Finding HopeMass Observation Day 2023 (A Day in My Life)
Posted on May 13, 2023
So yesterday was the 12th of May, also known in the UK as Mass Observation Day! Every year, the Mass Observation Archive asks people to keep a diary for the day in order to record the everyday lives of the UK population. I’ve been keeping diaries for most of my life and I think that the idea of pulling together all of these accounts in order to get a picture of an ordinary day in the life, whatever that might look like, for a big group of people is really, really cool so I always try to participate. Here is my contribution for this year.
Some important things to know before reading: I’m neurodivergent, autistic and ADHD, and struggle with multiple mental health issues (Depression, Generalised Anxiety Disorder, Obsessive Compulsive Disorder, and Borderline Personality Disorder) and physical health problems (Hypermobile Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome). Having spent eighteen months in the worst depressive episode of my life, I’m recently back on medication and trying to get my feet under me again, working hard at both therapy and hydrotherapy. I’ve also recently released my latest single as a singersongwriter, ‘House on Fire,’ and am working towards several other projects.
I slept through two alarms, completely exhausted. I’d had a really late night in London seeing Ingrid Andress in concert (supported by Nick Wilson), which was absolutely amazing but between the energy expended and how late I got home, I was beyond tired.
When I finally managed to force myself awake around eleven, I lay in bed for a little while: I did a quick check in with social media (I’m trying really hard to find a healthy balance around time on my phone), did some Duolingo practice, and read a little bit of my book (both of these things are habits that I’m trying to practice daily). Then I got up and got ready for the rest of the day.
At one, I had a Zoom date with one of my best friends. We had a good catch up about what’s being going on for each of us, with many a tangent on kind of bizarre topics like alternate universes or the different sounds that insects make. And then we continued watching the TV series we’ve been watching together for the last few months, a series we both enjoyed when we were younger; we love it but we also love making fun of it so we always have a blast. We managed to watch two episodes and had a great time before I had to go. I didn’t have long before my therapy appointment so I got my bag ready and then fiddled around on my guitar until I had to leave (I haven’t been able to play for long stretches of time recently since I hurt a couple of my fingers so I’m trying to build it up again).
I was so tired and really sleepy (one of the ongoing symptoms of my health struggles and quite likely a side effect of my medication), plus my chronic pain was pretty bad (my shoulder and knee have been particularly painful for several days now), but I tried my best to push through and engage the best I could with therapy. In some ways, it was a fairly chilled session (as they go): my therapist had asked me to send her the poetry I’ve been working on over the last month or so, which I did. But it was also hard and I felt really vulnerable because most of the poems are so honest and so revealing. There were some that I said, before we even started, that I couldn’t talk about; just writing about those topics and sharing them (my anxiety about them was so high that I was really tempted to leave them out) was a big step forward. Obviously I want my therapist to know about these struggles but talking about them is beyond difficult (just the thought of it makes me want to scream or run or both); this is the best I can do for now. So we went through the poems, talking about what inspired them and my feelings about those people or experiences or struggles, which inevitably turned into bigger discussions. That meant that we didn’t get through all of them but we did cover some important stuff. I’ve been back at therapy for a while now – several months – but my new therapist is still getting to know me and I’m still getting comfortable with her; there are many things that I can talk about but there are still things that I can’t, things that I’ve never been able to. It’s a process, as I often have to remind myself.
Back home, I talked with my Mum about some of the stuff that had come up in the session but I’m always completely exhausted after therapy – I have been known to fall asleep on the sofa afterwards, hence the late afternoon appointments – so I checked in with the cats, put on The Good Place (my current rewatch), and lay on the sofa for a bit. I called one of my parents for a catch up, had some dinner, and then spent the rest of the evening working on some different things for this blog.
What should’ve been a fairly pleasant evening was complicated a bit by how bad my hair pulling has gotten. That restless, anxious energy that drives me to keep doing it is so hard to resist, especially when I’m tired, and the longer I do it, the more it hurts: my scalp, my neck, my shoulder, my elbow, my hand. But I can’t stop. There have been periods of time where different coping mechanisms have at least reduced the amount of hair pulling but I don’t have one that’s working right now. It’s frustrating and it’s exhausting and painful but I just can’t stop, regardless of how much I want to. I did look into Hypnotherapy briefly a long time ago but didn’t get very far with that endeavour, maybe because it always felt like there were bigger things going on, but maybe I’ll try again because it’s been ten years and it would be really nice not to do this anymore.
Given how tired I was, I tried to go to bed earlier – I’ve been going to bed far too late – and while I did go to bed a bit earlier, I still ended up staying up too late, catching up with my diary. I had multiple cats curled up with me, which was very sweet, so it could’ve been worse and, after all of my problems with sleep, I did at least go to sleep quickly and easily; I’m always grateful for that now, having struggled so much over the last couple of years.
So it wasn’t the most fascinating day of my life but it’s pretty accurate to my life right now and I guess that’s the point of the exercise. It’s a normal day in my life and this is what normal looks like right now, for the most part.
