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: anxiety, autism, covid-19 pandemic, emotions, meltdowns, 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 health, mental illness, pain, pandemic, panic attack, panic attacks, phases of lockdown, psychiatrist, risk, salon, self isolating, shielding, social distancing, swimming, therapist, therapy, trich, trichotillomania, trigger, trigger warning, triggers
Posted on July 11, 2020
I’ve seen a lot of people posting post-lockdown bucket lists recently and they’ve been really fun to see. It’s nice to see people excited about things. And it’s a nice reminder that there will be an end to this situation, to the restrictions, to the fear. I started writing my own post-lockdown bucket list but halfway through, I stopped and really thought about it all. I’ve mentioned before that I think the British government has handled this crisis appallingly and that I don’t believe that they’re acting in the best interest of the people; with the experts warning about a second wave, it seems incredibly irresponsible and actively negligent to start lifting lockdown. Me and my family have discussed this a lot and have decided to follow the scientific advice, rather than the government’s advice. So I changed my approach to the post and renamed it my ‘when I feel safe again’ list.
So these are the things I want to do as soon as it feels safe enough to do them:
Ultimately, I’m looking forward to feeling safe again and the resulting relief for my mental health. My anxiety isn’t going to recede from its overwhelming levels until then and only then will I be able to function somewhat normally again. I hope.
Category: anxiety, covid-19 pandemic, mental health, music, trichotillomania, university Tagged: alcohol, anxiety, anxiety disorder, collaboration, concert, concerts, coronavirus, covid-19, cowriting, decorating, drinking, driving, exercise, family, friends, hair, hair dye, hug, hugs, karaoke, lockdown, long drives, masters, masters degree, mental health, mental illness, music, pandemic, performing, post lockdown, post lockdown bucket list, redecorating, singer, singersongwriter, songwriting, swimming, university, when i feel safe again list, writing
Posted on January 25, 2018
My first battle with hair pulling ended after about nine months when somehow, I managed to will myself to stop pulling. Finding my first bald patch, about the size of a 2p coin, had seriously freaked me out and so I’d been determined to stop. The first few days were absolute hell. It was like my fingers were magnetically attracted to my head and the longer I didn’t pull, the stronger it became. Have you ever held two magnets close enough that you can feel the pull between them? It was a bit like that but all through my body. I won’t lie, the thought of shutting my fingers in a door so that I physically wouldn’t be able to do it did occur to me more than once. I couldn’t concentrate on anything; my whole brain was focussed on not pulling out my hair. It becomes a habit and you do it without thinking about it so when you try to stop, you have to think about not doing it all the time, just in case you slip up. And then the need to do it just overwhelms everything.
I’m not sure that feeling exactly faded but I learned to compartmentalize: I managed to cram it into a box and think around it. That sounds impossible now. When I couldn’t do that, I tied my hair up in a ponytail and allowed myself to pull the hair out of that, the resistance from the elastic band fulfilling some of that need. But I wasn’t allowed to pull it out. It wasn’t perfect but it did keep me from relapsing. For a while, that is. I didn’t pull for over a year but then I started again. I’m not even sure why, if I’m honest. I think I was tired. I was tired of fighting it. The urge to pull hadn’t gone anywhere and suddenly I was back in that vicious cycle, pulling and pulling and pulling.
That was about eighteen months ago. I’ve tried all my old tricks: wearing a hat, playing with fidget toys, fiddling with my spinner ring. But so far nothing has really worked. The hat worked best but the anxiety of not being able to get to my hair almost sent me into a meltdown and at the moment, pulling out my hair is the lesser of those two evils. I guess it’s not surprising, considering the amount of anxiety I’ve been dealing with recently.
In the last couple of weeks, I tried (again, hence the 2.1) to stop. In some ways, I was lucky the first time round: when I was pulling, I tended to pull from a point that was hidden by my hair most of the time. I mean, it still sucked but at least I didn’t have to deal with anyone else’s reactions. But this time, I’m pulling from all over my head: my fringe, my parting, my hairline… Literally everywhere. I’m triggered by a change of texture in my hair, from smooth to almost crunchy (if you have any advice on ‘fixing’ this, please let me know!) and that’s not specific to one area. And that means it’s much more likely to be noticed. Maybe it’s vain but that’s my motivation for stopping and I figure any motivation is good motivation.
So last week I tried to redirect my pulling away from my parting and my fringe. I was ‘allowed’ to pull from other areas but not from those two. I thought I was doing okay until I realised that I was chewing the inside of my cheek, with the effort or the redirected urge I don’t know. I stopped as soon as I realised, although not before it had bled quite a bit. Again, I thought it was all okay until a day or so later when the inside of my cheek started to hurt. I figured it was just healing but within a few hours, the pain was blinding. I’m writing this out and thinking, “This is ridiculous. You’re exaggerating. It was just a little gash inside your cheek.” I’ve always been sensitive to pain and easily overwhelmed by it but I don’t think that matters. In all seriousness, it was so bad that it made me cry (which only made it worse because, obviously, you move your mouth when you cry). It was that strong. For three days, it was so bad that I wasn’t able to do anything. I was barely able to eat, or drink, or talk. I almost cancelled an event I was looking forward to because the thought of having to talk and smile all evening was unthinkable. I woke up on that morning feeling a little bit better so I did decide to go but it was still very painful.
A few days on and I’m mostly pain free. That was not something I’d expected when I made the decision to try this again and it was really upsetting. I’m not sure when or what I’ll try next but I’m sure I’ll find something.
Lesson learned: Be careful of where you redirect the urge and/or the effect that your attempt is having.
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 the first three songs are available on all major platforms.