Posted on January 23, 2021
Back in October 2020, I had a long overdue blood test. I think it was actually supposed to be the test that told us whether I’d absorbed and responded properly to the iron infusion I’d had in June 2019 but with starting the Masters and then the pandemic, it had only just become possible.
Going out and going to the Doctors’ Surgery did cause me a lot of anxiety – I’m still struggling with going out and with feeling very vulnerable when I’m out – but the appointment felt very safe and very efficient. I was probably in and out in less than ten minutes. About a week later, we got the results back and my iron was within the normal range. So all good there. However, my Vitamin D levels were seriously low, so low that they wanted to take immediate action. I was prescribed Colecalciferol, a prescription Vitamin D supplement, and instructed to take one a day for ten weeks.
It wasn’t surprising to hear that my vitamin D was low. It’s not uncommon for autistic individuals to have low vitamin D levels and with the pandemic and lockdown, I was staying inside a lot more and therefore not getting as much sunlight as usual, let alone the sunlight I needed. So I wasn’t shocked. I was pretty wary about taking supplements though: my last attempt with supplements had rendered the anti-depressants I was taking at the time completely ineffective, leaving me in a deep, dark hole of depression. Even though I stopped taking the supplements immediately, the anti-depressants never worked again. So I was concerned that something similar might happen again and I’d lose the only consistent (and I use that word loosely) anti-depressant I had in my toolbox. But my doctor explained just how important it was to get my vitamin D up and despite my anxiety, I committed to taking them.
For the first three weeks, I didn’t feel any different. My sleep was as sporadic as ever and I was constantly tired, something that is very much linked with my anti-depressant medication but is also a symptom of a vitamin D deficiency. Week four passed and I still didn’t feel any change but my Mum felt that there had been a slight shift, in my day to day behaviour and my engagement in whatever I was doing. She couldn’t quantify or qualify it any more than that but she did have a feeling that something was slightly different. I was reluctant to believe her, not feeling it myself.
Weeks five and six were tough: I was constantly exhausted and incredibly depressed, although it wasn’t always noticeable, covered up by anxiety-induced busyness. I was sleeping a lot but I was still tired but by the end of that sixth week, I was starting to wonder if I felt different. It’s just so freaking difficult to tell when the change you’re watching out for is so gradual. I wasn’t sure, just cautiously optimistic.
I’d been instructed to go back to the doctors’ surgery for another blood test between four and six weeks to see how I was responding to the supplement. It was closer to six weeks given some difficulty getting an appointment but when it finally happened, it was quick and efficient, just like the first appointment.
During what was the seventh week of this period, I was still tired and sleepy but again, I was starting to think that it wasn’t quite as bad as it had been. It wasn’t drastically better but I did feel a slight – intangible, I guess – difference. But week eight gave me a real sign that things were changing. I was still fatigued easily, still had days where I was really sleepy but I suddenly noticed that I wasn’t needing to drink as much Red Bull as I had been. Ever since I started this round of anti-depressants, I’ve been relying on Red Bull to keep me awake during the day and when the vitamin D first showed up as problem, I was probably drinking three a day – more when I was commuting to university (and yes, I’m aware that this isn’t healthy and have a plan with my psychiatrist to address it, although that has been derailed somewhat by the pandemic). But during week eight, I realised that I was getting through the day on one, sometimes less. Still not super healthy, yes, but a really good step in the right direction. And if I wasn’t feeling like I needed them as much to stay awake, then I had to assume that my energy levels were improving, to some degree at least.
When the blood test results came back, they showed that my vitamin D levels were back within the normal range but still pretty low so my doctor wrote me a new prescription for the rest of the winter with potential for extending it throughout the duration of the pandemic. I’m grateful for that; it’s one worry off my mind at least.
