Living with Autism During a Pandemic

I know that everyone is talking about this right now and I’d rather not because it makes me so anxious but there are a couple of things I want to say and then hopefully this blog can go back to being a Coronavirus free zone. I know it’s scary for a lot of people and there’s a lot of information and advice being thrown in your face so I just want to document my experience so far and write about the things that are helping me to minimise my anxiety.

I think the first thing to say is that I hate change, as I know many autistic people do. I especially hate sudden change because it gives me no time to process what’s going on, which causes me a lot of anxiety. It also messes with my emotions, leaving me feeling unsettled and sick and empty and twisted up. I can’t really explain it properly; it’s such a specific feeling.

The first big thing to happen was Tin Pan South, the festival we were going to Nashville for, was cancelled, which meant we had to decide whether or not still to go as it could be more expensive to cancel our flights. But as the news from other countries got more serious, we decided that we didn’t want to go and get stuck there so we had to make the difficult decision to cancel. I was gutted. I am gutted (we were supposed to be flying out today). I was so looking forward to the trip and to the festival that, not only was the change stressful, it was very distressing too. And then, of course, there was the stress of getting the money back. With the travel ban, we have since managed to get everything refunded or in credit but it was incredibly stressful, in addition to all the stress coming from the news about the virus. I have family who would be in serious danger if they caught it so, even though I’m in much less danger, I was  terrified of unknowingly transmitting the virus to them. I still am so we’ve all been self isolating apart from essential trips like picking up extra medication and so on.

And then, suddenly, everything started happening. All of the concerts I was going to got cancelled, which isn’t a big deal in the grand scheme of things but they are the bright spots in my life that get me through when I’m in a bad place, which I arguably am right now. So that’s been difficult, especially the suddenness, as I mentioned earlier. Then one of my best friends was suddenly on a plane home, which was very upsetting (although, of course, I understand and support her in wanting to be with her family); one minute we were making plans for the next day and the next she was messaging me from the plane. That change has been hard and I’ve cried a lot about it. Plus, just as I’ve  started to get into the groove of going to therapy again, we’re having to switch to video sessions, which I thought I was fine with but turns out I’m struggling with. And then there’s just all the not knowing what’s going to happen or how long this is going to last. So there’s been a lot of change really fast.

I actually feel quite traumatised by all the changes. Stuff like this always messes with my head and with my emotions and I end up feeling like it’s causing brain damage, like parts of my brain are being permanently warped and will never recover.

The week after all of these changes happened (most of them happened over the weekend and into the Monday), I wasn’t going to go to uni. Many of my friends and classmates weren’t going, having gone back to their families abroad and within the UK, and I just couldn’t bear to be there and see it without them all with so little time to adjust. I just felt so unsettled and restless and anxious. I don’t think I’d’ve been able to concentrate if I’d been there.

My course discussed it through our WhatsApp group (we’re a small course) and ended up emailing our programme leaders to say that we didn’t feel safe and that we didn’t feel it was responsible for us all to be there, to travel in on public transport, and so on. Very few people went to the classes and I think it was later that day that it was announced that the course would be moving to online classes. I’m yet to see how smoothly that goes. They’re not moving our assessment deadlines, which many people are very upset about, something I definitely understand. There are a lot of reasons to feel an extension is necessary. My mind changes from hour to hour; I don’t know whether I’d want an extension. Yes, there’s massive anxiety affecting my life that makes it hard to work but at the same time, we don’t know how long it’s going to go on for and I’d rather just get the assessment over, if that makes sense. I don’t know. I don’t know what I want.

Me and my Mum – my household – are self isolating, apart from necessary trips out (getting the necessary supplies to stay in, getting supplies for the cats, getting what we need to allow us to work from home, and so on – making it possible to self isolate for as long as we need to). It’s weird: I usually spend days at a time inside but suddenly I’m really claustrophobic and restless and anxious and it’s been less than a week. I don’t know where that’s coming from. Maybe I’m just so full of anxiety that everything is making me anxious.

