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.

Goals For 2020

So the 19 for 2019 was probably overambitious, especially considering the instability of my mental health. I just didn’t realise how fragile it really was until it crashed. A lot of this year is going to be about looking after and rebuilding my mental health. So this year, I’m going for something a little gentler: a handful of goals that aren’t super specific. They’re more about trying than achieving.

GET BACK TO SWIMMING – For a year, I swam almost everyday and I loved it. It made me feel really good in my body. But then the depression, the medication side effects, the fatigue, and the meltdowns all made that impossible. I was either too unwell or too physically weak. But I really miss it. It wasn’t possible during the first semester of my Masters (my anxiety was so high and I was having so many meltdowns that I just didn’t have the energy) and I’ve spent the holidays working on my assignments but I’m optimistic that this next semester will be a bit gentler and I’ll  have the time and energy to start building the swimming in again.

START WEARING MY INVISIBLE BRACES AGAIN – Again, I did really well at this for a while but the mental health crash derailed it and it was just one thing too much. I was going through so much during the day that pressure in my face during the night was just more than I could take. But my teeth haven’t completely regressed so at least I’m not starting from the beginning. I’m wearing them again and it’s uncomfortable and hard but I’m trying my best to focus on the end goal: straight teeth that make me feel confident when I smile.

COMPLETE YEAR 1 OF MY MASTERS DEGREE – Because of the way the part time course is set up, I only have one more semester this academic year and from what I understand of it, it shouldn’t cause me the same levels of anxiety as the last one, as much as I enjoyed it. I’m also kind of looking forward to the assessment because it’s an essay where you can write about anything music related. How cool is that?! All the possibilities! And that’s year one done so all things going well, that should be possible. I’m cautiously optimistic.

CONSUME NEW MEDIA RATHER THAN JUST FAMILIAR MEDIA – With all the mental health stuff, it’s been hard to engage with anything that isn’t safe and comforting. It’s been especially difficult in the last few months when my OCD has been so bad, because it’s hard to concentrate on something new when I’m trying to write everything down. I’m going to be working on that specifically but also my mental health in general this year so hopefully those needs won’t take up so much time, leaving some time for watching, reading, and listening to new things.

GET BACK TO THERAPY AND FOCUS ON MY MENTAL HEALTH – I only went to therapy sporadically in the second half of the year last year because my therapist and I couldn’t get our schedules to match up and because of certain things going on in our lives and although I don’t yet know my timetable for the new semester, we (me, my Mum, and my therapist) are all determined – furiously so – to make it work because I really need the support. Things have gotten really bad and I really, really need the support.

WORK ON NOT COMPARING MYSELF TO OTHERS IN MUSIC – This is probably the hardest one and a lot of the time, it feels unbearable to even think about. While I need to work on not comparing myself to others in general – in all situations – I figure that’s too big a task for such a difficult feeling so I just picked one area. Music has always been my happy place and I want it to stay (or go back to being or something) my happy place and it’s not, when I look at other artists and feel lost and sad and lonely and angry and bitter. So I want to work out – probably with therapy – how to focus on me and not worry about other artists beyond a practical, objective sense. This feels really, really hard so I don’t know if I’ll manage it in a year or whether I’ll even manage to start but I want to so I’m trying to think about it and figure out a place to start because I don’t want to feel all of these things. I want my happy place back.

So these are my goals for this year. It’s difficult to really even think about things like this at the moment because everything feels so, so hard that I just feel overwhelmed. I feel like everything chips off pieces of me and at twenty five, I shouldn’t feel so small. I shouldn’t feel like there’s so little left of me. I’m struggling and I don’t know how to keep going and I don’t know what to do and a big part of me wants to just give up but I don’t know how. How do you give up? Because life just keeps going on without you. I guess that’s why my main goal this year is my mental health because I don’t know what to do anymore.

