It’s A New Dawn, It’s A New Day, It’s A New… Medication

TW: Mentions of self harm and suicidal thoughts.

In the last week of January, my psychiatrist told me to stop taking the Bupropion since it was so obviously having such a detrimental effect. In theory, after the wash out period was complete, I’d start taking a new antidepressant, Moclobemide. It’s an MAOI, like Phenelzine (the antidepressant that I’ve ever had the best response to – the only one I’ve had a halfway decent response to), so my psychiatrist thought it was the best option. But I was so depressed that I just couldn’t take it: knowing how these medications affect me, I just didn’t feel emotionally capable to handle the change.

But then, after a hellish few days and some kind of breakdown, I started taking Moclobemide. At that point, it was self preservation: I didn’t want to but I knew that I couldn’t keep feeling that awful – or worse – because something terrible was going to happen if something didn’t change.

This change was somewhat complicated by the fact that I was taking other medications at the same time. I was taking a lot of Diazepam with my anxiety so bad and I was also taking 20mg of Propranolol (recommended for anxiety and POTS – which was diagnosed by a cardiologist after a first round of tests – although I’m not sure it’s doing anything for either).

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 (150mg twice daily)

The first week was bad. I was completely overwhelmed by my anxiety and needed constant Diazepam to be even vaguely functional, just to get out of bed. I was very depressed, feeling exhausted and hopeless and worn down. I was still having thoughts about self harm and suicide although not as much as I had been but I just felt utterly overwhelmed, by everything the world wants from me. Life just felt like too much.

I was still struggling to fall asleep (there was one night when I was still awake at seven thirty am). My sleep schedule was completely fucked up; I was almost nocturnal. And even then, I was falling asleep in the day, regardless of how hard I tried not to. As I said, it was a whole mess. I was exhausted all of the time.

My struggles with food continued too. I could barely eat and on the rare occasion where I did feel able to eat, nothing appealed – at all – or satisfied the feeling. But between my mental health and my sleep issues, food felt like the least of my problems.

I also spent more than half the week with at least a low level migraine, which wasn’t exactly pleasant.

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WEEK 2 

The second week was also pretty tough, although in a few different ways.

I was still feeling very anxious – the Diazepam was only doing so much – and my depression was still very present. I just couldn’t engage. I was miserable. I felt very overwhelmed; life just felt like it was too much.

At the beginning of the second week, I started taking Temazepam – prescribed by my GP – to help with my sleep. It gave me a couple of good nights but after that it didn’t seem to do much. Most nights, I was still awake for hours and struggling up in the afternoons; waking up was miserable. I was exhausted and sleepy and kept falling asleep in the day, despite drinking Red Bull, something I haven’t felt I needed in ages.

I did have one pretty intense day: despite only getting about three hours sleep, I was up early and writing a song from start to finish – something I haven’t been able to do in months. It’s usually a sign of how good or bad my mental health is: things are getting bad if I can’t write. I’m not jumping for joy just yet but I am cautiously optimistic that if this is possible, things are improving. I felt really good for a couple of hours but then all of the bad stuff crept in again: I went to bed feeling exhausted and overwhelmed by my anxiety and depression.

At the end of the week, I spent two days in and out of a hospital in London, having tests done (I wasn’t taking the Propranolol for a few days as advised so that it wouldn’t affect the results). Just being in the hospital and the staff’s general lack of understanding around Autism was stressful and frustrating and exhausting. The first day was quiet but it was hard to relax with the blood pressure monitor going off every twenty minutes. The second day was more involved with more than three hours of tests. It was exhausting – I could barely stay awake for the rest of the day – and my whole body hurt afterwards, so badly that even getting upstairs when we got home was a struggle. I don’t have a whole lot of faith that these tests will show anything different than the first round (which resulted in the POTS diagnosis) or in medical tests in general anymore but I guess we’ll find out what they say in a few weeks.

