Posted on November 28, 2020
As opposed to my usual week-in-the-life posts, I thought I’d do something slightly different this time and zoom in on what it’s like to be an autistic student at university (one doing an MA in COVID-19 times anyway). This is obviously just my experience – as the saying goes, ‘if you’ve met one autistic person, you’ve met one autistic person’ – but I thought it might be an interesting post to write. I feel like it’s so important to share our experiences as autistic people, especially when media is being created that can be harmful to us (i.e. everything that’s been going on with Sia’s new film – I feel like I should be writing about that but I still don’t know how to; it makes me so upset that I can’t really write anything that feels articulate enough to represent the significance of the issue). So I hope this is an interesting read.
THE NIGHT BEFORE
Monday was hugely busy, with a production session, two doctors appointments, and working on the essay of the module in the spaces between. I’ve been working on it somewhat steadily but since I have a feedback session coming up, I’ve been a bit more random in my approach to writing it – fitting writing time in wherever I can or just writing about certain things as they occur to me – so that I can get as much out of that session as possible.
So it was one of those days where I barely had time to think.
On Monday evenings, the Masters course have a song sharing session between 7.30pm and 9.30pm. I’ve been a couple of times but I tend to find it too much. I’m most creative at night and so filling my head with new songs and song analysis right before I try to sleep really messes up my ability to sleep, which I have to try to do relatively early with my first class on a Tuesday at 9am. And if I don’t get enough sleep on a Monday night, I’m useless in every class on the one day I have classes. So, unless there’s a really good reason, I can’t really prioritise them.
I also find them quite hard socially: as much as doing the Masters course part time was the right thing for me, it has meant that for both years, I’ve never quite felt part of the group. There’s a handful of us in the same position and I can’t speak for them but it’s always left me feeling a bit ‘other,’ like I don’t really fit anywhere – not quite part of the group in the first year and even less part of the group in this second year. Everyone on the course is lovely but it does have a pretty big impact on the social side of the course. And when you struggle with feeling like you don’t fit in, it’s hard to feel it in yet another area of your life. So sometimes that factor just makes it too hard on my mental health. Maybe it will feel easier when one of my best friends rejoins the course in January.
So, instead, I used the time to do some more work on my essay before emailing everything required for the feedback session to my tutor (I wanted to make sure he had enough time to go through it all before we met on Wednesday afternoon). Then I tried to unwind a bit. Somehow I still ended up going to bed too late – not that 11pm is hugely late but for me, the night before a class, it’s on the border of being dangerously late.
I have a prescription for sleeping pills because my anti-depressants can cause problems with my sleep but I try to avoid them where I can. Having said that, knowing how exhausting a uni day can be, I usually take one the night before to make sure I’ve had enough sleep to give me the best chance of getting through said long uni day.
THE DAY ITSELF
I wouldn’t say I slept well and I struggled to get up but I’ve had worse nights so I just tried to push through the fatigue. I got dressed and made up and then collapsed on the sofa for a rest. Standing for the time it takes to shower, get dressed, and do my make up makes me feel weak, and lightheaded, and sick – something we’re still investigating with, unfortunately, very little progress – but getting up as early as I had meant that I did have enough time for some recovery time. It’s all down to planning. My life is dependent on planning. I also managed to eat some breakfast and take all of my pills. I’m taking quite a few at the moment – more than the ‘normal’ ones that help me maintain my mental health – because of a Vitamin D deficiency and horrible nerve pain down my left side (I’ve been waiting for a hospital appointment for the latter since about April or May, which may be my personal record for appointment waiting times).
My seminar started at nine (if you’ve read my previous university posts, you’ll remember that I’m doing all of my classes online this semester). My normal tutor (who is legitimately one of the loveliest people I’ve ever met) started the class before handing us over to a guest tutor who gave us a two hour class on arranging strings and horns. He was incredibly knowledgeable and engaging and so it was really interesting. Plus, Tiger came and sat with me for most of it, which was very nice. University with cats is a definite advantage of online lectures.
