One Year of Self Isolating

As of today, I have been self isolating for a whole year. 365 days. In that time, I’ve probably left the house no more than twenty times: for one morning of work (that had to be done out while the rest I’ve been able to do from home), for medical appointments, for swimming/hydrotherapy. And a haircut (when my Trichotillomania was particularly bad) during a period when it was considered safe to have one. But other than that, as a vulnerable person, I’ve stayed home. I worked out the numbers and that means I’ve spent 95% of the last year in my house. I look at that number and it kind of blows my mind. I’ve always been a homebody but this is so not the same thing.

So, to acknowledge the occasion, I thought I’d make a post about it. I thought about doing a list of good things and bad things, but given that the year has been dominated by the pandemic, that just felt wrong. Like, in general, it feels like the bad things carry so much more weight; a list like that just didn’t feel like an appropriate way to look at the last year. So, instead I thought I’d make a list of some of the things I’ve learned this year. There have been so many new experiences, new approaches to everyday tasks, new thoughts, new emotions, and so on. So I thought that might be a better way of looking at things. I doubt I’ll remember everything but I’ll give it a go.


  • ADJUSTMENT TAKES TIME – Going from normal life, the same lives we’d been living for considerable periods of time that rarely changed dramatically, to suddenly spending all of our time inside, missing our friends and family, and dealing with all of the fears and unknowns around COVID-19 was a big deal. A really big deal. And as someone who really struggles with change and uncertainty, this was a nightmare for me. I was barely functional for the first few weeks, if not months, because I was so overwhelmed. Eventually I managed to do the bare minimum but I continued to really struggle with anxiety. And things that had once been normal suddenly felt hard: I couldn’t concentrate enough to read anything; my songwriting felt blocked by my fear around the pandemic; cowriting sessions had to take place over Zoom, which felt awkward and made being creative more difficult; doing therapy via Zoom felt weird and the conversations felt limited and stuck because COVID was obviously the biggest thing going on but I really didn’t want to talk about it because it felt so upsetting. All of these things have gotten better over time (the reading is still a struggle though). At the time, the stagnation was unbearable but slowly I adjusted to each new version of normal and each time, I adjusted more quickly and with less difficulty. It’s all had a cumulative impact on my mental health and it’s gonna take a lot of work to get back to where I was pre-pandemic but I’m coping better than I was earlier on in the pandemic.
  • I HATE HAND SANITISER – I really hate it. I will 100% use it without complaint because I know how important it is in the effort to keep us all safe but oh my god, it feels (and smells) disgusting. As someone so sensitive to sensory stuff, I have really struggled with it but if it’s helpful, if it’s the right thing to do, I will willingly put up with it. I get the impression that it’s going to be a part of our lives for the foreseeable future so I’m going to make it a priority to find one that I don’t hate, just to make the experience less gross.
  • I NEED STRUCTURE BUT I CAN’T DEAL WITH EXACTLY THE SAME THING EVERY DAY – Knowing what is going to happen in my day is a really important part of managing my ASD and my mental health; having structure and certainty helps me to avoid anxiety and be more productive. So planning and a certain amount of routine are massively helpful but having such a strict routine that I do exactly the same thing at the same time everyday isn’t helpful. It just makes me feel trapped and anxious and suffocated.
  • PRE-PANDEMIC, I WAS SO LUCKY TO SEE MY FRIENDS AND FAMILY AS MUCH AS I DID (AND I HOPE THAT THIS WILL CONTINUE ONCE AGAIN WHEN IT’S SAFE) – There’s not much to expand on here. I feel so lucky to be so close to my family, to have always seen them so often before the pandemic. Having to go without seeing so many of them (in person) for so long has been really, really hard. I also feel really lucky because I know that, as soon as it’s safe to do so, this will continue. I can’t wait.
  • I’VE LEARNED WHAT I REALLY NEED IN A FRIENDSHIP – This isn’t related to the pandemic directly (so many of us have been struggling socially so it would be unfair to judge someone on whether they’re a good or bad friend based on this period of time) but it’s something I’d been thinking about before the pandemic and I continued to reflect on it during the lockdowns. I thought about the friendships that have lasted and the friendships that haven’t and had a bit of a revelation about the few fundamental things I need to be getting out of a friendship in order for them to be positive and fulfilling and, in addition, what makes a friendship draining and detrimental. That’s where it turns from a friendship into something unhealthy. But I think I’ll expand on all of this in another post.
  • I’M REALLY LUCKY TO HAVE THE FRIENDS I DO – My friends have been my lifeline to reality over the last year, a year of feeling like I’m trapped in a box (a feeling I’m sure, many, many people can relate to). I haven’t been as good at staying in contact with some as with others but it’s because of them that I’m pretty sure that I haven’t completely fallen apart. I feel really lucky to have a handful of friends from each ‘era’ of my life so far (school, college, university, and now post grad) that I’ve stayed close to but I feel like we’ve become even closer this year, even though we haven’t been spending time actually together. I’m really grateful to have these incredible people in my life and I just hope they know how much they mean to me.