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WEEK 3

At the beginning of the week, I officially gave up on Temazepam since it didn’t really seem to be doing anything. My GP had prescribed melatonin for when the Temazepam ran out so, with her blessing, I started taking that instead. It definitely improved my ability to sleep: after months of being awake for hours on end, I was falling asleep within half an hour every night. But I was still sleeping late – into the afternoon – and feeling sleepy in the day. I had several RedBulls in a week for the first time in months, which is a step backwards that I’m not happy about. I don’t know whether it was the melatonin or a side effect of the Moclobemide (not unlikely since I had the same side effect with Phenelzine) but, regardless, I hate it. This was one of the reasons I was so excited to try the ADHD meds; I thought I might finally feel something other than exhausted or sleepy or tired.

My chronic pain kicked up again, which was deeply unpleasant. My whole body hurt all week: every joint felt ache-y and crunchy and grind-y. I took painkillers throughout the day but the pain woke me up at night almost every night. But the only painkillers that help are ones that I can only take for a few days at a time and when those three days ran out, I was back to Ibuprofen and Paracetamol – neither of them do much – which was miserable and so frustrating: this has been going on – on and off – for almost two years and all I have are sporadic three day periods where I’m somewhat pain-free. The lack of progress is enough to reduce me to tears.

Mental health wise, things were up and down. Some days were okay and I actually got things done for the first time in ages, but some days were really hard. My anxiety was still bad and I was restless and uneasy; I didn’t know what to do with myself. I just felt like I was making everything I worked on worse. I was depressed, feeling overwhelmed and hopeless.

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WEEK 4 (450mg daily)

I was sleeping but sleeping restlessly and waking up a lot. And come morning, it was such a struggle to wake up. I would fall asleep again and again; staying awake felt impossible. I don’t know if that’s the melatonin or something else but it’s pretty miserable. I feel like I cannot open my eyes, cannot make my hands work. It’s not fun. At the other end of the day, things are generally better. It can take a while to get to sleep but it’s nothing like it used to be. It can take a while to get comfortable, wind down, relax but I’m still getting to sleep easier than I was without the melatonin.

In the daytime, I was getting sleepy within an hour of getting up and drinking Red Bull almost daily again. It’s not something I want to make a habit of but I was just too tired to figure out what the right thing to do was so I just focussed on getting through the day. But even with the Red Bull, I was tired and sleepy and all I wanted to do was close my eyes. Again, I don’t know if this is the melatonin or the Moclobemide but either way, I don’t know what to do. If it’s the melatonin, I can stop taking that and hope my sleep stays okay but if it’s the Moclobemide, then I’m pretty stuck. I really don’t want to spend my whole life feeling tired and sleepy because this is the only medication that works.

I’ve started working again – a bit, given how unpredictable everything’s been recently – after being completely unable to since the end of last year. That’s been good and hard (and completely exhausting) in equal measure, socialising too. It’s nice to be in contact with people again but so often, at the moment at least, it also makes me feel defective and broken. My friends are telling me about their jobs and their relationships and so on and all I have to talk about are the new meds I’m trying and the new therapy I’ve been thinking of trying. When you’ve been depressed and suicidal for the past four months, there aren’t a lot of light and fun conversation topics to reach for. So I just felt very lonely. I’m not putting that on my friends – I want to hear about their lives – but the disconnect is hard.

My chronic pain was bad too. My whole body was hurting, my joints aching, even my fingers. I still haven’t heard anything from the Pain Clinic so all I’ve got are over the counter painkillers that I can only take for a few days at a time. What I’m supposed to do on the other days, I don’t know; nothing else helps at all.

I’ve realised that I’ve been feeling cold a lot, pretty much all of the time. I’m not sure when it started but it’s been going on for a while. Even with a thick jumper, a scarf, wooly socks, and a blanket, I’m freezing.

Mentally, it was a tough week. I felt very anxious and overwhelmed. My depression was pretty bad too, although not as crippling as it has been, and I was just miserable really. I cried a lot. So, yeah, a tough week.

WEEK 5 (600mg)

My energy and sleep continues to be troublesome. It’s so hard to wake up in the morning: I keep going back to sleep, I can’t keep my eyes open, and my hands won’t work. I’ve found that eating right away helps but I hate it as a strategy; food is the last thing I want right after I wake up. Despite the difficulty, I have been managing to wake up earlier than I have been over the last few months and getting to sleep has been a bit easier (with the help of the melatonin – although it does sometimes feel like I have to focus really hard on falling asleep sleep, which seems to be somewhat counterproductive). But I was still very sleepy during the day, falling asleep accidentally a couple of times, and so tired, although it was a busier week. I was doing more, socialising more, and feeling everything more intensely. There were some really good moments but it was hard too.