I’ve Been Re-diagnosed With OCD

If you guys follow me on social media, you’ll know that this week, I posted about going back to therapy and being rediagnosed with OCD…

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I’m back at therapy! And this is one of my therapist’s dogs who thinks she’s small enough to sit in my lap. Anyway. I never deliberately stopped going but our schedules have been very difficult to align for a while, particularly with me starting my Masters, and so it’s been a good several months since I’ve had a session. I almost feel like I’ve forgotten how to do it, do therapy. But I’m back and hopefully it will help with my anxiety, which has been severe for a while now. And on that note, I’ve been rediagnosed with OCD! I’m gonna write more about this in a blog post soon but this is really good for me. I have a plan of action. It’s gonna be a long road and I am anxious about it but I feel better knowing what the treatment options are, some of which I’m already doing. So despite feeling very unwell, it’s been a positive week. It’s progress.

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So, that basically explains what’s been going on with therapy (I’ll update you on all of that as I continue with therapy) but I wanted to talk a bit more about the OCD diagnosis because that’s kind of a big deal.

Back in 2016, I was diagnosed with depression, anxiety, social anxiety, OCD, and BPD. And then I was diagnosed with ASD. But in the last year, my psychiatrist reorganised my diagnoses and decided that the symptoms he’d originally seen as OCD fell under some of the other diagnoses, particularly the ASD. But recently, it’s become very clear that it really is OCD.

If you remember this post, I talked about having a massive meltdown, which triggered daily, multiple meltdowns. It was awful and one of the most difficult periods of my life, mental health wise and otherwise: dealing with that and trying to manage the beginning of a Masters. It was pretty hellish. I’m not sure when it stopped but it slowly faded and I’m now only having a meltdown every couple of weeks or so – still a bit more than usual but much more manageable.

But that really triggered something in my obsessive diary writing. My diary writing has been pretty compulsive for years: I NEED to write everything down. It’s like, if I don’t record everything that happens to me, I’ll forget who I am. It’s a constant battle, but it suddenly went from manageable to completely overwhelming. It takes up all my time or it would if I didn’t have all this research to do for my Masters. So these two things are  constantly pushing up against each other, which causes me a lot of anxiety. But the diary writing usually wins, which only causes me more anxiety, anxiety that I’m going to do badly in my Masters. And even though I know all of this, I still can’t stop writing. And because there’s more life than there is time to write, I’m just getting more and more behind. More anxiety. So I’m just a big ball of anxiety. It’s like a snowball rolling down a hill, getting bigger and bigger and going faster and faster.

It took forever to get an appointment with my psychiatrist (so the anxiety has gone on a lot longer than was necessary or fair, in my opinion), but eventually I got an appointment. And of course, the time was then changed last minute, the sudden change of plan sent me spiralling into a meltdown. So it took a long time but I finally saw him and we talked about all of this in great detail and he decided to re-diagnose me with OCD. I’m so relieved because now it has edges; it’s not some vague, amorphous cloud of stress hanging over me. A diagnosis gives me something to work with.

We talked about the treatment options, medication and therapy. Medication wise, I’m already taking the things he would recommend so that’s that avenue covered. I don’t know much about the therapy route yet. As far as I know, I’ll have to reduce the writing bit by bit, which – in itself – is going to create more anxiety. Hurray. Not. It’s the whole ‘it’s gotta get worse before it gets better.’ But now I’m back in therapy and I have an amazing therapist so although I’m terrified of even more anxiety, I know I’ll have thoughtful, compassionate guidance. I don’t know when we’ll start because, as my psychiatrist pointed out, right before a set of assessments isn’t necessarily the most productive or helpful time to do this sort of stuff. But even though I’m scared, I need to start working on this soon or every semester is going to be like this one: a daily battle of OCD versus real life. And I really, really don’t want that.

Grateful 2018

Last year, I posted on Christmas Eve about the things I was grateful for (here) and I really liked it as a practice. Since we don’t have Thanksgiving in the UK, there’s no holiday directly related to being thankful and I think it’s important to make time to think and feel these things. And I always feel overwhelmed by how lucky I am at Christmas so this seems like a good time to do it, to do this post.

My family – I am endlessly grateful to my family. They have loved and supported me through some really difficult times this year and even though that’s what family should do, I’m so, so grateful to them for doing that. I don’t take them for granted. A particular shout out to my Mum for going above and beyond. She’s my hero.