  • SWIMMING MAKES ME FEEL REALLY GOOD, IN MYSELF AND ABOUT MYSELF – Swimming is the only form of exercise that I can do without pain but due to the constantly varying pandemic restrictions around gyms and pools, I haven’t had many chances to swim. But the times I have managed to swim have felt fantastic. It makes me feel almost giddy with joy and it also makes me feel strong and in control of my body, all things that I rarely ever feel. I can’t wait to swim as much as possible (and is sensible) as soon as it’s safe.
  • IT CAN BE SO EMPOWERING TO BE AN INDEPENDENT ARTIST/MUSICIAN – That’s not to say that it’s not hard, or even impossible sometimes, that it’s not utterly terrifying. Because it is. A lot of the time. For me, at least. I can’t speak for anyone else. It is very scary to be the one ultimately in charge of your artistic career because every decision and every consequence comes back to you. And oh my god, it’s incredibly expensive. But putting all of that (and more) aside for a minute, it has felt very empowering over the last year to be that person in charge: no one knows what’s happening, no one knows what’s going to be happening in three months time, so you just have to go with your gut and hope it’s the right choice. If it isn’t, it isn’t and that’s disappointing but being a new, independent artist in a pandemic is hard and possibly the worst time to be starting out so I think we all, at the very least, deserve some credit for even trying. And then there are the choices that do work out and they really make you stop and think because that came down to you or you and the small team you work with and it actually worked. It was actually successful. And that’s pretty mind blowing, especially so in these completely unknown times.
  • ONLINE LEARNING IS HARD, BUT THERE HAVE BEEN SOME BENEFITS – I can’t talk about online learning without recognising that I’m in a very fortunate position compared to many other students: I was and still am living at home, my university and my course are relatively small, my course can be completed remotely (although, of course, I’d much rather be doing it in person) even if it is much more difficult, the available technology has made it possible to continue creating and creating collaboratively, I have a good mental health (and now physical health) support system and so on. I’m very lucky. It’s been painful and difficult at times but less so than it could’ve been, not that I would’ve said so during the painful and difficult times, of course. But I feel closer to my coursemates than I’d have thought possible, given the fact that we’re only ever together via a screen. But we’re all going through this big, unknown, scary, frustrating, upsetting experience together and I think that’s created a unique bond. I can’t say whether or not we’ll all still be in touch in, say, ten years time – I hope so – but if we aren’t, I know I’m going to look back and think, “Those were some of the people that got me through the terrifying experience of the COVID-19 pandemic and for that, they will always be special to me.”
  • ALL OF MY DIAGNOSES ARE CONNECTED – Again, this isn’t pandemic related but I don’t know if it would’ve happened (or, at least, happened now) if not for the pandemic. After years of researching, endless doctors appointments, SO MANY referrals, and talking to various different consultants, we finally struck gold and found a superhero in the form of a hypermobility specialist. She was able to make things happen, move various processes along, and just get people to listen to me. Since meeting her, I’ve had various tests and appointments and a couple of diagnoses that seem to have finally pulled all of my apparently unrelated problems together, which is both overwhelming and… good. I kind of haven’t processed beyond that. Again, I want to go into this in more detail in another post, when I’ve processed it more deeply and where I can go into much more detail. But it’s a big deal. A really big deal.
  • AS PART OF A SOCIETY, WE ARE PART OF SOMETHING SO MUCH BIGGER – I obviously knew this already but that knowledge has felt different since the pandemic began, when it became clear that we were going to have to act as a collective to reduce the effect of the virus and return to something that at least vaguely resembled normal. And in some ways, that’s been a very powerful and emotional experience with people stepping up and helping each other simply because they could and because it was the right thing to do it. Although, having said that, it’s also been hugely frustrating to watch people not do their part when so many people are making such sacrifices. But on the whole, it’s been an honour to be a part of a group doing all they can to end the pandemic. What I personally can do, of course, is not on the same level as the frontline and essential workers – my god, not even close – but if the most I can do is obsessively follow the safety instructions and stay at home unless absolutely necessary, then that’s what I’ll do and I will do it without hesitation. I have such incredible respect for these people who have helped so many, who have made such sacrifices, and who have gone through so much during the pandemic that I will do (or not do) whatever is asked of me to make their lives and their jobs even the slightest bit more manageable. I will never forget what they’ve done for us during this time, not for as long as I live.