My energy levels still aren’t great. But getting my vitamin D levels under control was never going to be ‘the fix.’ Fatigue is a constant in my life, between my anti-depressants, Chronic Fatigue Syndrome, and other health (physical and mental) problems. But that doesn’t mean I can’t improve my situation. Getting my vitamin D levels back up has helped, hopefully hydrotherapy will help, perhaps the next anti-depressant won’t have such bad side effects (whenever I have time to try a new one – mid-Masters isn’t exactly the perfect time, especially having just reached the modules I’ve been most excited for). Sometimes I need to rage and cry about the pretty constant tiredness, but most of the time I can look forward and focus on the next thing that could help.
Category: anxiety, chronic fatigue syndrome, covid-19 pandemic, medication, mental health, sleep Tagged: anti depressants, antidepressants, anxiety, asd, autism, autism spectrum disorder, autistic, autistic adult, autistic student, blood test, caffeine, cfs, chronic fatigue, chronic fatigue syndrome, colecalciferol, coronavirus, covid-19, depression, disturbed sleep, fatigue, hydrotherapy referral, insomnia, low vitamin d, mental health, pandemic, pandemic 2020, pandemic anxiety, physical health, red bull, redbull, sleep, sleep schedule, sleepiness, supplement, supplements, tired, vitamin d, vitamin d deficiency, vitamin deficiency
Posted on November 28, 2020
As opposed to my usual week-in-the-life posts, I thought I’d do something slightly different this time and zoom in on what it’s like to be an autistic student at university (one doing an MA in COVID-19 times anyway). This is obviously just my experience – as the saying goes, ‘if you’ve met one autistic person, you’ve met one autistic person’ – but I thought it might be an interesting post to write. I feel like it’s so important to share our experiences as autistic people, especially when media is being created that can be harmful to us (i.e. everything that’s been going on with Sia’s new film – I feel like I should be writing about that but I still don’t know how to; it makes me so upset that I can’t really write anything that feels articulate enough to represent the significance of the issue). So I hope this is an interesting read.
THE NIGHT BEFORE
Monday was hugely busy, with a production session, two doctors appointments, and working on the essay of the module in the spaces between. I’ve been working on it somewhat steadily but since I have a feedback session coming up, I’ve been a bit more random in my approach to writing it – fitting writing time in wherever I can or just writing about certain things as they occur to me – so that I can get as much out of that session as possible.
So it was one of those days where I barely had time to think.
On Monday evenings, the Masters course have a song sharing session between 7.30pm and 9.30pm. I’ve been a couple of times but I tend to find it too much. I’m most creative at night and so filling my head with new songs and song analysis right before I try to sleep really messes up my ability to sleep, which I have to try to do relatively early with my first class on a Tuesday at 9am. And if I don’t get enough sleep on a Monday night, I’m useless in every class on the one day I have classes. So, unless there’s a really good reason, I can’t really prioritise them.
I also find them quite hard socially: as much as doing the Masters course part time was the right thing for me, it has meant that for both years, I’ve never quite felt part of the group. There’s a handful of us in the same position and I can’t speak for them but it’s always left me feeling a bit ‘other,’ like I don’t really fit anywhere – not quite part of the group in the first year and even less part of the group in this second year. Everyone on the course is lovely but it does have a pretty big impact on the social side of the course. And when you struggle with feeling like you don’t fit in, it’s hard to feel it in yet another area of your life. So sometimes that factor just makes it too hard on my mental health. Maybe it will feel easier when one of my best friends rejoins the course in January.
So, instead, I used the time to do some more work on my essay before emailing everything required for the feedback session to my tutor (I wanted to make sure he had enough time to go through it all before we met on Wednesday afternoon). Then I tried to unwind a bit. Somehow I still ended up going to bed too late – not that 11pm is hugely late but for me, the night before a class, it’s on the border of being dangerously late.
I have a prescription for sleeping pills because my anti-depressants can cause problems with my sleep but I try to avoid them where I can. Having said that, knowing how exhausting a uni day can be, I usually take one the night before to make sure I’ve had enough sleep to give me the best chance of getting through said long uni day.
