It’s not going well. In fact, its going very badly.
Light exercise is good, but its very easy to do too much, which causes increased pain and increased muscle weakness.
Yesterday I moved a few large pots on my back deck and moved some large bags of potting mix (50 litre I think about 20kgs?) and filled those pots. I intended on planting some petunias or pansies or some small flowers, to brighten up my little outdoor space. The weather is getting nice, and I want a pretty corner of my cess pool of a back yard, to enjoy. A little haven, if you will.
It wasn’t hard work. I had a friend helping me. It wasn’t intense, it was a slow potter around the yard. But it did involve some heavy lifting and dragging. Not much, just a little. Four pots were dragged to a new position and four bags of potting mix were lifted from the car to the yard. About 10 metres, carrying the 50 litre bags.
The bulk of the work was planning where things would go, moving light weight things out of the way, and sweeping up some muck.
It was enjoyable, I like doing physical work. It was also more than pleasant to be outside, I’ve been flaring a lot lately, and have not been getting out into the backyard, let alone out into the world.
So it was a good day. We finished around 2pm, and that was me ‘done’ for the day.
I woke up in screaming nerve pain around 3am. My muscles (quads) ache deeply, but again, its not just normal exercise pain, this is a different kind of pain. And inside my muscles it feels like a million little stabbing needles. I tried to manage it, but ultimately got up at 3:30am and took my opioids. Its now 4:50am, and the pain has receded.
Thank the gods for opioids, they are very effective for me.
But my muscles are weak. Getting down the stairs was difficult, I sat down on my butt and scooted down. I didn’t feel safe, didn’t have the muscle control to lower myself down safely to the next step.
All doable, but not very pleasant.
And…I can’t find the word. ‘Disappointing’ doesn’t cut it. ‘Frustrating’. Its depressing, upsetting, but that’s too emotional. I’m not really ‘upset’ or ‘depressed’. What is the word? Resigned?
Maybe its more grief. I am pensive, a little melancholy. I don’t want to get bogged in emotion, or sadness, and its not really sadness. I guess its some dismay, a bit disheartened at my fragility, how easy it is to tip me over. It did not occur to me that moving a few pots would be too much for this body now. So I guess there’s some surprise, and shock in there too. Some disbelief.
But I will continue to try and walk this fragile line and find the balance point, between activity and rest. That was sometimes a challenge with RA, but I am finding CIDP to be so very much harder. I am more fragile, much weaker. Truly feeling weakness in my muscles is distressing. And knowing that what I used to do to create strength – exercise, resistance training – is not an option, infact makes things worse, leaves me feeling defeated. And confused. And unsure as to what I should be doing, what is the correct option?
Or is there none?
Am I just along for the ride this time, with a disease that does not respond to exercise?
The idea of a lifetime of couch jail is not an appealing one. With RA, even the longest, deepest, darkest flares DO remit.