Filed under: Uncategorized | Tags: AIA, arthritis, ataxia, balance, blogging, Covid-19, economics, fasciculation, genetics, health, introvert, jim downey, Lake of the Ozarks, Machado-Joseph Disease, medicine, MJD, neurology, neuromuscular disease, pain, pandemic, peripheral neuropathy, restless leg syndrome, RLS, SCA3, science, self care, sleep, society, spinocerebellar ataxia type 3, vertigo, Wikipedia
Yesterday I spent the most I’ve ever spent on a glass of water. And I couldn’t be happier about it.
See, my wife had a business function at a conference center at the Lake of the Ozarks. She’s retired, but still somewhat active with the AIA in a volunteer/mentor capacity. We drove down, checked into the hotel, dropped off our bags, and changed to go to a reception we thought also included dinner, awards presentations, and a full evening. I had a glass of water to take my routine evening meds, and we went off in search of the reception.
All went fine, but it quickly became clear that our expectations for the evening were somewhat at odds with what was actually planned. This was the first time this particular event was being held post-Covid, and contrary to the pre-pandemic routine (we’ve attended a number of these events), there was just a reception and brief awards ceremony. It was good that we were there, since my wife is a previous recipient of the same big award, and she was happy to support the new recipients. It was also important for her to be recognized for her past work on behalf of the profession.
But it was all over by 7:00 PM.
Now, since it was just an informal reception, we’d all be standing around chatting (and then listening to the presentations) for a couple of hours. A couple of hours during which some of my MJD symptoms made it abundantly clear just how much had changed for me since the last time I’d attended such a function (pre-Covid). I wasn’t miserable, but I was painfully aware of just how fragile I was feeling (as noted recently). Just being around people was work — even moreso than my usual introvert reaction to such events.
So, as we walked back to the room from the reception, we talked about just checking out and heading home. In just 90 minutes we’d be back in our refuge, I could sleep in my own bed and get back to my usual routine. It meant forfeiting the room cost, though.
I decided it was worth it. One of the lessons I’ve learned in my life is that sometimes you just have to write off the sunk costs of a decision, and get on with things.
So we changed again in the room, gathered up our things, and left. Got home safe & sound, played with the cats, crashed. I slept well (which I never do at a hotel), and this morning was able to get in my usual sunrise walk and exercise routine.
This wasn’t entirely due to MJD, of course. Partially it was due to the weird almost-over-but-not-really pandemic reality we’re still adjusting to. My ‘extrovert batteries’ aren’t what they once were, due to lack of use. And there was a breakdown in communications as to what was happening, so our expectations were at odds with what actually happened. Had we known that the event was going to be over so quickly, we would just have planned all along to return home after it was over.
But I do have to say that the changes I have experienced due to MJD were a major factor. None of my symptoms were noticeable to anyone else, and we didn’t discuss it with anyone. Yet I felt it, and it took a toll.
Lesson learned, and adjustments made.
Jim Downey
Filed under: Connections, Failure, Feedback, General Musings, Health, Machado-Joseph, Predictions, Preparedness | Tags: arthritis, ataxia, balance, blogging, genetics, health, jim downey, Machado-Joseph Disease, MJD, neurology, neuromuscular disease, pain, peripheral neuropathy, self care, spinocerebellar ataxia type 3, vertigo, Wikipedia
As I’ve mentioned, I’m in a long-term project to repair and repaint our 1883 historic home. Most days I put in several hours of work on it, according to what my symptoms allow.
The pic above was from yesterday, just as I was getting to work on painting the ceiling of our large carport. The six-foot stepladder is sufficient for this chore, though not ideal — I need to hold onto the roller pan or paint bucket while I work above my head. Well, just as I was getting started, I went up the ladder … and promptly dropped the roller pan. It just slipped out of my hand.
Now, like everyone, I’m occasionally clumsy. Always have been. And I’ve made bigger messes than that shown.
But in the past, my clumsiness has always been related to some other factor. I was distracted. Or I was doing something I knew was marginally safe/balanced. I’d drank too much. I had a migraine. I hadn’t slept. Et cetera.
Not this time. I felt fine. I’d had a good morning, getting in my walk and exercises. I’d had breakfast, and was sufficiently caffeinated. I’d set up everything properly to paint, and the ladder was stable. There were no unusual or unpredictable factors at play.
Except MJD.
And that was enough. My hand … just let go.
As I picked up the roller and tray, and cleaned up the mess, I was pissed off. And feeling very, very fragile. It was a rude reminder that I have a disease I can’t control. All I can do is manage the symptoms to the best of my ability.
In the end, it was just an hour or so delay before I got to painting. And a lesson in not taking things for granted I have always taken for granted.
Jim Downey
Filed under: Brave New World, Connections, General Musings, Health, Machado-Joseph, Predictions, Preparedness, Science, Society, Survival | Tags: arthritis, ataxia, balance, blogging, cannabis, codeine, dystonia, genetics, health, jim downey, Machado-Joseph Disease, marijuana, medicine, MJD, MMJ, neurology, neuromuscular disease, pain, peripheral neuropathy, restless leg syndrome, RLS, SCA3, science, self care, spinocerebellar ataxia type 3, Tramadol, Tylenol 3, vertigo, Wikipedia
This morning I picked up my monthly meds. Basically, the same set I have been taking for almost a decade.
And as I was going through and organizing things, I realized something interesting: I’m taking *way* less of my opioids (Tramadol and Tylenol #3) now, thanks to my Medical Marijuana.
The growing MJD symptoms had started cutting into my small reserve of the opioids which had been more or less stable for years. I mentioned this in one of my first posts about MJD:
But of course, being aware of — even moreso paying attention to — more pain is, well, painful. Distracting. Annoying. So in terms of my perception, my ambient pain levels have gone up significantly in the last few weeks. I noticed recently that my use of my prescription pain meds (Tramadol, Tylenol 3 with codeine) that I’ve been on for about a decade for an intercostal tear has ticked up recently. Now, that happens, particularly when I am doing some strenuous exercise/project. There’s a sort-of natural ebb & flow to it through the year, with some months being a little higher usage, some being a little lower usage. But since we finished installing a new stamped copper ceiling in the kitchen, I haven’t been engaged in anything very physically demanding. That was six weeks ago, and I should have reverted to something closer to baseline. I haven’t.
By the time I got my MMJ card two months ago, I had pretty much used up the small reserve I had. That was a little nervous-making, since I really didn’t want to increase either the power or amount of opioids I took.
Well, in just two months of having access to MMJ, and about a month of understanding how I can best use it for my needs, things have changed. A lot. Like, I’m now taking half the amount of opioids I was (same for alcohol intake). In this short time I have already replenished my reserve. I could probably cut that further, but I’m still just using the MMJ products in the evening (very mild dosages) and overnight (mild dosages).
This disease, and the version I have, is progressive. With luck, however, I should be able to manage the symptoms, and particularly the annoying pain issues, without increasing my intake of opioids for a while. We’ll see — it’s all about learning how to manage things.
Jim Downey
Communion Of Dreams 