So, having said that, I wanted to list for you a few of the things I’m doing to try and minimise my anxiety:

  • Keep a routine – I’m not talking about being really ambitious. If you’re like me and you struggle with Autism and/or mental health problems, diving into a really ambitious schedule just means I end up crashing and burning and then feeling terrible. So when I say ‘keep a routine,’ I’m talking about the little things. I’m talking about getting up at a reasonable time, showering, remembering to eat, getting fresh air (even if it’s only opening the windows and getting out into the garden, if you have one)… Things like that. Yes, it’s motivating to be productive so if that feels possible, go for it, but it’s also important to be gentle with ourselves during a time of such great stress.
  • Keep to a regular sleep schedule – With nowhere to go (if you’re self isolating), it’s easy to just stay in bed, get up late, and then end up going to sleep at four in the morning. It’s really, really easy. But I’m trying to go to bed at my normal time and get up early, like I do everyday. It’s much better for my mood than if I stay in bed for hours. A regular sleep schedule is actually proven to reduce stress, help you to avoid getting sick, help you think more clearly, and a multitude of other things, all useful at a time like this.
  • Stay on top of my medication – This is a fairly obvious one but if you take medication, make sure you’re stocked up and that you take it diligently. I take a regular antidepressant, a regular anti-anxiety, and then I have an anti-anxiety to take as needed. And, as you can imagine, I’m needing it a lot right now. So I’m constantly listening to my body so that I’m aware of when I need to take it as early as possible, so that I avoid the unnecessary anxiety. Of course, there’s huge anxiety going around but there’s also anxiety that we don’t need to feel and if we can avoid it, then I’m all for that.
  • Start and end the day with something calming – I’m dealing with a lot of anxiety (as we all are) so I find it helpful to start and end the day with something that relaxes me. For me, this is usually writing my diary because it empties some of the stuff out of my brain and helps me feel like I’m not trying to hold onto so much. It’s all safe, but I don’t have to actively hold it in my head. So letting some it go is like being able to breathe deeply again.
  • If the news is too much for you, ask someone in your support system to keep you up to date on the important announcements – My anxiety has always been triggered by the news and it’s even worse now so my Mum listens to it, filters out all the noise and fear and things I don’t need to know and gives me the important, relevant information. This has been so helpful since there’s been so much confusion and misinformation and fear mongering. If this isn’t possible for you, check your national news once a day and then try not to look at it again. Because there isn’t as much information as there is news time, there’s a lot of speculation and opinion and it doesn’t do any good to get sucked into that spiral if you’re already really struggling with anxiety.
  • If you have to work or study, try to do it in manageable chunks (which will be specific to you) – As I’ve already mentioned, I still have an assessment deadline. I still have an essay due. So, even though I’m really struggling to focus because of all the anxiety (which means it’s taking so much longer than it normally would), I’m trying to work on it everyday so that it doesn’t pile up and so I don’t end up overloaded and overwhelmed (it hasn’t helped that I’ve had multiple problems with my laptop in the last few weeks). It’s hard, especially since it’s now much more difficult to get help with it, but hopefully the slow and steady approach works.
  • Indulge in simple things that improve your mood – This is not a trick question. If there’s something simple that makes you feel better, let it make you feel better. Some of the things that boost my mood (even temporarily) are having the fairy lights on, burning my favourite candle, spending time with my cats, watching my favourite movies and TV shows… You’re allowed to feel good, to try and feel okay even in the face of this big, scary thing and if something really simple does the job, then go for it.

If there was ever a time for looking after yourself mentally (and obviously physically), it’s now. I hope some of these tips are helpful and let me know if there’s anything that you find helpful in stressful times such as these. As I said at the beginning, hopefully this blog can go back to being a Coronavirus free zone after this post because I know it’s triggering for a lot of people, myself included. But if I find any helpful resources for getting through this, I’ll definitely share them because I figure we could all use all the help we can get.

A Week in My Life (February 2020)

So I thought it might be fun to document a week in my life, both as a person with mental health problems and Autism and as a person doing a Masters in songwriting. So recently, for a week (one of my more interesting weeks), I took notes on each day so this is those days collated, a week in my life right now.


MONDAY

My Monday started at home in Brighton (doing origami for the #30dayfeb) but I was hugely nervous (and excited) because I was playing my university’s songwriters’ circle that evening. And what made it extra special was that it was the LGBTGIA+ History Month Special. I proudly come from a proudly LGBT family and identify as queer myself, although that label is as far as I’ve gotten. When your mental health and Autism take up your whole life, there’s not a lot of time for figuring out your sexuality. I haven’t talked about sexuality on here much because I felt like I needed to know specifically what I identified as (gay, bisexual, pansexual, asexual, etc) before I said anything but now I’m thinking that not knowing yet is also important to talk about. I don’t want to do too much of that here though because I think it deserves its own post.

Anyway, I was nervous but also really excited.

I caught the train to London and the tube to uni where the songwriters’ circle was being held. I met Richard (Richard Marc, my best friend and writing partner) there and we practiced for a bit: we were playing a song we’d never performed before. So we worked that out, ran through it until we were confident with the performance, and then went to get food before going back for our soundcheck. That went well and we met everyone else who was playing; they were all absolutely lovely.

