So for the sake of being transparent, especially because managing creativity with a disability is something I talk about often here, I want to share how the last week has been. I got very ill and began to suffer from the worst psychosis I have had in a very long time. (I’m doing a lot better now but still not 100%)I want to share what happened in broad strokes, how it affected my creativity, and how I’m returning from it.
My reasons for sharing this are one to be transparent, but also to normalize that this happens to people from time to time. I want people to know that this is a disruptive and scary thing, but it’s important to talk about.
So it all began a couple of weeks ago when my doctor and I decided I would try a new medication. I want to say this right away, it was not at all my care team’s fault this happened, so please do not judge them, you don’t know my medical history or the total reasons why we did this. The main reason for the switch was to try to get rid of some more serious symptoms I was having, but mentally I was pretty stable other than a few bumps here and there. So over the course of a few weeks, I began to wean onto the new medication and off one of the others I take. I had absolutely no issues, if anything I was doing better even than before. So on the 9th, I went to take my first full dose of the new medication and that’s when it all kind of went upside down. I even jokingly said to my husband, “If anything bad happens I’m switching to a higher dose of this medication”. I was 100% sure there would be no bad side effects from this, after all, I was already taking it. Also for the first time maybe ever on the 9th, I messed up the dosing of another medication I am on. (Long story, just know I accidentally took insta-release instead of extended-release and got quite ill.)
So Saturday I woke up feeling awful, shaking and so physically ill, everything seemed weird and I was agitated. I talked to my husband a lot, and we decided it must have been because I kind of messed up my medication the night before, and a little withdrawal of the drug I had been stepping off of. We thought everything would be fine. Then I started to really hallucinate, and I think really just be out of it. I don’t remember really what happened, but my husband confirmed that I had been as bad as I once was, but it didn’t last as long. I took some as-needed medication I have and came back a bit. Still not thinking about it. The weekend continued like this and on Sunday my psychiatrist made an emergency appointment for me and I was shaking so badly and had terrible physical symptoms. I decided to try to push past the symptoms. Then the next day Monday mentally I felt a lot better, but I was still so sick and having terrible symptoms. So I thought it was just withdrawal.
But as the week continued the psychotic symptoms kind of took over, and then I was in a full-blown psychotic episode. IT SUCKED. I talked to my Doctor every day almost and I was basically just trying to keep my head above the water so I didn’t have to go to the hospital. I 100% do not recommend this. Please if you feel out of it and are having terrible symptoms go to the hospital. I didn’t go to the hospital because this happened to happen while my family is between insurance carriers, and if you live in America you know, a trip to the hospital without insurance could bankrupt a person. If I had had insurance, I would have gone to the hospital Wednesday. For sure, no doubt.
Thankfully I have some amazing people supporting me, and I wasn’t alone by Doctors’ orders. It was nice to have the company, but it was also embarrassing to know I was not in a state to take care of myself. So most of the last half of last week I don’t really remember much, but I actually remember more than I used to when this would happen, which is kind of a blessing, kind of a curse honestly. I think it was good I was more aware this time, that’s what probably kept me from completely sinking and going to the hospital. But at the same time, it was horrific to be so in the moment while things were getting really weird and honestly, scary. It reminds me of this quote:
“This is the main advantage of ether: it makes you behave like the village drunkard in some early Irish novel... total loss of all basic motor skills: Blurred vision, no balance, numb tongue - severance of all connection between the body and the brain. Which is interesting, because the brain continues to function more or less normally... you can actually watch yourself behaving in the terrible way, but you can't control it.”
―Hunter S. Thompson,Fear and Loathing in Las Vegas
So I was pretty much aware that I was going insane, but also my body literally felt like I was about to die. My doctor explained that it can feel like Parkinsons’ Disease, but it was not permanent. I was very afraid also of Tardive dyskinesia because I had it really bad in my face many years ago when I first started taking more heavy medications, the second time I was diagnosed with Schizoaffective. My mouth and face used to move and twitch a ton, I had to go on special meds for these symptoms, so yeah it sucked and was embarrassing and I don’t want that to happen again. But thankfully, it did not come back. So what was I saying…? OH yes, being aware you are going crazy.
