Unlike most people "tired" is a baseline for us. We're always tired. We don't complain about that usually, because that's "normal".
We wake up tired - even if we've actually slept well - even if we've taken medication to ensure we've slept really well.
There's degrees of tired, however. Most days I can make my zombie-like way to the kitchen to fuel up on caffeine so I can actually do something with my day. Some days, I don't make it that far, I get half-way out of bed and go back for a nap.
Why is that? Well some days, right from the start, "tired" feels like I've been dragging a load five times my own weight across a desert for the last 48 hours.
However I start the day - tired just gets worse from there.
For anyone who doesn't know, these are the basic stages of "tired" in lupus.
- Simply tired. I can function, but I could do with a cup of coffee.
- Moderately tired. That coffee is getting urgent.
- Very tired. I'm struggling to stay awake. Coffee's no longer helping much.
- Extremely tired: I'm binge eating, drinking anything I can find with caffeine, and shaking, trying to get the energy to keep going when every cell of my body just wants to sleep.
- Fatigue: I'm not making sense when I talk, I keep forgetting basic things, my co-ordination's shot and I'm dropping things and falling over. I'm getting frustrated that my brain and body just aren't working any more.
- Severe fatigue: Not only are my brain and body malfunctioning, but my emotions are all over the place. I'm just going to sit down here and throw a toddler tantrum until I get my milk and bikkies, and my blankie and nap.
- Exhaustion: I'm going to sleep. I may be standing up. I may be in a meeting. I may be in a movie theatre. I may be standing in a line at the bank. I may be shopping in the supermarket. It doesn't matter. I am going to just stop here and sleep.
I can remember (vaguely) days when I was healthy, that I really didn't even get to a 1 until late afternoon. Now I can hit a 7 as I'm getting out of bed. An incredibly good day is one when I don't get past a 3. On a regular day, I'm moving back and forwards over all points from about 3 to 6.
Well, that's just fatigue. When you add pain into the mix, that's when it gets really interesting.
Hey lovely lupies, have you thought about writing your story for me? All through May, I want to feature posts about lupies sharing their story of life with lupus. I just need your photo, your name, and your story.
Full details are here: Tell Me Your Story http://www.sometimesitislupus.com/2016/01/tell-me-your-story.html (Note: if you have a lupus-related website or social media page, feel free to include the link with your story.)
I'm looking forward to hearing from you.