Just found the MS Society of the UK's site, this morning. I felt that it offered a lot of open-minded compassion, more so than the US society's site suggests (I make no statements about the organizations, just my impressions via the web sites). Most interesting was their note, on the "disease-modifying drugs" information page, that research to date shows that those drugs have no benefit for primary progressive MS, the type we now think that I may have.
So, my initial decision to stay off the drugs may very well have been precisely the right one: as a "progressive" patient, they wouldn't have helped me at all. All that expense and all those side effects would have been for nothing.
I only take a Colbertian-raised-eyebrow's worth of satisfaction at that thought. Hard to be smug about having a more inconvenient version of the disease, especially given my current motor challenges. And besides, as Aslan said in The Voyage of the Dawn Treader, "No one is ever told what might have been."
In other news... I'm having a very non-fulfilling relationship with manifestation, right now. I seem to summon the "oomph" only to do very shallow things. Necessary sometimes, so getting them done can be convenient, but the big things I used to do without thinking, they just ain't happening. I started a big piece last week, I did some hugely important "figuring out" work, solving some crucial-to-the-work's-success problems, but creativity? Not there. Resolve to bite the bullet and press through the difficulty and just do my best? Not there.
I don't "want to just sit in my chair and read." I don't "want to just sit and watch TV/Movies/YouTube/whatever." I do not even a tiny bit crave passive sensory input above constructive creative engagement. I just... don't want to do anything. Anything.
Maybe I'll make some Japanese soup for dinner, we just bought a couple of pots specifically for dobin mushi, a favorite of ours and it's the right time of year for the right kind of mushrooms, so now is the best time to do it. Maybe I'll make some herb oil. But that's about all I want to do today, even if it does entail a lot of standing during the cooking process.
I need to practice my presentation for next week's big magic convention, it's on the edge of "really good." if I can, I need to create a handout. That, at least, I can do from my comfy chair.
I've been in this same state of self-sustaining depletion ever since The Diagnosis. And I'm damned sick of it.
My doctor says, it's indicative of the need to make a fundamental change. What needs changing? Of course, we don't know that. We never do. Nobody does.
He made some suggestions of some roads to consider traveling, some avenues to investigate. Of course, that does take energy, which I don't have much of.
If I wasn't constantly tapped out, I'd have the energy to do that. Of course, if I had the energy, I wouldn't be tapped out and thus wouldn't need to do it. The very thing I need to cure keeps me from finding a cure.
As with much about MS's dark humor... you just can't write this stuff.