Good things:
-I'm doing the thing and making the phone call(s)
-I have food in the oven (stoffurs mac n cheese for the win)
-I scooped
-I got lots of Jack snuggles this morning when I went back to bed
-My new wrist brace arrived and the ice pack is in the freezer to set.
Bad things:
-Not 100% sold on the new brace. It doesn't have a support bar for the thumb and I don't know if that's going to make it less effective for me
-Probably gonna be on hold for a while
-Do NOT have the energy to go out and fax in paperwork
-I think my recent bouts of nausea are both a good and bad thing. I think that the pain med switch IS helping. I can almost tell when the morning med wears off because I notice a drastic pain increase when it does. But the flip side of that (and the cause of the nausea) is that my baseline pain levels are SIGNIFICANTLY higher than they were.
I know I've talked before that a couple of years ago Dr. D and I both came to the conclusion that not only was my neuropathy not going away, but it was likely going to continue to get worse. It was one of the reasons he was so supportive of me getting a powerchair. But then, in general (unless I really overdid it), my pain stayed at a baseline. When I did push too much, I'd end up just completely wrecked- sick to my stomach, nauseated, sour stomach, dizzy. So I have a standing rx for zofran just in case.
.
This past week I've had to take it almost every day, and more than a few times- multiple times during the day/night. Since before the snowstorm, I have noticed my pain has been a lot worse. I kept chalking it up to doing too much but the truth is- I really HAVEN'T been doing "too much."
And I don't really know what to do about it. I don't know that anything CAN be done about it. The fact of the matter is (and Dr. D has had to remind me of this on more than one occasion) pain meds (even at their most effective) will never stop the root cause of my pain. For me, best case scenario is that it stops me from noticing the pain my body is in to a degree so that I can ration my energy and activities and give myself some kind of life AROUND recovery times..But my neuropathy isn't fixable. It's not like... an anti-depressant which can actually HELP your brain with serotonin uptake. It doesn't have a real functional power over what's happening in my body. So the pain meds dull my awareness, but they don't keep my actual body from experiencing the pain and stress of the neuropathy itself.
At some point, (hopefully far far in the future) there will be a point when I have to choose .. pain management over driving. Independence over side-effects from pain meds. These are not choices I'm looking forward to.
To be honest, quarantine during the pandemic has been, in a small sense, practice for this. For the time when I will have to be much stingier with my activities and energy. It's one of the reasons I really really want to get back to getting the house totally in order. The better shape everything is HERE the easier it will be for me to a)just exist here, and b)manage regular chores during recovery periods when I DO choose to overexert.
I started typing this all out on facebook but frankly, I don’t want people there to know how bad it’s really getting already. I mean, some folks KNOW, but i haven’t laid it out quite this... explicitly for my loved ones to just... see and read.
I have really distinct plans to get the house up to speed- and I’ll have a little bit of $ from dad’s estate to do stuff which will help a lot. I need to get threshold ramps in the house, and a ramp from the driveway to the porch. I need to finish sorting, storing, organizing and putting KW’s stuff in the garage so that what’s in the HOUSE is all mine and stuff I need/want/use.
I want to have a ramp put in the garage up the steps to the kitchen/utility room. Once KW HAS eventually gotten all her things- I’d like to turn the garage into my art/crafting space AND move the daybed in there for additional guest sleeping too. It’s big enough I think that I could have a VERY SMALL studio portrait space, a crafting area, and the daybed, etc. When the weather is nice, and with a ramp for access, I could sit out there in my wheelchair and craft or paint or take photos.
Shifting my art/crafting/beading stuff to the garage will free up a LOT of various random spaces in the house too. Which will let me better organize what’s in it. The reno we did a few years ago means the kitchen and big bathroom are essentially accessible for me in my chair NOW (if the kitchen was.. um... clean), and i have a space to add a dishwasher if I end up needing one. One thing I definitely plan to get with estate money is a new washer dryer. I even found an ada compliant set at lowes!
Basically, I haven’t told anyone in my real-life yet, but I’ve been working on a list of things that need to get done in order for me to continue living alone once things really do take a turn. I think CityDad would probably fly out and stay with me for a couple weeks if I asked him to- he’d be able to help me build out and shift the garage into a more useable space once it’s empty, (this project is not going to happen even within a year...even if I had everything for KW totally packed up, I have no idea when she’ll actually sit down to go through stuff and either take it/trash it or donate it.)
But it’s been on my mind a lot as I’ve noticed this pain increase. What do I NEED on my worst days now- so that when those days are my baseline I can make my life as simple as possible and maintain as much independence as possible.
I don’t know. And it’s not like it HAS to be said somewhere, I just... I needed this all out of my brain for a minute. I needed to scream it into the void without upsetting my loved ones about the decline.
For now, I’m just... doing the best I can, day to day. And making sure my zofran refills keep getting approved.