And, of course, more activity has resulted in more pain. I’ve been in pain constantly but it’s gotten worse. Multiple long car journeys and more time on my feet has caused problems with my back; I’m sure that with time, sensible exercise, and slowly building up my stamina, things will get better but it’s really hard to be patient. The pain has also been really bad in my hands (from my elbows down to my finger joints), which instantly instills a cabin fever-like feeling inside my own skin. I’m still waiting to hear from the Pain Clinic but experience doesn’t exactly encourage high hopes for what they’ll come back with, if they ever do.

My mental health has been all over the place. Five weeks of this medication and I still don’t feel like I’ve got my head on straight. As I said, I’ve had some good moments this week but I’m still struggling, more than I feel like I should at five weeks of a medication. I’ve had a lot of anxiety and my depression is still very present. My suicidal thoughts aren’t as constant as they were but they are still there. I guess, I just would’ve hoped that, at this point, I’d be feeling better mentally. It’s hard to not lose hope.


So, I’ve been taking Moclobemide for five weeks and while things are very different from day one, I’m still not feeling great. My depression is still a constant, day-to-day battle, which is one thing if I’m waiting for medication to kick in and for it to get better but if this is it, it’s not enough. I’m grateful that things are better – that I can write songs again – but living like this is really, really hard. I just want to feel better. I don’t want every day to feel like a mountain that I have to climb. I guess, I just want to feel normal. Although, having said that, I don’t know if I even know what normal feels like.

The Pros and Cons of Winter

I love every season but by the end of it, I’m always ready for the next one. But, as a neurodivergent person with multiple physical and mental health conditions, different seasons present both different excitements and different challenges. With winter around the corner, I thought I’d share some of the good things and some of the difficult things, along with how I’m learning to cope with the difficult things. This list is, of course, specific to me and my location so it’s not going to match everyone’s experience but hopefully they’ll be something useful to you in here, even if your experience of the season isn’t the same as mine.


PROS:

  • The sensory experience – I think winter is my favourite season as a sensory experience. I love the crispness of the air; I love looking at all of the beautiful lights and pretty Christmas decorations; I love the smells associated with winter and Christmas (in my house, at least), like satsumas, the meals we generally only have in winter, the super sweet smells of sugary puddings and sweets, Christmas trees, and so on; the sight, sound, smell, and warmth of a fire. There are, of course, downsides, like busy shops and blaring Christmas carols but, over the years, I’ve gotten pretty good at avoiding those things.
  • Fires in the evening – My Mum and I both love having a fire to end the day, like a little treat for ourselves. As I said above, I love the sensory experience and we both find it a really good destresser. One of our favourite things about this house is the gorgeous fireplace and every year, we both get really excited about having fires again.
  • Potential for snow – I love snow. It makes me so happy: watching it fall, standing in it as it falls, how beautiful it looks first thing before anyone has disturbed it, the way it crunches when you walk through it, watching the cats try to make sense of it, and so on. And because we get it so rarely, it’s always special. No, it’s not guaranteed but I still enjoy being excited about the possibility.
  • Christmas – I struggled with Christmas in my late teens and early twenties, which I think was largely to do with how much I was struggling with my mental health and ASD. But as I’ve gained a greater understanding of the long-term issues I deal with and talked about them with my family, Christmas has become much more relaxed and enjoyable. They’ve been fantastic at working with me so that I can do the parts that I really enjoy and not do the parts that I struggle with. It’s become such a better holiday since then. I see friends and family (COVID depending, obviously), spend warm and relaxed evenings with my favourite people, get a Christmas tree and decorate it with the decorations my family have been collecting for years, not feel guilty (or at least feel less guilty) about doing things I don’t usually feel like I have time for (like reading books or watching movies all day), exchange presents, and so on. We’ve found a way to make it a really special, enjoyable time.
  • The cats spend more time inside – With the colder weather, my cats (whose presence I find very soothing) spend most of the day inside when, in the summer, they spend almost all of their time outside. So having them around more is lovely. They’re usually in the living room with me, curled up on the cat tree or sprawled across the furniture, or, even better, snuggled up with me on the sofa. They’re gorgeous and it’s one of my favourite things about winter.

