Living in Lockdown

When I’m not spiralling into an anxiety-induced meltdown over the pandemic, the resulting quarantine, and (particularly) the thought of a loved one getting sick, I can look at living in lockdown in a somewhat detached, practical sense (something that has taken over a month to be able to do). Intellectually speaking, we’re living in unprecedented times, experiencing something that our parents are experiencing with us for the first time – something that very rarely occurs. There are very few people alive who have witnessed the last pandemic of this scale: the Spanish Influenza in 1918. So this is a big deal, one that will be written about in history books and studied in the future – from political, sociological, and psychological points of view to name just a few. I’ve been thinking about that a lot recently and I can’t help thinking how often history is told from the point of view of the powerful and how terribly, appallingly wrong that is, especially given the number of mistakes being made by the people in power during this period (I’m speaking from the UK but I think we’re all aware of the mistakes being made by other governments, especially that of the US). So, if we want that to change, we have to write it ourselves, write our own experiences of living in lockdown, both for the history books but also for our own sake, so that we don’t forget what this experience has been like and how our lives have been changed by it. And as true as it is that we’re all in the same position – all in lockdown with limited access to our families and friends, the world outside, and our ‘normal lives’ – each of us will be experiencing this differently so I think the more experiences written about the better. So here I am, writing about mine, both for the reasons I’ve already listed but also to keep from drowning in it all, in the anxiety and the fear and the attempt to keep going as if this isn’t a traumatic experience.

I was aware of the Coronavirus before it even moved out of China but it felt like such a horror movie scenario and caused me such anxiety that I worked really hard not to think about it too much. It seemed unlikely that it would get all the way to the UK so I focussed on the anxieties in front of me and got on with my life. Besides, surely the government would be prepared should it reach us, given how much warning they had. I didn’t vote for this government nor do I trust them but I assumed that their egocentric motivations would have them preparing the country as best they could, for themselves if not for their people.

But then the virus started to move from country to country and more and more people in the UK began to take the idea that it might reach us seriously. I battled with my anxiety around it, trying to act responsibly without thinking so hard about it that it sent me into anxiety induced meltdowns. To an extent, I felt fairly unafraid of getting the virus as a young, physically healthy person but having said that, I was very aware that I was in regular contact with immunocompromised people and I was terrified of getting it and passing it on to them. So I was careful to wash my hands, use hand sanitiser, and avoid busy areas and travel times where possible. My anxiety had already been high before the virus made the news so it was a daily battle, as it often is.

Then everything seemed to happen at once. One day I was making plans with a friend for later in the week and the next she was on a plane back to her home country because of the travel ban. I didn’t even get to say a proper goodbye (that’s my little bit of self-pity done because I know, without a doubt, that she made the right choice and I absolutely support her decision). Before that week of classes began, our course came together (electronically) and decided that we didn’t feel it was safe for us or others if we were travelling to and from uni, etc, so suddenly my weekly routine was gone, my education disrupted, and my friends were all going home, again without any of us actually getting to say goodbye to each other. I know we can all talk via social media and video calls and that this isn’t forever but depending how long this goes on, we may never come together as a course again and that is an idea I find really difficult to get my head around emotionally.

I think it was the next week that we went into official lockdown. My university pulled out all the stops to support us and within days, our classes had been moved online but prerecorded lectures and a forum aren’t the easiest ways to have discussions and a sudden lack of access to the library and facilities wasn’t an easy adjustment. I found the online classes difficult. Don’t get me wrong – I really appreciate how hard they worked to keep our education up to date and as normal as possible – but it’s not the way I learn best. It’s just a personal thing. It also made working on the assessment essay much more challenging. Fortunately, I had a tutor who was incredibly supportive and with his help (and my Mum’s), I managed to get it in with good time, despite the added stress and the impact that had.

The essay, despite the anxiety it caused me, was actually a good distraction. As soon as it was done and submitted, I really started to feel the effects of being in lockdown. After all, up until then, I was pretty much doing what I would’ve been doing anyway: spending all my time on my assignment. But with that done, it all started to sink in.

The most obvious struggle is that I miss and worry about my family. I have four parents, only one of which I’m living with, and the others are all on their own; my brother is living by himself in London; my Mum’s Mum is also living by herself, a significant distance from any of us, even if we were allowed to visit each other (I’m thinking more in the case of an emergency where we would obviously keep our distance from each other and be very careful); and I have multiple family members categorised as vulnerable. So I have a lot of people to worry about and worry about them I do. The constant anxiety is exhausting. And as grateful as I am for video calls, it’s just not the same. I miss BEING with them. I desperately miss HUGGING them. I try not to dwell on it – or stress about how much longer we’ll be separated – because that is only more damaging to my mental health but it’s hard. It’s really hard.