The special guest was an alumni, RIS, described as: “an up-and-coming Sofia-born electropop artist based in East London. The queer singer-songwriter’s brooding vocals bring euphoric melodies to life over dramatic alt-pop tracks, rich with sizzling synths and sonic ear candy.” They were really lovely and I absolutely love their songs: I can’t wait for them to release more.

The other students, Lea Frances, Francesco Pio Ricci, Becky Kerly, and our host tutor, Anjali Perin, were all amazing and interesting and different and it was a really  incredible experience to be a part of. You can actually listen to the whole circle here and hear everyone’s beautiful music and stories. There’s something strangely spiritual about a songwriters’ circle and I hope you can feel that without actually being there. Speaking for myself, it felt magical and exactly how songwriting and songwriters’ circles should feel: a coming together and sharing of stories, of songs, and of souls. And holding it in a music university, getting a sing-a-long isn’t difficult and that’s one of, I think, the most special things you can experience as a songwriter, as a performer. The whole event was so wonderful and I felt so lucky to be a part of it.

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TUESDAY

My lecture didn’t start until eleven so I got a bit of a lie in after the late-ish night and all of the emotion but then I had a bit of a headless chicken morning, running around, back and forth, getting ready and packed up for uni. But I made it on time, a little early even so I got to chat to my friends. It felt like a very weird morning: I just felt super emotional and like crying at every little thing. It was hard work to stay composed.

The lecture covered the grading criteria for the assessment essay, which was really helpful. I find the language really confusing so going through it with a tutor explaining it in detail and in real, human language made is much more accessible and easier to understand.

But the main part of the lecture focussed on Max Martin – we cover one songwriter a week and look at techniques they use and so on. It’s really interesting, especially because they’re all really different. So, for Max Martin, we focussed most on melody, syllable count, and melodic math: a device used to make melodies really tight and memorable. It was fascinating, especially to someone who puts lyrics before melody. I don’t know if I could ever do it consistently because lyrics are so important to me but it’s definitely something I’d be up for trying out, just to see what the result sounded like.

Then I have a four hour break before the next class but I spent some of it hanging out with my friends, an hour at a meeting about the upcoming Nashville trip, and then two hours writing with one of my best friends on the course, Luce, while our other friend, Sharné sat in the room with us and worked on some of her own work. We worked on a song for a couple of hours, getting quite methodical and looking at the deeper message of the song and so on but I don’t think either of us were in quite the right frame of mind to write so the three of us just ended up talking. They’re such lovely people that talking with them, whether it’s about random stuff or intense, emotional stuff, the conversations mean a lot to me.

The second and final class of the day was the workshop, where we play songs we’ve written based on the previous week’s artist’s techniques. A lot of people don’t turn up, presumably because it’s not assessed and they need the time for other things, so it was just me, Luce, and Sharné, which was actually really nice. There was a lot of time for feedback and I really enjoyed working on their songs and my song more intensely than we would usually have time for. They had both written great songs, both of which I really loved.

My only complaint about the classes is how cold the classrooms are. They’re absolutely freezing, so cold that we’re wearing our coats, scarves, and gloves in class. The air conditioning is on even in December and January. We’ve asked them to turn it off but there’s been no change. Especially on a day when I was very emotional, being so cold just made me want to cry.

Fortunately, my Mum was working in London and the end of our days coincided so she picked me up and we drove home together, catching up about our days. We got home and I was so exhausted that I went straight to bed. It had been a long and emotional couple of days.


WEDNESDAY

After my busy Tuesdays (and this busy Monday), I take Wednesday as a rest day. And I tend to work on at least one weekend day. I might technically be doing my course part time but I have to be very flexible about the way I work because of Autism and mental health problems cropping up and making work difficult. I can’t write a song or research an essay if I’m recovering from a meltdown for example. It sucks, because it means I have to plan my life very carefully to allow for these problems but also be very flexible in case they do. It’s so frustrating. I hate it.

I did my origami and then spent the day bouncing between writing my diary and the continuation of moving my songs all into one notebook. They were very calming tasks. I tried to work on a song but just couldn’t make my brain work (I think I was too tired) and then, when I gave up, I lay down on the sofa and accidentally had a three hour nap.

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All of the cats!

I finished the day having dinner and watching Law and Order: Special Victims Unit with my Mum (it’s the show that just the two of us in the family watch). It was very relaxed and really nice to spend some time with her.

I had had serious anxiety about the work I have to do all day but had been managing it with Diazepam. It’s something I deliberately try not to think about on rest days because they’re my weekend where I have fun or recharge. I’ll spend the other days of the week working on those things but rest days are for resting. It’s still hard to shut off that anxiety though, even with the Diazepam.