As I said, I’m sure there are more things that I’ve learned during this time but I think that these are all of the big ones, the big, personal ones. I’m included in the group currently being vaccinated (although I’ve yet to hear anything) so maybe I will be heading out a little more often once that happens, if only to get some more exercise. But to be honest, given how this last year has affected my mental health, I don’t think I’m going to be exactly quick to adjust to the idea that things are somewhat safer (the government certainly seems to think so, what with their plan to come out of lockdown). As desperate as I am to see my friends and family again and get back to swimming again, I don’t think I’m going to feel safe again for a long time: as I said, I don’t cope well with change.

Mental Health Awareness Week 2020 – #KindnessMatters

This week is Mental Health Awareness Week. Originally, this year’s theme was going to be sleep but with the impact of the pandemic on the world’s mental health, the Mental Health Foundation changed the theme to kindness:

“We think it could be the most important week we’ve hosted, not least because our own research shows that protecting our mental health is going to be central to us coping with and recovering from the coronavirus pandemic – with the psychological and social impacts likely to outlast the physical symptoms of the virus.”

Their website offers some really powerful insight into the importance of kindness:

“We have chosen kindness because of its singular ability to unlock our shared humanity. Kindness strengthens relationships, develops community and deepens solidarity. It is a cornerstone of our individual and collective mental health. Wisdom from every culture across history recognises that kindness is something that all human beings need to experience and practise to be fully alive.”

We all know about Captain Tom Moore’s incredible fundraiser and Dolly Parton’s massive donation towards researching a cure, as well as other wealthy and/or famous people giving money to various charities that support all kinds of people struggling during this time. These are all amazing acts of kindness but the foundation are encouraging people to share acts of kindness they’ve experienced so I thought I’d list some of mine:

  • My street’s WhatsApp group – As many streets or communities do, my street has a WhatsApp group and the generosity displayed in it is really heartwarming. People are offering the use of various equipment, like ladders or gardening tools; people are offering to help those less able than themselves; people are giving things away for free, like packets of seeds, cooking ingredients, unwanted furniture, art that they’ve made, and so on. The sense of community has grown so much since the lockdown and that’s really nice to see.
  • My neighbour helping us to rescue my cat – When one of the kittens went missing, the WhatsApp group helped locate her (which has caused her to become somewhat of a local celebrity) and the owner of the garden with the tree she was stuck in was so lovely about letting us in to retrieve her (we were social distancing, of course). When I tried to get her and couldn’t, my amazing neighbour climbed all the way to the top of the ladder, got his shirt off while perched up there, and used it to drag her off the branch she was clinging too. He handed her straight over to me for a cuddle but asked for a quick cuddle with her himself to apologise for squishing her a bit while getting her down. He told my Mum later that he’s actually terrified of heights but didn’t even think about it while helping us. That actually made me cry. I’m so, so grateful to him – especially with a fear of heights – for getting Sooty down because even with us standing below her, she seemed absolutely paralysed and unable to get down.
  • The generosity of my neighbours – The family next door to us (the father was the guy who rescued Sooty) are just so lovely and have an allotment that they work super hard at. Whenever they bring vegetables back, they give us some and they often share cake or other gorgeous food that they’ve made. They’re honestly some of the most generous people I’ve ever met and I feel so lucky to have them as neighbours.
  • The trumpet player on my street – There’s a guy who lives in the street who has offered, via the WhatsApp group, to come and play ‘Happy Birthday’ on his trumpet for anyone who has a birthday while we’re in lockdown. It’s kind of bizarre but then the world is truly bizarre right now and it’s a lovely, special gesture for a birthday that could otherwise feel very un-special.
  • The handful of people helping my Granny – There are several people who have been helping my Mum’s Mum with her shopping and computer and series of electrical problems, as well as checking in with her (safely) to make sure she’s doing okay, and I’m so grateful. We speak frequently but we’re too far away to be helpful in the practical sense so I’m really thankful for the people making her life easier and safer.
  • The support of my module leader and tutor during the assessment period – This was a while back but still in the lockdown period so I think it counts. I found this assessment really stressful and difficult, whether that’s because I’m still not used to the Masters standard of essay writing or my mental health I don’t know, but my tutor, Dan – who is also the leader of this module – was so helpful. He helped me with sourcing material and gave me really useful feedback. The Masters course is the first time in education where, as an autistic person, I’ve felt truly, 100% supported in my learning, rather than being made to feel like a hindrance, a hitch in the otherwise smoothly running classes. This means so much to me, more than I can possibly articulate. While no autistic person should ever be made to feel this way, it still happens far too often so to have tutors be so accommodating (in such a non-judgemental way) has meant the world to me and made the course possible.
  • Kalie Shorr playing a song I’d requested during one of her livestreams – I said this multiple times but Kalie is one of my favourite musicians, Nashvillians, and people. I wouldn’t call us friends but we’ve met several times during my trips to the US and gotten on well (maybe one day we will be friends – that would be really nice). Since the lockdown began, she’s been playing a lot of livestreams, which has been really cool, and during one of those livestreams, she played a song that I’d requested. It’s an unreleased song, one that she posted a snippet of on her Instagram stories ages ago but I fell in love with it and had been desperate to hear more. So the fact that she actually played it meant a lot to me. And by some good fortune, that livestream took place when I was having a really hard week and it really lifted my spirits so I’m really grateful to Kalie for that.
  • My friend sending me a Sara Bareilles CD – I’m not sure now whether this was just before the lockdown or just after the lockdown started (anyone else having major issues with judging the passing of time?), but a friend of mine was passing on some CDs, knew how much I love Sara Bareilles, and sent me a copy of Little Voice. As I have the money, I’m slowly collecting my favourite albums on CD or even vinyl, so I really appreciated him gifting it to me.

