Posted on November 7, 2020
I really wasn’t convinced when the government reopened the gyms. It seemed to me that they were (and still are) much more concerned about the economy than people’s actual lives and I couldn’t imagine how many gyms would be able to create a safe environment with good ventilation and social distancing. I was particularly worried about this in a swimming pool.
Because of my Chronic Fatigue Syndrome (CFS) and joint problems (which we now know are linked to being hypermobile), swimming is my only good source of exercise really. All weight-bearing exercise causes me extreme, disproportional fatigue and pain in my joints that can last for days. Half an hour can essentially end my day. So I’ve always relied on swimming for exercise, which I was obviously not able to do during the lockdown. And when the pools opened again, I really wasn’t convinced that it was safe. I was desperate to swim again (I can’t believe how much I’d missed exercising – my teenage self would not believe it, although, to be fair, I had always enjoyed swimming) so I was really keen to find a safe way of doing it, if there actually was one.
We spoke to the gym where I’m a member and tried to come up with a plan. Pre-pandemic, I would swim super early in the morning when the pool was all but empty but they wouldn’t be opening that early post lockdown because of a lack of lifeguards. That meant that, even if we arrived as soon as it opened, there were likely to be many more people than we were used to and that made me very nervous. They offered to rope off half the smaller pool that’s used as a family or therapy pool (for me as a disabled person) and suggested coming as early as possible as that was when it likely to be the least busy. I was very anxious but we decided to give it a try.
There was no one in the small pool when we got there and we got into our roped off section. It felt amazing to swim and stretch my muscles. I was almost giddy with joy. But the other side and the main pool started filling up fast, with no real social distancing. I could feel the panic rising: I could almost feeling the air becoming more and more contaminated (I know it was my anxiety and my overactive imagination but that’s how it felt). As much as I loved swimming again, eventually the stress just got too much and we had to go. I don’t think we’d even been in the pool twenty minutes. It was something though and my Mum and I discussed what we wanted to do, whether we wanted to try different times, and so on.
And then literally the next day, the gym emailed to say that they felt confident with their safety measures and so would be opening the pool up to more people which, as desperate as I was to keep swimming, killed my desire to go completely. It hadn’t felt massively safe during our first trip so I couldn’t even imagine coping with more people around. The whole situation just felt incredibly stressful and scary and my anxiety would rise just thinking about putting myself in that environment.
Mum met with the person in charge of the smaller pool and raised our concerns. They said they would get back to us after a wider staff meeting the next week but they never did. Mum went a couple of times at different times of the day and thought going right before they closed was a possible option but I still wasn’t convinced; my anxiety was just so high. Even thinking about being there made it feel difficult to breathe.
In the meantime, we looked for other options, other pools that weren’t necessarily attached to gyms but where you might be able to book a slot in a lane. We went through several possibles with no success but after a while, Mum found a pool that were booking out lanes in the evenings, an hour at a time. She had them talk her through all their safety measures, which were extensive, before going to try it out. She came back with positive reviews so I thought seriously about whether I felt comfortable trying it out too.
It took a few weeks before I felt okay about going and their serious safety measures were comforting: everyone was wearing masks (right up until they were in the water); they took everyone’s temperature as we went in; we changed in little tent-like pods, each numbered, and then put our bags on chairs of the same number, situated by the changing room door (that way they knew which ‘changing pods’ had been used so that they could disinfect them, ready for the next group of people); and then once in the pool, the lanes were wide enough that you could properly social distance. So the whole set up felt significantly safer. And an extra bonus: they turned off the main lights so the room was lit with just the pool lights, creating a very calming atmosphere. It was gorgeous. And, as an autistic person, it made the whole thing a lot easier as a sensory experience. The glaring lights at swimming pools can be a bit of a challenge sometimes. So this was wonderful.
It was utterly glorious. I had such a good time. Being in the water, feeling weightless, swimming lengths, swimming down to the bottom at the deepest point, exercising my muscles… It was awesome. I loved every second. I was completely exhausted by the time I got out but it was the good kind of exhausted. It felt great. And I’d felt as safe as I think I possibly could have in the present circumstances. It was giddy with joy but also gutted that I had to wait a whole week to experience it again. I would’ve loved to do that more than just once a week.