I was struggling to concentrate by the end of the class so I was relieved when we wrapped up. It was a lot of knowledge and sensory information to try to process and sort through and digest. I felt more than a bit dazed. Fortunately, the session was recorded so I can either go back and listen to it in shorter sections or go back and search for something specific.
My next class wasn’t until five so I had rather a lot of time to fill. Pre-pandemic, I’d hang out at uni and do cowrites, go to the favourite local coffee shop with friends, or work on whatever was on the list at the time but I’m finding it much harder to use this time effectively, whether that’s due to having my classes online or down to the pandemic just really screwing with my brain. Stuff that wasn’t hard before is now and the only thing I can put it down to is the pandemic, even if I don’t know precisely why. All I know is that it’s a weird time and so it shouldn’t be surprising that certain things aren’t the same as they were before. But it’s still frustrating to have such a big block of time that I could be using productively and not have my brain cooperate. Early in the semester, I ended up staring at my laptop screen, desperately trying to work on stuff and just not being able to. I got more and more frustrated and demoralised and eventually I just had to accept that this is not productive time. So I’ve been trying to come up with ways to fill it that aren’t too demanding but still feel like there’s a point to them; I don’t want to feel like I’ve wasted it by just staring at my phone or mindlessly jumping between the open windows on my laptop because that’s just not good for my general mental health. So I’ve been trying things like reading or watching new movies or TV shows – these have been good sources of inspiration in a time where I’ve struggled to find inspiration – or having a nap if I need one… Things that don’t require a lot of energy but still feel worthwhile (most of the time).
I did a quick scroll through my social medias to see if there was anything that needed replying to and then did some admin work: replying to emails, updating my bullet journal, and so on. Just as I was about to move onto something else, I got a load of notifications from social media, all Taylor Swift announcing her acoustic concert film going up on Disney+, folklore: the long pond studio sessions. That was so exciting that it temporarily scrambled my brain, in both a good and a bad way. As an autistic person, I’m really not a fan of surprise drops because I just get hit by a tidal wave of emotions and I feel so overwhelmed that I actually feel sick. I don’t want to sound ungrateful for the film because I am so, so grateful for all that Taylor has been putting out during the pandemic (her work really has been one of the things that’s helped me during this time) but the suddenness with which she’s been announcing things has been difficult because that doesn’t give me enough time to do the emotional processing that I need to do. So although I eventually settled into being really excited, I spent a lot of the day feeling painfully twisted up and anxious over the mess of emotion I was experiencing.
That did leave me floundering quite a bit, I have to confess. So, to try and take my mind off of everything I was feeling, my Mum and I caught up with the latest episode of His Dark Materials. It did help a bit. It’s such a great show; the casting, the acting, the sets, the interwoven storylines, etc are all so beautifully done. I loved the first series and I’m really enjoying the second one. I love Dafne Keen as Lyra (I so related to Lyra’s reaction to popcorn – it was freaking hilarious) and Amir Wilson as Will but I think it was Ruth Wilson as Marissa Coulter and Lin-Manuel Miranda as Lee Scoresby who really stole the show this week (pun actually not intended – if you know me, you’ll know I love a good pun). Their big scene together was just so powerful and how Ruth Wilson played the aftermath was particularly emotive.
I spent an hour or so working on a new blog post but after a while, I was just getting slower and slower and eventually I gave up and had a nap. I slept for about two hours before struggling up for my second class at five. I could’ve easily slept longer but I did my best to shake it off and concentrate on the workshop. This is where we (in this case, all of the 100% online students – the rest are blended and do the workshop in person onsite) share the songs we’ve been working on over the week and get feedback from the rest of the group. For most of the semester, we’ve had briefs each week but now we’re just working on whatever’s right for us. So, for example, I didn’t have a song to present because I’ve been working on the feedback for previous songs and the essay, rather than a new song (although I did recently write a rap, although I’m not sure whether I ever want anyone to hear it). Everyone else had songs to play though so I could still participate and give feedback, although I’m not sure how helpful I was because of how tired I was. But I tried. Some days I was just have less energy to work with than others.
I had an hour break before the evening session, which runs from seven to nine; they’re technically extra-curricular but I try to attend them when I can, especially now that they’re online and therefore more accessible. I don’t want to miss out on anything I don’t have to.
