Posted on October 9, 2021
One of the big things I’ve missed during the pandemic is concerts. They’ve always been a big part of every year and losing that – I haven’t been to a concert since Halsey’s Manic Tour in March 2020 – has been really hard. But it’s also hard to feel like they’re safe to go to, now that they’re happening again. I still have a lot of anxiety about going out and about being around a lot of people – it’s not as if COVID is no longer a risk – so going to a concert is a big deal. But normal life does have to resume at some point, even if it happens in baby steps. Since this first show – The Shires in Bromley – was a relatively small concert, it felt like a good one to try, to get the lay of the land in terms of safety precautions, to see how I feel in that sort of environment after everything that’s happened over the last eighteen months, and so on.
This wasn’t quite my first live music event: back in September, I went to my uni’s Songwriters’ Circle, the first one in person since before the pandemic. It was just wonderful. Everyone was so excited to be back together, so excited to get to hang out together, singing along at the top of our lungs. That is one of my favourite things about going to a music uni: everyone’s always up for a sing along.
But this doesn’t feel like a first concert to me, since I’ve been in and out of the building for the last couple of months as I finished my final Masters project. It was just some more people and music. Plus, I’m really comfortable with the safety precautions there: negative COVID tests to get in, a one way system around the building, lots of people still wearing masks even though they aren’t mandatory, and so on. I already feel safe there. But a concert is an entirely new ball game.
My first proper concert was The Shires at the Churchill Theatre in Bromley on the 5th October. It wasn’t a venue I’d been to before and road closures made getting there quite stressful, plus it was a pretty bad pain day: my back, my shoulder, and my wrists and hands. So while I knew I would enjoy the show itself, I wasn’t sure whether the stress and the pain would override that. Fortunately getting in was quick and easy and I didn’t have to spend too long on my feet. And although no one had to wear a mask once seated, negative COVID tests were required for entry so it felt as safe as it can, as anything can be at the moment.
Jake Morrell was the support act and he was great: he was funny and personable and had some good songs. My favourite was ‘This House,’ I think. And I liked ‘Freewheeling.’ I definitely want to check out more of his music.
And then The Shires – Ben and Crissie and some of their band – were on. It was so nice to see them; I’ve seen them so many times over the years and the eighteen months since the pandemic began may be the longest I’ve gone without seeing them. So, as I said in my Instagram post, it felt quite apt that my first proper concert back was them. It was a cool twist on their normal shows: it was all acoustic (being in the front row, it did feel a bit like my own personal concert) and they took the opportunity to play a lot of the songs that they don’t play often or haven’t played for years, like ‘All Over Again,’ ‘Drive’ (one of my favourites), and ‘World Without You.’ Of course they played the favourites too, like ‘Nashville Grey Skies,’ ‘State Lines,’ ‘Tonight,’ and ‘A Thousand Hallelujahs,’ which always get people singing along and dancing. Of their most recent album, Good Years, which they never got to tour due to the pandemic, they only played two songs and they happened to be my two favourites: ‘Lightning Strikes’ and ‘About Last Night.’ So that was cool. And they also played one of my all time favourites of theirs, ‘Daddy’s Little Girl.’ I connected to that song instantly – it being about the loss of a father and how, whatever else you are or end up being, the most important thing you’ll always be is his daughter – and it’s remained very special to me. I actually posted a short cover of it on Instagram years ago:
And to make a cool concert experience even better, they performed a couple of songs from their next album, that is apparently written and produced already so hopefully it won’t be long before we get to hear that. Of the two songs they played, I loved ‘Side by Side’ and I can’t wait to hear it again already. So that made the night extra special.
It was painful – as most things are right now – but it was a good night. It was so wonderful to be at a concert again; they really are my happy place, where I forget about the hard stuff (for the most part – I mean, you can’t exactly forget about physical pain when you’re in it). Hopefully things will continue to improve on the COVID front and concerts can, at some point, come back in full force. That’s the dream anyway.
