It’s been a couple months since my last personal update, give or take a couple weeks. Last update, I was starting risperidone with benztropine to help negate urinary incontinence. Unfortunately, the benztropine wasn’t effective enough for our satisfaction. So, once again, we found ourselves switching antipsychotics, in an attempt to control mood stability enough to get me off of lithium.
So now we’ve gone from risperidone to haloperidol (Haldol). It comes with a higher risk of one well-known side effect of many antipsychotics that I’ve mentioned before: tardive dyskinesia, also known as TD. TD boils down to involuntary movements of the mouth and tongue. TD is more common with haloperidol than it is with most other antipsychotics, by a significant amount. I wish I could remember the number my psychiatrist gave me, it was by a factor of maybe comparing lurasidone to 20% and haloperidol was double that, in TD incidence? I don’t remember for sure though.
I started haloperidol for a few days and then stopped my benztropine. So far I haven’t had any urinary incontinence incidents, and it’s been a few weeks since I stopped risperidone (Risperdal). Medication-wise, I think I’m doing fine right now. Not sure if haloperidol will be able to replace my lithium, but I think that’s our goal right now.
Apart from medication, there have been some significant changes. A couple weeks ago, we had to put down my sister’s 15-year-old dog. I think we sort of knew it was coming – he was an old man, after all. But it did happen kind of suddenly, where suddenly he couldn’t use his back legs anymore. I’ll spare you the details. We buried him in our pasture.
I had a part time job bathing dogs at a grooming salon. I believe my last update mentioned getting a “work experience” there through voc rehab. I did that, and I was officially hired by the grooming salon shortly after. For the first couple weeks I was able to power through, and things were going well. I had episodes of PTSD during my shifts that caused me to leave early, and my psychiatrist prescribed some propranolol, typically used to treat anxiety disorders. It largely acts on a physiological level, lowering heart rate and regulating blood pressure and things like that. I think the point was for it to do that and thus relieve some of my psychological symptoms as a result, though it didn’t seem to really accomplish that.
I also started missing work more often, as getting out of bed became a monumental task – one that was oftentimes impossible. Along with that, I was only able to get together the willpower to take a shower once a week, if that. I only worked about 18 hours a week, after I got accommodations from my boss due to PTSD flare-ups at work and difficulties getting to work on time – which, by the way, seemed very unfair to my bather colleagues who would, after I left work earlier, have to pick up the slack to clean up and close up shop.
Overall, it gradually seemed more and more unsustainable long-term. I’m still trying to put into words exactly what it feels like on the days I wake up and just… can’t do anything. Can’t get out of bed. Stress seems to make it happen more frequently, so I think I don’t handle stress well.
On top of that, I oftentimes felt paranoid and suspicious of my coworkers, despite those feelings being unprovoked. I ran into a couple of coworkers on a walk outside one day and for the next several days couldn’t quite shut down the thoughts of: are they following me? are they real? Things like that were frequently driving me a little up the wall.
My SSI hearing is coming up at the end of August. I’m not super hopeful, with how everything is going right now in general, with the direction of welfare in the US. Only time will tell how it will go. It’s a scary time for a lot of people right now. As someone with invisible disabilities, I’m painfully aware of that.
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