Posted on April 10, 2021
I love a good week-in-my-life post and I try to do one every semester or so, since that does tend to shake my life up. Now, the semester is coming to a close and the assessments are in sight so I’m busy with uni work, with cowrites, and with health stuff. There’s a lot to juggle right now.
The week in this post begins on Monday 15th March and ends on Sunday 21st March 2021. I’d thought I’d have this up on the blog earlier than this but when I was writing it, I wasn’t thinking about the timing and then there was Autism Awareness Week to post for. But here we are, just a bit later than planned.
I struggled to wake up with my alarm. My sleep isn’t great at the moment and my alarms really aren’t doing their job. Most of the time I’m sleeping through them completely, which isn’t exactly ideal.
For a moment, I forgot that it had been the Grammys the night before and then suddenly it came rushing back. I went online and found out who won what. I’m sad Ingrid Andress didn’t win any of the three she was nominated for, but I am glad that The Highwomen (Brandi Carlile, Natalie Hemby, Lori McKenna, and Maren Morris) won Best Country Song, although Maren Morris won’t get a Grammy since she wasn’t a writer on the song. And then there’s Taylor Swift. I’m so, so happy that she won Album of the Year for folklore. I think she deserved more than just the one award – I mean, how did she not win Best Pop Duo/Group Performance with ‘exile featuring bon iver’?! – but I do also think it’s a good thing when there’s no one person that walks away with five or six, meaning more artists/songwriters/producers/etc are being recognised for their work (I’m not saying the Grammys are fair – we know they’re problematic – but this is one aspect that makes them fairer).
I’m so happy for her, especially after everything she’s had to deal with with her masters and still working through the fall out of everything that happened/came to a head in 2016. And I know I’m biased but it’s pretty widely acknowledged what a big deal folklore was (and is); it was absolutely the album of 2020.
I was so busy catching up with the Grammys news that I was late for my online Occupational Therapy session. Fortunately my OT therapist understands my passion for music so she didn’t mind. We ran through my exercises and she wants me to do them for a little bit longer before moving on to a new set of exercises. Having fallen down the stairs at the weekend, she warned me to take things gently – to take a bit longer if that felt safer and more comfortable – and said that an injury, even to an unconnected area, could cause a general flare up of pain. So hurray for that. Everything hurt from the fall but I figured that that was due to the actual impact (well, multiple impacts) rather than anything chronic pain related. I haven’t been dealing with this – chronic pain – long enough to be able to predict stuff like flare ups. So we’ll just have to see things go.
And then we were done. The sessions are always exhausting, even if I’m not being asked to do much. So, before I could fall asleep on the sofa (it would not be the first time), I got up and recorded the new vocals for the song I was presenting in class the next day, ‘Last One Standing.’ I really love this song so I was really nervous to hear people’s feedback; I really wanted them to like it.
I finished that and, as predicted, I fell asleep on the sofa for a couple of hours.
I had a gentle rest of the day, doing various admin tasks before starting The One on Netflix. I was craving something new. I got into it really quickly, which was great – exactly what I wanted. I only stopped when 9pm rolled around and it was time for Unforgotten, a show my whole family has loved since it began airing. We all just love Nicola Walker and I particularly love her as Cassie Stuart. Having said that, I’m struggling with this series. I think the case they’re working is super interesting – maybe the most interesting one they’ve tackled – but with Cassie feeling so trapped and angry, it’s not as enjoyable as it has been in the past so I really that hope they’re heading towards a solution that brings some of her warmth back. (It’s safe to say that I wrote this before we saw the series finale.)
I was really stressing before class (we’re heading towards the assessment and I always get so anxious that I’m not doing enough) and somewhat frantically messaging with my friend. She suggested we have a a quick video chat before the class started and that really helped to ground me. Then we signed into our class.
We didn’t have our normal (awesome) tutor but we had another awesome tutor; I’ve had her as a tutor a handful of times since I first started at ICMP, on the BA, and she’s really great. Throw in the fact that we were presenting our ekphrasis songs (songs that were responses to other pieces of art, like visual art, films, etc) and it was a really interesting and thought provoking session. The brief had really stretched people and the songs were all so exciting and so different in the best possible way. I loved all of them.
I was last and VERY nervous because I was (and am) so attached to my song. Fortunately though, everyone really liked it and had some really great responses, some really interesting thoughts, and some good things to think about in the redrafting process. I was so happy with the positive response that I finished the class feeling like I was glowing. My first ‘glowy moment’ of the year – that’s what I used to call the really awesome moments. It’s been a really long time since I’ve felt like I had a reason to use the phrase.