On a similar note, I also really miss my friends. We have video calls, regular calls, texting, social media, movie dates on platforms like Netflix Party, and so on but again, it’s not the same. It’s not the same as hanging out with them, or hugging them, or going on coffee dates, or having writing sessions. As I’ve already said, I’m trying not to think about how long it could be before I see them again. We’ll manage, thanks to the technology we have,  but it will be really wonderful to see them again.

The other thing that I’m really struggling with right now is my mental health.  For those of you who know me or have followed this blog for a while, you’ll know that, amongst other things, I struggle daily with anxiety and depression. These are the particular problems that have only gotten worse since the appearance of Covid-19 and the lockdown.

  • Anxiety is my constant companion, although fortunately I have my ’emergency’ medication (to be taken as needed) for when it gets really bad, like I-can’t-breathe bad. My anxiety rises to that level at some point most days and the medication has kept it about as manageable as I think I’m going to get in the current circumstances. But my anxiety isn’t constantly that overwhelming (at least not anymore) and I’m wary of going through the medication too fast so most of the time, I’m just left with this relentless pulsing under my skin that leaves me restless and unable to think as clearly as usual.
  • My depression has been really bad too. Some days are a complete write off from the beginning, where all I can do is stare at the TV. Most of the time though, my mood is better but more precarious. I feel like I’m walking a tightrope: one little knock and I’m going to plunge straight into the darkness. It feels like I have to constantly watch my step, be hyper aware of any possible threat to my mental health, otherwise I’ll fall and who knows how long it would take to build myself back up again, given the uncertain, scary times we’re living in. Maintaining my mental health in this period is like trying to build a house of cards of shifting sands. It’s practically impossible.
  • Since the lockdown started, I’ve had serious difficulty concentrating. On anything. Getting my university assignment done took more force of will than I knew I had and while I knew that I’d need some recovery time after that and after finishing an intense semester, weeks later my ability to focus hasn’t returned. I’ve had phases where I’ve struggled to focus (likely caused by my fluctuating mental health and trying different medications) but it’s never been this bad. I can’t read a book, I can’t watch anything, I can’t do anything without my concentration drifting. Everything takes ten times longer to finish and ten times as much energy, if not more.
  • Most distressingly for me is that my creative brain is completely dead. Out of power. It just feels empty and I have no ideas. I’ve suffered extended periods of writer’s block before and usually experience it to a degree along with the exhaustion of finishing a difficult semester and stressful assessment period but it’s scary to feel that it’s still not working, even after several weeks have passed. I’ve tried all my strategies for writing and all my strategies for writer’s block but nothing is working. It feels like my brain is broken and that’s really, really upsetting.

I’ve still been having therapy, but via Zoom instead of in person. In theory, it shouldn’t be that different but somehow it is. I’d never really considered how important it is to have a space to work through all the hard stuff and then be able to walk away from it, which you just can’t do when you’re having therapy in your living room. Plus, Zoom calls are exhausting – here’s a good article about that – which only adds to how exhausting therapy can be. Then, when it comes to the content of a session, it all feels a bit frozen: it’s hard to tackle difficult emotions when we’re in the middle of different difficult emotions. And when I’m just about coping, feeling so fragile, I don’t want to trigger something and make life even more emotionally difficult for myself than it is already. So the whole thing is really tricky and confusing. Having sessions is definitely better than not having them but it’s not straightforward. It’s not as easy as I thought it would be when we made the plan just before lockdown.

And just to add to that, I’ve been struggling with sleepiness as a side effect of my medication for months but that’s gotten a lot worse since self isolating (perhaps from the increased anxiety – I don’t know). I’m exhausted by the smallest things and I seem to need so much more sleep. And that hasn’t been helped by a sudden, intense bout of hay fever, which has bestowed upon me the additional symptoms of an itchy, blocked nose and sore, itchy eyes. It’s been so bad that even having the windows open makes it dramatically worse so going outside definitely hasn’t been an option (I can’t take antihistamines because of my other medication). So I can’t even go in the garden, making me feel all the more trapped. Inhaling steam helps but only for short periods of time. The recent rain has been a blessing, giving me several days of relief. I’m cautiously hopeful that it’s started to settle – I’ve managed a couple of trips into the garden without incident – but I don’t want to speak too soon.

And lastly, for now at least, I’m really struggling with how uncertain everything is, uncertainty having always been something that causes me anxiety. We don’t know when the lockdown will end, we don’t know when we’ll be safe again, we don’t know when we’re going to see our friends and family again. I don’t know what’s going to happen in terms of my university course. And so on and so on and so on. So on top of the ongoing fear, there’s nothing solid to hold onto. Many of my summer plans have become impossible or at least difficult, while some have been cancelled outright, which has obviously been very upsetting and left me without anything to look forward to or anchor me. I feel very lost. I’m sure that’s true for a lot of people at the moment. I try to focus on each day as it comes but it’s hard. We’re all so used to looking and planning ahead.