If you keep a diary or want to note down some thoughts about what your 12th of May looked like, the website is here, where you can learn more about this project (and their other work) and submit your entry if you would like to.
Trying Tranylcypromine
Posted on August 6, 2022
TW: Mentions of suicidal thoughts and negative thoughts about food.
Back in May and June of this year, I tried another MAOI antidepressant, Tranylcypromine; it actually works a bit differently to the other MAOIs I’ve tried, like Phenelzine and Moclobemide, so I was hopeful that it would be the best of those and maybe even more. This one was a tricky one to get because it’s so expensive (a month’s supply is £300 – everyone I’ve talked to about it has asked if it’s made of gold, which made me laugh because that was my exact reaction) but fortunately, I have a great psychiatrist and a great GP who made it possible. I wasn’t in a great place but I was cautiously optimistic that this one would be better.
As is always the case with posts about medication, this is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.
WEEK 1 (10mg Once Daily)
I was still struggling to sleep, not getting to sleep until after three in the morning, and then I’d sleep into the afternoons. I struggled to get up (probably due to both physical tiredness and my bad headspace) and doing pretty much anything – my week involved a stressful dentist appointment, multiple swims and hydro sessions, a meltdown, and more – had me falling asleep on the sofa as soon as I got home. And I was tired and sleepy all day, regardless of the hour.
I was very nauseous all the time and when I actually managed food, it wasn’t satisfying at all. So eating was tough.
The depression was solid, like it was darkening the edges of my vision at all times. I was also very anxious most days and I was really struggling with my concentration.
The chronic pain that had flared up wasn’t great but it was getting better. It was less than it had been and for that I was grateful.
WEEK 2
My sleep continued to be a struggle. During the day, I was tired and sleepy (and fell asleep on the sofa several times despite how wonky my sleep schedule was) but then I just couldn’t sleep at night. My brain kept going to scary places and nothing that’s helped in the past worked. I usually fell asleep sometime between three and five am and then I’d struggle awake in the early afternoon. I couldn’t shift it, no matter how hard I tried or what I did.
I was too depressed to do anything. I was completely paralysed by it. I was depressed and anxious and restless. I was struggling to concentrate. I felt overwhelmed and lost and hopeless. I was having suicidal thoughts again. I was desperate to distract myself from my thoughts. I nearly had another meltdown. I felt like something vital in me had been broken. I still do.
WEEK 3
Sleep remained the bane of my existence. I wasn’t getting to sleep until around five in the morning and one night I didn’t sleep at all (that was a particularly miserable day). I’d manage to wake up around three or so but feel sleepy straight away. And I was tired all day everyday but then I’d go to bed and just lie there, so anxious that my chest felt tight, so anxious that I couldn’t breathe; I just couldn’t calm my brain down.
I was still very depressed. Nothing helped, nothing made me less depressed, or made me feel better. It was so bad that I just couldn’t engage with anything; I felt trapped with my thoughts and it was horrible. And feeling like that, I didn’t know what to do with myself. I just felt like crying and screaming. I was also really anxious. And I just felt hopeless, my suicidal thoughts a consistent buzz in the background. My OCD also became more difficult to manage; the compulsions felt even more suffocating than usual.
Food was also really stressing me out. I wasn’t enjoying it and it doesn’t seem to give me any energy, which – in my head – meant that I was just gaining weight and the thought of that made me very anxious. I’ve never talked to anyone about my anxieties around food and body image because it always feels like there are more pressing problems. Sometimes it’s easy to ignore and sometimes it’s all I can think about and this was the latter.
WEEK 4 (+ Zolpidem)
After so much disrupted sleep, my GP prescribed me Zolpidem to hopefully get a handle on it. As a result, my sleep cycle became very erratic: some nights I barely slept at all, some nights I slept for more than thirteen hours, some nights I slept at a normal time, some nights it made no sense at all. But regardless of that, I was still tired and drained and sleepy during the day.
I was still feeling awful. I was depressed and anxious with almost constant suicidal thoughts. I felt useless and pathetic and I couldn’t stop crying. I just completely overwhelmed and utterly hopeless. Even the most basic engagement with the world was excruciating but hiding away hurt too. I ended up retreating from everyone, both in real life and over social media. As I said, I just felt completely overwhelmed and paralysed.
After a rough session with my psychiatrist, I came off the Tranylcypromine. That was fairly easy, all things considered, and I did feel better. Well, ‘less terrible’ is probably more accurate: I was less sleepy, which made things easier, and I had periods where it all felt a little less oppressive. I also got better at blocking the world out, although I’m not sure that’s done me in favours long term.
As far as my psychiatrist is concerned, my options now are to either start taking Phenelzine again – the one antidepressant that has helped – or to look at other options. My anxiety around going back to Phenelzine is that I will just end up here again, when the side effects become too much to handle. So it feels like searching for another option is inevitable (but then I’m scared that another option won’t work and I should just accept what the Phenelzine can do but… And round and round we go). I have been referred to the Treatment Resistant Depression clinic (something I had no idea existed) to discuss what those other options are and we are also talking to a private clinic, trying to get as much information as possible. But, as hard as I try, I don’t know what to do next. I don’t know what the right choice is and no one else seems to know either.