During my break, I had a quick dinner and catch up with my parents. The Grammy nominations had also been announced so I went through those. I’m super pleased for Taylor Swift: folklore is such a great album. Six nominations – Album of the Year, Song of the Year, Best Pop Solo Performance, Best Pop Duo/Group Performance, Best Pop Vocal Album, Best Song Written For Visual Media – is incredible and I’m really excited for her. Personally, I think she deserves at least several of those, especially considering the other nominees. I’m absolutely psyched for Ingrid Andress and her three nominations: Best New Artist, Best Country Song, and Best Country Album. I’ve been following her for years, having met her in Nashville at least a couple of years before her album was released. She’s an amazing writer and it would be just so awesome for her to win even one Grammy award this early in her career. But I’m concerned about her chances; she has some serious competition in all of those categories. The Best Country Song category, for example, is incredible, full of so many amazing songwriters that I love so much: Natalie Hemby (‘Bluebird’ by Miranda Lambert and ‘Crowded Table’ by The Highwomen, a group of which she’s a member), Maren Morris (‘The Bones’), and then Ingrid, of course. I want them all to win it. I was disappointed that Halsey still hasn’t been nominated. Manic is such an incredible album, as is Badlands (Live from Webster Hall), and it’s so frustrating that she doesn’t get the industry recognition she deserves. Especially given how popular ‘Without Me’ was, I’m really shocked that she’s never been nominated.
I just made it in time for the late session, which involved two of last years graduates presenting their final projects, one about using songwriting to explore different aspects of personality and the other about the experience of their gender transitioning and how sharing that story has the potential to increase understanding and empathy and break down barriers. They were both really cool projects but it was also massively helpful to see their processes, how they’d developed their ideas and researched them and how that research had lead them to writing the songs they wrote. It was fascinating and I definitely feel more prepared for my own project. I’ve got several ideas I’ve been turning over and the presentations have been helpful in my decision making process too. So I got a lot out of it, even if I was completely exhausted by the time the session finished.
It was about half nine and I probably could’ve gone straight to bed but I went and spent some time with my Mum, watching some TV together as we both wound down from the day. But it wasn’t long before we were both falling asleep so we put the cats to bed (they sleep in the kitchen so that we’re not woken up at five – the time they start demanding breakfast) and headed to bed ourselves.
THE NEXT MORNING
I’m not one of sleeping in so I always set an alarm. Then I can get up and start doing things (I have a real problem with needing to be productive) but usually, the day after a uni day, I sleep through the alarms I set. It doesn’t seem to change anything though. I keep setting alarms and sleeping through them. But that morning was special. I dragged myself out of bed at eight to watch folklore: the long pond studio sessions, as soon as it was available. It wasn’t particularly enjoyable to get up when I was so exhausted but it was absolutely worth it. The film was amazing, so amazing that I still haven’t figured out how to put all my feelings into words yet.
Since this post is just about my day at uni, I won’t write much more but just as I wrote about the Monday night, I thought I’d write about the Wednesday morning. Usually there isn’t a brand new Taylor Swift film to watch so I try to rest and recover my energy – physical, mental, and emotional – from the day before. As I said, I’m struggling with this need to be productive all of the time so with that in mind, I try to schedule undemanding tasks for Wednesdays. That particular day, I had a couple of half hour tutorials with tutors, so I spent the morning making sure I was ready for those. I’d already made notes of what I want to ask and discuss so I spent the rest of the morning going through those to make sure I felt as prepared as possible.
So, as you can probably tell, it takes a lot of planning and prioritising and rationing of energy to make it possible for me to go (or at the moment, ‘go’) to university, to make it possible to live my life in the most positive and productive (to a healthy extent) way. This isn’t an unusual day for me. While stuff like big Taylor Swift announcements and the Grammy nominations don’t happen every day, there’s often something that can cause emotional reactions like the ones described and I deal with fatigue and anxiety everyday. It’s one big juggling act. Every day. One enormous, exhausting juggling act every day.