I meant to have a nap between classes – that always makes it easier to concentrate in the second class, which is, after all, three hours long – but I accidentally ended up binge-watching The One. It’s so compelling and so thought-provoking, in so many different ways.
The seminar was on authenticity but having studied authenticity in song lyrics pretty extensively for my Musicology essay, it was all pretty familiar. So while it wasn’t too intellectually taxing, I was tired and it was hard to stay focussed. I didn’t mind three hour classes when I was actually in them but I do find three hour classes on Zoom a struggle.
When the class was over, I curled up on the sofa and finished The One; the last episode was just one mind-blowing revelation after another. It was so good. I found Rebecca a particularly fascinating character; there was so much to unravel. Both Hannah Ware (Rebecca Webb) and Zoë Tapper (Kate Saunders) deliver incredible performances and there’s so much potential for another series. Me and my friend, Luce, (who was an episode behind me) freaked out together when she finished it about an hour later.
I’m always exhausted on a Tuesday, even if I do manage a nap, and I was falling asleep on the sofa around ten. So I dragged myself up and headed for bed. That’s pretty early for me these days. I’ve been trying to get to bed earlier so that wasn’t the worst thing in the world.
I slept really badly but I didn’t sleep in. I was still in pain so I couldn’t get back to sleep anyway and at some point during the pandemic, I started feeling guilty if I slept in (this is super unhealthy, I know – I’m working on it in therapy) so I got up, had a shower and breakfast, and got to work. I did some uni stuff and then wrote down my thoughts to collect myself before a meeting with my course leader.
The meeting was about the final module of the Masters, which is called the Major Repertoire Project where we can research and create a body of work about anything we want. I know what I want to centre my project around (I’ll share soon but I want to get the current module done first) but you can take various approaches to the research and I wanted to talk to my course leader about that. We had a really in depth discussion and she gave me some really good ideas to think about. So I’ve got a lot to figure out but I’m really excited to get into it.
As good as the meeting was, I was really tired afterwards. I got comfortable and tried my best to concentrate on blog post writing. It took hours but eventually I managed to finish my blog post on being diagnosed with ADHD. At least I had a pretty good view while I worked.
Mid afternoon, I was supposed to have a phone call appointment with a neurologist. And I did, except they called two hours late, it wasn’t the person it was supposed to be, and then they basically spent twenty five minutes trying to convince my Mum and I that any tests they do as a department would probably be a waste of time and likely wouldn’t show anything. And that was it. The call ended and I just felt confused and upset. Isn’t the point of a doctor to help you, rather than convince you that trying to find an answer to your problems is a waste of everyone’s time? I mean, I was referred to the neurologist by my GP because she thought this was worth investigating. And then I finally get to see said neurologist after rescheduling and it felt like they were fobbing me off from the moment the call started. So, that was… yeah.
I was all over the place and Mum did her best to distract me. She’d seen bits of The One (although I’d managed to prevent her from seeing anything too spoiler-y) but she wanted to see the whole show so we started it again; she was hooked straight away, just like I was. As we watched, I started doing some basic research based on the Major Rep Project seeds that my course leader had planted in my brain; I didn’t get very far but it was definitely interesting and a good distraction from real life.
And then I went to bed, completely exhausted. It was barely ten thirty.
I struggled up with my early alarm but all of my careful planning for the day had fallen apart before ten am. I’d had two cowrites booked for the day but then one of them needed rearranging so I suddenly had to try and rearrange the whole day. I was majorly stressing that I was going to have to cancel on somebody but fortunately I was able to rework everything so that I could work with both people.
I had a shower and breakfast before finishing the lyrics to a song I’d been working on and speaking to Richard about the plans for the acoustic videos (the ones I’ve been releasing over the last few weeks). Then I worked on blog post stuff until it was time for my first cowrite. My friend, Anna, and I worked on a really cool song that she’d brought a draft of to the sessions and we were both so proud of it when finished. It has some really great metaphors and imagery and we tightened up this awesome outro that she’d proposed. I feel like we created something really special and that felt so good.
When we hung up, I had an hour to eat a really late lunch (and watch some more of The One with my Mum) before my second writing session, this time with my friend, Dan. He didn’t have a draft like Anna but we’d been messaging about what to write about: he’d sent me some themes, I proposed some more concrete ideas, and then he chose one that resonated for us to work on.
We decided to call it quits after a couple of hours and although we hadn’t finished the song we’d started, I feel like we’d made a really solid start on a really interesting song. I really liked what we’d come up with and Dan seemed to feel good about it too.
