Posted on June 19, 2021
Since I’m in a one of the vulnerable groups, I have now had both of my Covid-19 vaccines! Yippee!
Back at the end of March, I had my first vaccine. I’ve had so many blood tests and procedures involving needles that the vaccine itself really didn’t phase me, not that I’m exactly a fan of being poked by pointing things. I was a bit nervous about what the side effects might be but being vaccinated was worth it, I had no doubt. The staff at the vaccination centre were kind and efficient; I was in and out in less than twenty minutes.
The only side effect I’m sure was connected to the vaccine was how tender my arm was afterwards. After the first vaccine, it was so sore that I could barely touch the injection site for two weeks. I slept terribly because I woke up every time I rolled onto that side and that arm. After two weeks, it finally disappeared.
I had several migraines in the month after, the first of which resulted in a trip to A&E to make sure I didn’t have the rare Astra Zeneca side effect of blood clots. I didn’t and it was just a migraine but then I had several more, much higher than my monthly average. I couldn’t and still can’t be sure that they were caused by the vaccine – due to the abscess in one of my teeth that was later diagnosed, which could’ve also been causing them – but I’ve never had that many migraines in such a short period of time.
Even having the one vaccine made me feel better, safer. I obviously didn’t stop wearing a mask or social distancing, but I just felt like I had that extra layer of protection. It made my anxiety (and sometimes panic) about going out just that bit smaller.
Middle of June and I got the text to go back for my second dose. I managed to book a slot within the week, which I was already impressed with, but then it was brought forward. Doubly impressed. Everyone at the vaccination centre was super efficient and really nice and again, I was in and out in less than twenty minutes. Again, I had the tenderness in my arm but it didn’t last nearly as long; it was gone within a few days. I did have a migraine a few days after but it only last for a day rather than the almost week long migraines I was suffering from before (although, as I said, it’s hard to determine what caused those with the tooth problem). And fingers crossed, that will be the only one. I had heard that people generally experienced fewer side effects after their second vaccine but I hadn’t wanted to put too much stock in it just in case I didn’t have the same experience; I didn’t want to set myself up to be disappointed or frustrated. But, almost a week on from the second dose, everything seems to be okay and within a couple of weeks, I will officially be fully vaccinated and as protected as I can be at this moment in time and that is a big relief.
Posted on June 12, 2021
It’s been a while since I last talked about my ADHD so I thought it was time for a little update. A lot has happened since I was diagnosed, some of which I thought might be worth sharing…
It was a lot to process that I did my BA and have been doing my MA with undiagnosed and unmanaged ADHD but the diagnosis had me looking back over the last few years and a lot of things started to make sense: why I’d excelled in certain areas and struggled desperately in others. Part of me was impressed with how I’d done, factoring in this new obstacle that I’d been unknowingly battling against, but on the other hand, it makes me sad that I’ve had to, you know? It makes me sad that I’ve had to work against my own mind all this time without anyone noticing or supporting me – in this sense, at least. Life could’ve been so much easier.
And now I have to finish my Masters unmedicated.
Because I take Phenelzine for my depression, there’s the risk of interactions with stimulant-based ADHD medication so I can’t take those; both medications have the potential to raise a person’s blood pressure and together, that could be very dangerous. However, given the extreme drowsiness I experience as a side effect of the Phenelzine, I can’t take a non-stimulant medication either due to the high chance that they’ll add to the drowsiness. It’s hard enough staying awake and (somewhat) focussed during the day. I can’t afford to make it worse, especially in this final module of my Masters, the one I’ve been looking forward to since I started the Masters. So it looked like a dead end. But I wasn’t giving up at the first hurdle so I did what I always do: I started researching.
After a bit of searching, I found a research paper about a series of studies done, combining medications when traditional routes failed to work. One of those cases detailed a man who only responded to an MAOI (which is what Phenelzine is) and a stimulant-based ADHD medication. He had to continuously monitor his blood pressure but had no problems and continued on the two medications indefinitely, which allowed him to live a normal, productive life. That seemed very promising, as a starting point for discussion at the very least, so I sent it to both my psychiatrist (who’s been managing my medication for years now) and the ADHD specialist.
