biggest worry about living with Jonathan and the kids full time is how they will react to living with someone who, through no fault of my own, is constantly sick and tired. I worry they will think I’m lazy on days…or weeks… I need to sleep after work to control the crushing fatigue. Growing up, my mother suffered from serious mental illness. She either slept all day and left me to fend for my brother and sister or, when awake, was horribly abusive. I don’t want Luke’s or Oliver’s memories of childhood to include me being absent from their lives, ignoring them, in bed asleep.
I do not think they are going to think those things about you. I do think they will cherish the times when you are feeling 100%.
This is a very tough way to live and sure I don’t fully understand it. I feel confident that your family will understand when you move to the new place. I know you want to be there for them and you will do the best you can under the health restrictions working against you. They will understand.