THURSDAY

As had become my pattern, I started my day with my piece of origami for #30dayfeb. On this day, it was another bird. I did a lot of birds. They were pretty and not too challenging (I wanted challenging but some of the origami tutorials I watched were virtually impossible for a beginner like me).

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Most of my morning involved going to therapy. It ended up being a very intense, upsetting session – therapy can be a bit of a funny paradox because if you leave feeling exhausted and drained, chances are you’ve worked really hard and done some important work; you’ve just got to look after yourself afterwards. We were talking mainly about a difficult relationship in my life and how to handle it as well as my OCD and how it’s affecting my Masters work. Trying to control it enough to get the work done is gruelling and exhausting and sometimes it feels just too hard. It spiralled into harder and harder stuff and I ended up in tears. Getting myself together to leave was a struggle. And then, to make things worse, the cab I needed to get home didn’t turn up and I was left waiting in the rain for half an hour, until my therapist came to check on me. She lent me her phone and I called another one.

I eventually got home and called my Mum at work, sobbing down the phone because it had been just too much after a difficult session. Plus changes in plans really throw me. Talking to her managed to come me down a bit and I felt a bit better when we hung up. I was tired enough to sleep but my brain was whirring too fast so I was still awake but groggy when Mum got home.

We had some dinner (and some red bull) and caught the train to London. We were going to see Waitress again, mainly so that I could try and meet Sara Bareilles after the show. She’s had such an impact on my life that I just really, really want to meet her and thank her. And getting to see the show again isn’t exactly a hardship. I love the music, the cast is fantastic, and the story always inspires me; it makes me feel like I might end up happy, even if it’s not in the way I expect or currently want it to. That’s big for me. And Sara is just amazing. She just is Jenna. She’s plays the part like it was written for her and she sings like Jenna is a part of her. ‘She Used To Be Mine’ is one of my favourite songs ever and there’s something magical about hearing her sing it live. This show is so important to me and it always will be.

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Sara’s bow!

We rushed outside to see if I could meet her and we met some of the other cast who kindly chatted with us and signed my ticket but Sara herself didn’t appear. After a while, the security guard said she’d left but I was reluctant to just go, having been told the same thing in the past and gone home only to see people posting selfies with her on Instagram. But this security guard had been really nice to us earlier in the night – so I felt I could trust him and his explanation – and he told us that she had an early engagement the next day and so she’d had to leave straight away (as it turns out she was on This Morning the next morning so it was entirely true). So we went home. We have one more opportunity to meet her before her run ends so hopefully I’ll get to meet her then. I know a lot of people don’t get my dedication to seeing shows more than once (I often get overwhelmed mid show and so seeing them multiple times allows me to get the full experience – and why would you not want to see a show you love more than once, especially if it’s only on for a limited time?) and meeting the artists but they’ve really shaped my life and therefore become part of my life so it feels important to connect, even if in the tiniest way.

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Marisha Wallace (who plays Becky – she has an incredible voice and is utterly hilarious) signing my ticket.

We caught the train home and fortunately got back not too late, considering we’d waited afterwards (I appreciate that they hadn’t just left us waiting in the cold). I went straight to bed and was asleep in seconds.


FRIDAY

I did my origami (an apple) and then spent the morning doing some reading for my Masters, working on my songwriting book when I needed a break. It was very gentle and chilled after the emotional day and late night from the day before – the perfect antidote.

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Lucy keeping me company.

I had a late shower but ended up sitting on the bathmat, sobbing because there’s just so much sadness in me. There’s so much sadness, past and present, happening in the world and to the people I love. It overwhelmed me and I just got so upset. It happens sometimes, quite a lot in fact. I’m an emotional person but I’ve been particularly emotional recently.

In the afternoon, I had an appointment with the doctor. Mum always comes with me to these appointments, especially with doctors I’m not familiar with (the Autism specialist doctor has been away), in case I get overwhelmed and because she knows my mental health and Autism history really well, sometimes better than me. We talked to the doctor about the pain I’ve been having from my fingers to my shoulders (I was, at that moment, having some really bad pain in my hands and left shoulder), which is obviously cause for concern. We talked about support for people with Autism, which there still seems to be a distinct lack of, plus several other things. I found it very unhelpful and distressing but Mum seems to think that the information we got, good and bad, means movement – in her plans and research, I suppose. So I guess that’s something.