My friends – I am also endlessly grateful to my friends. I haven’t seen as much of them as I would’ve liked this year but I’ve been doing my best to stay in touch. They mean so much to me and I hope they know that. Again, a particular shout out to Richard because he has been incredible this year, supporting me as a friend and a writing partner. I’m more grateful than I can say.

My therapist – I’ve said it before and I’ll say it again: I am so grateful for my therapist. My depression has been brutal this year and there were more than a few moments where I had no idea how I was going to survive (I say that like it’s over and I’m not sure whether it’s over or not). I absolutely wouldn’t have made it through that without her.

Song Suffragettes – If you don’t know what Song Suffragettes is, prepare to have your musical life changed. It’s an organisation in Nashville that focuses on boosting the up and coming female songwriting talent and they have weekly shows showcasing these awesome women. I was lucky enough to join them on my last trip to Nashville and it was definitely the best day of my year (and one of the best in my life). Everyone involved is so lovely and they are doing such important work. Check them out on Twitter here.

Claire Wineland – I’ve written about Claire quite a bit (here, herehere, and here if you’re interested) but she’s been on my mind a lot. I miss her – her presence in my life – more than I know what to do with but I am so grateful to have had her at all. That doesn’t make me okay with what happened (not at all) but I am grateful. She was an incredible human being and she’s still helping people even though she’s no longer here.

Flowers – This is a simple one but having beautiful, colourful flowers around improves my mood and improves my day. In a year that’s felt very dark and colourless, having flowers in the house has made a noticeable difference to my day-to-day life.

My bullet journal – Having somewhere to organise my thoughts and my life has been so helpful. Up until now I’ve never had a system that really worked for me so this is a big deal. I’ve written more about it here.

Lauren Kaech – I discovered Lauren on YouTube earlier this year and I have found her videos and her attitude really inspiring. I talked about her in my post about social media favourites and she makes videos about her experience of living with an eating disorder. And while that’s not an experience I can directly relate to, there are aspects that I can. She talks about facing the things that scare you, the realities of happiness, and a whole host of recovery related topics that apply to anxiety and depression as well as eating disorders. I’m so grateful to have had this in my life this year and at my very worst (in the very worst of my depression), looking forward to her videos got me through the day and kept me going.

Swimming – I’ve written a whole post about this (here) but I wanted to include it here because I’m so, so grateful for it. Almost every morning, I get up and go to the pool and do something that makes sense. Even if the rest of the day doesn’t, that does. I’m also really proud of myself for keeping this up for six months, especially given how bad my depression has been.

Taylor Swift – Miss Swift was on my grateful list last year and the reasons are all still relevant. But this year, I got to see her live (twice!) and that experience was so much fun in the middle of a really dark place. I felt all that weight lift for a couple of hours and that is a big deal. I’m also really grateful to her for voicing her political opinions (breaking her career long silence on the subject) and encouraging young people to vote. In the twenty four hours after she made her Instagram post on the subject, 65,000 people registered to vote, which is just incredible. It made me really proud to be a fan. I don’t think I can say more than, as always, I am grateful for Taylor Swift.

So there you have it. I could write more – there are so many things to be grateful for – but I’ll stop there. I’m wishing you all a safe, happy, and healthy Christmas and I’ll see you in the next post.

My Experiences with Therapy

Going to therapy hasn’t always been easy. I feel so, so lucky to have such an amazing therapist now but I had a lot of difficult experiences before I started seeing her. So I thought I’d share some of those experiences. Maybe they’ll be helpful.

After many, many appointments with my GP, I was finally referred to the local NHS Wellbeing service but the session didn’t go well. At this point in time, my anxiety was so bad that I couldn’t talk to people I didn’t know. I just couldn’t. Answers to questions would form in my mind but I couldn’t force them up my throat. So I sat there, in tears, while the doctor tried to get my Mum out of the room and told me he ‘wouldn’t’ help me if I didn’t talk. I don’t want to rant but I WAS STRUGGLING WITH A MENTAL HEALTH PROBLEM. I wanted desperately to be able to talk about it but I couldn’t. I don’t remember much about that appointment but I do remember standing in the street afterwards, shaking and crying and screaming and swearing. I couldn’t understand why no one was helping me when there was so clearly something wrong.

