2021 in Review

I’m not really sure how to sum up this year. It has been one of extremes, to say the least: anxiety, joy, stress, excitement, depression… And, at this point, I feel a bit like I’ve run out of capacity. For anything. So this was a hard post to write and it wasn’t helped by the dichotomy between most of the year and the last few months; I’ve found it very hard to look at each part without the other colouring it in some way.


The biggest part of my year was most definitely the final two modules of my Masters, which turned out to be my two favourite modules of the course, The Writer’s Voice and Major Repertoire Project. Having written about these already, I don’t want to repeat myself but I do want to look at them in the context of the year. From January to September, I wrote furiously and with such joy. There was anxiety and depression and stress – they were all in there – but it felt like all of that writing balanced the scales. I wrote so many songs that I love, that I’m so proud of, and that I can’t wait to release. While I did release new music this year – The Honest EP (Sunburst Sessions) – they weren’t new songs and I’m so excited to share new songs. I have lots of plans that I’m really excited about and despite the chaos of the last few months, I have been working on my next project. I’m very excited to share it in the new year.

I’m very proud of myself for completing the Masters, especially given that I did most of it during the pandemic, and I’m so proud of my final project; it is the best thing I’ve ever done and I can’t wait to get it out into the world. I poured everything I had into that project so getting such a high grade and then the Outstanding Student Award at Graduation felt really good. I feel weird talking about it but I am really proud of that achievement and the recognition of how hard I worked means a lot to me. Because of an administrative screw up, I’m not sure when my graduation will be official, when I’ll get my certificate – something that caused a lot of distress – but practically, it’s done.

My health, both physical and mental, hasn’t been in great shape this year. The chronic pain was really bad, the fatigue not much better, and the ongoing migraines are pretty miserable. My mental health was fairly stable and actually not too bad for the most part, until the last few months of the year. Then it got really bad. In order to try medication for my ADHD, I had to come off Phenelzine – the only medication that’s ever helped me – and then start Xaggitin. That went extremely badly. My depression all but overwhelmed me; it was the worst my mental health has ever been. I’ve stopped taking the Xaggitin and I’m taking Bupropion now and it’s different but I’m not sure if it’s any better though.

I’ve felt very alone this year, in regards to tackling and managing all of this. I came out of every appointment feeling angry, distressed, dismissed, or invalidated (and often multiple of these in various combinations). I haven’t felt safe with any of them; I didn’t feel like my existence even registered with them. So I’m finding all of that very hard and each new appointment is preceded by extreme anxiety, a kind of anxiety I’ve rarely experienced. It’s a bit like a fight or flight response. I’ve never had a great relationship with the medical profession but I’ve felt particularly let down this year. I have finally managed to get back to therapy (although this was before the newest variant threw a wrench in all of our plans) but it’s been a long time and a lot of stuff has happened; I feel like I’m having to learn how to do it all over again.

It’s also been a hard year, family wise. I haven’t been able to see one of my parents – in real life – since before the pandemic (for medical reasons) and that has been so hard. We talk on FaceTime and stuff and that’s good but I still miss her so much. And then, of course, my Granny died in September, just as I was finishing my Masters. At that point, I think, my brain just couldn’t take anymore; I don’t think I’ve processed any of it, to be honest. To a certain extent, I feel frozen, like I stopped while everything around me kept going. It’s not the first time I’ve felt like this but that doesn’t make it any easier. I’m sure all of those feelings will make their presence felt in the new year. But as hard as all of that is, I’m so grateful for the friends and family around me; I’m not sure where I’d be without them.

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“What a surreal year. I don’t even know how to sum it up really. Everything I felt, I felt in extremes: stress, anxiety, depression, joy, excitement. I wrote songs that I’m so proud of, I hugged friends I hadn’t seen in months, I completed a Masters degree that I loved. I struggled with even more health issues, I was almost overwhelmed by the worst depression I’ve ever experienced, and I’m learning to live in a world that doesn’t have my Granny in it. The high points were so high and the low points were so low and I’m honestly exhausted right now. This year has been more than I know how to handle and I’m still kind of drowning but I’m also still here.” (x)


This end of year post isn’t quite the same as what I’ve done in previous years but it’s been a weird year and I wouldn’t be surprised if I’m experiencing some form of burnout. I have a few plans but honestly, I have no idea what the next period of my life looks like and that’s scary. I hate how my life goes on hold whenever I change medications and I feel more than a bit lost right now. All I can do is wait and see and after all these years, there’s very little I hate more.

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!