I feel like my writing has improved so much over the last few months and it felt particularly strong that day. I just felt like everything I was coming out with was good, not necessarily right for the song of the moment but still good. And that felt kind of amazing. Obviously not every day or every session is like that but every now and then it happens and it’s so, so satisfying; it gives you such a motivation boost. And remembering days like that one are really helpful on the days when it feels like everything you write is complete crap. So it was a good day, despite the stressful start, and I felt really positive about my writing and my friendships and my creative relationships and my course. It was a good day.
I was exhausted and starving by the time we finished but in a good way, in the way where you’ve worked really hard and you need to replenish, in the satisfying way. Mum and I finished The One with dinner and she was as blown away as I’d been. It was fun to have someone to talk about it and dissect it with; there are so many interesting and thought-provoking ideas in there.
Even though it was already late, I couldn’t help doing some more research into some of the ideas my course leader had suggested before forcibly reminding myself that that was not the time to be getting into complicated academic research, that I needed to disconnect and go to bed.
For the first time in a really long time, I slept super deeply and actually woke up feeling somewhat human and not a zombie.
After a quick shower and breakfast, my Mum and I headed down to the GP surgery for another set of blood tests. I’ve completely forgotten what they’re for or who requested them with so many people involved right now but apparently they might give us more insight into my fatigue. The nurse was lovely and the whole thing was super quick and efficient.
Back home, I did some work for uni and typed up my notes from my meeting with my course leader, including some of the resources I’d started to find the night before. I wanted to get it all down before I started to forget things. This project feels so huge right now – I’m sure it will start to feel more manageable and achievable once I’m actually working on it and not just thinking about it in broad strokes – so I don’t know what I’m going to need to remember at this point.
I worked up until my therapy session, which are still online at this point. I’ve said it before but I’ll say it again: in person is better and, personally, I find it more helpful but I’m grateful to still have access to therapy at all so I’m not complaining. Since I’ve been in a better place, we talked about that and what’s contributed to that. I told her about my first glowy moment – the first one in so long – and she was so excited so we enthused about that together. But we also talked about how difficult I’ve been finding it to start on the assessment work; maybe it’s my anxiety around assessments, maybe it’s the untreated ADHD, maybe it’s a combination of both. It’s also just irritating to have to focus on the paperwork side of things when I just want to keep writing madly.
It was an okay session. Between all of the pandemic stuff and having sessions online, I find it hard to get into things deeply enough to really move forward. So mostly it’s been about coping, which is necessary but also really frustrating. It’s felt like a year of treading water when I’m just so desperate to make some progress, of any kind.
I spent the afternoon doing various admin, like emails and so on, and more uni work. And then, early evening, I uploaded the first of the acoustic session videos. Working with Sunburst Sessions (back in February 2020), we’d made a video for each track of the Honest EP but I obviously hadn’t finished releasing the EP at that point, hence why they’re only coming out now. I’m going in order of the EP tracklist so the first one up was ‘Bad Night.’
The video up and shared to all of my social media and WhatsApp groups etc, I had a long catch up on FaceTime with one of my parents before having dinner with my Mum. It was pretty late by that point and we were both tired so we watched a couple of episodes of Episodes (it’s one of our comfort shows – it’s not emotionally heavy and both Tamsin Greig and Stephen Mangan are brilliant).
I’m still sore from falling down the stairs so Mum gave me a massage (I’m so freaking lucky to have a massage therapist for a mother) and then we both headed to bed.
I was awake on and off throughout the night and I was wide awake between four and six am. Ugh. And then, of course, I fell into a really deep sleep that was a really struggle to wake up from. And because I’d slept later than usual – later than I usually start taking my current daily painkillers – I was in so much pain that I could barely move. I had to eat and wait for them to kick in before I could manage a shower. So… not the best start to the morning.
When I finally made it to the living room, Mum and I did the Census and then I logged into the blog and posted my International Day of Happiness post.
I spent the rest of the morning working through the feedback I’d received on my songs from this semester, which made the task of choosing songs for the assessment portfolio much more straightforward: I don’t think any of the songs I’ve presented are bad but there were some obvious standouts, all of which were actually in line with my gut instinct about what to submit. I just needed to work on them, based on the feedback, and then pull the paperwork together: the various drafts, the feedback, my notes, etc.
Early afternoon I had a writing session with my friend, Phill, but we ended up deciding that we’d gotten as far as we could online and so we’re gonna continue working on the song when we can meet up in person. We’re just having trouble with the lag time. I’m happy to do that and although that was the writing session effectively over, we stayed on the video call and just had a really fun and chilled out chat, which was really nice. Because socialising has to be so organised now, I’ve definitely found myself having fewer spontaneous and casual chats with people and I’ve missed that. So it was a really nice few hours.
