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 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 January 2, 2021
I think it’s safe to say that we have no idea what this year is going to look like so making resolutions or goals could seem a bit pointless. But considering everything last year, I did make some recognisable progress with my 2020 goals, something I’m really proud of considering how much I was struggling. Yes, it’s a bit of a shot in the dark to make any sort of long term plans this year but I find that having goals like these give me some direction, some structure, which is especially helpful when I currently have so little external structure in my life. (As I said in my previous post, I prefer goals to resolutions: I find that resolutions create unnecessary pressure whereas goals help me to focus on particular areas. That works better for me but then I’m sure that that pressure is helpful for others.)
Since we don’t know what this year will hold, I’m still going to make goals. If I have to abandon them, then so be it but otherwise, they’ll hopefully be a helpful tool in moving through the year, creating some internal stability if nothing else. I’m hopeful that I can make progress in all of these areas: in my physical health, in my mental health, and in my work.
FIND A RHYTHM IN THERAPY AGAIN – The pandemic and lockdown have really thrown a wrench in my therapy sessions. Not only have they been physically disrupted, in the sense that they’ve moved from in person to online, but the pandemic has done such a number on my mental health that I couldn’t even cope with going to therapy for a while. And now that I’m going again, I feel like I don’t know how to do it anymore. I have a really good relationship with my therapist so I don’t know why I’m finding it so hard to talk about stuff; we just end up catching up about what’s happened between sessions. I really want to find a way back to the place where we really dug into things, the big things that affect me and my mental health. I’m not sure how to do it but my therapy sessions are so vital that it needs to be done so we’ll have to figure it out.
PROGRESS WITH MY INVISIBLE BRACES – Given how up and down last year was, I’m surprised I managed to wear it at all but this year I really want to build and embed the habit in what daily routine I have. The main problem is that, often, I’ll need to take a break and suddenly I haven’t worn it in months. So I also want to work out how to take a break without completely breaking the habit.
WORK ON MY CORE – For hypermobile people, the core muscles are particularly weak, which can cause referred fatigue and pain throughout the body. When I was diagnosed, the specialist asked what exercise I did and I talked about how much I loved swimming, how good it feels to exercise without having to bear the weight of my body. She said that swimming is the best possible exercise for a hypermobile person, especially someone actively dealing with pain and fatigue. I certainly didn’t need the encouragement to swim more. Where possible (in the context of the pandemic and lockdowns), I want to keep swimming as much as I can, as well as practicing the basic hydrotherapy exercises I’ve been given. I don’t know when my referral for hydrotherapy will actually go through, when I’ll actually get sessions, but hopefully it won’t be too long and hopefully that will help with the fatigue and pain.
COMPLETE MY MAJOR REPERTOIRE PROJECT – The final module of the Masters is dedicated to researching, writing songs, and creating a body of work around a particular subject. I’ve been really looking forward to this module, and hearing about the subject matter investigated by my course mates from last year (familial connections, identity, and gender transition, for example) and the work they created has only inspired me more. I have multiple ideas that I’d love to work on, although there are two that stand out more than the others. So I’ll have to choose at some point but we’re encouraged to remain open until just before the module starts. I’m so looking forward to really diving into a project and hopefully I can use my enthusiasm to help me get the best grade possible.
FINISH MY MASTERS DEGREE – By the end of September, I will have finished all of the modules and assessments of the Masters, all being well. With everything that’s happened since the start of the Masters, just finishing it will be an achievement in its own right but I really, really, really want to do well. It would be incredible to get a Distinction (that would be my ideal scenario) but, as I said, with everything that’s happened and how much I’ve had to deal with, that may not be on the cards. It might be initially disappointing to end up with a Merit but I know that, given some processing time, I could get my head around it and be proud of it.
MAKE SIGNIFICANT PROGRESS IN CATCHING UP WITH MY DIARY – Due to my university work and the ups and downs of my mental health, I’m majorly behind with my diary (although I do keep rough notes) and while I’m not sure how I’m going to manage this, I want to get the situation more under control. Being behind just causes me so much anxiety. The university work isn’t going anywhere though and I want to do my best there so I obviously need to find a solution to this problem before I can start implementing it. I’m hoping therapy can be useful here.
WORK ON NOT COMPARING MYSELF TO OTHERS, ESPECIALLY WHEN IT COMES TO MUSIC – This was a goal last year but between the pandemic disrupting the entire music industry and my sporadic therapy attendance (in which I’d planned to work on this issue), I didn’t make nearly as much progress as I would’ve liked. This is what I wrote last year and I think it’s still fairly accurate:
“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.“
Having released more music and received good feedback over the last twelve months, I think my self-esteem and confidence is a bit higher but it doesn’t take much to tip me into that black hole. I really, really want that to stop happening so whatever it takes to avoid those feelings (for the majority of the time, at least), I’m willing to do it and do it for as long as necessary. I want music to be a positive part of my life, not something that’s draining.
FIND MY NEXT PROJECT – As I’ve previously said, there is more content coming that’s part of the Honest project but now that all of the tracks and music videos have been released, I want to work out what my next project is going to be, what the next creative goal I want to work towards is. I may find it during my last two Masters module, I might find it after, or it might find me. I’ve got a lot of ideas I want to explore so I guess it’s just about figuring out which one is the best fit for me in this particular period of time. Whatever it turns out to be, I’m excited. The Honest EP has been such a gift, such a wide and wonderful experience, that I can’t wait to see what the next project has in store for me.
As I said, we have no idea how this year is going to unfold so I don’t know what I will or won’t be able to achieve (in terms of what’s possible with the pandemic and my personal health – physical and mental – in the mix) but these are the areas of my life that I want to work at. If nothing else, last year showed us how strong and adaptable we can be, so who knows: maybe I’ll make progress in all of them or maybe I’ll make progress in entirely different things. I guess we’ll just have to wait and see…
Category: about me, anxiety, chronic fatigue syndrome, covid-19 pandemic, depression, emotions, event, identity, mental health, music, ocd, therapy, treatment, university, writing Tagged: 2021, anxiety, comparing, comparing myself, comparison anxiety, compulsive writing, core muscles, coronavirus, covid-19, debut ep, diary, diary writing, distinction, emotions, exercise, final project, fresh start, goals, good habits, grades, habits, health, honest ep, hydrotherapy, hydrotherapy referral, hypermobile, hypermobility, invisible braces, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, mental health, mental illness, music industry, negativity, new project, new year, new years resolutions, obsessive compulsive disorder, ocd, pandemic, pandemic 2020, physical health, positivity, processing emotions, setting goals, singersongwriter, singersongwriter life, swimming, therapy, 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…