Unfortunately the second trip wasn’t quite as pleasant. Either the rules had changed or my understanding of them had been incorrect because they were putting people from different ‘social bubbles’ or (whatever they’re called) in the same lane, which, as far as I could tell, didn’t allow for social distancing. I ended up having something that was somewhere between a meltdown, a panic attack, and an ‘episode’ of Misophobia/Germophobia (I don’t know if I’d say I have this phobia, but I’ve definitely had ‘attacks’ of it when the fear of germs or feeling contaminated is so overwhelming that I’m almost unable to function). Anyway, I was frozen there, hanging onto the wall of the deep end, unable to do anything. Like I said earlier in the post when talking about the other pool, I could almost feel the air becoming cloudy with the virus, feeling it coating everything, even the water. It was horrifying, like being trapped in a film where the world ends.
The staff were apparently very concerned and desperate to help but I couldn’t do anything but hang on to the wall; I don’t know if I would’ve had the wherewithal to swim if I’d slipped underwater. But eventually my Mum was able to coax me back to swimming, even though I kicked and cried, utterly terrified in a way that I can’t really explain now. It must’ve taken half an hour at least; I was freezing cold and apparently my lips had gone blue. After a while, I did manage to recover to some extent, at least enough to swim a bit, to warm up and not waste the time we had in the pool. The swimming felt good but the experience as a whole had been horrible and exhausting and I really wasn’t sure whether I felt safe there anymore.
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Last night’s swim didn’t go quite as well as the first. A sudden change in the rules, or at least my understanding of them, sent me into a meltdown (or maybe it was a panic attack – it didn’t quite feel like either), leaving me completely frozen, clinging to the side of the pool at the deep end. It was horrible. But my parents and the staff were great and eventually I did somehow manage to recover and get something out of the rest of my time there. Physically, I feel like shit today but that’s not unexpected. Such is life. I’ll take things gently and hopefully still get the best out of the day.
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The busyness of that night proved to be an anomaly so, although I was anxious – and to a certain degree, reluctant – I kept going and it was better. I loved it: the weightlessness, the stretching of my muscles, the exercise that came with just a proportional amount of pain afterwards, the aching of long unused muscles, rather than agony that felt like the crunching of glass in every joint. It was wonderful.
Several weeks in, I had my hypermobility appointment, which was really interesting in the context of my gravitation towards swimming because swimming and even hydrotherapy are recommended for hypermobile individuals; it allows you to exercise and strengthen your core in particular (the commonly weak part of hypermobile bodies, although it often ‘refers’ pain to other parts of the body) without putting undue pressure on your joints. This made so much sense to me, particularly as I’d been struggling with ache-y muscles in my chest and stomach after swimming when I’d expected to feel that ache in my arms and legs. That appointment resulted in a referral for hydrotherapy but the doctor also recommended some particular exercises to do in the pool in the meantime.
However, before I could even get back to the pool again, the second national lockdown was announced. So, just as I was making progress (and getting some real joy out of exercise), I was running headfirst into a massive brick wall. I agree that, with Covid-19 cases rises in England, we need another lockdown but I can also be gutted that I can no longer swim, at least not for a while. And the sacrifice would actually feel worthwhile if this was a real lockdown but while schools and universities are open – allowing students to mix with any number of other people – it’s not. It’s not going to make a significant difference and it’s just going to sow the seeds of doubt about whether lockdowns work, which THEY DO IF DONE PROPERLY. Anyway, I’ve gone on a tangent. I don’t know when I’ll be able to swim again but I’m grateful to have somewhere that takes the safety measures so seriously to go when it is possible. I’m looking forward to it. I’m really, really looking forward to it.
Category: anxiety, autism, chronic fatigue syndrome, covid-19 pandemic, diagnosis, meltdowns, treatment Tagged: anxiety, anxiety attack, asd, autism, autism spectrum disorder, autistic, autistic adult, autistic meltdown, autistic meltdowns, cfs, chronic fatigue, chronic fatigue syndrome, contamination, coronavirus, covid-19, exercise, exhaustion, fatigue, germophobia, gym, hydrotherapy, hydrotherapy referral, hypermobile, hypermobility, hypermobility diagnosis, joint pain, lockdown, lockdown 2020, meltdown, misophobia, pain, pandemic, pandemic 2020, panic attack, social bubble, social bubbles, social distancing, swimming
Posted on August 8, 2020
Trigger warning: This post contains details of an emotional breakdown and mentions of self harm.