My second attempt at therapy was a bit better. I started Cognitive Behavioural Therapy (CBT) with a really lovely therapist. She was very patient and very open to working around the anxiety that kept me from talking. She was also happy to have my Mum in the room: it helped my anxiety and meant she could provide information. Slowly I started to trust her and started answering questions myself. But it was exhausting, bone achingly exhausting. As hard as we worked, I didn’t feel like we were making any progress and it was too hard to go through that to make no progress. I really liked her and I could tell that she was a really good therapist but the approach wasn’t right for me. I found the format too rigid. In simple terms, CBT is about breaking down your problems and then trying to create change in those areas. I felt, and still do feel, that my problems are too murky for a short stint of CBT. I know now that many of my problems originate from my Autism and the fact that it went undiagnosed for so long but even with that knowledge, the difficult things still feel overwhelmingly huge. I can see CBT being useful for a specific anxiety. For example, we tried to work on my anxiety around making phone calls. But I think the reason it didn’t work is that it wasn’t an isolated problem; it was a piece in a much bigger puzzle. I don’t think you can solve that sort of problem if you don’t know what’s causing it. Plus, being rational about what you’re struggling with in the controlled setting of therapy and being rational when it’s overwhelming you are very different things. CBT sort of assumes that you can still apply the skills you’ve learnt in therapy regardless of how you’re feeling, which can feel impossible, especially if you live with really powerful emotions. But maybe that’s just my perception.

The next thing we tried was Eye Movement Desensitization Reprocessing (EMDR), recommended by a family member. In the few months between finishing CBT and starting EMDR, my anxiety had sky rocketed so starting a new therapy was really hard. It was so bad that I actually never spoke to the guy I worked with. But despite that, and my difficulty with eye contact, communicating with him was easier than it had been with previous therapists. He was fantastic. He accepted my difficulty speaking and suggested writing on a whiteboard. I considered that and it felt possible so that’s what we did. He asked me questions and I replied, scribbling as fast as I could. It worked. And to take the pressure off, we would spend part of the session on the floor, playing dominoes while he asked me questions. I felt absolutely safe there. It was incredibly strengthening to have someone accept my anxieties as they were, to have someone recognise that I wasn’t just being difficult, that I was genuinely struggling with something really hard. And although it didn’t turn out to be the right thing for me, the sessions are still really important to me. For several months, we worked hard. We tried. I felt supported. And even though I didn’t ever speak, I did once sing for him and he almost cried. That was a pretty big moment.

After that, I didn’t go to therapy for a while. There was a lot of life stuff going on and there just wasn’t the time to find someone new. But I did start seeing a new psychiatrist. He prescribed me Phenelzine (which I’ve previously written about) and we spent a lot of time trying to figure out what was causing my problems. I guess it was a type of therapy. We went through my history and analysed my emotions, trying to find a diagnosis. The medication helped and we managed the side effects but it still took a long time. When my university said that they couldn’t help unless I had a diagnosis, I pushed for this and in January 2015, I could finally put names to the issues I was struggling with (apart from the Autism diagnosis which came several months later). My psychiatrist recommended Dialectical Behaviour Therapy (DBT) so we started looking for another therapist.

My current therapist is the first one we met. I just knew she was right; me and Mum walked out, looked at each other, and said, ‘she’s the one.’ We did meet another one but my mind was made up. And we were right. She’s amazing. I’ve been seeing her for three years now and I’m so grateful to have that safe place. DBT suits me much better. It’s based on CBT but, as the Mind website says, it’s “been adapted to help people who experience emotions very intensely.” They both help with changing unhelpful thoughts and behaviours, but DBT also helps you to accept yourself. It’s about a balance between acceptance and change. That really makes sense to me and always has.

In the beginning, I needed my Mum in the room with me and she would answer all the questions. We’d always talked about everything so she knew pretty much all the answers. But over time, I felt more comfortable there. I needed Mum there less and less and eventually I started doing the whole session by myself. Three years later and it’s really, really important to me. It’s a huge part of who I am. It’s not easy; it’s really hard work and I often come home exhausted, sometimes falling asleep on the sofa afterwards. But it’s really satisfying to talk things through, to make connections, to see change happen. I’ve talked about things that I never, ever thought I would talk about and I’ve worked through things I never thought I’d let go of. That’s so huge that I can’t really comprehend it.

