Posted on September 5, 2020
Back at the beginning of the year, I started writing about my diagnosis of Chronic Fatigue Syndrome (CFS, also known as Myalgic Encephalomyelitis or ME), after struggling with fatigue and other symptoms for over a decade, and the various ways I’ve been attempting to manage it or even treat it. That is still a blog post that I want to write and post but with the pandemic and lockdown, that treatment process has stalled, which has obviously left the post hanging. So I’m going to wait for that treatment to continue to a natural stopping point (it’s likely to end up a series, given how little is known about ME/CFS and how difficult it is to treat) before I round off that post.
BUT something has happened fairly recently and I felt that, regardless of my own story and my own progress, it was too important not to post.
In June 2020, the Medical Research Council and National Institute for Health Research awarded £3.2m to a new ME/CFS study called DecodeME, the largest ever study into the condition. Work will begin, all being well, in September 2020 where DecodeME will look at samples from 20,000 people with ME/CFS, with the intention of discovering the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition. The hope is that this information will further the development of diagnostic tests and targeted treatments for the condition. You can still apply to be a volunteer here (although you will not be held to that application when the study officially begins) and there’s more information here, on Action For ME’s website.
This is huge news as there is so little knowledge around ME/CFS. The world over, people with the condition have been at best ignored and at worst left to die. My experience is extremely common: I was half-heartedly diagnosed and then abandoned by my doctor. It was never mentioned again and I was left to manage it with only the help of my family. I was reluctant to pursue the CFS diagnosis more aggressively because I’d been told that there was nothing anyone could do to help me. I wanted it to be something else. But eventually I was done with the waiting and the lack of engagement from the medical community. I told my doctor to put CFS on my file as the official diagnosis and have been following various routes of treatment ever since. As I said, I want to talk more about this but I think it’s best left to be its own post.
But this study gives me real hope and I’m so excited to be part of it, part of something that could change not just my life but the lives of so many people. It’s unacceptable that the medical community have abandoned such a large group of people and moments like this feel like new beginnings. I’m excited and inspired and determined. And if nothing comes from it, then I’ll move on. I’ll find something else to try. I’m not giving up. To simply accept that this is my life is not an option.
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 (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.