I had one pretty great day on Saturday. I had energy, some surprise reduced pain, and I took full advantage of it. There was no guarantee the great day would even last a full day, let alone any longer. So I did everything I could do. I still needed a nap, of course, and I still needed my cane in the evening, I had to sit on my wheelchair cushion, I still suffered a brutal migraine, and I still had a multitude of limitations, but it was still one of the best health days I had had in a while.
The following day was a rest day... but not a full crash day. The migraines are really wearing me down, but I was still functional.
Last night we had tickets to a show. Before the show I was feeling awful and completely knocked out from the medication that helps these insane migraines. I slept the entire day so that I could be okay going to this stunning dance performance.
As Rj was pushing me in the wheelchair, with me in a pretty white dress, sitting on an extra gel cushion on top of my wheelchair cushion, and I thought: what a stark contrast from Saturday afternoon to Monday night.
(See, it still surprises me how big of a rollercoaster chronic illness can be).
Luckily though, even though I expected a Crash Day yesterday, it came today instead. I say 'luckily' because I had nothing I really needed to do today. I could uncomfortably stay in bed (or the bathroom) all day if I needed to. And oh boy has today EVER been a crash day.
(You know on HGTV when everyone yells "Demo Day" because it's fun and exciting and they get to wield sledgehammers? That's how I yell "Crash Day" to try and trick my brain into thinking it's a *good* thing.)
The pain, the burning pain, the acid-pooling, the cramping, the migraine, the exhaustion, the weakness, the incontinence, the general flare-up of ALL symptoms - it just hits you like a train. Unstoppable. All-at-once. You can feel everything. You can't do anything about it.
All I can do is ride out this crash day.
So even though my hair is super oily, I cannot risk having a bath lest an accident occur, I do not have the strength or the energy to have a shower (even seated). I cannot stand up straight because of intestinal pain and cramping. I cannot be more than a few steps away from the washroom (for obvious reasons).
What I can do is rest.
Spend the entire day allowing my body to recharge. Using my bed as a charging station so that I can actually function at maybe 20-30% for the remainder of the week.
It is amazing though.
If you saw me on Saturday, you may have thought I was faking yesterday. If you saw me today, you would think Saturday was impossible. But that is the very nature of these diseases. It is what makes it so very difficult to understand.