Posted on June 5, 2021
So often in my life it seems, medical stuff is like waiting for a bus: weeks or months go by and then suddenly a whole slew of them show up. And that’s certainly been true of the last few months. Just as the final module of my Masters was starting, I was hit by a series of awful migraines, suffered with terrible tooth pain, and spent twenty four hours hooked up to a blood pressure monitor, a test ordered by a neurology unit in London. So it’s been a pretty hectic time…
At the time of writing this, I’ve lost approximately half of the last forty days to migraines.
I’ve had migraines before – maybe a handful a year, depending on my stress levels and the medication I’m taking – but they usually only last for a day or so before fading away. They’re not pleasant but they weren’t seriously impacting my life. But then I had one that lasted roughly four days and I ended up in A&E because, having fairly recently had the Astra Zeneca vaccine, my doctor was worried about the extremely rare side effect of a blood clot. I was sure it was a migraine but agreed to go and after most of the day there, I was released; the doctor agreed that it was most likely a bad migraine but told me to come back if it didn’t go away. And after another day or so, it did. While I was somewhat irritated about losing a day that should’ve been spent working on my end of semester assessment (despite the pain, I was pushing myself to work on it as I could, in the moments where the painkillers actually worked – I think that’s mainly why it went on so long personally), I am really grateful to all of the hospital staff. They were all great – warm, considerate, and personable – despite the somewhat alarming COVID precautions everywhere that weren’t exactly great for my anxiety. But they were really kind and gentle with me throughout my visit, making the whole experience a lot easier than it could’ve been.
I’d thought that that was it. But then, again and again, I was hit by migraine after migraine, all lasting unusually long periods of time (for me, at least). They were averaging out at about six days each time, sometimes more. That was extremely stressful, bearing in mind that I’m at the beginning of the homestretch of my Masters with this final module accounting for 60% of my final grade, and I was utterly miserable from the pain. I was also so light sensitive; at one point, even the darkest room in the house felt too bright and I dissolved onto the floor in tears, which only hurt my head more. It was awful. That was the first time we called 111 and they called paramedics. That time they determined it was, again, a severe migraine and recommended two other pain medications to try in the hope that they’d be more effective than Nurofen.
A couple of migraines later, with minimal help from the new painkillers, I had another really bad one, which had us calling 111 and they sent paramedics (both such lovely guys who fell in love with the cats and talked musicals with me while they did their tests). This migraine was slightly different: it had all of my normal migraine symptoms but I also had this almost blinding pain at the front and right side of my face. They thought it was probably a migraine but suggested talking to my doctor about having a CAT scan and/or whether there was something going on with my cranial nerves. They also had some practical, experience based advice around pain relief (one of them had personal experience with severe migraines). They said they could escort us to the hospital on the off chance that a doctor would do a CAT scan but did acknowledge that they might just take blood and keep me there while it was checked again, like my previous visit to A&E. So we chose the second option: Mum was going to go out and get the new medication option and call my GP ASAP.
That was the most recent migraine (at the time of writing this). As time passed, the pain in my head started to decrease, then my face, settling in my back-top-right teeth; every time they – and finally just one (after about a week) – knocked against the bottom teeth, the pain was so bad that my entire body would freeze up.
As soon as it had settled in my teeth, we’d called the dentist and they brought me in as an emergency (a few days wait rather than a few months). The dentist checked, took x-rays and saw some decay in the painful tooth, fairly close to the nerve root, and it already has a pretty big filling in it. At one point, somehow, the hEDS diagnosis came up (I was diagnosed since my last dental appointment) and the dentist said that she’s seen and heard about multiple people with a form of EDS (or who were later diagnosed with it) struggle with tooth decay, as well as being scolded by their dentists for not doing a good enough job with their dental hygiene even though they actually were; it was often the EDS causing problems, not necessarily their actions. This really is the diagnosis that keeps on giving (imagine a sarcastic snort at the end of that sentence).