Living With Unmedicated ADHD

It’s been a while since I last talked about my ADHD so I thought it was time for a little update. A lot has happened since I was diagnosed, some of which I thought might be worth sharing…


It was a lot to process that I did my BA and have been doing my MA with undiagnosed and unmanaged ADHD but the diagnosis had me looking back over the last few years and a lot of things started to make sense: why I’d excelled in certain areas and struggled desperately in others. Part of me was impressed with how I’d done, factoring in this new obstacle that I’d been unknowingly battling against, but on the other hand, it makes me sad that I’ve had to, you know? It makes me sad that I’ve had to work against my own mind all this time without anyone noticing or supporting me – in this sense, at least. Life could’ve been so much easier.

And now I have to finish my Masters unmedicated.

Because I take Phenelzine for my depression, there’s the risk of interactions with stimulant-based ADHD medication so I can’t take those; both medications have the potential to raise a person’s blood pressure and together, that could be very dangerous. However, given the extreme drowsiness I experience as a side effect of the Phenelzine, I can’t take a non-stimulant medication either due to the high chance that they’ll add to the drowsiness. It’s hard enough staying awake and (somewhat) focussed during the day. I can’t afford to make it worse, especially in this final module of my Masters, the one I’ve been looking forward to since I started the Masters. So it looked like a dead end. But I wasn’t giving up at the first hurdle so I did what I always do: I started researching.

After a bit of searching, I found a research paper about a series of studies done, combining medications when traditional routes failed to work. One of those cases detailed a man who only responded to an MAOI (which is what Phenelzine is) and a stimulant-based ADHD medication. He had to continuously monitor his blood pressure but had no problems and continued on the two medications indefinitely, which allowed him to live a normal, productive life. That seemed very promising, as a starting point for discussion at the very least, so I sent it to both my psychiatrist (who’s been managing my medication for years now) and the ADHD specialist.

My psychiatrist was willing to try, provided I was diligent about checking my blood pressure. Despite our initial ups and downs, we have a really good relationship – and we have had for a long time now – and he always takes my thoughts, opinions, and research into consideration, which I really appreciate even if he ultimately opts for a different approach. So that felt good, like a step in what felt like a positive direction.

We didn’t get a response from the ADHD specialist for weeks. To begin with it was just frustrating but as time went on, I started to swing between despair and anger. I felt like I’d just been abandoned, dropped without a word (something that’s unfortunately happened enough times that it’s become a big trigger for anxiety attacks, episodes of depression, and even autistic meltdowns, depending on the situation); sometimes it feels so upsetting that these medical professionals can just go home at the end of the day and leave all of the struggles of their patients/clients behind while we all have to keep living (and suffering) from them. I know it’s not that simple – that they don’t just stop caring, that they can’t and shouldn’t have to work ridiculous hours – but in my desperate moments, in situations like this, it feels hard to feel supported, to believe that they do care, that you’re not just another file rather than a person struggling through each hour.

After some extra complications due to communication problems, we finally heard back and she was saying a categorical no, having had previous patients respond badly to the combination. While I can understand that, I found it frustrating that she wasn’t even open to trying it. I’ve always responded unusually to medications (proven again and again by my experiences with more than fifteen medications/combinations for my depression – the only one that’s worked is one that’s rarely used) so I was frustrated by the brick wall approach she was taking. My psychiatrist was still open to trying and said he’d talked to her about transferring the medication aspect of managing my ADHD to him since he’s been treating me for so long and has a detailed understanding of my history. But she said no.

So that’s it as far as I can tell. Unless I change my antidepressant, (I have to point out again) the only one that’s helped me, I can’t take medication for my ADHD. It’s essentially come down to choosing which of the conditions to treat, my depression or my ADHD, which just makes me feel so upset and frustrated. Treating my ADHD could make a huge difference in finishing my Masters but I’m getting blocked at every turn. It’s almost worst now than before I knew about the ADHD. Before, I was struggling; now, I’m struggling and I know why but I can’t do anything about it. The whole situation makes me so angry, so angry that I couldn’t do the most recent online appointment. I wasn’t in the right headspace and I doubted my ability to be receptive when my emotions were so all over the place.

My Mum took the meeting but it hasn’t changed anything. I’m still not getting any treatment, any support. I feel like I’ve been given this great weight to carry but abandoned to carry it without help or advice. I don’t know what to do. I don’t know how to move forward. I feel like I’ve been let down by someone who’s job it was to help me. Again. It’s upsetting and exhausting and stressful.


I don’t say these things to encourage a mistrust of doctors or because I regret the ADHD diagnosis. I just need to be honest – for the sake of my own mental health – and while I generally try to see the positive, sometimes the situation just sucks. It’s just bad and hard and makes a mess of you.