I Finally Left My House

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.

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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.

Reducing and Coming Off Pregabalin

Months and months ago, I had an appointment with my psychiatrist and we reviewed the medications I was taking and how I was faring mentally. There was a lot to discuss but we spent a significant amount of time talking about how affected my life is by the sleepiness I experience, as well as the high levels of anxiety I’d been experiencing despite taking the Pregabalin. The result of this conversation was the decision to reduce and eventually stop taking the Pregabalin as it didn’t seem to be helping.

The reduction ended up being pretty uneven, without any particular structure. That was mainly due to the decision to take my time and take less as I felt able to; I didn’t make any alterations during my assessment period at university, for example, as I figured I had enough to cope with. But there were also periods when I was so preoccupied that I simply forgot that I was in the process of reducing it and only lowered the dose when I remembered. Fortunately it wasn’t as traumatic a transition as some of them have been.


150mg —> 100mg

Dropping from 150mg to 100mg, I noticed fairly quickly that my levels of anxiety were going down. At the very least, I had fewer periods of the paralysing, suffocating anxiety that short-circuit my brain, killing my ability to do anything at all. I also started to have more periods of general okay-ness. I wouldn’t quite describe my mood as good, but it definitely moving in a more positive direction than it had for a long time.

I was experiencing specific anxiety around the spread of Covid-19 but I figured that was normal for most people, especially those who already suffer from higher levels of anxiety or anxiety disorders. My as-needed prescription for Diazepam was helpful when it came to managing that, as well as taking precautionary measures.


100mg —> 50mg

I immediately suffered from side effects after this change. I had almost migraine level headaches that I could only manage by lying in bed in my darkened room. They remained at that intensity for several days before fading to a dull throbbing that painkillers took care of for the most part. I also had trouble keeping food in my system; I don’t think I need to go into any further detail on that.

I didn’t feel any different once the side effects passed but after a while, my Mum commented that I seemed less sleepy. I wasn’t convinced but kept an open mind and eventually I did think that I wasn’t feeling quite as drowsy. Part of that was down to the fact that I was drinking less Red Bull than I had been. That seemed to prove that I was needing less caffeine to function and was therefore feeling less sleepy.


50mg —> 0g

Again, I felt the side effects straight away. I had the same headaches although fewer of them and my digestive system also struggled. But with this reduction, I was also nauseous on and off for days and constantly shaky. It was very unpleasant and still hasn’t faded completely, even though I’ve been Pregabalin free for a couple of weeks. But maybe that’s been underneath the Pregabalin all along. I don’t know.

Aside from the side effects, my ability to sleep well disappeared overnight. I can’t be sure that it’s connected but it did start happening around the same time so I think it’s important to include here. I either wasn’t sleeping or having vivid nightmares that left me feeling disturbed and unsettled throughout the next day. I’ve read that this has been a common complaint during the pandemic so I’m thinking that it’s more to do with that than the Pregabalin however, it did start just as I finally stopped taking said medication. It seems unlikely that there’s no link at all.


Now, a few weeks later, I think it’s safe to assume that I’m no longer being affected by the Pregabalin or any withdrawal symptoms. Having said that I am still pretty sleepy and drinking at least one can of Red Bull a day, usually two. I still feel pretty weak and shaky, especially if I have to stand up or exert myself for more than about fifteen minutes. I’m also still sleeping badly with nightmares almost every night. It’s pretty gruelling.

I’m continuing to review the medication situation with my psychiatrist – although it is more difficult while we can’t have face to face appointments – and there are multiple options to think about. I haven’t decided what to do yet. We’re also continuing to investigate physical causes for my fatigue, although that has been put on hold by the lockdown. The restrictions are loosening but I’m not sure what that means for this situation. So, for now, all I can do is research and hope to make the right decisions when the time comes.

10 Things That Are Helping My Mental Health in Lockdown

I think probably most of us can say that we are struggling mentally in lockdown. I certainly am. I seem to be swinging wildly between overwhelmed, depressed, and anxious with no warning as to when the ground I’m standing on is going to change. It’s exhausting and kind of makes me feel sick all of the time. So I’ve put together a short list of things that are, if not helping, then managing my mental health in this emotionally turbulent time.