To cheer me up, we went home via the nearby pet shop. We need to replace the cat tree/scratcher so we went to look at the ones they had and there were some possibilities but we need to do some measuring before we commit and buy one. But we did buy a couple of little cat toys, mainly to make me happy: a little unicorn and a little Grumpy Cat (we try to avoid buying toys that look like real animals so that they don’t give us a huge shock, thinking the cats have brought in a mouse or something). They’re really cute.

The unicorn toy and the Grumpy Cat toy.

Then we came home and had a gentle evening. I did some reading for my essay and then me and Mum had dinner in front of SVU. When I finished eating, I did some diary writing. It was an attempt at calm but I was still very anxious, even taking Diazepam. I’d intended to go to a friend’s gig in London but I just had too much pain in my hands, arm, and shoulder that I just couldn’t do it. I felt so bad because it’s been so long since I’ve been to one of her shows and I felt like a bad friend for ‘not supporting her.’ I could’ve managed the show but the travel just made it too much. I felt really guilty for not going, something I struggle with a lot – guilt, that is. So it was a difficult evening.


SATURDAY

I spent most of Saturday songwriting (after doing my origami). I tried to write both with a pen and on a computer – diary, blog writing, or research – but my hands felt thick and stupid (which we think was a side effect of a medication I’ve now stopped taking since it wasn’t helping and there were too many side effects – none of them serious but all of them unpleasant and unhelpful) so it was a real struggle. Playing piano was really the only thing that wasn’t difficult in that sense and so I spent a lot of the day playing, writing, and editing songs, several of which I really like.

I also put up my blog post about Lucky, which I’m really proud of.

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Me and Lucky on Christmas Day with his new toy.

Me and Mum spent some time in the afternoon and early evening talking about a presentation I have coming up, talking rather than writing since my hands were still struggling. Then we had dinner and watched some TV together. I ended up falling asleep on the sofa at seven because I was so exhausted by everything going on and Mum had to all but drag me off the sofa and steer me to bed.


SUNDAY

I woke up stupidly early (at half past four) and couldn’t go back to sleep as hard as I tried. Eventually I got up and moved to the living room, putting the TV on low and getting to work: sending emails, social media messages, and so on. I’m better in the mornings, more awake and less anxious, so those things feel easier.  I organised my diary and did some blog writing. It was a productive start to the day, despite the painfully early start.

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Mouse keeping me company while I worked.

Once Mum was up and we’d had breakfast, we did some house jobs (such as fitting the new cat flap) and I talked to a friend who was very upset before getting down to work on my presentation. I’d been talking to various people since it was set as an assignment so I felt prepared when I sat down to make the presentation slides. I spent the day working on the slides and beginning a script for what I was going to say.

In the evening, I ran it past Mum (who does a lot of presenting as part of her job) and she critiqued it for me. Then one of my other parents came over and we had dinner in front of Tim Minchin’s Orchestra Tour DVD. He’s truly an incredible musician and performer.

It was a productive day and I went to bed as late as I could manage – about ten o’clock – and took a sleeping pill to make sure I got a good night’s sleep.


I hope that was interesting, that it gave you a glimpse into my life. Let me know if you want more of these because it was definitely interesting to write.

Hello and Goodbye to Lithium

About a month ago, I went back to my psychiatrist. We discussed the Venlafaxine and since it hasn’t had the effect we’d hoped for, it was time to think about what to do next. The most obvious option, the one most likely to work in the shortest amount of time, was to add an ‘augmenting agent’ and so I started taking Lithium. I’m aware of the perception of Lithium but it didn’t worry me, not any more than any other medication anyway. I’m always hopeful that a new medication will work, and if that comes with the opportunity to defy expectations then it’s even better. So I was feeling optimistic and, as I did with the Venlafaxine, I took notes so that I could track any progress and/or side effects.


FIRST NIGHT AND NEXT DAY

As the first night and then day was pretty interesting, I thought I’d write this one up separately. I slept restlessly and woke up multiple times with night sweats. The first time I woke up was very surreal: I was overwhelmed by the physical sensations in my body. I remember thinking, “I can really feel my hands. I really have hands.” It was very strange. I struggled to get back to sleep and when I got up in the morning, I felt very nauseous. I had a headache all day and by the evening, I felt very spaced out and tired.

WEEK 1

The restless sleep and night sweats continued, joined by complicated and busy dreams. I found it very difficult to wake up and I was so sleepy that I was falling asleep multiple times during the day. When I was awake, I was tired and weak, like there was no strength stored in my body. It was frustrating and upsetting to struggle to do everything I would normally do. I was spaced out and nauseous and shaky; if I stood up for more than about thirty seconds, I got dizzy and nauseous and my vision went white. It was horrible.