After we hung up, I had some chill time. I was having a quick scroll through Instagram when I saw that Natalie Hemby, a songwriter I really admire, had posted about Travis Meadows, another songwriter I really admire, and how he’s been through A LOT recently…
I love Travis Meadows and his music so I went straight to the gofundme page. The video he’d made the week before, sharing for himself what had happened, was incredibly moving. I donated what I could and shared the fundraiser on all of my socials. (The fundraiser has since met its goal but is still open – I’m sure the hospital bills, past and ongoing, are much more than the original goal set.)
One of my parents came over for a bubble dinner and we watched Lucifer together and then I watched my friend Luce‘s online show. She played some great covers and acoustic versions of the songs she’s already released but she also played some new songs and they were incredible. They were so powerful. I can’t wait for everyone to hear what she’s working on because it’s truly amazing.
When her show finished, I had a couple of FaceTime calls with various family members and then went to bed. It was still really early – not even ten thirty – but I was exhausted.
I didn’t wake up until half nine and when I opened my eyes, I found three of the five cats watching me. Clearly it was long past breakfast time and they were impatiently waiting for me to deliver. So I dragged myself up, fed the clamouring masses (this is sarcasm just in case you couldn’t tell – I adore them), and had a shower, before settling in the living room.
I ate breakfast in front of the Netflix short Creating The Queen’s Gambit. I loved it, loved seeing how the whole thing came together, from the really obvious creative choices (like Beth’s hair and the sets) to the tiniest of details (like the interactions between the characters); it just made me want to watch the show again but I just don’t have the time right now. I would want to pay attention to all of those details and right now I have too much to do; the TV is pretty much just there for background noise at the moment.
I spent the morning working on my notes for my assessment portfolio. I was due to have a cowrite in the afternoon but then that got rescheduled to the next day. But I made use of the time: I spent several hours working on a research proposal for a Musicology conference. I’d absolutely love to present at this conference, so much so that it’s probably making me super perfectionistic about it. So I’m trying – I really am – to dial that back so that I can actually write the damn proposal. Because if I don’t write the proposal, I definitely don’t get to present at the conference.
After a few hours on that, I went back to my portfolio notes. It wasn’t a particularly interesting day but it was busy. I got a lot done.
Then, in the evening, I had another bubble dinner: pizza, Lucifer, and catching up. It was really nice. I couldn’t totally relax – I did a bit more uni work and some writing for various blog posts – but I had a really good evening. And then I went to bed early, completely knackered.
So it was a super busy week. But that’s not exactly new. I’ve been battling all semester with the danger of burning myself out before the assessment. I know that I really need to manage myself better. It’s just that sometimes my enthusiasm gets the better of me, especially when it comes to music things.
As I post this, classes have ended and the assessment deadline is coming up so I really need to concentrate on that. I just wish concentrating was easier. The practical work I don’t seem to have a problem with but the analysis – an essay that’s not really an essay – has me banging my head against my desk. It’s such a simple, straightforward task and yet I’m finding it so difficult. And on that note, I’m going to post this and go and work on it. Because there’s a hundred and one more things to do after I do that.
Category: adhd, animals, anxiety, autism, covid-19 pandemic, emotions, heds, mental health, music, sleep, therapy, university, video, writing Tagged: a week in my life, acoustic sessions, adhd, assessment, attention deficit hyperactivity disorder, blog writing, blogging, blood test, cat, cats, chronic fatigue, chronic pain, conference, coronavirus, covid-19, cowriting, cowriting session, creating the queen's gambit, dbt, dialectical behaviour therapy, ekphrasis, episodes, facetime, family, family of cats, folklore, friend, friends, glowy moment, grammys 2021, heds, honest ep, honest ep (sunburst sessions), hypermobile ehlers danlos syndrome, luce, major repertoire project, march 2021, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, musicology conference, my cats, natalie hemby, neurologist, nicola walker, occupational therapy, online classes, online concert, online learning, online university, pain, pandemic, pandemic 2020, pandemic anxiety, part time masters student, perfectionism, perfectionist, remote therapy, remote writing session, research conference, research proposal, seminar, singersongwriter, sleep, songwriter, songwriting, sunburst sessions, taylor swift, the highwomen, the one, the one netflix, the queen's gambit, therapy, travis meadows, unforgotten, university, university assessment, week in my life, writing session
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, 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, 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 October 28, 2020
Over the summer, I received a letter from the local Neurobehavioral Unit. My GP had referred me to them for specialist support for pain (joint pain and pain in general) and I had an appointment with a psychiatrist there who specialises in and has done extensive research into hypermobility, pain, fatigue, and anxiety. I had no idea what to expect or what I was going to get out of it but I’m always willing (even if sometimes a little wary of) trying new things that might help.