I kind of knew I was having psychosis, but when you are hallucinating and hearing voices, and having all these terrifying thoughts, it’s difficult to always keep on top of things. The main thing I thought this time during the period of psychosis, was that I was in the wrong timeline, or I was some sort of doppelganger of the real me, I thought I was a copy of myself and that whoever made me did a bad job. I couldn’t remember most of my past, which is weird because although normally I may suffer from poor short-term memories, my long-term memory is and has always been quite good. Everything looked really strange and I was hallucinating shadowy people all over. I’m still having a little trouble with everything looking weird, but it’s improving. I could barely speak at points, and mostly what I remember was falling deeper and deeper and getting more and more scared. I talked to two of my friends, and that helped. I also felt like I didn’t belong in my body, at points I thought I was on a TV show. There was so much more that happened too, but I’m having trouble making sense of a lot of this.
So basically my doctors began to reverse my drugs, and now I’m back on the one I was trying to replace. I won’t mention the drug names, because these drugs all work for some and not for others, and actually, the drug I had the bad reaction with works for many and this is a pretty rare reaction to have to it. So this drug was not for me, but I am a huge advocate nowadays for taking medication, even though in my past I was not always very adherent to actually taking my meds. But the thing that sucked is this whole incident made me feel like I used to that medication was poisoning me, that I wanted to stop taking it completely. But since I have been back on my old medication, I don’t feel like this anymore. Also, I want to say I’ve changed medications a bunch of times, and gone off of very serious medications and I have never had this bad of a reaction before. Some people asked why I went ahead and did this while at home, and you have to understand it was all going to plan until it wasn’t. I started changing medications before my insurance lapsing happened, and like I said, no one expected this to happen, but maybe I should have not moved forward to the last step while I didn’t have insurance in hindsight. But the main thing is, I’m almost completely back to normal other than some small lingering things that are annoying but not terribly disruptive.
So the word disruptive is key here. All last week I was unable to work on any of the things I normally do. I couldn’t write, couldn’t do any art, couldn’t work on my YouTube videos. I couldn’t even clean my house! This was incredibly annoying and it just made everything worse having no outlet. My outlets are part of the things that keep me well, and in my private life, I have some very big reasons why I must be well as as possible. This was the first time since 2018 I have gone a full week without doing creative things at all. This was honestly the worst “incident” I’ve had since probably 2017. Another reason I wanted to stay out of the hospital was that I have not had to go to the Hospital in many years. But not being able to do anything was annoying and very boring. I tried not to think this way, but I kept thinking about how behind I was getting. It’s that hustle culture rearing its ugly head again in my brain. But for the most part, I did a pretty good job smooshing this down.
So this week I have a gentle schedule set for myself. Probably some would say I need to take it even easier, but doing things helps me improve. I’ve been sleeping and watching a lot of videos for the better part of a week and I need to do something else!! I am planning on writing this blog post, brainstorming ideas for my upcoming SUBSTACK, recording the audio for my next Mutant Memories video, and doing a little writing on my novel.
Thankfully I was really productive in the last month, because I was having so much fun with the novel I’m writing, so I’m still ahead of where I want to be. My goal was 67,000 words by the end of July and I am already up to over 44,000 words currently. I do plan on doing Camp Nano this year as long as I am still feeling well. If you want to be buddies feel free to add me on the official site, my name on there is just “AislingBlack” all one word.
I know this sounds like a lot of things to work on, but this is just a “wish” list. I am by no means holding myself to doing all these things, or a lot of all of them. I am trying to show myself some grace, but it’s kind of hard to not chomp at the bit a little. I also have three videos in the works and I want to release more videos on YouTube and grow a community there, but it does take a while to do each video. But I really want to put out some of my anime videos I’ve been working on over the past couple of months, because people really seem to enjoy those, and they are fun to make <3!!
So basically things were really bad last week, but I’m coming back. I am being very gentle, and I also talk to my therapist today. I think it’s easy for people including myself to forget about things like mental illness because it is invisible. Especially if you have mental illness and overall have been doing pretty well for a long time. Having this major episode did kind of sting a bit. I was really feeling confident that maybe the worst of it was over, I even had thoughts of lowering my medications soon I was doing so well. But now I know the medications are there for a reason and they are helping. Even the side effects are honestly worth not feeling the way I did in the past week. So remember, take your meds, and keep a clear line of communication with your care team! I know I am very privileged to have the Doctors I do who basically are on call most of the time. But also I want everyone reading this to know, it’s ok to rest after being sick. I rested the past two days nearly all day, because I needed it, even though I really wanted to get back to work. Also for those of you with psychosis specifically, I know it is easy to feel angry at yourself but remember, this is not your fault.
So hopefully, I will get back on track this week, but if I need more rest, hey that is ok too.