So results day is coming up. The timeframe is much as it ever was: school grades will be released as planned: A Level results will be released on the 13th August and GCSE results will be released on the 20th August. Degree results tend to depend on the specific university. Despite all of the upheaval over the last several months and the changes made to the expected academic year, many people still took exams of some kind, worked hard on projects or coursework, and pushed themselves to attain the highest marks they could so, regardless of the unusual circumstances, the anxiety around these days is no doubt mounting.
As I’m in the middle of my course, I’m not currently awaiting any grades. I completed my second module back in April and received my marks not long after. But every August (and to an extent, January, when some modules are assessed), I think of all those anxiously anticipating those numbers or letters that they’ve been working towards for months, that their lives have revolved around for so long (not a healthy mindset, mind you, but one that society has entrenched in us and one that I’d like to talk about further at a later date). I think of those young people and hope that, whatever grades they have received, they are coping in a positive and healthy way.
What with my GCSEs, some in Year 9 and some in Year 11, my AS Levels, my A Levels, all the results during my degree, and now my Masters, I’ve had many, many a results day. And the majority of them have been absolutely fine, if not better than fine. Some of them have been downright amazing. But I do have one very negative experience that I think is important to share because chance are, at some point or another, we will all have a bad results day that comes as a shock. So I want to tell this story and then share some advice for dealing with a similar situation…
It was a chilly morning in March 2013 and I was anxiously awaiting the release of the Autumn module results with my friends. The only course I’d had an exam in was Physics and although I’d found it difficult, I finished it feeling like I’d done okay. Having been absent for a lot of secondary school due to ongoing illness, I’d missed out on a lot of foundation material so I’d found the course difficult but during the most recent parent-teacher evening, my teacher told us (me and my Mum) that she had absolute confidence in my abilities and that I was on track for a high grade. So when I opened my results and saw the little printed ‘u,’ I was initially confused. Surely it was a mistake. I’d always gotten good grades and my teacher had said such positive things. I waited restlessly for the mark to be confirmed and when it was, it felt simultaneously like everything went still and like everything was crashing down around me. I made my escape and headed for the more secluded of the two toilet blocks – I felt like every emotion I was feeling was visible on my face and I had no idea how to talk about it or how to pretend that I was fine. I needed to be alone.
I was crying before I even made it into the toilet stall and I sat on the lid, sobbing so hard that my chest hurt. I was gasping for air but it was like my lungs had pinprick holes in them, the air rushing straight out again. Even to this day, I’m not sure I can explain exactly what I was feeling. It’s not especially subtle and sounds very dramatic but it felt like the world was ending. I felt like a failure and I felt like the only thing people would see when they looked at me was a failure. All I was was this ‘u.’ All I was was ‘unsatisfactory.’ I couldn’t move past that thought. Everything else disappeared.
I don’t know how long I sat in that cubicle, crying and self harming, before my friends tracked me down. I wanted to stay there and hide forever but somehow, I dragged myself up and walked out to face them. I still remember the shock on their faces; I still remember looking at myself in the mirror, my face a mess of thick, mascara stained tear tracks and my arms covered in scratches. I looked as bad as I felt.
One of my best friends – someone I still consider a good friend despite the fact that we don’t see each other as often as we used to – took control of the situation, taking me off campus to a coffee shop where she gently coaxed the story out of me over hot chocolate. We both had to go back for classes but she arranged for us to talk to a mutually beloved and admired teacher at the end of the day. I wasn’t convinced but I was operating on autopilot, drained of the will to protest. So after my lesson (a lesson in which I didn’t say a word), we went to see this teacher and in her typical fashion, kind but direct, she told me about some of her experiences and talked me through my options. Then I went home and didn’t return for over a week.
It’s worth noting that my mental health had been deteriorating exponentially over the previous year, so this happened at a time when I was completely unequipped to handle it and it was a catalyst for a lot of big decisions. I dropped out of the physics course, partly because I wasn’t mentally healthy enough to manage the number of courses I was taking and partly because I was so distressed by the experience that I felt completely incapable of going back into that classroom and continuing with the course. Just thinking about sitting in that room triggered anxiety too extreme to function. And I can admit now that there was some shame involved too: I couldn’t bear the thought of my teacher and my class looking at me and seeing a failure. So I dropped Physics, completed the rest of my courses, and started seeking professional help for what were now obvious mental health problems.