CONS:

  • The cold – I hate being cold. You can usually find me in a big jumper or wrapped in a blanket. I’m often cold in the summer so it’s even harder to stay warm in the winter. I’m super grateful for the heating, the fire, my electric blanket, and so on.
  • Managing temperature – I really struggle with temperature regulation. I get hot or cold really quickly but then it can take hours to return to normal (and then it can suddenly jump to the other extreme). And going from really cold outside to really warm inside can just make that even more tricky. Layering helps but only to a certain extent. I have been doing some research and there are brands that make clothes to help with this so I really want to investigate these as I can afford it. (x)
  • Different fabrics – Clothes for cold weather can cause sensory difficulties. They can be bulky, heavy, itchy, and so on, as well as making me feel claustrophobic and trapped in my own clothes, which can cause a lot of anxiety. As I said above, I tend to do a lot of layering with the clothes I’m comfortable in but that isn’t a fix all. I’m still looking for a coat that doesn’t stress me out and I really hate wearing gloves. But I’m still trying to find the best option.
  • Ice – I might love snow but the amount of ice around in winter can be pretty perilous. And between my less than perfect balance and my chronic pain making me somewhat unstable, I do worry that every step could disappear underneath me and land me on cold, hard pavements with painful consequences. Given how bad my pain has been recently, a fall could be very painful and that pain could linger for quite a while.
  • More difficult to meet friends – Especially with COVID in the mix, I find it much harder to meet up and hang out with my friends in the colder months. It’s so much easier (and cheaper) when we can hang out in a park or on the beach or something like that, plus it feels safer considering the times we’re currently living in. But finding somewhere to hang out inside poses certain challenges, like COVID anxiety, meeting everyone’s dietary needs, the costs of hanging out in a cafe for example for an extended period, and so on. It’s just that bit more complicated and harder to organise and I find that plans often get pushed back again and again. So I often end up seeing my friends less in winter which makes me sad.
  • Feeling sealed inside – In an attempt to keep the heat in and save money on the heating, we keep the windows and doors closed as much as we can. And while that does the job we’re trying to do, the side effect is that I often feel a bit claustrophobic, like I’m sealed into my house with only the same air circulating (obviously this isn’t scientifically true or I would’ve suffocated long ago). And that feeling really stresses me out. Mum has taken to leaving the windows cracked open at night to get some fresh air in, which does help, but the feeling does still start to creep in by the end of the day. So I’m still working on that.
  • Less light, more darkness – While I like how cozy the house feels when it gets dark early, I do sometimes find it stressful; it feels like the day is actually shorter and I have less time to get done everything I need to do. Plus, autistic individuals are often low in Vitamin D so with fewer daylight hours than usual, that can become a bigger problem. I’m already low in Vitamin D so I take a supplement prescribed by my doctor to avoid a serious deficiency that could cause health problems.

I don’t know if this is helpful but when I sat down to do some research for this post – to see what other autistic/neurodivergent individuals find good and difficult about winter – I couldn’t find anything for autistic adults. Everything I found was directed at parents helping their children to adjust to the change in season but that doesn’t just go away as we grow up, although the challenges might change. So, since I couldn’t find a single post or article relating to adults, I felt it was all the more important to write something on the subject. So I hope this has been helpful in some way. Let me know what you would include on your list or how you manage the seasonal change!

My First Concert Since The Pandemic Began

One of the big things I’ve missed during the pandemic is concerts. They’ve always been a big part of every year and losing that – I haven’t been to a concert since Halsey’s Manic Tour in March 2020 – has been really hard. But it’s also hard to feel like they’re safe to go to, now that they’re happening again. I still have a lot of anxiety about going out and about being around a lot of people – it’s not as if COVID is no longer a risk – so going to a concert is a big deal. But normal life does have to resume at some point, even if it happens in baby steps. Since this first show – The Shires in Bromley – was a relatively small concert, it felt like a good one to try, to get the lay of the land in terms of safety precautions, to see how I feel in that sort of environment after everything that’s happened over the last eighteen months, and so on.