Category: about me, animals, anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, emotions, medication, mental health, music, sleep, university, writing Tagged: ableism, anxiety, arrangement, asd, autism, autism awareness, autism spectrum disorder, autistic, autistic adult, autistic student, blog post, blog writing, cat, cfs, chronic fatigue, chronic fatigue syndrome, concentration, dafne keen, day in my life, depression, distraction, distress, emotional, emotional overload, emotional overwhelm, emotions, energy, energy levels, essay, essay writing, family of cats, fatigue, feedback, feelings, final project, focus, folklore, folklore: the long pond studio sessions, friend, friends, grammy 2021 nominations, grammys, grammys 2021, halsey, his dark materials, ingrid andress, instrumentation, lin-manuel miranda, lockdown, lockdown 2020, major repertoire project, maren morris, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, mental health, music, musical arrangement, my cats, nap, natalie hemby, nerve pain, online classes, online learning, online university, overloaded, overwhelmed, pandemic, pandemic 2020, part time masters student, part time student, prioritising, productivity, rationing energy, recovery, recovery time, rest, routine, ruth wilson, schedule, seminar, sensory information, sensory overload, sensory sensitivity, sia, side effects, sleep, sleep schedule, sleepiness, sleeping, social media, socialising, songwriter, songwriting, student, taylor swift, time management, tired, tutorial, tv show, university, visibility, vitamin d, vitamin deficiency, waiting list, workshop, writing
Posted on November 23, 2020
For a long time, I avoided all things superhero because they reminded me of my Dad who died suddenly in 2008, when I was thirteen years old. He loved superheroes and passed that love on to me: we’d spend Saturdays watching Justice League and Teen Titans, drawing the characters and designing our own heroes and villains. It was something really special that we shared but when he died, they just became a painful reminder of what I’d lost. So I avoided anything related to superheroes for a long time.
But then, at some point in 2015, I stumbled upon Agents of SHIELD and instead of the hollow ache that I’d come to associate with anything superhero related, something just pulled me in. I loved the characters, I loved the relationships, I loved the stories and the different aspects of sci-fi and drama and action that they explored. I also loved how they didn’t take themselves too seriously, but how they also let the heavier moments rest and breathe. I can’t really explain it but for the first time I felt comforted by the superhero world, rather than saddened by it.
I instantly loved Daisy Johnson. Now, I could write a thesis on her (I’ll try not to, I promise). She’s smart and funny and tough; she also feels her emotions deeply and is incredibly driven, often by those deep emotions and her sense of what’s right and wrong. Over the seasons, we see her go from a foster kid turned hacktivist, trying to find information on her parents to a loyal, dedicated agent and superpowered hero. Of course, she grows up and goes through a lot in that time: she’s betrayed by people she trusts; she develops powers that allow her to manipulate vibrations, to the extent that she causes earthquakes while unable to control her abilities (or emotions); she discovers that she’s a descendant of an ancient race that call themselves Inhumans and finally meets her biological parents, only to be caught in a war between the Inhumans and SHIELD; she guides new Inhumans as more and more gain their abilities (a result of the war); she becomes a leader; she loses more loved ones than anyone should; she isolates herself after she’s brainwashed, unable to forgive herself for the harm she causes; she struggles with trust and guilt and how dangerous her powers make her; she finds herself in a virtual reality, in a dystopian future, far out in distant space, in an alternate timeline… But through all of that, she finds family in her team and a place to belong in SHIELD, two things she’s spent her whole life searching for.
She’s not perfect, of course – she makes her fair share of mistakes and bad decisions. Sometimes she hurts the people she loves. But while every blunder becomes a part of her, she doesn’t allow them to define her. She’s defined by the future, by what she does next. She inspires me to be the same. And above all else, her motivation is to help people and that’s something that’s never changed; it’s something that’s at the very core of her and I find that really inspiring too.
The show ended a few months ago and if I’m honest, I’m still trying to get my head around that. How can my favourite show be over? But if it had to end, they couldn’t have done a better job. The last two episodes of the season are some of the best they’ve ever done (although I’m not sure anything could surpass the legendary time-loop episode) and the final scenes are as heart-warming as they are heart breaking.
