I was going to start this by saying “Last night I had a burst of energy as I was doing my basic night kitchen work, ie loading the dishwasher and washing the non-dishwasher dishes and shining the sink,” but as is seemingly always the case when I try to describe attributes/sensations of these diseases of mine, energy isn’t the quite right word. So:
Last night as I finished doing the dishwasher, I set my hand on the counter to steady myself from yet another imbalance of the jelly legs and, when it felt like I lost a layer of skin peeling my hand from the invisible sticky mess that was there left by “”I didn’t do it” or “it wasn’t me,” I had the desire to really clean the counters and stove top. Every now and then I can convert the desire into accomplishing something more physical. Whether it was some slight improvement or the Starbucks 2x caffeine coffee I had earlier or a combination I got it done and it felt good.
I went to put clean towels into the NO MOM LAND, aka the boys’ bathroom (go ahead laugh, true but funny but I have to say lately they really are doing better in there, good boys haha) and saw that apparently a car mechanic has washed hands or something in the sink. And counter. And backsplash. And all the way to the top of the toilet tank. . Oh—and no car mechanic was in the house so I don’t know what it was and don’t want to...but I digress. With the mind over matter action still happening I cleaned up in there as well.
That’s it. That’s all the real extra I did! Wait not true, I did go to the store to pick up a prescription and a couple items and didn’t use a Beep-Beep (my fancy word for the motorized scooters), I walked because I felt ok enough to just walk!
Those were my extras for yesterday. I woke up around 4am to spasms in my left hip flexor shooting through the leg, making my leg stiff and in agony; I didn’t want to take anything and didn’t want to really move so I turned up the temp on my heated blanket, did some deep breathing and fell back asleep.
My alarm went off at 5:45, left hip and leg still hurting but what-are-ya-gonna-do, time to get up. I opened my eyes, turned my head and was met with that achy head pain that has become an immediate red flag that a flare may be coming. I went to turn off my alarm and my arm felt like the mysterious mechanic who infiltrated the bathroom must have tied bricks to it, and the other arm. Red flag alert two. I got out of bed, started to walk and upon finding that jelly legs had also been weighted down, I angrily recognized red flag alert three.
I couldn’t find the humor after that. I’m just going to say it, and I don’t like to say it “out loud” but I’m going to anyway:
IT’S NOT FAIR!
I quietly mumbled an angry storm of cursing while still in my room, took some breaths and hobbled my way to the kitchen and coffee, thankful I cleaned the sticky mess on the counter last as my legs started to give out I almost the same spot as last night, but worse and I threw my both hands onto said counter and stove top to keep from falling.
I’m not sad, I’m just so angry! I like angry better than sad so there’s a positive I suppose. I feel that anger is more of a concrete emotion that I can “put a finger on,” feel it, find a healthy way to express it and get it out!
I don’t think I’m headed into a full on flare, no nausea and the head pain has subsided a bit. I’ll take it easy today, I’ll take the advice I’d compassionately give anyone else to rest and recoup but I won’t take it eagerly.
I don’t know how to accept the terms and conditions of the diseases I have; I don't want to accept them! I do realize however that I have to at least acknowledge the limits and allow for recovery, like it or not, and for this morning writing about it was what I felt needed to be done. And yeah yeah, I’ll mostly be sitting yarn-arting or sleeping today, self care and all that rubbish, no worries, no lectures needed, I promise.