THE DAY ITSELF
I wouldn’t say I slept well and I struggled to get up but I’ve had worse nights so I just tried to push through the fatigue. I got dressed and made up and then collapsed on the sofa for a rest. Standing for the time it takes to shower, get dressed, and do my make up makes me feel weak, and lightheaded, and sick – something we’re still investigating with, unfortunately, very little progress – but getting up as early as I had meant that I did have enough time for some recovery time. It’s all down to planning. My life is dependent on planning. I also managed to eat some breakfast and take all of my pills. I’m taking quite a few at the moment – more than the ‘normal’ ones that help me maintain my mental health – because of a Vitamin D deficiency and horrible nerve pain down my left side (I’ve been waiting for a hospital appointment for the latter since about April or May, which may be my personal record for appointment waiting times).
My seminar started at nine (if you’ve read my previous university posts, you’ll remember that I’m doing all of my classes online this semester). My normal tutor (who is legitimately one of the loveliest people I’ve ever met) started the class before handing us over to a guest tutor who gave us a two hour class on arranging strings and horns. He was incredibly knowledgeable and engaging and so it was really interesting. Plus, Tiger came and sat with me for most of it, which was very nice. University with cats is a definite advantage of online lectures.
I was struggling to concentrate by the end of the class so I was relieved when we wrapped up. It was a lot of knowledge and sensory information to try to process and sort through and digest. I felt more than a bit dazed. Fortunately, the session was recorded so I can either go back and listen to it in shorter sections or go back and search for something specific.
My next class wasn’t until five so I had rather a lot of time to fill. Pre-pandemic, I’d hang out at uni and do cowrites, go to the favourite local coffee shop with friends, or work on whatever was on the list at the time but I’m finding it much harder to use this time effectively, whether that’s due to having my classes online or down to the pandemic just really screwing with my brain. Stuff that wasn’t hard before is now and the only thing I can put it down to is the pandemic, even if I don’t know precisely why. All I know is that it’s a weird time and so it shouldn’t be surprising that certain things aren’t the same as they were before. But it’s still frustrating to have such a big block of time that I could be using productively and not have my brain cooperate. Early in the semester, I ended up staring at my laptop screen, desperately trying to work on stuff and just not being able to. I got more and more frustrated and demoralised and eventually I just had to accept that this is not productive time. So I’ve been trying to come up with ways to fill it that aren’t too demanding but still feel like there’s a point to them; I don’t want to feel like I’ve wasted it by just staring at my phone or mindlessly jumping between the open windows on my laptop because that’s just not good for my general mental health. So I’ve been trying things like reading or watching new movies or TV shows – these have been good sources of inspiration in a time where I’ve struggled to find inspiration – or having a nap if I need one… Things that don’t require a lot of energy but still feel worthwhile (most of the time).
I did a quick scroll through my social medias to see if there was anything that needed replying to and then did some admin work: replying to emails, updating my bullet journal, and so on. Just as I was about to move onto something else, I got a load of notifications from social media, all Taylor Swift announcing her acoustic concert film going up on Disney+, folklore: the long pond studio sessions. That was so exciting that it temporarily scrambled my brain, in both a good and a bad way. As an autistic person, I’m really not a fan of surprise drops because I just get hit by a tidal wave of emotions and I feel so overwhelmed that I actually feel sick. I don’t want to sound ungrateful for the film because I am so, so grateful for all that Taylor has been putting out during the pandemic (her work really has been one of the things that’s helped me during this time) but the suddenness with which she’s been announcing things has been difficult because that doesn’t give me enough time to do the emotional processing that I need to do. So although I eventually settled into being really excited, I spent a lot of the day feeling painfully twisted up and anxious over the mess of emotion I was experiencing.