*Major spoiler alert* The season (and the show) end with the team meeting (bizarrely enough, through an ultra sci-fi version of Zoom) for the first time in a year. They catch up for a few minutes before leaving one by one, giving us the opportunity to see what adventures they’re in the midst of now. Eventually the only two left are Daisy and Phil Coulson (“It was so special to have that moment with Clark [Gregg].” Chloe Bennet says), without whom the show would never have existed. It’s kind of funny: the show would never have existed without Coulson and neither would Daisy, had he not pulled her out of her van and onto the SHIELD plane. From that moment on, there’s something really special about their relationship. Every relationship in the team is unique and special but there’s just something about Coulson and Daisy’s relationship that has always felt bigger than words. There’s definitely elements of student-teacher, best friends, partners in crime, and father-daughter (the last comes up throughout the show), but again, it seems to transcend all of those. The actors seem to agree, and both have spoken about how similar that relationship is to their relationship in real life.
“It’s such a dynamic friendship in a way that you don’t really see that often in life, let alone on TV. He is a coworker, and people say father figure, but he’s so much more than that. He’s a friend, a mentor, he’s hilarious. I just feel so special to have such a unique, dynamic relationship with this person. And obviously that shows up on camera and it’s nice. It’s really special.” (x)
“From the first interrogation scene with Skye, after we pulled her out of her van, there was just something different about Chloe Bennet. And the way she has a realness and a fire to her as a performer. There are a lot of great actors to work with on that show but the through line of that relationship, that friendship, that family-type relationship… people say father/daughter, and it definitely has that in it, but I think, like my relationship with Chloe, it has so many permutations and it isn’t that simple. Where she’s helping and teaching and rescuing me as much as I’m doing that for her. For me, it was that part of the show where I grew the most as an actor and as a human,” says Clark Gregg. (x)
This relationship has always been one of my favourites on the show and one that’s felt very close to my heart. Maybe that’s due to the loss of my own father and watching a character I love and relate to find that relationship, I don’t know. But I’m grateful that we got one last moment between the two of them. The atmosphere is warm and supportive, and they exchange a few meaningful words before parting. Daisy tells Coulson that he’s still needed out in the world, finding new recruits for SHIELD, commenting on one final thing that has come full circle in this final episode: Coulson was the first person to believe in her, which ultimately led to who she is today and now she is following in his footsteps, the first to believe in her sister (discovered in the alternate timeline) and guiding her on the road to becoming a SHIELD agent. It’s a very emotional moment, even as the actors carry it off effortlessly.
Coulson leaves and Daisy takes a moment to look around at all of the empty chairs. But it’s not the end. She evidently has ongoing secret communications with Simmons and they’ve promised to meet up as a team at the same time and place every year (although, in my head, they meet in various combinations between those full team gatherings). Then she removes her communications device and we discover that she’s on a spaceship – the commander of said spaceship – with Daniel Sousa (her new, taking-it-slow-but-utterly-head-over-heels-for boyfriend) and her sister, Kora. And the last we see of her is the three of them staring out at a stunning nebula.
(Apparently the nebula was never officially named but Jed Whedon, writer of the episode, left it as: “The three look out at the Nebula, an otherworldly multicolored cloud of space dust. A new family.” (x) That made me super emotional: the show began with Daisy searching for her family, finding a completely unexpected family in SHIELD, and the show ends with her building a family, or an extension of her existing family. So that quote felt very special.)
In these final scenes, there’s something different about Daisy. Yes, she’s still Daisy – there’s always been something incredibly consistent about her as a character, right from the beginning – but there’s also something we haven’t really seen before. There’s a sense of calm, a sense of peace. She knows who she is, she has complete faith in herself and her abilities, and she’s surrounded (physically and emotionally) by people who love her and support her. As Chloe Bennet says, “There’s a lot more groundedness within her.” She’s grown into someone her season one self could never have imagined and it’s incredible. I found it more inspiring than I can put into words, considering how much of myself I see in her as a character. Her ‘ending’ gives me hope.