My psychiatrist was willing to try, provided I was diligent about checking my blood pressure. Despite our initial ups and downs, we have a really good relationship – and we have had for a long time now – and he always takes my thoughts, opinions, and research into consideration, which I really appreciate even if he ultimately opts for a different approach. So that felt good, like a step in what felt like a positive direction.
We didn’t get a response from the ADHD specialist for weeks. To begin with it was just frustrating but as time went on, I started to swing between despair and anger. I felt like I’d just been abandoned, dropped without a word (something that’s unfortunately happened enough times that it’s become a big trigger for anxiety attacks, episodes of depression, and even autistic meltdowns, depending on the situation); sometimes it feels so upsetting that these medical professionals can just go home at the end of the day and leave all of the struggles of their patients/clients behind while we all have to keep living (and suffering) from them. I know it’s not that simple – that they don’t just stop caring, that they can’t and shouldn’t have to work ridiculous hours – but in my desperate moments, in situations like this, it feels hard to feel supported, to believe that they do care, that you’re not just another file rather than a person struggling through each hour.
After some extra complications due to communication problems, we finally heard back and she was saying a categorical no, having had previous patients respond badly to the combination. While I can understand that, I found it frustrating that she wasn’t even open to trying it. I’ve always responded unusually to medications (proven again and again by my experiences with more than fifteen medications/combinations for my depression – the only one that’s worked is one that’s rarely used) so I was frustrated by the brick wall approach she was taking. My psychiatrist was still open to trying and said he’d talked to her about transferring the medication aspect of managing my ADHD to him since he’s been treating me for so long and has a detailed understanding of my history. But she said no.
So that’s it as far as I can tell. Unless I change my antidepressant, (I have to point out again) the only one that’s helped me, I can’t take medication for my ADHD. It’s essentially come down to choosing which of the conditions to treat, my depression or my ADHD, which just makes me feel so upset and frustrated. Treating my ADHD could make a huge difference in finishing my Masters but I’m getting blocked at every turn. It’s almost worst now than before I knew about the ADHD. Before, I was struggling; now, I’m struggling and I know why but I can’t do anything about it. The whole situation makes me so angry, so angry that I couldn’t do the most recent online appointment. I wasn’t in the right headspace and I doubted my ability to be receptive when my emotions were so all over the place.
My Mum took the meeting but it hasn’t changed anything. I’m still not getting any treatment, any support. I feel like I’ve been given this great weight to carry but abandoned to carry it without help or advice. I don’t know what to do. I don’t know how to move forward. I feel like I’ve been let down by someone who’s job it was to help me. Again. It’s upsetting and exhausting and stressful.
I don’t say these things to encourage a mistrust of doctors or because I regret the ADHD diagnosis. I just need to be honest – for the sake of my own mental health – and while I generally try to see the positive, sometimes the situation just sucks. It’s just bad and hard and makes a mess of you.
Category: adhd, anxiety, autism, depression, diagnosis, medication, mental health, music, research, treatment, university Tagged: adhd medication, adhd support, anti-depressant, antidepressants, anxiety, attention deficit hyperactivity disorder, depression, inattentive type, masters degree, medication, mental illness, neurodivergent, neurodiverse, neurodiversity, phenelzine, stress, stressful, treatment, university
Posted on May 15, 2021
On the 12th of May every year, the Mass Observation Archive asks people to keep a diary for a day in order to capture the everyday lives of people all over the UK. There’s usually a suggested loose theme; for example, last year, it was suggested that diary entries not focus on exactly but highlight the pandemic and the effect it was having on our lives. This year, the website suggests that “diaries can record 12th May and reflect back over the past year and look forward to the future and life beyond this year.”