That did leave me floundering quite a bit, I have to confess. So, to try and take my mind off of everything I was feeling, my Mum and I caught up with the latest episode of His Dark Materials. It did help a bit. It’s such a great show; the casting, the acting, the sets, the interwoven storylines, etc are all so beautifully done. I loved the first series and I’m really enjoying the second one. I love Dafne Keen as Lyra (I so related to Lyra’s reaction to popcorn – it was freaking hilarious) and Amir Wilson as Will but I think it was Ruth Wilson as Marissa Coulter and Lin-Manuel Miranda as Lee Scoresby who really stole the show this week (pun actually not intended – if you know me, you’ll know I love a good pun). Their big scene together was just so powerful and how Ruth Wilson played the aftermath was particularly emotive.
I spent an hour or so working on a new blog post but after a while, I was just getting slower and slower and eventually I gave up and had a nap. I slept for about two hours before struggling up for my second class at five. I could’ve easily slept longer but I did my best to shake it off and concentrate on the workshop. This is where we (in this case, all of the 100% online students – the rest are blended and do the workshop in person onsite) share the songs we’ve been working on over the week and get feedback from the rest of the group. For most of the semester, we’ve had briefs each week but now we’re just working on whatever’s right for us. So, for example, I didn’t have a song to present because I’ve been working on the feedback for previous songs and the essay, rather than a new song (although I did recently write a rap, although I’m not sure whether I ever want anyone to hear it). Everyone else had songs to play though so I could still participate and give feedback, although I’m not sure how helpful I was because of how tired I was. But I tried. Some days I was just have less energy to work with than others.
I had an hour break before the evening session, which runs from seven to nine; they’re technically extra-curricular but I try to attend them when I can, especially now that they’re online and therefore more accessible. I don’t want to miss out on anything I don’t have to.
During my break, I had a quick dinner and catch up with my parents. The Grammy nominations had also been announced so I went through those. I’m super pleased for Taylor Swift: folklore is such a great album. Six nominations – Album of the Year, Song of the Year, Best Pop Solo Performance, Best Pop Duo/Group Performance, Best Pop Vocal Album, Best Song Written For Visual Media – is incredible and I’m really excited for her. Personally, I think she deserves at least several of those, especially considering the other nominees. I’m absolutely psyched for Ingrid Andress and her three nominations: Best New Artist, Best Country Song, and Best Country Album. I’ve been following her for years, having met her in Nashville at least a couple of years before her album was released. She’s an amazing writer and it would be just so awesome for her to win even one Grammy award this early in her career. But I’m concerned about her chances; she has some serious competition in all of those categories. The Best Country Song category, for example, is incredible, full of so many amazing songwriters that I love so much: Natalie Hemby (‘Bluebird’ by Miranda Lambert and ‘Crowded Table’ by The Highwomen, a group of which she’s a member), Maren Morris (‘The Bones’), and then Ingrid, of course. I want them all to win it. I was disappointed that Halsey still hasn’t been nominated. Manic is such an incredible album, as is Badlands (Live from Webster Hall), and it’s so frustrating that she doesn’t get the industry recognition she deserves. Especially given how popular ‘Without Me’ was, I’m really shocked that she’s never been nominated.
I just made it in time for the late session, which involved two of last years graduates presenting their final projects, one about using songwriting to explore different aspects of personality and the other about the experience of their gender transitioning and how sharing that story has the potential to increase understanding and empathy and break down barriers. They were both really cool projects but it was also massively helpful to see their processes, how they’d developed their ideas and researched them and how that research had lead them to writing the songs they wrote. It was fascinating and I definitely feel more prepared for my own project. I’ve got several ideas I’ve been turning over and the presentations have been helpful in my decision making process too. So I got a lot out of it, even if I was completely exhausted by the time the session finished.
It was about half nine and I probably could’ve gone straight to bed but I went and spent some time with my Mum, watching some TV together as we both wound down from the day. But it wasn’t long before we were both falling asleep so we put the cats to bed (they sleep in the kitchen so that we’re not woken up at five – the time they start demanding breakfast) and headed to bed ourselves.