I got caught up with season seven a few days before the finale. It was clear the finale was going to be incredible and I just felt that I wanted to do something to commemorate how much the show and how much Daisy meant to me, how much of an effect they’ve had on my life. I thought about it and decided that I wanted to get a daisy tattoo: to remind me how much this show and this character have meant to me and helped me through hard times; to remind me of Daisy and all of the things about her that inspire me, like her determination, her strength, her resolve to help people, and so on; to honour the love of superheroes I share with my Dad and that connection we will always have.
At some point between that moment and the finale, Chloe Bennet posted on Instagram, asking for suggestions as to what she should do with all the stuff she’s collected from her time on the show. I replied with some ideas but I also thanked her for all the show and Daisy have done for me, as well as my plan to get a daisy tattoo. And then – on the day of the finale, a plan she’d apparently had for a while – she posted a couple of photos on Instagram… of herself getting a daisy tattoo.
I couldn’t believe my eyes. It put the biggest grin on my face. I loved the idea that we’d both had the same thought process over commemorating Daisy, although obviously Chloe Bennet’s relationship to Daisy is on an entirely different level to mine. In one interview, she said: “I definitely would [play her again]. I mean, I have such a soft spot for her. I started shooting the show when I was 20, and then I finished when I was 27. To get this time right now, in isolation, to kind of contemplate the past seven years and how much it’s meant to me – it hasn’t really hit me yet that the show is over, so it doesn’t really feel like I’m done playing her yet.” And in another, she said something similar: “I don’t feel like I’m done playing her. I feel like there’s room in the Marvel Universe for more Quake. So hopefully you’ll see that happen!”
When this fan-made trailer appeared, at least half the internet fell for it, believing that a Daisy centric show was in the works. You’ll see why when you watch it.
It’s stunning, a perfect summation of Daisy’s story so far and an exciting look at how her story could continue. As much as I’d love a show about Daisy, or really just any extra Daisy content, the idea does make me a little nervous. She’s been so beautifully developed as a character that I’m not sure I’d trust her with anyone but Jed Whedon and Maurissa Tancharoen (the main showrunners of the series from the start). But knowing how much Chloe loves Daisy, I doubt there’s any reason to worry; Daisy couldn’t be in safer hands. I love Chloe Bennet and find her hugely inspiring too but I think I’ll save that for another post, otherwise we could be here forever…
And as I said, I probably wouldn’t have had any of this without Dad. And while the loss of him – that scar, that hole – will always be there, having this thing that he loved so much – this love that he passed on to me – back in my life has been a healing experience. The characters, the stories, and the lessons they teach us are his legacy to me and I’m grateful for whatever it was about Agents of Shield that made me feel able to engage with these worlds again.
Today would’ve been his birthday and while I have no way of knowing what life with him in it would have looked like, I like to imagine that we would’ve spent the day together: swimming in the morning (another thing we often did together) and then spending the afternoon and evening curled up on the sofa, taking turns choosing episodes of our favourite superhero shows. And I have no doubt that a great deal of them would’ve been from Agents of Shield.
Category: about me, death, emotions, favourites, video Tagged: agents of shield, agents of shield finale, agents of shield season 7, alternate timeline, bereavement, birthday, canon, chloe bennet, clark gregg, coulsonlives, dad, daisy johnson, daisy tattoo, death, family, fan made, fan made trailer, fantasy, father, favourite, favourite tv show, finale, finale episode, friendship, grief, guilt, headcanon, hope, inhuman, inhumans, inspiration, inspired, inspiring, instagram, jed whedon, legacy, loss, marvel, marvel universe, maurissa tancharoen, memories, phil coulson, powers, quake, quote, relationship, skye, space, superhero, superheroes, superpower, superpowers, tattoo, timeline, trailer, trust, tv show, video
Posted on November 21, 2020
As I’ve mentioned before, I’ve struggled with extreme fatigue all my life (I talked about this in my ‘Tired‘ blog post); Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (often referred to collectively as ME/CFS) have been tossed around since I was twelve years old but I wasn’t officially diagnosed until last year. This kind of acute ‘unexplained’ fatigue – unexplained as in there is no obvious cause, such as exercise or lack of sleep – is also a common experience for autistic individuals, as well as related symptoms like headaches and bodily pain.
