Today’s blog is going to be a bit shorter. I’ll focus on medication and do my best to respond to your kind comments. Because many of us struggle with or without medication, I’m going to be honest here. That means trigger warnings for: mental illness, medication, sectioning, self-destructive behaviour and physical illness
This week, monitored by my GP, I’ve started reducing one of my medications. It’s not the first time I’ve done this, it won’t be the last. But it’s not fun while it’s going on.
I’ve been on some form of medication for over eight years. After fighting the very idea that I had any form of mental illness (let alone autism), I started on antidepressants on the 29th of February 2012 – 20 mg of Escitalopram. When I went into hospital, on the 25th of April 2012, I was given 600 mg Quietiapine, 4 mg Clonazepam and associated benzodiazepines for sleeping. As of today, I’m on 50 mg Sertraline, 275 mg Quietiapine and 7.5 mg Mirtazapine.
The first drug I was put on, Escitalopram, was an anti-depressant. I was suffering from the worst depressive episode of my life and was totally burnt out too. It did not do what I wanted it to do at 24, which was make me normal. I wanted it to cure my autism. Of course, it did not do that (it mostly slowed me down), but it did put a soft buffer at the bottom of the well when I fell into depressive states. It wasn’t until October 2017, when I was sectioned overnight, that I was told by a psychiatrist that a. Quietiapine and Escitalopram should never have been prescribed together (they counter-act each other) and b. Escitalopram has been shown to be unsuccessful with autistic people.
Yeah. None of my doctors or psychiatrists checked whether those drugs interacted badly. None of them. Over five-and-a-half years. Not one. That was a thing that happened.
Now, I’m on Sertraline. I switched the meds when I’d just started my current teaching job. It’s been a huge boon. It actually deals with the chronic depression and anxiety excellently. I’m very happy to be on this one and I’ll probably stay on it for the rest of my life.
I was on the Clonazepam for over three years. This brutal tranquilliser did not do what I wanted it to do (stop my meltdowns and end my anxiety) and the side-effects were brutal. I was awake 11-13 hours a day, needed to drink 6-8 cups of coffee a day and eat continually just to keep standing. I mean that literally. My best friend remembers very well how he had to physically pick me up after I’d once again fallen over in the middle of London or Leeds. I got to 140 kg. I know now that I should not have been on any dose of Clonazepam for more than six weeks – let alone 4 mg of the stuff, as I woke up. Getting off it was hellish. It took me four months, I had severe withdrawal symptoms. But only when I got off it could I restart my MA at UCL, which I completed in 2016. I still cannot believe how I managed to finish my BA, move to London and start an MA, while on that drug. I know how though, brutal and unrelenting self-discipline. That’s what got me through everything else.
I was given the Mirtazapine (an old-fashioned, non-SSRI anti-depressant) in early 2014, when I had been trying to do my MA in London whilst on all the other drugs too. It helped, particularly with sleeping. For over four years now, I’ve been on a half-dosage, just to get me to sleep. I’ll probably stick with this one for the rest of my life too. Sleep has been a problem all my life, but I won’t open that can of worms today.
I was put on the Quietiapine to stop my meltdowns. I wanted the medication to stop me being autistic, as I associated all of my autistic self with failure and mental illness, personified by my late father. The Quietiapine did not do that either, it just slowed me down. Not always in a bad way, but still. It was less destructive, even at 600 mg, than the Clonazepam was. But in early 2016, I reduced down to 500 mg. In 2018 I reduced to 400 mg. Then in 2019, in two attempts, to 300 mg. In the summer of 2019, I tried going from 400 mg straight to 300. That, combined with a ridiculously busy time in my life, bad sleep, an abortive relationship and a brutal public meltdown, I went back to 400. In the autumn, my doctor and I decided to reduce in 25 mg steps, every two weeks. That was a great success. Far more energy was released. Because of that, I had fewer meltdowns and got far more done. I still had meltdowns, but I was more in control of my body than ever. Quietiapine also has physical side-effects, such as low blood-pressure and greater retention of water and body-fat, which can lead to more serious physical issues later down the line. Because of all that, I’m using the lockdown to reduce the Quietiapine slowly, perhaps to zero. This will allow me to have the energy I need to be self-employed as autistic trainer, to write my book, to help lead the Autistic League and to be well and healthy. I’d rather do this now, than later, when I may have a lot more external responsibilities.
