I had to stop taking my clozapine (anti psychotic) because after 15 helpful years it began giving me physical side effects. I then had the side effects of coming off a strong drug. And so a few days later I was unwell and returned to the local mental health ward for three weeks. This post has been okayed for publication by the ward manager. Here’s some helpful info on what happened…
I settled at last after about four days, I knew it would happen. I wonder if the healthcare support workers and nurses have seen my 20 years of medical (mental health) notes. I think they can tell I’m not your average mental health patient. Not superior, just clued up and familiar with how it works like a bee returning to it’s old hive. I also have good levels of ability to talk about it all when necessary and motivation to learn from these professionals instilled by my dear dad. He’s a mental health nurse himself, and that’s okay with me. But the abilities to communicate had up and left me this time around for the first few days. After several doctors’ appointments of being quite unnecessarily mute because of ten nights of insomnia, (a textbook side effect of coming off strong meds) – which can lead to not being able to string sentences together, having no memory etc. (‘Yes that’s right my name is Peter…Edwa… hold on, I’m almost certain of my middle name , it does in fact I think, begin with an ‘E’ but can we move on to the next question because I’m not sure about the rest of it’), it’s such an uplift to be able to chat about things coherently, sensibly, happily, with my team when we meet up. After seven nights of eight hours peaceful and restful sleep (per night) I can finally talk about things again, with a touch more insight and clarity than before. Abilities such as speech are rather wonderful on return.
My dear mum has been so supportive as has all my family, but I owe a lot of it to myself. When I was feeling like a man on his own desert island for too long, I made the decision to get up, remember myself, all I’ve been through and how hard I’ve had to work to make my life functional, productive, normal and fun again. I felt a lot of strength. If you are ever in tough life situations, I hope you can also feel a strength within that often comes when we have no other choice, it’s at the precipice that we learn to fly.
Remembering my bridge jump suicide attempt in 2001 was ironically helpful. The pain of that and the following three months of misery with no sleep makes me, helps me, know that there is nothing I can’t face now. Whether that horrible time in 2002 was a kind of blessing in disguise is a disagreeable memory to have, though it seems to prepare me to face many kinds of music in present day, when the cards are cut against me I know, I can survive. And somehow, somewhere, there is something that is giving me peace in my heart again, despite the fact that I’m not religious or spiritual.
My local mental hospital is of course not where most people really want to be, but for many it’s a real lifesaver. It is small compared to the huge asylums from earlier in the 20th century, but not lacking. It has many things to do and I am not bored – I paint and write a lot. There are people who help here even though they have many other responsibilities and I’m grateful. If I were to ever be in a position to change how things are done however, I would whip up local politicians and funding to get more staff! Simple as that really. For example we have a gym at the hospital but staff have to work harder than they should have to to find someone to escort me to it. Sometimes we patients complain about this and that but it’s usually conjecture – we simply don’t realise how hard staff are working. I used to be a peer support worker so I have the pleasure of knowing a few things from both sides of the patient/staff dynamic. They do a hard job well.
So I’m happy, after all, we are in the midst of a coronavirus infection and if I were at home, I’d have even less to do, there are structured activities here. But let’s not start singing the praises of Basingstoke’s mental health system just yet, because it ain’t perfect, there are lots of people with issues. In my opinion the only thing we can really do about it is take, lets say, ten million pounds from the Trident nuclear defense system that Britain spends either 100 billion on or 100 trillion on (my head isn’t the best with such bombastic figures) and give it to the Hampshire mental health system and boom! Problem solved. Maybe. I don’t know. More staff couldn’t possibly be a bad thing… It would enable me to use the gym every day. And of course if we can treat patients better, they might be less likely to use services so much in the future ergo saving money in the bigger picture. Perhaps.
These places can be tough. Very, unimaginably irksome on a mental health ward for a bunch of reasons that I have often felt would get worse until I leave the ward. But it really does get easier after a few days and I know that now. The brain adjusts and there is support, help. But there could be a nurse available all the time specifically for new patients if there was that extra money. During covid, when I was admitted on a Tuesday afternoon, I had to stay in my room, in isolation, with no supplies or even my phone, for 20 hours while waiting for the damned covid test result, while going through drug withdrawal symptoms. That was hard. Necessary of course, and I understand. It may have been even harder if I hadn’t learned in 2002 that I can do anything hellish because hell does not usually last for me in present day. I was asking nurses for things like a needy child, every time I ventured to the door of my isolation room. It did not help my side effects from coming off clozapine, not even a little bit, being isolated and imprisoned for 20 long hours. But it’s the only realistic option.
So, why hospital for me this time?
I’ve been on Clozapine, a strong anti-psychotic medication since 2005 and at the time it turned my life around, after four years of hell with cannabis induced psychosis and panic attacks/anxiety. I began getting better. Fifteen years later in 2020 I am eating up most of life’s challenges, doing great except for occasional normal anxieties ‘like’ a job interview for example.
The minor, very rare, but possible physical health setbacks for being on clozapine aren’t something I’d want people I care about to have to live with. Because clozapine can have these side effects they test everything every month. My heart rate after a short walk to the testing centre was always about 105 after being sat down for ten minutes in a quiet room, an annoying effect. Not medically tachychardic, but I hated having the high heart rate which was typically 90 when I was at home in bed. The main problem with Clozapine though is that in very rare cases it can lower the neutrophils (a type of first responding white blood cell) so if it’s too low, the only choice is to have immediate cessation of clozapine, no tapering off, just abrupt cold turkey mate. They kept checking it daily and my neutrophils have gone normal again. For a few days I was vulnerable to picking up viruses in a time of coronavirus. It was not fun but such is life.
Moreover, the physical health benefits of coming off Clozapine, though trivial, have been as welcome as the Queen to my house of she ever wants to stop in for tea (thinking about that wonderful woman and all she has done for her country genuinely makes me tear up.) I have been eating, having a taste for healthier foods. I have no appetite for my poor dietary foods like before either. My heart rate is back to normal, about 68 as I’m in bed writing (I can test myself with a finger on my pulse with reliable accuracy in about five seconds after having it monitored for 15 years, thank heavens for small mercys). I’ve lost weight and am looking trimmer. Lots of things change including hormones in this situation, a bit like a crazily strong menopause (really). Clozapine can induce weight gain, cause constipation and over urination, tactfully referred to as ‘floating kidneys’ by a few. For years I’d be scoping out toilets while out and about and I’m only 39. But these annoying acceptances have gone back to normal. Physical health benefits (for me – we are all different) coming off clozapine? Good. Mental health benefits? Not the best.
The ward was hard. But after sleeping it’s so much easier. I’m on new meds, keeping busy and healthy. Work brings health.
Lots more to write about but there’s always next week to do another blog post about the tail end of my hospital stay and what happened upon discharge.
Please ask me some questions in the comments.