This wasn’t quite my first live music event: back in September, I went to my uni’s Songwriters’ Circle, the first one in person since before the pandemic. It was just wonderful. Everyone was so excited to be back together, so excited to get to hang out together, singing along at the top of our lungs. That is one of my favourite things about going to a music uni: everyone’s always up for a sing along.

But this doesn’t feel like a first concert to me, since I’ve been in and out of the building for the last couple of months as I finished my final Masters project. It was just some more people and music. Plus, I’m really comfortable with the safety precautions there: negative COVID tests to get in, a one way system around the building, lots of people still wearing masks even though they aren’t mandatory, and so on. I already feel safe there. But a concert is an entirely new ball game.

My first proper concert was The Shires at the Churchill Theatre in Bromley on the 5th October. It wasn’t a venue I’d been to before and road closures made getting there quite stressful, plus it was a pretty bad pain day: my back, my shoulder, and my wrists and hands. So while I knew I would enjoy the show itself, I wasn’t sure whether the stress and the pain would override that. Fortunately getting in was quick and easy and I didn’t have to spend too long on my feet. And although no one had to wear a mask once seated, negative COVID tests were required for entry so it felt as safe as it can, as anything can be at the moment.

Jake Morrell was the support act and he was great: he was funny and personable and had some good songs. My favourite was ‘This House,’ I think. And I liked ‘Freewheeling.’ I definitely want to check out more of his music.

And then The Shires – Ben and Crissie and some of their band – were on. It was so nice to see them; I’ve seen them so many times over the years and the eighteen months since the pandemic began may be the longest I’ve gone without seeing them. So, as I said in my Instagram post, it felt quite apt that my first proper concert back was them. It was a cool twist on their normal shows: it was all acoustic (being in the front row, it did feel a bit like my own personal concert) and they took the opportunity to play a lot of the songs that they don’t play often or haven’t played for years, like ‘All Over Again,’ ‘Drive’ (one of my favourites), and ‘World Without You.’ Of course they played the favourites too, like ‘Nashville Grey Skies,’ ‘State Lines,’ ‘Tonight,’ and ‘A Thousand Hallelujahs,’ which always get people singing along and dancing. Of their most recent album, Good Years, which they never got to tour due to the pandemic, they only played two songs and they happened to be my two favourites: ‘Lightning Strikes’ and ‘About Last Night.’ So that was cool. And they also played one of my all time favourites of theirs, ‘Daddy’s Little Girl.’ I connected to that song instantly – it being about the loss of a father and how, whatever else you are or end up being, the most important thing you’ll always be is his daughter – and it’s remained very special to me. I actually posted a short cover of it on Instagram years ago:

And to make a cool concert experience even better, they performed a couple of songs from their next album, that is apparently written and produced already so hopefully it won’t be long before we get to hear that. Of the two songs they played, I loved ‘Side by Side’ and I can’t wait to hear it again already. So that made the night extra special.

It was painful – as most things are right now – but it was a good night. It was so wonderful to be at a concert again; they really are my happy place, where I forget about the hard stuff (for the most part – I mean, you can’t exactly forget about physical pain when you’re in it). Hopefully things will continue to improve on the COVID front and concerts can, at some point, come back in full force. That’s the dream anyway.

I was hurting before we got home. I’d stayed sat down as much as possible to protect my knee but apparently my leg has a mind of its own because my foot kept tapping – and therefore flexing my knee – no matter how many times I forced myself to stop. And chronic pain and applause clearly don’t go well together so I think I might have to come up with an alternative for bad pain days (I’ve since found some suggestions here, or maybe the sign language version of clapping is the way to go). And the next morning, my whole body hurt and I was stiff and ache-y. My back and my hands were the worst and unfortunately my painkillers weren’t doing much more than taking the edge off. So that was a pretty unpleasant day but it was worth it.


So that was my first concert back. I honestly thought I’d find it more scary, more stressful – in the pandemic anxiety sense, that is. It was all a bit overwhelming for a moment going in but once we were in the auditorium and the show had started, somehow I forgot about COVID and my anxiety; I was just in the moment and completely absorbed by the music. That wasn’t something I’d expected and it was quite wonderful. All the anxiety, all of the precautions and planning… it was all so very worth it to have live music again.