I was hurting before we got home. I’d stayed sat down as much as possible to protect my knee but apparently my leg has a mind of its own because my foot kept tapping – and therefore flexing my knee – no matter how many times I forced myself to stop. And chronic pain and applause clearly don’t go well together so I think I might have to come up with an alternative for bad pain days (I’ve since found some suggestions here, or maybe the sign language version of clapping is the way to go). And the next morning, my whole body hurt and I was stiff and ache-y. My back and my hands were the worst and unfortunately my painkillers weren’t doing much more than taking the edge off. So that was a pretty unpleasant day but it was worth it.
So that was my first concert back. I honestly thought I’d find it more scary, more stressful – in the pandemic anxiety sense, that is. It was all a bit overwhelming for a moment going in but once we were in the auditorium and the show had started, somehow I forgot about COVID and my anxiety; I was just in the moment and completely absorbed by the music. That wasn’t something I’d expected and it was quite wonderful. All the anxiety, all of the precautions and planning… it was all so very worth it to have live music again.
Category: anxiety, covid-19 pandemic, emotions, event, favourites, heds, medication, music, video Tagged: anxiety, ben earle, chronic pain, concert, concerts, country music, cover, covid, covid-19, crissie rhodes, daddy's little girl, eds, ehlers danlos syndrome, heds, hypermobile ehlers danlos syndrome, jake morrell, live music, medication, pain, pain management, pain medication, pandemic, pandemic 2020, pandemic anxiety, safety precautions, singersongwriter, singing, songwriters circle, the shires, uk country, university
Posted on March 27, 2021
This post feels like it has been a long time coming but I didn’t want to post anything before I had more to say than ‘I’m in pain’ and, at long last, I do. But first, context: I started struggling with chronic pain about halfway through the first UK lockdown, early last year, and it’s been really, really tough. But recently I finally got some answers and started to get some support. And while it’s not a journey that’s over – if that’s even a possibility – I’ve come far enough that I feel like I can talk about it with a certain level of knowledge and emotional distance. So, here we go…
It started out as sporadic pain in my left hand and arm. I’ve experienced this on and off before, due to my extensive writing and my compulsive hair pulling, so I wasn’t overly concerned. Waking up to my hand being numb and tingly was unusual and a bit unnerving but given how much I was writing and how much hair I was pulling out – both of them being outlets for stress – during that first lockdown, I figured that I was just straining that arm a bit more than usual and that it would probably go back to normal as my anxiety decreased.
But then I started developing an ache in my left leg. I don’t really know how to explain it but it felt like it was coming from somewhere deeper than the centre of my leg, deeper than was physically possible. And then what started out as a painful but sporadic ache turned into attacks of debilitating pain, like electric shocks shooting through my leg at random. They were (and are when they still happen) excruciating and had me collapsing on the floor every time, sobbing or even screaming. There were a few so bad that I ended up hyperventilating so hard and long that I nearly passed out. And if that wasn’t bad enough, both the ache and random electric shock attacks spread up to my lower back. None of the common painkillers did anything and I was living in constant fear of the pain hitting me with no warning.
Eventually I was prescribed painkillers but I could only take them for a few days at a time to avoid their addictive nature. They actually – FINALLY – helped; it was such a relief. But the days in between were miserable and the painkillers I was taking in between was barely making a dent. I was also referred to Rheumatology at the hospital.
That was in May (of 2020) and I had to wait until December for an appointment. While, objectively, I can completely understand that, given how overworked hospitals are due to the pandemic, the waiting was also horrendous: I was in constant pain and desperate for help. It was hard to be patient, especially when it was affecting my education because the pain was so bad that I could barely play any of my instruments. It was a really hard time, and that was without all of the COVID-19 and other life stuff.
Eventually the appointment arrived. We didn’t learn much but it got things moving. The hypermobility diagnosis was confirmed and the possible diagnosis of Fibromyalgia was dismissed. I was referred to various departments, including Occupational Therapy, Hydrotherapy (although the consultant wasn’t sure when it would be available due to the pandemic), and, after discussing multiple different medications (many of which I’ve already taken and had negative reactions to), Pain Management. The consultant recommended I have an ECG every five years or so as heart problems can occur with connective tissue disorders and booked my first one for me, as well as an MRI, just to double check my back. She said we’d have another appointment in three months, after the ECG and MRI (it’s been more than three months at this point but I’m hopeful it will be soon since I’m still in a lot of pain).