WEEK 2

I was still having difficulty sleeping and was struggling with sleepiness during the day. I continued to struggle with nausea and feeling spaced out but I also felt low; I think I would’ve felt depressed if I was able to really feel anything. The shakiness and weakness also continued.

WEEK 3

And we STILL have difficulty sleeping. It was taking me hours to get to sleep and hours to wake up and in the few hours between, I slept very restlessly. Then when I was awake, I was very sleepy. The shakiness, weakness, and nausea combination was still around. I also started to struggle with almost constant anxiety; there were stressful things going on but I couldn’t seem to shake it off once I’d done those things so it was around all the time.

WEEK 4

Continued difficulty sleeping, especially staying asleep and then I was so tired that I fell asleep during the day. Those short sleeps were actually the best I’ve had in months, much better than the hours I got at night. I was also still struggling with the shakiness, dizziness, and nausea, as well as the anxiety.

WEEK 5

The restless sleep continued, as did the struggling to wake up. On several occasions, I fought to wake up only to fall asleep again; I also fell asleep during the day multiple times. I was constantly tired. The nausea and dizziness also continued, as did the anxiety.


I did not like taking Lithium. It didn’t actually help my depression – I’m still feeling very emotionally numb and the fatigue has only gotten worse – and the side effects were constant and actually got worse over time: the difficulty sleeping, the shakiness/dizziness/nausea combination as well as all of those as separate symptoms… I was struggling so much that I had multiple doctors’ appointments to make sure that nothing else was going on. I had blood tests and blood pressure tests and even an ECG. They didn’t show anything outside the normal ranges but the fact that it was bad enough to warrant those tests meant that I booked an appointment with my psychiatrist for as soon as possible to look at my medication.

I have now had that appointment and we’ve decided to stop the Lithium; he was surprised and impressed, I think, that I’d stuck with it so long considering how bad the side effects were. Since the Venlafaxine hasn’t done much for me, I’d like to try something else but given how much is happening in the next couple of months, I’m reluctant to put myself through the ordeal of getting off it, the period of no medication, and then getting onto something new. So for now, I’m trying a new augmenting agent and I guess we’ll see how that goes. I think the emotional numbness is preventing me from getting too low about anything but regardless of that, I’m still optimistic about medication, even with all the bad experiences I’ve had recently. I fully believe that it was Phenelzine that made going to university possible and even now, years later, I still remember so clearly how good I felt when I started taking it. It felt like I was flying. It was amazing. Searching for that will always be better than letting the depression take over, even if I have to let it take over to remember that.

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The Weird World of Anxiety Dreams

I have experienced anxiety dreams, in one form or another, for most of my life. I don’t know very much about the science behind dreaming but as I understand it, we tend to have anxiety dreams when we’re trying to cope with stressful stuff, or they are our brain’s way of telling us that we need to deal with something. Some of the common ones include losing something important, finding yourself naked in public, being chased, and scenarios involving the end of the world. I have had all of these at one point or another so I thought I’d write down the ones that stick out most in my mind and put them out into the world. Maybe some of you guys can relate.

The first anxiety dream I remember having was about being trapped in a car. The car was sitting at the top of a hill, on a street I knew well, and then it suddenly began to roll down towards the busy main road. I was stuck inside, panicking and unable to make it stop. I always woke up before I reached the bottom but I can still feeling that suffocating fear. I think these started when I was about five or six and I had them many times for several years. Then, when I was a teenager, they changed slightly. Instead of being stuck in a moving car, I was suddenly expected to drive somewhere without knowing how, without ever having had a lesson. I don’t know why but the expectation that I could was definitely there. I would get in the car and attempt to drive and while I was initially successful, it was just a matter of time before something went wrong. This is apparently a very common anxiety dream, which isn’t surprising given that most of us hate feeling out of control.

My most common recurring dream is one where my teeth start falling out. There are a couple of different variations of this: sometimes my teeth just become wobbly and slowly fall out one by one, and sometimes they just disintegrate in my mouth and I’m spitting out fragments of enamel. They’re incredibly vivid and I’m always convinced that they’re real. I wake up breathless and disorientated. I have no idea where this one comes from or whether it means anything. I don’t subscribe to the theory that when you dream, specific things have specific meanings, but it seems pretty likely that feeling out of control in a dream links to feeling out of control in some part of your life. I still don’t know what teeth are supposed to represent though.

There’s another one that I’ve only started having recently. I’m walking into college, heading to a Maths lesson when I remember that I haven’t been to a Maths lesson in months and therefore will be expected to hand in months of late homework which I do not have. I could just not go but the exams are getting ever closer and I need to learn it all. My anxiety is just starting to spiral when I wake up and it takes me a while to untangle myself from it. If I were going to guess the meaning, I’d say it had something to do with my fear of falling behind and not being good enough. And getting into trouble. But that’s not a big leap to make.