Goodbye Moclobemide
Posted on June 11, 2022
TW: Mentions of suicidal thoughts.
After a couple of months of Moclobemide, it became increasingly clear that it wasn’t really working. It was better than nothing but it wasn’t good enough; I was having less bad days than I’d been having previously but I wasn’t having many good days. I don’t expect constant happiness – I know that that’s not a realistic dream – but I have to believe it’s better than this. But, in order to try something new, I had to get off the Moclobemide first.
I was taking 300mg twice daily before I began to reduce the Moclobemide and I came off it fast. As always, this was a process I discussed with my psychiatrist and we made all of the decisions together, dependent on my medical history and our joint understanding of my reactions to these kinds of medications. This is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.
150mg Twice Daily (+ 20mg Propranolol Twice Daily)
The first phase of the reduction was a little over a week and I didn’t feel particularly different. I was still feeling depressed and hopeless and miserable; I was so incredibly anxious. I didn’t want to be around people: I just felt so overwhelmed and oversensitive. I was feeling pretty unmoored and lost but on the worst days I felt pathetic and unaccomplished and useless. It was awful. Plus, it was a pretty hard week: although I had one really good hangout with a friend, I also had two quite upsetting medical appointments and a migraine that lasted several days.
Sleep-wise, it was still a struggle – as it has been for months. Getting to sleep was frustrating; sometimes it took hours, even on the few occasions that I took sleeping pills (I haven’t found them helpful since I tried ADHD medications back in November last year, which have thoroughly screwed up my sleep). The longer my difficulty with sleeping goes on, the more anxiety I have around it, which definitely isn’t helping. When I finally did sleep, I slept badly with the vivid, stressful dreams that I’ve come to associate with the changing of medications. I’d sleep late – into the afternoon – but even then, when I had managed to get up, I was still tired and sleepy, actually falling asleep on the sofa during the day several times.
I was craving food – particularly salty foods – but nothing satisfied the craving, which was incredibly frustrating.
It’s probably worth noting that I was in the middle of a pain flare up, with the pain mainly in my arms around the elbow. It was pretty bad, worse than the chronic pain has been for a while. It was especially bad in the mornings and was part of why I struggled to get up once I finally managed to wake up. It was so bad one day that I had to cancel my hydrotherapy session because just the thought of washing my hair in the shower had me near tears. Fortunately, it did start to get better by the end of the first phase, much to my relief.
150mg Once Daily (+ 20mg Propranolol Twice Daily)
The second phase of reducing the Moclobemide lasted ten days. It was a hard week: I was very depressed (and the suicidal thoughts were back) and I was easily overwhelmed and upset. It felt like my brain just wouldn’t shut up and kept magnifying all of the most distressing or anxiety-provoking thoughts I had; I was doing my best to keep myself distracted by mundane stuff as much as possible but I wasn’t always successful. As I said, it was a really hard week.
It was still taking me hours to get to sleep, even on the nights I was falling asleep on the sofa. Most nights, I slept badly and I had more of the same vivid, stressful dreams (and nightmares) before struggling to wake up, no earlier than eleven. I was sleepy within an hour of waking and Red Bull didn’t seem to help. I was so tired and so sleepy during the day; I fell asleep on the sofa in the day several times during those ten days. I was so tired all the time that I struggled to get anything done.
I was still craving the sensation of eating – especially salty foods, as I said – but again, food just wasn’t satisfying or filling in any way. I’ve got it under control for the most part – I’m getting better at resisting the urges and eating according to what I should be eating and not what I randomly want to eat which I then get no pleasure out of anyway – but it’s very frustrating. I’m also talking to a nutritionist about the specific salt craving and she’s sent off for blood tests to determine whether I have a vitamin or mineral deficiency that needs attending to.
The chronic pain got bad again after it’s momentary dip. It was so bad that it was repeatedly waking me up in the night and washing and drying my hair was an exhausting experience. I had several really bad pain days that made it a struggle to concentrate, to do anything. I also had a several horrible migraines that took me out of commission for a couple of days each, which was very unpleasant. They have been worse though so I’m grateful for that.
Washout (+ 20mg Propranolol Twice Daily)
The one day washout period was awful. I was deeply depressed with suicidal thoughts; I was barely functional. Fortunately, it was just one day without medication rather than the usual two weeks. That’s always the worst part of changing medications for me so I’m grateful that it was so short this time.
So coming off the Moclobemide wasn’t fun but it wasn’t as terrible as it could have been either. I’ve definitely had worse. I’m just glad it’s over and now I’m onto the next medication, which will hopefully be better. It’s hard to stay hopeful when I just seem to be finding medications that don’t work but even when I do feel hopeless, I honestly don’t know what else to do. So I just keep going.
[I just thought I’d add that, a few days after this, the chronic pain faded and I started to feel a lot better. So that was very good news.]
Finding Hope 