After the wait for that appointment, I was expecting to wait for ages but we received a call about the MRI less than a week later. The woman who arranged it for us was really thorough and really aware of what might be helpful for me as an autistic individual, suggesting and putting in place so many things to reduce any of my anxiety; for example, I could have Mum in the room with me, I could play music, I could hear the sounds the MRI made before getting in it, she suggested taking Diazepam first, and so on. So that was really helpful. Surprising (I don’t think that’s ever happened before an appointment or procedure before) but very helpful.
The MRI itself was actually a really interesting experience. It was completely manageable and I actually found it quite soothing in a weird way. And, of course, my musician brain couldn’t help but wish I could sample the different sounds the MRI made to use in various tracks. It was over pretty quickly and the whole process was super efficient. I really want to see the images; I don’t know if she’ll bring it up but I’m gonna ask the consultant if I can see them at the next appointment. I’m weirdly intrigued. I mean, I’ve always been kind of fascinated by how my body works specifically (seeing my brainwaves was super cool, for example, and one day I’d love to see images of my brain) so I’m just really curious about what my spine looks like. Like every other spine, I’m sure, but I’m still curious.
(Throughout this time I had been swimming where possible – according to what felt safe and as lockdown allowed – and I’d started incorporating the basic hydrotherapy exercises that the hypermobility specialist had recommended.)
I was prescribed a new daily pain medication but I didn’t really feel like it helped (and I’m still not convinced that it’s actually doing anything helpful). The only thing that helped – and still the only thing that helps is the painkiller that I can only take for a few days at a time; it’s the only thing that has consistently given me pain free periods of time. But, as I said, I can only take it for a few days at a time and the other days are pretty awful.
Around New Year (2020-21), I noticed that the pain was spreading and by the end of January 2021, I was struggling with pain from my toes all the way up to my neck. I rarely experienced pain in my whole body all at once but it had reached a point where there was practically no area of my body that didn’t experience this specific type of pain and often for extended periods of time. My hands, arms, lower back, and lower legs were the worst.
I began Occupational Therapy in February for the pain in my hands. The therapist gave me compression gloves (I have tiny, skinny hands and so they turned out to be too big and I had to buy a smaller pair) and a series of ‘gentle’ exercises that would supposedly allow me to control the hyperextension in my fingers. Right from the start they were painful and I had to drop one of them straight away; it just hurt too much. But I worked hard at the others, whilst simultaneously trying not to work too hard and accidentally regress.
The therapist also discovered that the Pain Management referral hadn’t gone through and put a rush on it – apparently, because the pain is directly affecting my education, I should move me up the waiting list more quickly than if I wasn’t currently doing my Masters. So I guess that’s good news. Hopefully it makes up for the time lost with the referral not going through. She also had some suggestions around swimming during lockdowns, which unfortunately didn’t come to anything but it gave me hope and it was something to work on. That was better than just waiting.
In the following OT session, we talked about the pain caused by the exercises and she reduced them to every other day, which has been better, but I’m still in pretty much constant pain to some degree. But she was pleased with the progress I’d made. Unfortunately though, she thinks I’m probably in the group of people that take the longest to see real change. That’s not massively surprising to me – I’ve been in similar positions before – but it’s still frustrating. Like, out of all of this stuff, couldn’t one thing not be super hard? Couldn’t one thing have the best possible outcome? Anyway. It’s pointless to speculate about that stuff; it’s not like I can change it.
I’d been doing some research on hypermobility but as far as I can tell, it’s a symptom rather than a condition or disorder, like Joint Hypermobility Syndrome or Hypermobile Ehlers-Danlos Syndrome. And since only ‘hypermobility’ had been mentioned up to that point, I asked what my actual diagnosis was and after some conferring between the various people involved, they agrred on a Hypermobile Ehlers-Danlos Syndrome, which explains both the chronic pain and the chronic fatigue (I don’t know what this means for the Chronic Fatigue Syndrome diagnosis – at some point, we’re all going to have to sit down and work out which diagnoses are still relevant and which are now out of date), as well as multiple other problems. So there was this huge rush of relief and that lasted several days before I just felt overwhelmed. It’s an experience I’ve had before: finally knowing is amazing but then the reality of it all sinks in and it’s just a lot to process. Life is suddenly different. It’s not what you thought it was. So, yeah, it’s a lot. I’m sure you know what I’m talking about if you’ve been through a similar experience. But I’m getting there. The dust is starting to settle.