I don’t know how anxiety dreams fit in to the picture when you live with an anxiety disorder, when you live with significant levels of anxiety every single day. Does it mean that the level of anxiety necessary to trigger the dreams is just higher? Maybe every dream we have is an anxiety dream but we only remember a fraction of them… I don’t know what the answers are. But I thought I’d put my experience out there and see if anyone relates to it. If any of you have had anxiety dreams, I’d love to hear how similar or different they are to mine.

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Tired

If I could change one thing about myself it would be my energy levels.

I’ve struggled with fatigue for most of my life. When I was twelve, I suddenly got sick and missed a lot of school. I was nauseous and so tired that even walking upstairs was exhausting. I went to the doctor, had many, many blood tests, saw various specialists but no one could figure out what was happening. No one could find anything wrong. And yet I was still very unwell. The only clue we had was that the blood tests showed I had had Glandular Fever at some point. But that was it. Months passed and we tried lots of different approaches but nothing helped. I was managing a bit of school but it was only a handful of classes a week and even that exhausted me. I basically lived on the sofa, missing out on pretty much everything.

Just over two years in and someone suggested something called the Lightning Process. It sounded strange but I was desperate so we said yes. It’s a fascinating idea: changing the pathways in your brain to affect your body and your health. I went to the three-day training course but by the end of the second day, I knew something had changed. I felt completely different and it showed. I still had very low stamina but somehow I had more energy. It was like a switch had been flipped. I went back to school and although I did still struggle a bit, it was so much better than before.

Everything seemed normal until I was eighteen and doing my A Levels. The stress was overwhelming and before I knew it, I was drowning in exhaustion. Somehow, I made it through my exams but my mental health deteriorated to a point where I couldn’t start the next course I’d planned to do. I struggled with both anxiety and depression and my fatigue seemed – and still seems – to be inextricably linked. It’s not as simple as ‘I’m more tired when my mental health is bad’ but there is a correlation. Medication has helped and was one of the major factors in getting me through university but it’s still something I struggle with daily.

When I was diagnosed with ASD, I was told that fatigue isn’t unusual and sleep problems are common with Autism. Personally, I’ve struggled with insomnia but more often, I sleep long hours only to wake up as tired as when I went to sleep. It’s like sleeping is just a break between days; I don’t feel like I actually get any rest from it. I think that it’s also to do with how hard my brain is working all the time. Simply existing requires a lot of processing of information: my surroundings, what other people are saying or doing or feeling, sounds, smells, as well as my own reactions and emotions about all of those things. I have to actively process all of that and it’s exhausting. That’s a normal day. If something emotional happens, good or bad, it takes all of my energy to deal with that. To me, strong emotions are like fog and it can take days or weeks to work my way through it. Sometimes longer. I also live with a lot of anxiety, which has always done a number on my energy. That anxiety feels like a programme running in the background of my brain, using up my energy, physically and mentally.

It’s a constant struggle, a constant frustration. I know that I have less energy than the people around me but I can’t seem to change my expectations. I try over and over again to do the same amount as everyone else but I can’t sustain it. Sooner or later, I crash, completely exhausted. I’m getting better at managing my energy and building in recovery time but I can’t seem to stop myself raging against it. I can’t accept it. I feel a bit like one of those wind up toys that just keeps running into a wall. I want to do so much more than I have the energy for and that’s really, really hard to deal with. As is the long-term nature of it. You can’t just quit your life for a few days like when you get the flu or have a migraine. I’m not making light of those things – I’ve had and hated both – but the need to keep pushing forward despite feeling so exhausted and the anxiety about not making any progress wears me down in a way nothing else does. It affects every aspect of my life and it’s starting to feel like a part of me.

This makes it impossible for me to work. I’ve been extremely fortunate to get some benefits over the last few years but it’s still very, very stressful. I find it so difficult to adjust my thinking, to adjust to my new reality. I keep trying to meet the standards I’ve grown up believing I need to reach only to feel like a failure when I can’t reach them. The idea of even a part time job fills me with blinding panic because I know that I am physically incapable of doing all the tasks that would be required of me. Some days, even having a shower feels like climbing Mount Everest. I want to link to this Tumblr post because I think it explains the relationship between energy and the tasks you’re trying to do really well.