To this day, I still struggle to open exam results. I work extremely hard and then, when the results are released, I’m very careful to open them at a time when I feel emotionally equipped to handle whatever they’ll say and when I have the time to process the emotions that I’ll potentially experience. I’ve talked about this a lot with my therapist, in general terms, but then we talk about it every time new results loom. Not long ago, she referred to the experience as ‘a trauma’ and the relief of having it validated for the distress it caused and continues to cause was so overwhelming that I swear my heart stuttered in my chest. After having so many of my experiences (and the ongoing problems they caused) invalidated, it was a really emotional moment. That day had a massive effect on my mental health and my relationship with education and still triggers debilitating anxiety.
Not all results days are like this. In fact, most of them aren’t and I hope that you – you, reading this – never have to go through an experience like this one, but just in case you do, here are some of the things that I’ve learned about coping with difficult results…
IN THE MOMENT
ONCE YOUR EMOTIONS HAVE SETTLED
Despite the trauma of that day and the vivid images that come to mind whenever I recall it, there are three things that I actively choose to focus on:
This post turned out to be a lot longer than I’d intended but I hope it has been somewhat helpful. I hope you remember that whether your results are good or bad, whatever you feel is valid. You have spent years working towards this moment and it’s natural and totally okay to have strong feelings about them. It would be odd if you didn’t. You’ve worked hard for this. So feel what you feel and do what you need to do to make sense of this big, messy experience that you’ve gone through. It will be okay – maybe not in the way you expect but it will be okay. I can promise you that.
Category: covid-19 pandemic, emotions, event, meltdowns, mental health, self harm, therapy, tips, treatment, university Tagged: a levels, advice, anxiety, as levels, asd, autism, autism spectrum disorder, autistic meltdown, coping skills, coronavirus, covid-19, exams, fail, failing, failure, feedback, friend, friends, future, gcses, grades, kindness, meltdown, mental illness, pandemic, panic attack, processing emotions, resit, resits, results, results day, safe place, school, secondary school, self injury, sixth form, sixth form college, talking, teacher, trauma, traumatised, trigger, trigger warning, tutor, tutoring, tw, undiagnosed autism, validation
Posted on July 18, 2020
On Monday, for the first time in over a hundred days, I left my house.
I was already self isolating when the UK lockdown went into effect. My university classes had moved online, I have friends and family that I could put at risk if I caught the virus, and it generally seemed like the safest, most socially responsible thing to do. Then the lockdown was officially put in place and it was me and my Mum in the house together. Struggling with Chronic Fatigue Syndrome, I don’t go out a whole lot because I physically can’t manage it but I had previously had university classes, seeing friends and family, and swimming at the gym (the only exercise that doesn’t cause me physical pain – probably because it’s non weight-bearing), all of which were suddenly gone. My Mum went out only to food shop and pick up medication prescriptions as necessary.
I’ve only been out once since then and that was to rescue my kitten who got stuck up a tree in a neighbour’s garden – we think she’d been up there for more than twelve hours. And when we did go to get her, all involved socially distanced and wore masks. It was stressful in the face of the virus but my kitten would not come down by herself and we were all getting really worried about her.
Ever since then, I’ve stayed in the house. My mental health has been a monumental struggle during this time, especially my anxiety – to the point that something as simple as laughing from outside or looking through the window at the street can cause severe anxiety and autistic meltdowns. And the longer this goes on, the worse it’s getting. I’m in contact with my psychiatrist, taking my medication, and having online sessions with my therapist but I don’t feel like it’s making much difference to my anxiety.
The easing of lockdown only increased my anxiety. With the scientists and Public Health England still warning of the dangers of Covid, it seemed (and still seems) incredibly irresponsible of the government to be making such changes. When it was announced that hairdressers would be opening on the 4th July, my anxiety sky-rocketed. Ever since the pandemic began moving into Europe, my Trichotillomania has escalated dramatically. It’s been a problem for years but with the recent extreme levels of stress, I’m now pulling my hair out more than I ever have. It’s not only causing pain in my scalp and damage to my hair, it’s also causing terrible pain in the fingers, hand, arm, and shoulder on the side I pull from, as well as tingling and numbness that often doesn’t pass for most of the day. So while I did, of course, want a hair cut (as I think everyone did), I was also desperate for advice and help with this problem. Plus, I go to an independent hairdresser and wanted to support them.