I’ve been managing these high levels of fatigue for most of my life, trying various things to improve my quality of life. And I continued searching for a cause. I had test after test but nothing ever gave us an explanation. I resisted the ME/CFS diagnosis even as it seemed more and more likely because there’s no cure, not even a reliable method of management, but eventually it seemed the only way to move forward. So, after a long talk with my GP, she officially diagnosed me with Chronic Fatigue Syndrome and we began discussing various options for next steps and support. She referred me to the local Chronic Fatigue Clinic and I anxiously awaited my session.
It was a bitter, heart-wrenching disappointment. I left in tears. Maybe it would’ve been helpful when I first started experiencing these symptoms (I think the longest any of the others there had been struggling was two years) but twelve years in, I knew more than the person delivering the information, had found everything suggested to make no difference or be outright unhelpful, and I just felt so patronised. It was an awful experience and I couldn’t help but feel so angry that this was the best on offer for what I was trying to manage and had been trying to manage alone (in terms of the health system) for more than a decade.
When we spoke to them after said awful session, they referred me to a doctor that we realised I’d previously seen – years and years ago and had a very traumatic experience with. I was obviously very reluctant to go. My Mum and I spent a lot of time talking about it, about the pros and cons of going and not going. The scary thing is that it’s so easy to get kicked off every list with one refusal so I said that I would go, despite having had such a distressing appointment with him – one I’m sure he doesn’t even remember. But before we contacted that clinic, we spoke to my GP again. We explained how upsetting the experience had been and how worried we were that it was only going to be worse this time, considering I would be going in with the baggage of the previous appointment; we told her that I would go if that was how it had to be to continue on this path but she felt that we were right, that it wouldn’t be helpful given the circumstances and as I’d technically already seen him, it wouldn’t cause any problems in the system. We asked if there were any other options and this was when she referred me for the hypermobility assessment (these posts are now out of order, not only because it’s been such a confusing and complicated process, but also because I’ve had trouble keeping things like this clear and ordered in my head since the pandemic started).
I’ve now had this appointment and been diagnosed with hypermobility, which potentially explains (at least in part) my problems with fatigue and pain. (At some point, we’re going to need to lay out all of these diagnoses and work out whether there’s any overlap, whether any of them are now redundant. But that’s a job for another day.) Apparently those with hypermobility are seven times more likely to be autistic, which is a very interesting piece to add to the whole puzzle. The post goes into it in more detail but basically, we’re now waiting to find out whether or not various routes are possible. For example, I’ve been referred for hydrotherapy but we don’t know whether I’ll get it and if I do, when it will be possible with the pandemic and lockdown. That has really stalled things. So it’s one waiting game after another.
But we’re not simply waiting. We – my Mum in particular – are also looking into other angles, other medical professionals who specialise in fatigue or who have studied fatigue in depth. We’ll take any advice we can get. I resisted a diagnosis of CFS for so long because it felt like admitting defeat – an expectation that I would just have to live with it with limited options – but I don’t accept that, not anymore. I’m participating in every research study I can find that I qualify for and my family and I continue to research potential specialists and potential avenues of treatment or even simply more effective management of the symptoms. The pandemic makes it hard but I am not willing to accept that this is going to be my life, that there’s no hope. Not that long ago, NICE (The National Institute for Health and Care Excellence) removed ‘graded exercise therapy’ as a treatment for ME/CFS, after both research and those suffering with the condition proved that it was actually unhelpful at the very least. It’s slow but it’s progress. And I’ll take all the progress I can get.
Category: autism, chronic fatigue syndrome, covid-19 pandemic, diagnosis, sleep, treatment Tagged: asd, autism, autism spectrum disorder, autist, autistic adult, cfs research, change, chronic fatigue, chronic fatigue clinic, chronic fatigue syndrome, chronic pain, diagnoses, diagnosis, doctor, fatigue, gp, graded exercise therapy, hydrotherapy, hydrotherapy referral, hypermobile, hypermobility, hypermobility diagnosis, lockdown, lockdown 2020, me/cfs, multiple diagnoses, myalgic encephalomyelitis, NICE, pandemic, pandemic 2020, progress, referral, research, research study, research volunteer, tired, treatment
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.