I’m a long time diary writer and have been for years so this project was an exciting discovery. I love the idea of so many people’s experiences stored in one place, the idea of collecting as many versions of one day as possible and trying to build the fullest picture of it. So, for the last couple of years, I’ve looked forward to this day, to writing about it, and to sending it off to the Mass Observation Archive. But I also like posting the day here too.
Some important things to know before reading this: I’m autistic and struggle with Treatment Resistant Depression, Generalised Anxiety Disorder, Obsessive Compulsive Disorder, and Borderline Personality Disorder. I was also recently diagnosed with Hypermobile Ehlers-Danlos Syndrome and Attention Deficit Hyperactivity Disorder (Inattentive Type). All of the symptoms get worse under stress; I’m beginning the homestretch of a Masters Degree in Songwriting and while things with the pandemic seem to be improving (the vaccines, the lockdown slowly lifting, etc), it’s hard to let go of so much ingrained fear and hard to know what the ‘right’ level of fear is. So I guess I’m still struggling with the pandemic, although not in the same way as I was struggling with it last year.
What I thought was going to be a relatively chilled out day spent at my laptop, working on stuff for the final Masters module, the Major Repertoire Project, and catching up on all the work I’d planned to do when I got hit with last week’s killer migraine (it lasted six days and involved paramedics being called to the house). But then, last night, I got an email from uni with the upcoming events and realised that the upcoming Song Sharing Session was today, this afternoon. I haven’t been back to uni since the first lockdown, working from home as an online student, so going back – and going into London – felt like a real big deal. But instead of spending hours ruminating on whether or not I should go, letting my anxiety make the decision, I decided that I wanted to go and so me and my Mum started making plans to make it possible. As things go, it felt as safe as anything can be right now: Mum had said she’d drive me there and back, I’ve had my first vaccine, and no one can enter the building unless they’ve tested negative. Mum ran out to get to COVID home tests and after that, all there was left to do was play through my songs to be as ready as possible.
Maybe because my subconscious was processing the idea of going to London, I didn’t sleep well and struggled up, later than I’d planned. And it was kind of chaos from that point on. I had a problem with my computer that sent me into a panic. I managed to sort it out but the anxiety of the situation wasn’t a great way to start the day. And then, before I could even make it to the shower, one of the cats got stuck in the attic and since we were going to be out for most of the day, we had to get her down before we left in case she couldn’t figure out how to do it herself or one of the others decided to climb up too. Even with treats, it took ages to get her down and then settle all five of them.
I did my Lateral Flow Home Test and had a shower, got dressed, and did my hair and make up while it did it’s testing thing. It came back negative, which was great obviously, but trying to register the result and get the confirmation email that would allow me to get into the uni building was overly complicated and much more time-consuming than described – particularly frustrating as I was trying to get out of the door. I’d wanted it to be as up to date as possible and suddenly it was making me really late. So that was just more stress on top of an already stressful morning.
The rush out of the house and the stress of going back to uni for the first time in so long made me nauseous and dizzy and I spent most of the drive breathing deeply and trying to keep my mind from spinning. My Mum had very kindly said she’d drive me to London since I’m still feeling very wary of public transport, especially the underground, so we talked and listened to music and by the time we pulled up outside the uni building, I was more excited than nervous. It felt so strange to be back, like it had only been a couple of days and a century at the same time since I’d last been there.
I’d expected to feel nervous there – I mean, I’ve been nervous everywhere but my house since the pandemic began – but given the strict safety procedures, I felt really safe and relaxed. It took me by complete surprise but it was so nice and being back there kind of felt like coming home; I have been studying there, on and off, for the last six years after all.
Slowly, the ten of us that had turned up to the session congregated and we were all just so excited, like a bunch of seven year olds at a birthday party. Some of us had never actually met each other in real life – as a fully online student, there was only one person I’d met before we went into lockdown – so it was very exciting to finally meet these people who I’d only ever seen on a screen. Having said that, it was somewhat weird to be saying, “It’s so nice to meet you!” to people I’ve had hours of classes, discussions, and laughs with.