My GP had recommended I have a full set of blood tests first so that we had the full, up to date picture before the appointment so I had that done at my local doctors’ surgery. I was a bit nervous about going – with the pandemic and all – but it was quick and easy. I was in and out in less than fifteen minutes. We got the results back a week later: for the most part they were good (my iron is back within the normal range, which was the problem last time) but my Vitamin D was seriously low, so low that I’ve been prescribed a ten week course of Vitamin D supplements.
And then this week, I had the actual appointment.
It was an online appointment but the conversation felt surprisingly easy and natural. Dr J (I’ve decided to refer to her this way to protect my privacy, even though doctor-patient records are, of course, confidential) introduced herself and we talked a bit about her work and what we could potentially get out of the session.
We talked about my Autism diagnosis and she had me do a series of movements with my hands and arms, all of which confirmed a diagnosis of hypermobility. As far as I’m aware it was in the notes from my Autism assessment but it hadn’t been officially diagnosed in its own right. She told me that people with a diagnosis of hypermobility are seven times more likely to have a form of Autism. Seven times! She asked me lots of questions about pain and fatigue (both of which I seriously struggle with) and went on to explain that hypermobile people have weak core muscles which often results in fatigue and pain in other areas as the body compensates. That makes so much sense. It’s all so fascinating to learn. The more I learn about the things I’ve been diagnosed with, the more I understand how they’re all part of a bigger picture, how they link together like the strands of a spider’s web or stars in a galaxy. It all gets clearer and I feel less overwhelmed and less lost; it feels like seeing order in things that used to look random and that is so incredibly helpful. All of the things I struggle with often make me feel broken and moments like this help me in the slow shift from ‘broken’ to… ‘incompatible,’ or something like that. Something less personal. Is it a program’s fault if it isn’t compatible with the computer? No. And with that in mind, it all becomes more about problem solving and work arounds and less about right and wrong. At least, that’s the concept I’m trying to work towards.
She said she would write to my GP and have me referred for pain management, specifically for hydrotherapy. I’ve just started swimming again – Mum and I finally managed to find a pool with a set up that feels safe, or as safe as is possible right now and safer than the others we’ve spoken to – so that would be perfect; I would love to do it, to get fitter and stronger through exercise I enjoy (and that doesn’t cause me ongoing physical pain). I don’t know if it’s available right now – with the pandemic and social distancing measures – but I can’t wait to do it whenever it is. But in the meantime, Dr J recommended some exercises to do in the pool, as well as some very gentle floor based core-strengthening pilates.
She also asked questions about sensitivities, allergies, hay fever, dizziness on standing, lightheadedness, and symptoms like that. I’ve definitely experienced all of those, although not all consistently. When I’d answered all of those questions, she recommended I have a heart rate test and a blood pressure check and said she’d include that recommendation in the notes she’d send to my GP. If they showed numbers within a specific range, given the other symptoms we’d talked about, that could apparently give us another area to explore, health wise.
We also talked about my anxiety and the medication I take for it. She suggested an alternative that might be better suited to my situation so that’s something we’ll discuss with my psychiatrist when I next speak to him.
So Mum and I learned a lot and we have plenty of avenues to explore…
To be completely honest, it was a bit of a strange experience. I mean, it was really helpful and productive but it was odd for a very specific reason. It was easy. It was a conversation. She asked me things and I answered them. She believed me; she offered lots of advice and suggestions; she’s writing everything up and sending it to my GP. It wasn’t a fight… when up until now, it’s always been a fight. It was this beautiful, precious thing: to ask for help and have someone give it to me, with kindness and understanding and generosity. There will be more fights, I’m sure… more battles, but for now, I’m going to hold onto this feeling and memorise it so that I have it in my pocket like a touchstone for the next time I have to fight to get someone to stop and listen.
Category: anxiety, autism, chronic fatigue, diagnosis, medication, mental health, treatment Tagged: allergies, anxiety, anxiety disorder, appointment, asd, assessment, autism, autism spectrum disorder, autistic adult, blood pressure, blood test, exercise, fatigue, hay fever, heartt rate, hydrotherapy, hypermobile, hypermobility, medication, multiple diagnoses, neurobehavioral unit, nhs, pain, pain management, pilates, swimming, vitamin d
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.