THE NEXT MORNING
I’m not one of sleeping in so I always set an alarm. Then I can get up and start doing things (I have a real problem with needing to be productive) but usually, the day after a uni day, I sleep through the alarms I set. It doesn’t seem to change anything though. I keep setting alarms and sleeping through them. But that morning was special. I dragged myself out of bed at eight to watch folklore: the long pond studio sessions, as soon as it was available. It wasn’t particularly enjoyable to get up when I was so exhausted but it was absolutely worth it. The film was amazing, so amazing that I still haven’t figured out how to put all my feelings into words yet.
Since this post is just about my day at uni, I won’t write much more but just as I wrote about the Monday night, I thought I’d write about the Wednesday morning. Usually there isn’t a brand new Taylor Swift film to watch so I try to rest and recover my energy – physical, mental, and emotional – from the day before. As I said, I’m struggling with this need to be productive all of the time so with that in mind, I try to schedule undemanding tasks for Wednesdays. That particular day, I had a couple of half hour tutorials with tutors, so I spent the morning making sure I was ready for those. I’d already made notes of what I want to ask and discuss so I spent the rest of the morning going through those to make sure I felt as prepared as possible.
So, as you can probably tell, it takes a lot of planning and prioritising and rationing of energy to make it possible for me to go (or at the moment, ‘go’) to university, to make it possible to live my life in the most positive and productive (to a healthy extent) way. This isn’t an unusual day for me. While stuff like big Taylor Swift announcements and the Grammy nominations don’t happen every day, there’s often something that can cause emotional reactions like the ones described and I deal with fatigue and anxiety everyday. It’s one big juggling act. Every day. One enormous, exhausting juggling act every day.
Category: about me, animals, anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, emotions, medication, mental health, music, sleep, university, writing Tagged: ableism, anxiety, arrangement, asd, autism, autism awareness, autism spectrum disorder, autistic, autistic adult, autistic student, blog post, blog writing, cat, cfs, chronic fatigue, chronic fatigue syndrome, concentration, dafne keen, day in my life, depression, distraction, distress, emotional, emotional overload, emotional overwhelm, emotions, energy, energy levels, essay, essay writing, family of cats, fatigue, feedback, feelings, final project, focus, folklore, folklore: the long pond studio sessions, friend, friends, grammy 2021 nominations, grammys, grammys 2021, halsey, his dark materials, ingrid andress, instrumentation, lin-manuel miranda, lockdown, lockdown 2020, major repertoire project, maren morris, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, mental health, music, musical arrangement, my cats, nap, natalie hemby, nerve pain, online classes, online learning, online university, overloaded, overwhelmed, pandemic, pandemic 2020, part time masters student, part time student, prioritising, productivity, rationing energy, recovery, recovery time, rest, routine, ruth wilson, schedule, seminar, sensory information, sensory overload, sensory sensitivity, sia, side effects, sleep, sleep schedule, sleepiness, sleeping, social media, socialising, songwriter, songwriting, student, taylor swift, time management, tired, tutorial, tv show, university, visibility, vitamin d, vitamin deficiency, waiting list, workshop, writing
Posted on March 21, 2020
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:
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.
Category: covid-19 pandemic, emotions, event, medication, mental health, music, school, therapy, tips, university Tagged: anti anxiety, anti anxiety medication, anxiety, asd, assessment, assessments, autism, autism spectrum disorder, autistic, autistic adult, change, coronavirus, covid-19, current affairs, dbt, deadlines, family, friends, global news, illness, masters degree, mental illness, nashville, news, online classes, pandemic, routine, self isolating, sleep, sleep schedule, studying, tin pan south, travel, working, working from home
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter (and currently studying for a Masters in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.
I’m currently releasing my first EP, Honest, track by track and all five songs are now available on all major music platforms. However, there’s still more content to come…