We’re still waiting on some of the other things, like the Pain Management referral and the second appointment with the Rheumatologist. And I’m continuing with the OT; I’ll be graduating to a new set of exercises soon. I’m also super excited to swim again when it becomes possible. We’ve already got several slots booked at our favourite pool. Plus, I’m due to get my first COVID vaccine soon, which will make me feel safer about swimming, even at this pool that takes the safety precautions so seriously.
So this is where we are. As I said, I didn’t want to write this post until there was a natural stopping point in the writing of it. And this seemed to be that moment: we have the beginning, the diagnosis (or diagnoses), and now we have the treatment. Obviously that’s ongoing and there are still different areas to pursue for support. So, I guess, all we can do now is see how things go and hope the pain improves.
Category: chronic fatigue syndrome, covid-19 pandemic, diagnosis, medication, mental health, treatment, trichotillomania, university Tagged: career, cfs, chronic fatigue, chronic fatigue syndrome, chronic pain, compression gloves, coronavirus, covid-19, covid-19 vaccine, diagnosis, ecg, eds, ehlers danlos syndrome, fatigue, heds, hydrotherapy, hypermobile ehlers danlos syndrome, hypermobility, lockdown, lockdown 2020, masters, masters degree, medication, mri, music, occupational therapy, pain, pain attacks, pain management, pain management referral, painkillers, pandemic, pandemic 2020, physical pain, rheumatology referral, singersongwriter, songwriting, swimming, university
Posted on December 2, 2020
On the 31st October, it was announced that England would be going into lockdown again on the 5th November so it seemed appropriate to revive this list. Having said that, it hasn’t felt like a lockdown at all with so many business, schools, and activities continuing still open; life seems to have continued as normal, which has felt very stressful. I don’t want to make generalisations though. I know that many people have stuck to the rules and been very careful and I am so grateful to everyone who has done so.
As a disabled person, my life hasn’t changed much with the lockdown. The only significant change has been that I haven’t been able to swim, the only exercise I am currently able to do. I can admit that that has been very frustrating and upsetting but if it helps to keep people safe, then that is something that I’m more than willing to do. I just hope that the sacrifices so many people are making are worth it – most so much bigger than mine – that they outweigh the lack of care that some people have shown. Just my two cents.
Now, to the list…
I hope that was interesting to read, that you got something out of this post. Hopefully there won’t be cause to revive it again but if there is, I guess we’ll see what I get up to. I hope you’re all staying safe and are coping the best you can. See you in the next post.
Category: about me, animals, anxiety, autism, book, chronic fatigue syndrome, covid-19 pandemic, emotions, event, meltdowns, mental health, music, treatment, university, video, writing Tagged: agents of shield, asd, autism, autism spectrum disorder, autistic, autistic adult, autistic meltdown, autistic student, behind the song, black friday, blogging, bonfire night, celebration, christmas, christmas shopping, close, conference, daisy johnson, essay, family, film, fireworks, folklore, folklore: the long pond studio sessions, graduation celebration, halsey, his dark materials, home recording, honest, honest ep, honest music video, honest single, i would leave me if i could, interview, joe biden, livestream, lockdown, lockdown 2.0, lockdown 2020, masters degree, masters degree in songwriting, masters degree year two, masters part time, medical tests, melodyne, meltdown, music industry, music video, my cat, my cats, nerve pain, netflix, neurodiversity, nicola walker, noise sensitivity, noomi rapace, noughts + crosses, pain management, pandemic, pandemic 2020, part time masters student, part time student, personal essay, poetry, poetry book, popwrapped, production, publication, published, recording, recording session, richard marc, richard marc music, richard sanderson photography, sensory overload, sick cat, singer, singer songwriter, singersongwriter, singersongwriter life, singing, songwriting, student, swimming, taylor swift, the queen's gambit, the split, tim minchin, trigger, triggered, triggers, university, us election, us election 2020, video, writing
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.