I started an impromptu DBS programming period last week.
I usually plan programming periods for weeks and know exactly when and how long they’re going to be, but this time my body was driving me insane. It was noticeably bad to some of the people who know me best, so I decided to take the principles of programming my body that I’ve learned over the last few years and modify them so I could do it impromptu.
To say I currently feel like I’ve been hit by a train is the understatement of the century. I have no idea how I’m functioning right now.
This isn’t necessarily a surprise. My body always takes programming adjustments as an opportunity to ignore all the rules of life and do absolutely fucking nothing. I’ve learned that doing too much or not being in the most controlled environment while adjusting usually doesn’t end well.
Adjustments to my DBS programming basically feel like having a really bad flu for an unspecified amount of time. I feel like absolute death and can experience any and all symptoms at any given point during the adjustment period. It’s a great time!
Until last year, I’d even opt to be admitted to hospital when I felt like I needed an adjustment. Admittedly, though, I usually needed adjustments to more than just the amplitude for the first two years of this journey.
Then, about this time last year, I needed an adjustment again. I really didn’t want to go to hospital, so I effectively shut down my life, sat in my apartment for two weeks and adjusted. I’d finally found a base point that worked, and I knew it was just about finding a higher amplitude that would mitigate the symptoms that were creeping back.
This time, I’ve done no preparation. None of my work is done. I haven’t locked myself in my apartment. I’m still doing most things. I have no plan besides making adjustments every week or so until I feel better.
My body chose the worst possible time to let my symptoms slide back. I’ve just changed the structure of my supports, and I have three new people on the team who have known me for three weeks at most.
But my body needed an adjustment, and I was feeling pretty ordinary by this point. There was no obvious period in the foreseeable future where I could shut everything down for a couple of weeks, and I wasn’t willing to keep putting up with my body until one magically appeared.
So I basically decided to do it on the fly.
After three years of programming, I knew which rules I needed to protect, what I could probably bend and what my body needed to give an adjustment the best chance of working.
The non-negotiable rule is to never do too much. If I can avoid doing something, I will.
Because this programming period is so impromptu, I’m still working through it. My business unfortunately doesn’t run itself, and I still need to write and publish content every week.
I’m kind of doing the bare minimum my Substack requires. I’m writing an article every week, no matter how it comes together. Anything too long or difficult gets pushed to later. I’m on Notes as much as my body and brain allow, which will hopefully help grow my publication in a less intensive way.
The goal this time isn’t to stop doing everything; it’s just to heavily limit what’s taking up my time and energy. I’ve got even fewer spoons than I usually do, and I’m tired very easily.
While I was “planning” this adjustment period, I’d planned to increase my stimulation by the smallest possible step each fortnight. I knew that if this particular experiment was going to work, I needed to minimise the impact of any adverse reactions as much as possible.
What looks like a tiny adjustment on a screen, though, usually isn’t tiny to experience in my body. My body happens to not like programming very much, which is very fun.
It took me over two years and three separate hospital admissions for programming to even find a baseline program that I’m happy with. My dystonia is so complex that we had to try all kinds of unconventional programming methods before finally finding something that worked. Even now that we have that baseline, my body still doesn’t know how to handle the smallest adjustment without going into overdrive.
I’m also not able to physically make the adjustments myself, so I rely on another person to change the programming for me.
When we made the first adjustment this time, I’d planned to increase the stimulation by 0.05. That was the whole point of this experiment: tiny adjustments, plenty of time between them and as little disruption to my life as possible.
Then we looked at 0.05 and decided it was probably too small to bother with.
“Do you want to do 0.1?”
Sure. Fuck it. I should be fine.
I was not fine.
The next day, I quickly remembered why I had planned to do even smaller adjustments as the side effects hit me like a bus.
Programming exhaustion is difficult to explain because it isn’t just being tired. I’m very familiar with being tired. This is the kind of exhaustion where my entire system seems to decide that functioning is optional. Everything takes more effort, my tolerance for doing anything disappears and my body basically demands that I stop.
I’m literally fucking with my brain, so that is, of course, hard on my system.
Except this time, I couldn’t completely stop.
And strangely, that was kind of the point of the experiment.
Completely stopping work for a couple of weeks now requires a fuck ton of preparation beforehand. This time, there was no opportunity to do that.
At this point, I’m two adjustments into an impromptu programming period that I did absolutely no preparation for, and somehow my body is still functioning properly.
I feel like absolute death. I’m exhausted beyond words. I’m doing the bare minimum, and I’m very deliberately protecting what little energy I have. But my body is still doing what I need it to do.
That distinction is huge.
Historically, programming hasn’t just made me feel terrible. It could temporarily make my body significantly harder to manage while we worked out whether an adjustment was actually going to help. That’s part of why I treated programming periods so seriously and controlled as many variables as I could.
This time, I don’t have that control.
I’m adjusting while continuing to live my life, surrounded by people who are still learning how my body works, and hoping that three years of experience has taught me enough to know when I can push the rules and when I absolutely cannot.
So far, somehow, it seems to be working.
I did my second adjustment on Friday, and it’s going as well as it could have gone. I’m still fucking exhausted, but I’m functioning enough to deal with whatever life decides to throw at me without going into hyperdystonia, so I’m going to keep up with it until whenever I’m better. I’m seeing improvements, and my pain is kind of, sort of getting better, so there is no need to stop just yet.
I think that’s probably the biggest difference between this programming period and every other one I’ve done.
I’m not waiting until I feel good before I live my life again.
In the past, programming has been an event. Everything else stopped while we fucked around with my brain, waited for my body to lose its shit and eventually figured out whether whatever we’d changed had actually worked.
This time, programming is just something happening in the background of my life.
Admittedly, it’s a very fucking loud background activity.
I’m still structuring my life around it. I’m saying no to things I don’t need to do, working significantly less than I normally would and resting whenever I get the opportunity. I’m not pretending I can carry on exactly as normal.
But I’m also not putting my entire life on hold until my brain decides it’s happy again.
Three years ago, I don’t think I could have done this. Not just because my programming was significantly more complicated then, but because I didn’t know my DBS or my body well enough yet. Every adjustment was an experiment. I didn’t know which symptoms I could ride out, which ones meant something needed to change and which rules I absolutely couldn’t fuck with.
Now I do.
I’m not suddenly able to tolerate programming without making sacrifices. I’m still structuring my life around it, and it’s still influencing everything. But three years in, I know my body and my DBS well enough to start a programming period whenever I need to.
Even when I have no plan.
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