  1. Talking about how I’m feeling – I’m in lockdown with my Mum and talking to her about my anxieties and how I’m struggling with my mental health has been helpful, even if it can, in the moment, be really hard and make the emotions feel more acute. But after all this time, my Mum is very skilled at helping me with my mental health so when I get into such a state that I can’t think properly, she’s very good at helping me through it.
  2. Keeping a diary – I always keep a diary but I’m finding it particularly useful at the moment. Emptying my brain and getting all of my thoughts down on paper lifts a little of the weight I feel like I’m carrying. It just makes me feel a little bit lighter, like I can breathe more easily, and that’s invaluable right now.
  3. My cats – Obviously my cats have no idea that we’re in the middle of a pandemic so they’re just continuing to do all of their cat things: playing together, chasing bugs in the garden, playing with their toys, and sleeping all snuggled up together. It’s a good distraction and a very mindful one. Everything they do is entirely in the moment and it’s hard not to smile when you look at them, something I’m finding hard at the moment.
  4. Favourite Films and TV Shows – While getting sucked into a new TV show is a great distraction, I find that I don’t always have the concentration to keep up with new characters in a new world with an unknown storyline so I’ve been watching a lot of my old favourites, especially ones from my childhood. They’re familiar and comforting and distracting, making everything feel just a little bit less scary.
  5. Video calls with friends and family – I hate not being able to see my family and friends in person, hate not being able to hug them and just hang out with them for no particular reason other than just being together, I’m very grateful for video calling. I’ve spent a lot of time talking and catching up with my favourite people and although I sometimes find it draining (I think, to an extent, the level of video call use just serves to be a reminder of how different everything is), I’m just really pleased to be able to see them at all. I miss hugging though. I really miss hugging.
  6. Reading Fanfiction – As I said with watching films and TV shows, I’m finding it really difficult to get into new books. I just don’t seem to have enough concentration to stick with new characters and settings and so on. But a technique I’ve used for a while when it comes to anxiety is reading Fanfiction. I love that you can get so many new stories but with familiar characters and overall themes and story arcs. If you’ve ever felt like a book, movie, or TV show didn’t do a good enough job with a story or that they left out something really important or you see the characters in a completely different scenario, then I highly suggest looking into Fanfiction.
  7. Playing an instrument – I’ve spent a lot of time at the piano over the last couple of weeks. It’s something I’d hoped to do during my empty semester but coincidentally, it’s been really good for my mental health. I love the sound of the piano (I find the lower octaves especially soothing) but I also find that playing takes up all of my brain. I often sit down to play a couple of songs and then realise that I’ve been there for over an hour. Learning new songs and figuring out new chords and progressions just pushes everything else out of my head. It’s a nice break from reality.
  8. Time away from social media – I’m definitely guilty of spending too much time on social media at the moment, terrified to miss out on important information (I absolutely do not trust the government to be giving us the full story, ever really but especially right now). But that’s leading to a lot of fear spirals so I’m trying my hardest to spend real time away from my phone and social media, checking it once a day at most. It’s complicated since part of my job involves the use of social media but with the disruption to the music industry at this time, I’m not too worried about that right now. My mental health has to be my priority.
  9. Decluttering – This is another thing I’d hoped to do during my empty semester and, depending on my mood, it’s not always possible but when I do feel up to it, I’m finding that going through my things and creating space in my room seems to create space in my life and my head too. I can’t do it for long periods because I start to experience decision fatigue and get really indecisive but creating order and having some control when I feel so out of control has been both satisfying and soothing.
  10. Preparing for my next university module – Something I was worried about before the pandemic was being prepared for this next module in my Masters degree, which involves a level of musical theory that I’m not sure I’m comfortable with at this point. So I’d wanted to do some work on that and my attempts at this have actually been good for my anxiety: focusing on a completely separate anxiety has been a good distraction and preparing for a future post-pandemic has been good for my mental health too. It helps me remember that this isn’t forever.

It’s also worth mentioning that I have an anti-anxiety medication that I take as needed, which is pretty much all the time right now. My psychiatrist is aware of this and supports it. This has been hugely helpful and has halted many a panic spiral for which I’m really grateful. Being constantly overwhelmed by anxiety is exhausting and only makes it harder to cope with everything going on.


As I said, I don’t know if these things are helping or just maintaining my mental state but honestly, I think the only thing that’s really going to help my mental health is life returning to somewhat normal: being able to continue our lives and do the things we love to do without a thick fear of being infected. I want to feel safe again. I want to hug people, go back to university, go back to the gym. Maybe I’ll write a post about all the things I want to do when it’s safe again.

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