So that’s my therapy journey. For me, it’s DBT that works but I’ve seen the others help people too. You need to be ready, you need to find the right approach, and you need to find the right person. It’s not easy but it is worth it.

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The Blurt Foundation Selfcareathon 2018

About half way through April, I discovered that The Blurt Foundation were running a campaign all about self care on social media, encouraging people to be kind to themselves with a series of prompts. Then, if you wanted to, you could post a photo of what you did under the hashtag, ‘#blurtselfcareathon.’ I scrolled through and came away really inspired; with all the stress in my life recently, I could definitely benefit from some self care.

‘Self care’ is a phrase that has many people rolling their eyes at the moment. It’s become associated with brands encouraging you to buy luxurious bath products and with Instagram photos of cosy days under a duvet, ignoring all responsibility. And yes, taking time out from your life can be a form of self care but it’s often not that quaint. It can be clearing out all the glasses that have accumulated next to your bed, forcing yourself to eat enough even when it’s the last thing you want to do, or dragging yourself to the shower to get cleaned up. It can be going through your receipts so you know how much money you have left in your budget for the week, or counting out the pills you have left so you don’t run out at a crucial moment. Self care grew from minority groups taking ownership of their health, when society dismissed their concerns. We aren’t helpless when it comes to improving our wellbeing and whether you do that by taking a day off to escape and binge watch a TV show or by researching and reaching out to alternative practitioners because you feel your health isn’t being taken seriously enough, it’s an important point to remember.

Although I didn’t complete the challenge in the traditional sense, I thought I’d share a couple of the prompts and what I ended up doing, whether I posted about it or not:


Letter

“I’ve only just discovered @theblurtfoundation’s #blurtselfcareathon; I’m very late but I’m so excited to join in. The prompt for today is ‘letter’ so here is me, saying goodbye to my childhood bedroom on Tuesday morning: I left a letter I’d written under a loose floorboard for a future resident of the room, asking them to look after it for me. Saying goodbye was really, really hard, but doing this helped a little bit.”

If anything falls under self care, it’s this. This was something I did purely to help me get through a really stressful time. I definitely want to write more about this in it’s own right but it’s definitely relevant here.

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Small Steps

“My new room doesn’t feel like mine yet and I don’t think it will for a while but today I took the first step toward turning it into a safe space for myself. Blue walls and cream carpet to remind me of the beaches I grew up on. There’s a lot left to do but it’s felt really good to start. // Small Steps – Day 22 of @theblurtfoundation’s #blurtselfcareathon.”

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Song

For the first time in a while, I picked up my guitar and it felt really good.

Support

I didn’t end up posting this as part of the challenge for whatever reason but I think it counts. My therapist and I have taken to celebrating big milestones with cake, specifically from Lola’s Cupcakes (they make the most amazing cupcakes): this one was for three years in therapy. It feels like a lifetime and no time at all. We’ve worked through some really hard moments and started to explore things that I never thought I’d say out loud. That’s a huge deal. My therapist is incredible and I’m more grateful to her than I could ever say.

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Boost

Over the past few weeks, I’ve been to several gigs (pictured: Megan O’Neill and The Shires) and they’ve all been really cool in their own ways. Live music gives me a boost unlike anything else. It reminds me of my dreams; it helps to refocus me; it makes me feel alive.

Hug

There was a prompt specifically dedicated to animals but I couldn’t resist including the kittens in more than one post. I see them everyday after all. And pretty much every moment I spend with them is self care; they have an instant calming effect on me.


This was definitely a positive experience, trying to work the prompts into each day. Self care is something that’s so personal and so we have to figure out what works for each of us. As I said earlier on, it isn’t always pretty or glamorous but taking care of yourself doesn’t have to be a chore. Something like this is a good reminder to try different things, fun things, things that fly in the face of conventional advice. Hopefully you’ll find something that helps but the act of searching is also an empowering one: choosing positive steps is healing.