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 June 15, 2019
Several months ago, I had some blood tests done and they revealed that I was incredibly low in iron. Since I’ve had some pretty unpleasant experiences with supplements, my doctor recommended an infusion and set it up straight away at the local hospital. I was really impressed by the efficiency of it all: the speed at which the problem was identified and the treatment arranged. That was the last we saw of that.
The actual hospital visit for the infusion took six hours. All was going smoothly: they’d taken my blood just to double check the iron levels but then we saw no sign of the doctor for over an hour. When someone eventually appeared, they told us that somehow they’d managed to test for everything but iron and were having to run the tests again. It took so long that I fell asleep in the chair.
Hours later, they finally had the infusion in. It was cold and made me feel kind of sick. It was a bit like when you get a general anaesthetic, if you’ve ever had one of those. But it was okay. It only lasted about fifteen minutes and then I had to stay for half an hour to make sure there weren’t any negative interactions. But then it was all over and I could go home. I thought I’d keep notes on how I reacted in case it would be useful to anyone else.
I slept very late everyday (sometimes into the afternoon when I’m usually up around eight) and still struggled to get up. Despite all the sleep, I could still nap in the day and would start dozing off around ten. I had absolutely no energy. I tried to continue my routine of getting up early to swim but I could barely drag myself downstairs (or even out of bed); I couldn’t stand up long enough to shower and had to wash my hair in the bath, which I absolutely hate doing. I was very shaky and felt just generally unwell.
At the beginning of the week, I also reduced two of my medications, Clomipramine and Flupentixol, as I’d previously planned with my Psychiatrist. The infusion came about so quickly that the plans collided with no time to adjust. I also went down with a migraine during the week so it’s hard to tell what caused what and how each thing affects the others.
Slowly, I started to wake up at my normal time again but I was still very tired and sleepy. Doing anything was a struggle but by the end of the week, I started to feel a bit better and a bit more like myself pre-infusion. I also started to feel like myself pre-Flupentixol: I had my first shower standing up in weeks and I walked around London without feeling like I was going to faint. It felt a bit like a fog was lifting.
The week began with my first shower standing up and I was positively giddy about it. I had to lie down afterwards but it was amazing to be able to do something again that had been taken away. I was still physically exhausted but I no longer felt like I was going to faint if I stood up for too long.
Mentally and emotionally, I felt like I was declining. I felt depressed and restless; I didn’t know what to do with myself.
I did spend the second half of the week sick, feeling nauseous with a cold and sore throat. I don’t know whether that’s related to the infusion or the changing medications or whether it was a coincidence. Either way, I spent several days in bed feeling miserable.
At the beginning of the fourth week, I reduced the Clomipramine again. I wish all of these things could’ve happened separately from each other so the effects could be clearly identified by unfortunately, that just wasn’t in the cards this time. The reduction of the Clomipramine, an antidepressant, no doubt had a real impact on my mood. I felt overwhelmed by feelings of depression and hopelessness and I just didn’t know what to do with myself. I couldn’t settle or concentrate so it was hard to distract myself from these feelings. My anxiety also increased, which was an added struggle.
Energy wise, I felt back to my ‘normal’ levels of tiredness: I couldn’t – can’t – stand or walk for very long, big events and big emotions require several days of recovery, I need a lot of sleep. But I’m a lot better. I’m swimming again and going up to London has been easier. So on that front, there has been improvement.
Everything has been fairly consistent since then and eight weeks after the infusion, I went back for a blood test to see if the infusion worked. The results were certainly interesting: by my maths, my iron levels have gone up 4000%. So, for the moment at least, it seems to have worked. In the medical sense anyway – I’m not seeing as much of an improvement as I would’ve hoped, energy wise. I’d hoped that this might explain the ongoing trouble I have with fatigue but if this is up to normal levels and I’m still struggling as much as I am, then it’s not the answer, or not the whole answer.
It’s not the end of the road. In three months, I’ll be going back for another blood test, this time to find out whether my body is holding onto and processing the iron properly. So that may yield more answers, more information. From there, I’m not sure what happens but it’s not the only route we’re pursuing. There’s got to be an answer and I’m not giving up yet.
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.