And it’s not just physical energy; it’s mental and emotional energy too. I get overwhelmed and burnt out really quickly, I think because I feel everything so intensely. A job that doesn’t account for that would have a devastating effect on my mental health and even though the world is starting to think about mental health and spread the message of putting you’re mental health first, I still feel incredibly anxious about this area of my life. I feel like having so little energy means I’m lazy. I feel like a burden for not having moved out, for not being able to be independent, for not having a job. Everyone I know has had jobs that they didn’t like and I feel like I’m entitled for wanting a job that I like and can do with the limitations I have. I feel like I shouldn’t want more than my neurotypical peers, like I should just get on with it and stop expecting special treatment. And yet, I know the limits of my mental health and of my body. These two sides keep clashing (which I’m sure doesn’t help my energy levels). It’s a horrible place to be stuck in and I can’t help but think that it’s connected to getting an Autism diagnosis so late: I grew up with the same external expectations as everyone else but a different internal capability. I know that now but it’s hard to hold onto that when the voices in my head are telling me that I’m just not trying hard enough. That one is a constant, in every area of my life.

I’ve often used being a Mac in a PC world as an analogy for Autism: most of the functions are there but they’re in different places or you have to find an alternate way of doing something. And I think it’s true here as well. When you run a programme that isn’t meant for the system you’re using, it doesn’t work as well. I think that’s a good analogy for being neuroatypical in a neurotypical world. I feel like I have not been designed for this system and so I don’t function as well as the people that have. Or maybe the system hasn’t been designed for me. It’s a chicken and egg situation. But you get my point. For whatever reason, I feel incompatible with my environment and that takes up a hell of a lot of energy.

I don’t really have any answers to this problem. I’m not even sure how to finish this post. This is something I struggle with daily and at the moment, I feel very worn down by it. I don’t want to spend my whole life planning in recovery time, replying to ‘how are you?’ with ‘tired’. I don’t want my life to be decided by my energy levels but I’m scared that it will be.

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Side Effect City

Just over a month ago, I started taking Venlafaxine for my depression. I’ve tried lots of different anti depressants in the past, many of which I had a bad reaction to, so I was nervous. Weaning myself off the Phenelzine was hard and I was very, very depressed but somehow, I reached a point where I felt ready to feel different. It was a bit like breaking the surface after being underwater. I was, and still am, desperate to feel better.

Week 1

I started on a very low dose, half the lowest therapeutic dose, so that my body could get used to it. But despite that, I felt the effects straight away and incredibly strongly. I was very nauseous. It was so bad that I couldn’t really concentrate on anything else; all my concentration was focussed on not throwing up. It made me dizzy and I was tired all the time. I did check with my psychiatrist to make sure it was okay to keep going with it and he said it would pass so I focussed on tolerating it.

The other immediate change was my sleep. I went from struggling to wake up before eleven (and I mean really struggling: it felt like I was drowning) to being wide awake at eight o’clock in the morning. It was bizarre.

Week 2

The nausea faded around the beginning of the second week, which I was very grateful for. My mood, while still pretty low, was stable, and I was still waking up much earlier than I had been able to previously. However I started having headaches and I was exhausted all the time, which made it very hard to do anything.

Week 3

In the third week, I went up to the lowest therapeutic dose. This caused a pretty dramatic reaction. For the first few days I was so tired that I fell asleep in the middle of the day, something I haven’t done in years. But despite that, I was waking up even earlier, between six and six thirty am.

By the middle of the week, I couldn’t concentrate at all. I couldn’t hold a conversation, I couldn’t follow the storyline of a forty-minute TV episode, I couldn’t even play a game on my phone… That was scary, but I couldn’t even really feel that because I couldn’t seem to process the emotion. I started to feel faint and very shaky and that went on for several days. If I stood up for longer than a couple of minutes, my legs started to shake and my hands shook so badly that I couldn’t hold a pen. That was very unpleasant.

Week 4

Most of the fourth week was lost because of severe, unexplained leg pain that had me in tears. My psychiatrist didn’t think it had anything to do with the medication and DVT was ruled out but other than that, we don’t know what caused it. I’ve been taking painkillers since and it’s been better. So that tired me out and overwhelmed everything else. But since then, the shaking has mostly stopped and I’m back to waking up between eight and nine in the morning.

This week is the first where I’ve felt different mentally and emotionally while taking Venlafaxine. I wouldn’t say I feel better but I’ve been feeling a bit lighter. That feels very strange and a bit scary. With this new lightness, I’ve been feeling a bit lost which I’ve written about here. I’ve been so depressed for so long that I can’t remember what it’s like to not be depressed. But despite all of those confusing emotions, I am pleased that this medication is starting to work. It will probably take another month or so to really know how it’s affecting me but it’s looking positive and I’m really grateful for that.