Anyway, she diagnosed an abscess and gave me two treatment options: extraction or root canal therapy, which would involve multiple, multi-hour sessions that would be painful, ultimately might not work, and probably wouldn’t last into my late thirties. The whole thing felt pretty overwhelming and I ended up in tears. Extraction was the obvious choice as far as I was concerned and everyone else agreed; there seemed to be way too many downsides to the root canal option (plus it sounded horrendous and I find dental work, even fairly straightforward stuff, very distressing) and even if I was inclined to choose it, it’s the worst possible time given the end of my Masters. Even an extraction is going to be a significant disruption. I’m applying for extenuating circumstances, which both my supervisor and module leader have encouraged, so hopefully that’ll mean I end up with the same amount of time to do the work as everyone else.
So, I’ve been referred for an emergent extraction under general anaesthetic but I don’t know when that’s going to happen. They also prescribed me some antibiotics for the mean time. Now it’s a waiting game. But several days after the appointment, either the antibiotics are working or the nerve is dying or both because the pain is getting better and I feel more human. There are periods of time where I can actually ignore it, which is a huge deal considering how much pain I’d been in. So that’s definitely something to be grateful for.
BLOOD PRESSURE MONITORING
A couple of months ago, I had an appointment with a doctor from a neurology unit in London, which I believe I mentioned in this post. After spending most of the appointment vehemently telling me there was no point in getting any tests, he somewhat reluctantly offered to write to my GP, suggesting I have my blood pressure monitored for twenty four hours. It took forever to get a monitor from the hospital but finally test day came.
I had to go to the hospital where they fitted the monitor (found the right size for my arm, wrapped me up, made sure it was taking readings, looped the cable behind my neck, and used the tie from my coat to secure the monitor/data recorder around my waist) and gave me the instructions and paperwork to go along with the monitor. I wasn’t allowed to get it wet so I couldn’t have a shower while wearing it but since that’s when I usually get my blood pressure related symptoms, we devised a plan where I would go through the motions – with the shower on to create the heat and steam – so that it would still record whatever was happening to my blood pressure during a shower, as much as possible at least. The whole process was relatively stress free and the two women who sorted me out were great, warm and extremely competent but flexible to my needs. I’m really grateful to them for making it so easy.
All done, we headed home. It was a bit weird with the weight of the monitor, the too long cable getting caught on stuff, and so on but overall, it was fine. The cuff got very tight – tighter than I remembered them getting when you get a one off test – but it wasn’t a big deal and the rest of the day went on as normal. It was a bit of a struggle to get to sleep because I couldn’t get comfortable with the cuff on my arm but once I did get to sleep, the inflating and squeezing didn’t wake me up, something I’d expected to happen.
However, when I woke up, my arm was really sore. I felt like I’d been punched a hundred times in the same place, convinced the skin was bruised underneath the cuff (it wasn’t and no bruise ever emerged but damn, it was tender). I think the cuff had slipped in the night as well because I had several error readings on that second day.
I had my pretend shower and, as usual, felt shaky, dizzy, and lightheaded; having thought ahead, I’d timed things so that the monitor would be taking the reading right at the end of my fake shower. I’m intrigued to see what that reading says. That done, Mum helped me wash my hair, leant over the side of the bath; I had an online meeting and couldn’t bear the thought of doing that with unwashed hair. It wasn’t very dignified, especially with all the extra towels wrapped around me to keep the monitor dry, but it got the job done.
I wore it for the rest of the twenty four hours and then, with great relief, unwrapped the cuff. By the end, my arm felt really sore from the squeezing, plus it had started to pinch in various places at some point. There’s also that Autism-sensory-thing of wearing something constantly constricting, which starts causing anxiety after certain periods of time, like a long day in skinny jeans or wearing my retainer all day. Does that make sense? The anxiety had been building for the last few hours and it was wonderful to take it off.