Be that as it may, it’s tough while I’m going through it. I’ve been pretty incapacitated for the past few days. Friday I woke up, bouncing off the walls. But after strenuous exercise and a big shop, I had a mini-meltdown. I couldn’t find the coriander in my overly stocked spice cabinet. My partner knows how to deal with me. He sat me down, breathed me through the meltdown. I then get hit by a wave of shame. It’s not pretty. Life has taught me that my meltdowns are an imposition upon other people I have to amend for. Obviously, that is not true. Meltdowns and shutdowns occur when the body is no longer capable of dealing with the intensity of existing; they are reactions to a situation that is already out of control. Meltdowns happen when my brain has been pushed beyond its limits. The only thing I can do is rest – nothing else helps.
Yesterday and Saturday I had no energy at all. I was spaced out on Saturday to such an extent that when – for no discernible reason – the extractor fan above the cooker blew up, I was totally flat in my response. I was too tired to get upset. Yesterday I tried to clean the flat, but I was very tetchy. My partner breathed through the meltdown with me and I just played hours of video games. I don’t like having to do that, but that’s what it is right now. I hate not being productive (uhuh, where have we heard that before?) and I have a very reciprocal relationship with my own body. If I have given my body one day of rest, I expect the next day to have total productivity. Of course, it simply doesn’t work like that. If I need rest, I need rest.
In fact, this morning, I was dealing with a mild catatonic episode. Remember the beginning of Kill Bill Vol. 1, where Uma Thurman uses her willpower to “Wiggle your big toe”? That. I decided to focus today on this blog, on writing up my daybook and on doing an hour of Japanese. The rest of the day is to relax. The more I relax, the faster I get through my brain being rebuilt from the inside.
So, that’s part one. Here’s some responses to comments:
To J-Mo; yes my house is still clean. Even when I’m totally knocked out, I do whatever I can to at least hoover and wash up.
To Yousef; well, you’re reading them! Keep up the vlogs yourself 🙂
To Jessy; I agree. Everyone deals with being overwhelmed in their own ways. Sometimes my strategies change. I also often need to be on my own, in the dark, curled up into a ball. Under the table has also helped recently.
To Colin; yes, I am 32. I don’t look it. I’ve heard it said that autistic people keep their looks for longer than NTs, but maybe the facts are just that I’m cute. #sorrynotsorry
To Tiffany; totally agree about making productive decisions to fill up lost time rather than scrolling through our phones. I will get to that after playing six more hours of Animal Crossing though x
To Jennifer; I’ll write about meltdowns soon, maybe even next week! The thing about discipline is interesting. I never think of myself as a disciplined person, I feel I’m quite lazy. But I don’t think anyone does. I use the daybook as a crutch, more than the other way round. Maybe if you start to see not journaling as the more stressful version of existence? That’s what helped for me.
To Alistair; I am so jealous of the Lockdown Lodge! I may pay you to move there for a few weeks to finish the book, to social-distance myself from the internet (after the lockdown is over of course). I also totally agree with the phrase: “If you’ve met one autistic person, you’ve met one autistic person”. We are totally different in the way we deal with the world around us. Some of the ways that I work would be destructive to you (bar the actually destructive ones, to be fair). That’s ok. We are glorious in our diversity.
To finish off, here are a few links to things you might enjoy:
https://www.bbc.co.uk/programmes/p06sdq0x The second series of 1800 Seconds on Autism is even better than the first. Robyn Stewart and Jamie Knight are utterly wonderful. Subscribe on BBC Sounds.
https://www.youtube.com/channel/UCN9fwImPnx16e8-eThlKCWQ Sara Harvey is Agony Autie. She is a hero of the community and a voice to be treasured.
https://www.theguardian.com/books/2020/may/16/dara-mcanulty-nature-writing-diary-of-a-young-naturalist Dara McAnulty writes beautifully about the natural world, is an incredible activist and his book is on its way to my house. I cannot wait to hear him be interviewed by Steve Silberman at the Hay Literary Festival. He is also half my age, which makes me nauseous on a very primal level. I’m getting over it though. 🙂
Thanks again, see you next week. Now, where’s Animal Crossing?