Oh yeah
I was feeling very sorry for myself tonight because I've been so low functioning for so long... I guess this is one of the worst years I've had since I got sick, though to put it in perspective it is lots better than year one "I can't get out of bed all summer" or year two "migraines for months, including that epic one that lasted three solid weeks." Not to mention the drug trials that turned me into a pain zombie. Anyhow I try not to wallow, in general, because frankly it is too easy to fall into that trap, especially when I have had to cut back on stuff. So I caught myself at a big wallow that wasn't triggered by ANYTHING specific, just... the ongoing usual... and then finally said 'uh... so how MUCH pain am I in right now? Oh. Lots.' It is amazing how unconscious I can be of something that messes with me so much. Getting it conscious helps a TON, too. Yes, brain. You do not live in a jar. Much as you would like to some days! After all of these years it is STILL counterintuitive that experiencing the pain helps me tolerate it. My reflex is still to shunt it away as hard as I can until I get cranky or depressed or sleepy or can't walk.
Anyhow, the sleep regime is still messing me up, but it's incrementally better. I got an app that times my sleep and it's useful because instead of trying to force myself to stay awake at normal hours I'm letting myself nap more after insomnia days. My sleep doctor will probably be happy to see real numbers instead of my vague brainfogged reminiscence, since I still am not using the machine during most of my daytime sleep. It still inflates me so I give myself a break from that then. It's a tradeoff between two different kinds of pain, and I seem to be able to cope with it better if I get to alternate. My replacement for the broken machine broke! The good news was that they replaced it that very same day with a newer model that is less likely to break and also that is a lot more comfortable. I still inflate but it does not give me the 'omg air BLOWING INTO MY FACE' feeling so much; it seems to be timed better to my breath or something so it's more unobtrusive and easier to get back to sleep. So... go things breaking! I would have had to wait two years for this upgrade if the old one hadn't randomly decided to start turning itself off every few minutes.
What I am doing: the bare minimum. But that's been a moving target over the years. Now that includes walking Jack and making lunch. So go me! Very grateful that we shopped ahead so I didn't have to go out shopping this weekend, though, as I was mostly a mass of sessile protoplasm, though I DID manage to give Jack his walk all on my own, albeit with a tea-and-rest break. Nice cafe let me have Jack in the outdoor area so he got to snuggle me while I had tea. Meanwhile, Brad went and helped judge the science fair, which sounded really fun. I like hearing the recaps of the experiments he got to judge. We planned a really light cooking week since he was going to be out for that, and that was a gooood idea. Yay soup-in-freezer!
Anyhow, the sleep regime is still messing me up, but it's incrementally better. I got an app that times my sleep and it's useful because instead of trying to force myself to stay awake at normal hours I'm letting myself nap more after insomnia days. My sleep doctor will probably be happy to see real numbers instead of my vague brainfogged reminiscence, since I still am not using the machine during most of my daytime sleep. It still inflates me so I give myself a break from that then. It's a tradeoff between two different kinds of pain, and I seem to be able to cope with it better if I get to alternate. My replacement for the broken machine broke! The good news was that they replaced it that very same day with a newer model that is less likely to break and also that is a lot more comfortable. I still inflate but it does not give me the 'omg air BLOWING INTO MY FACE' feeling so much; it seems to be timed better to my breath or something so it's more unobtrusive and easier to get back to sleep. So... go things breaking! I would have had to wait two years for this upgrade if the old one hadn't randomly decided to start turning itself off every few minutes.
What I am doing: the bare minimum. But that's been a moving target over the years. Now that includes walking Jack and making lunch. So go me! Very grateful that we shopped ahead so I didn't have to go out shopping this weekend, though, as I was mostly a mass of sessile protoplasm, though I DID manage to give Jack his walk all on my own, albeit with a tea-and-rest break. Nice cafe let me have Jack in the outdoor area so he got to snuggle me while I had tea. Meanwhile, Brad went and helped judge the science fair, which sounded really fun. I like hearing the recaps of the experiments he got to judge. We planned a really light cooking week since he was going to be out for that, and that was a gooood idea. Yay soup-in-freezer!