We were all hanging out and chatting, catching up since most of us haven’t seen each other – even on a screen – for several weeks, when Sophie, our tutor and course leader, showed up to run the session. She was as excited to see us as we were to see her. It was so lovely to see her: I’ve known her for almost seven years and she’s been so supportive, both of my songwriting and of me as a person. So, yeah, I was super pleased to see her in real life again.
We got ourselves in a circle and had a bit more of an official catch up before taking turns playing songs and talking about our projects. I hadn’t heard music from most of the people there so that was really cool and inspiring and everyone’s working on such fascinating projects. I kept finding myself volunteering as a potential cowriter over and over, despite the voice in my head saying, “You already have so much to do!” The projects were just so fascinating.
I got to play two songs: the first was the song that really got my project rolling, a song I wrote a little over a year ago to a family friend who also has Autism; the second is a new song about my experience of OCD. The newer one was scary to perform but it seemed to go down well, which was reassuring. The whole session was just so fun and so good for me, for my mental health. I wanted to stay and hang out with everyone, even after the session was over, but since my Mum was driving me home, it wasn’t fair to ask her to wait any longer. So I said my goodbyes, made plans to meet up again, picked up my uni’s own facemasks (I mean, that’s the weirdest school merch I’m ever gonna get), and headed out to find my Mum.
On the drive home, I slowly came down from my adrenaline high until I was utterly exhausted. I did manage to catch up with my Mum and then two of my parents on the phone – they wanted to know how my first time back had gone – before I completely ran out of energy. It felt like a very long journey but we finally drove back into Brighton.
We stopped quickly to see one of my parents and her finally finished garden office. It was really nice to see her – we’ve all been incredibly busy (or dealing with an epic migraine) – and her new office looked gorgeous. It could be pretty cool to have a studio like that one day…
Mum and I finally got home, fed the hoard of hungry cats (who seemed to think they’d been abandoned), and crashed in the living room, continuing our rewatch of Grey’s Anatomy. I tried to work on a post for the blog but I was so tired and so drained that I barely managed a handful of sentences in the few hours I sat there. Eventually I just gave up and went to bed but it was still a struggle to sleep, just as it normally is; my thoughts started racing and I just couldn’t grab ahold of any of them long enough to settle. I don’t know how long it took to get to sleep but it was definitely after 1am, possibly even later.
So much has changed in the last three hundred and sixty five days. I look back at my last Mass Observation Day diary entry and my life is so different, in so many different ways. Last year, I was so scared, so terrified that I felt like I couldn’t breathe. I couldn’t do anything because I was so scared. All I could do was sleep and bury myself in the familiar worlds of Fanfiction. I’m still scared but I’m also happy, at least some of the time. I have bad days but I also have good days, even really good days, and just that is a huge deal. I’m writing a lot, researching for my project, and facing my fears around the pandemic. Sometimes I can’t believe that the last fifteen months have happened but I only have to look at myself to see that they did: I’ve been through a lot and changed so much. And that’s just looking inwards. Looking outwards – at people I know, the communities I’m a part of, the world at large – is far too overwhelming to sum up right now in one day’s diary entry.
If you’ve been keeping a diary or still want to jot down some thoughts about the 12th, I would really encourage you to do so and send it to the archive. The page is here, in case you’d like to submit or learn more about this and their other projects.
Category: about me, animals, anxiety, covid-19 pandemic, emotions, event, mental health, music, ocd, sleep, university, writing Tagged: anxiety, anxiety disorder, blog writing, cat, cats, coronavirus, covid test, covid-19, cowriting, diary, diary writing, family, family of cats, friends, lateral flower home test, lockdown, lockdown 2.0, lockdown 2020, lockdown 3.0, major repertoire project, mass observation, mass observation archive, mass observation day, mass observation day 2021, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, migraine, migraines, pandemic, pandemic 2020, pandemic anxiety, part time masters student, sleep, songwriter, songwriters, songwriting, stress, student, university
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…