Mum dropped it back at the hospital, so now I guess it’s another waiting game. I don’t know when we’ll find out the results and the conclusions drawn from them. I assume that they’ll let us know at some point, although it wouldn’t be the first time we’ve had to chase results. As I said, all we can do now is wait.
So, yeah, hectic. At a very inconvenient time. But that’s life and I’m determined not to let it spoil the last of my Masters and this project that I’ve been looking forward to for so long. I am going to make the most of every good day I have, take the extenuating circumstances gratefully, and continue working as hard as I can.
Category: diagnosis, event, medication, treatment, university Tagged: a&e, blood pressure, blood pressure monitoring, dentist, health, hospital, masters degree, masters degree year two, masters part time, migraine, migraines, pain, paramedics, physical health, physical pain, student, tooth pain, 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
Posted on May 9, 2021
Trigger Warning: This post contains mentions of self harm, but it’s simply a statement that it happened and there are no descriptions, graphic or otherwise. If this could upset or trigger you, please don’t read any further. Please always put your mental health and emotional state first.
So we’ve reached the last semester of the Master’s, with the big, final project that we’ve ultimately been working towards throughout this whole course. It’s a big deal, exciting and scary because – obviously – I want to do well and create a project that I’m proud of. But I am worried about my health, mental and physical, getting in the way and making it a difficult to both work hard and enjoy the process. So I thought, with all of this in mind, I’d write down where my head’s at and how I’m doing – I guess, so that I have a record of how I’m feeling right now, at the very beginning of the project.
At the moment, my biggest difficulties seem to be chronic fatigue and pain that are a result of my recently diagnosed Hypermobile Ehlers-Danlos Syndrome. I’m tired and sleepy all the time; some days, I can barely keep my eyes open during the day. While the physical tiredness is likely due to the hEDS, at least in part, we suspect the sleepiness is due to my antidepressant, Phenelzine. I want to switch to something else as soon as I can but mid-Master’s is not exactly a great time, given how long it generally takes for antidepressants to take effect and my track record of reacting badly to all but Phenelzine (so far, at least). So I’m having to just put up with that, with the dwindling help of Red Bull.
The pain has been really bad, particularly in my legs, arms, and back. For months, I’ve been taking painkillers daily but I feel like, over the last few weeks or so, it’s started to get slightly better. I’ve been doing the Occupational Therapy exercises for my wrists and hands and I’ve been able to start swimming again (yay!), both of which do cause pain of their own but it’s a very different pain and actually wears off pretty quickly while the hEDS pain tends to just get worse and worse unless I take painkillers. I’m getting better at figuring out where my limits are and stopping before I overdo it – most of the time. It’s hard but I do feel like I’m seeing progress.
My depression has been okay recently, much less of a problem than it has been in the past (she says while still on the ‘end’ of one, but I’ll get to that in a minute). I had one awful episode at the beginning of April, which did result in self harming. And then I had another episode last week, which I’m still feeling even if I’m not drowning in it anymore (it was kind of forced to the back burner by the worst migraine I’ve ever had). Both episodes were triggered by really upsetting news; they didn’t come out of nowhere like they sometimes do.
My anxiety has been a lot to deal with, but then there have been a lot of things to be anxious about: keeping up during the semester, the assessment and doing well in the module, all things COVID related (I’ve developed this weird house-separation-anxiety-like-thing whenever I’m out of the house too long, which is horrible), all of my health stuff, preparing for the new module and final project, trying to balance everything in my life, and so on. It’s exhausting and has a knock on effect; the rest of my mental health issues are all affected by my anxiety.
The two areas that are most tightly linked with my anxiety, I think, are my Trichotillomania and my OCD. My Trich hasn’t been too bad of late – not great but not unmanageable. But my OCD has been much more of a struggle lately than it sometimes is. I wrote about it in general here (so if you need a refresher on what my OCD is like, this is probably a useful read) but with everything going on recently, it seems to have kicked up a gear. I just can’t seem to do everything and then write all of it down; there aren’t enough hours in the day, which just leads me to getting more and more behind with everything, which just makes it worse and worse. Again, it’s just exhausting. I feel suffocated by it but I don’t know what to do about it; it feels like the walls are closing in around me and there’s nothing I can do to stop them.