Another one of the focuses of this week is to think about how to build a kinder future. I can’t explain it any better than they do so, again, I’m gonna post what they’ve said:

“We have a once in a generation opportunity not only during but also following this pandemic for a reset and re-think about what kind of society we want to emerge from this crisis.

Our own reports and others such as Sir Michael Marmot’s 10 years On report reveal how inequality is rising in our society and its harmful effects on our health. Life expectancy is falling for the poorest for the first time in 100 years. As child poverty rises, children and young people in the poorest parts of our country are two to three times  more likely to experience poor mental health than those in the richest. After the 2008 credit crunch it was the most vulnerable in our communities who experienced the severest consequences of austerity, with devastating effects on their mental and physical health. This not the hallmark of a kind society. We must not make the same mistakes after this pandemic. 

Applied kindness could have a transformative impact on our schools, places of work, communities and families. As the former Governor of the Bank of England, Mark Carney, has said, now is a time to put values above valuations. We must seize this time to shape a society that tips the balance in favour of good mental health, for all of us, but especially for those who are most vulnerable.”

I have to hope that the kindness I’ve been seeing, the general community focussed behaviour and mindset will only continue after the lockdown ends, even though our lives will be busier, with work and school and so on. We’ll go back to our normal lives but that normal doesn’t have to be the same as the old normal. Hopefully we can build a new normal, one that’s kinder, more connected, more neighbourly, and more flexible, because of this experience with the pandemic and the lockdown. How beautiful would it be if we could create something so good out of such a difficult, distressing time? It won’t, of course, bring back the people who’ve died but perhaps it could be a tribute to all those who have suffered during this time. Maybe it’s naïve but I have to have hope.

I couldn’t make this post without acknowledging the incredible courage and strength and… kindness isn’t a big enough word by far… of the all the NHS staff, care workers, key workers, teachers (fuck the Daily Mail), and all those working unimaginably hard to protect us, keep us safe and healthy and moving forward despite everything going on. We can’t thank them enough. We’ll probably never be able to thank them enough. Someday, somehow, I’ll figure out a way to say  a proper thank you, a way to give back and help people in their honour.

But coming back to Mental Health Awareness Week, the Mental Health Foundation are, as I said, encouraging people to share the acts of kindness they’ve experienced or witnessed, using the hashtags, #KindnessMatters and #MentalHealthAwarenessWeek on social media. You can find out more and access further resources through their website. And to quote them once more:

“No act of kindness is ever wasted.”

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