But despite all of that, I just as desperately didn’t want to go. Even with the all the strict safety measures they’d informed their clients of, I still felt overwhelmingly unsafe going out, especially into town. To make it feel more possible, we spoke to them and they arranged my appointment to be as stress free as they could possibly make it: we cancelled the colour to reduce my time there (it felt unnecessary as it was something I could do at home – I’d booked it way back when when it had looked like it would be (or feel) safer, they scheduled my appointment first thing on a Monday morning so the environment would be as clean and safe as possible, and they were happy to have my Mum come with me in case my anxiety got too bad. When we made those arrangements, it felt as good as I thought it was ever going to and we moved on, the appointment still a few weeks away.
But as it got closer, my anxiety grew and grew until I was having panic attacks over it. I didn’t want to go. I really, really didn’t want to go. It felt so unsafe to be going out, even with a mask, gloves, hand sanitiser, and safety measures in place. I didn’t want to go. The anxiety was unbearable and I had multiple awful panic attacks.
In the end, my anxiety just wiped me of all my energy and on the morning of the appointment, I just didn’t know what to do. I had nothing left. So Mum took over, got me up, and took me to the appointment. Even being outside felt terrifying: I felt so unsafe and exposed and vulnerable. We got there and the hairdressers was almost empty, as planned, and my hairdresser was as lovely as always. I’ve been camouflaging my Autism and my anxiety for so long – I’ve spent my life building a mask to help me manage in difficult situations, something that I want to write about more in the future – that most people see the ‘usual’ me but in reality, I was so anxious that I felt like I couldn’t breathe properly (and that had nothing to do with the facemask). I almost destroyed the fidget toy I’d brought with me and the whole experience was just exhausting. It felt like it only added to the trauma of the pandemic and lockdown.
(I do want to make it absolutely clear that that has nothing to do with them as people or a business. It was all about going out and feeling so unsafe outside my house.)
My hairdresser is awesome and so lovely and we had a good conversation about the condition of my hair and the textures that trigger my pulling. We talked about what might improve the condition of my hair and therefore lessen the textures that trigger me, which products might be helpful. So we’ll see how that goes. And simply cutting off the dry ends of my hair will hopefully help with the pulling too.
We were there less than an hour but I was completely exhausted. I was barely functional all day and ended up falling asleep on the sofa at about 10pm, hours earlier than I usually get to sleep at the moment. And it’s taken days to regain enough energy to concentrate and actually do things again. Even now I’m not sure whether I made the right choice or the safest choice but it’s done and I can’t go back and change it. Several people have said to me that going out would make going out again easier but if anything, it’s made it feel even scarier so, for the moment at least, I’m not going anywhere.
The next challenge, I guess, is when gyms reopen. As swimming is the only non-painful exercise I can do, my exercise has been severely limited during lockdown and on a personal level, I’m desperate to get back to it. I love it, I miss it, and I miss how it makes me feel, physically and mentally. But I just can’t imagine how on earth it can be safe. So there’s a lot of investigating to do, a lot of thinking and weighing the pros and cons to do. I’ve never been so jealous of people having their own private pools.
Category: covid-19 pandemic, emotions, mental health, trichotillomania Tagged: actuallyautistic, anti anxiety medication, anxiety, anxiety disorder, asd, autism, autism spectrum disorder, autistic, autistic meltdown, autistic meltdowns, cat, cfs, chronic fatigue, chronic fatigue syndrome, coronavirus, covid-19, easing lockdown, easing of lockdown, energy, exercise, fatigue, fear, gym, hair, hair pulling, haircut, hairdressers, independent business, kitten, lockdown, mask, masks, me, medication, meltdown, meltdowns, mental illness, pain, pandemic, panic attack, panic attacks, phases of lockdown, psychiatrist, risk, salon, self isolating, shielding, social distancing, swimming, therapist, therapy, trich, trigger, trigger warning, triggers
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter (and currently studying for a Masters in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.
I’m currently releasing my first EP, Honest, track by track and all five songs are now available on all major music platforms. However, there’s still more content to come…