As for autistic meltdowns, I haven’t had many of late. I think that’s because, despite my anxiety, I’ve had a really good few months. As I said in my previous post, this last university module and all the writing that came part and parcel with it was really good for me and I felt really good in myself so, in general, things didn’t build up to the point of meltdown. There were a number of occasions where something took me by surprise (for example, an unexpectedly triggering advert – I hadn’t even known that it was something that would trigger me so that was unfortunate for everyone) and I had a meltdown but as things go, it’s been better than it has been.
I’m not entirely sure how my ADHD manifests yet, having only received the diagnosis recently. If only it were as simple as getting the diagnosis and everything making sense… So I still have work to do in that regard. But I’m fairly certain – as certain as I can be at this point – that my issues concentrating and the feeling of my brain working against me are part of this picture. For the moment though, I’m in the dark about all of this. I’m in an impossible position medication-wise (I’m going to write about this in more detail at some point – it’s just that I’m still processing it all) so I’m stuck and unsure how to manage these problems. It’s frustrating and tiring and I wish there was an easy answer. Or even an easier one than I’m currently faced with. But there doesn’t seem to be. So I’m not sure where to go from here.
And the newest problem – because I really needed more problems… – are these migraines that I’ve been having over the last month. In the past, I’d have a migraine every few months or so but recently they’ve been different. They’ve been completely debilitating, painful to the point that I’ve ended up in A&E and had to have an ambulance called to the house because they’ve been so bad. They’ve also gone on for days when previously I could sleep them off and they’d be gone in twenty four hours. I’ve yet to find pain relief that does a decent job and I find that very scary. Calling 111 and them sending an ambulance because I was in so much pain but so light sensitive that even a darkened room felt too bright is a big deal and I’m scared of what’s next, of how it could get worse. I don’t know what’s causing them and no one else seems to either.
And finally… I’ve been the most consistent with therapy I’ve been since the pandemic began, even if I still find it hard and less productive when doing it over Zoom. But it’s looking like we’ll be back to face-to-face soon, which is exciting if scary – as I said, I’m finding it quite stressful to be out of my house. But hopefully, therapy will go back to being as helpful as it was pre-COVID, when it was face-to-face all the time. I don’t know exactly why it doesn’t feel the same over Zoom – maybe I find it harder to connect and talk about the hard stuff when I’m not in the same room as my therapist – but it just doesn’t, so I’m looking forward to getting back to the room.
So that’s it, I guess. This is my mental health (and I suppose, physical health update) before I start the final module of my Master’s, The Major Repertoire Project. Everything feels very messy and complicated right now, which isn’t exactly reassuring. I want to do well in the module, of course, but I also want to really enjoy it and really get the best out of it. The module doesn’t officially start until tomorrow but I’ve already started working on my project. I’m so excited. I just hope I can manage it with all of this other stuff going on.
Category: about me, adhd, anxiety, autism, covid-19 pandemic, depression, diagnosis, heds, medication, meltdowns, mental health, music, ocd, self harm, therapy, treatment, trichotillomania, university Tagged: adhd, adhd diagnosis, anxiety, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, autistic meltdown, chronic fatigue, chronic pain, coronavirus, covid-19, depression, diagnosis, drowsiness, ehlers danlos syndrome, fatigue, generalised anxiety disorder, heds, hypermobile ehlers danlos syndrome, hypermobility, major repertoire project, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, meltdown, mental health, mental health update, migraine, obsessive compulsive disorder, occupational therapy, ocd, online therapy, pain relief, pandemic, pandemic 2020, pandemic anxiety, self harm, sleepiness, swimming, therapy, trichotillomania, trigger, trigger warning, tw, 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…