One more thing… I found this on Twitter the other day and wanted to share it:

I found it really helpful to have various explanations as to why I’m struggling, to know that my brain isn’t actually broken. Of course, knowing this stuff doesn’t actually fix the problems but being able to take a breath and reassure myself that there is a reason and that it won’t last forever has been helpful.

I hope you’re all safe and coping the best you can. And if you’re in the UK and they do loosen the lockdown this coming week, please continue to be careful. I hate being in lockdown but I’m absolutely terrified of what will happen if the government relax the rules, of how many more people will get sick and die. I’m scared out of my mind that someone I love will catch it. I can only speak for myself but I’m sure I’m not the only one with such fears. So please, please be careful. For all of us.

19 for 2019 Reviewed

In January, I was inspired to try the 19 for 2019 challenge, setting myself nineteen goals to achieve by the end of the year. They didn’t have to be massive goals; they could be one off things to simply try. I was inspired so I came up with nineteen things and gave it a go. Unfortunately, I wasn’t aware of what a hell of a year I was about to experience.

  1. Stop pulling my hair out – Complicated. I’ve gone long stretches without pulling my hair out but then the stress induced habit has usually been replaced by another one. Right now I’m going through an incredibly stressful time and have recently started pulling again. Maybe next year’s the year.
  2. Read ten books – I read a handful of books early in the year but I didn’t really start to enjoy reading again until I read This Is Going To Hurt by Adam Kay. I devoured that: he has a beautifully personal writing style. Not long after that, I started my Masters Degree and I had an overly ambitious reading list so I read a lot. Plus, I had a phase of reading books from my childhood when I went through my bookshelf. So I definitely read more than ten books.
  3. Get a tattoo – I still haven’t managed to do this. I still like the thought of getting one and have multiple ideas but I really don’t like the way they blur over time. I don’t think I could bear to have a blurred tattoo on my body so I still haven’t gotten one.
  4. Continue swimming (or let it evolve) – There were periods of the year where I did manage this but sometimes the medication I was on meant I physically didn’t have the energy. And then when the kittens were born, I loved watching them in the early mornings, which was when I swam (before the gym got busy and stressful). Add in doing the Masters and what a drain on my energy that was, I haven’t been swimming half as much as I’d life. It’s definitely something I want to get back into in 2020.
  5. Write more songs – Given all the changes of medication (something that always seems to affect my songwriting) during the first six months or so of the year, I wasn’t able to write. I tried. I tried really hard and managed a few with the help of some wonderful cowriters. But now that I’m back on the Phenelzine, I am able to write again, alone and with others and I love it. For me, writing a song is the best feeling world; it’s feeling alive, it’s feeling connected to myself, to my soul, to the universe. It’s feeling real. So I’m writing again, as much as I’m able. And as I’ve started my MA, I’m writing for that too. I’m very aware of how much I’m learning and how much my songwriting is developing.
  6. Get my photo albums up to date – I did. And then they got out of date again. It was something I’d hoped to do over the Christmas break but I’ve literally been working on my assessments every single day. Fortunately my photos are well organised so when I have some time, it won’t be a terrifying task to attempt.
  7. Pursue the cause of my tiredness – I’ve tried. My god, I’ve tried. I’ve seen doctors and been to the Chronic Fatigue Clinic for a general session but that wasn’t at all helpful. I knew everything they told and have known for years and the other people there hadn’t been dealing with it for a fraction of the time I have been. So I didn’t feel very positive about that experience. I’m waiting for a follow up from them but I had no idea when that will be or how much it will help me.
  8. Improve my instrument skills – I barely did anything musical for a significant part of the year due to medication side effects and crushing depression so I’ve probably gone backwards in my instrumental skills. Having said that, I have been working on them since I started the Masters (particularly the piano so I didn’t have to carry a guitar up and down from London). So not a total loss. And hopefully this will continue as I continue with the Masters.
  9. Watch a meteor shower – In January actually, I did manage to catch a meteor shower and it was beautiful. I don’t think I’ll ever get over how magical meteors are; they’re just takes me breath away. And there was one huge one that streaked across the sky, like a knife cutting through the roof of a tent and letting in light. It was one of the most amazing things I’ve ever seen.
  10. Write more poetry – I did write a little poetry, but that was only during NaPoWriMo. Either my mental health was going down the drain or I was too busy writing songs for poetry. Why is there never enough time? Sometimes I feel like the world is moving really fast around me while I move at an ordinary speed.
  11. Finishing decorating and organising my room – I started to and then I somewhat undecorated it with the creation of the music video for my single, ‘Bad Night.’ While it’s mostly been returned to rights, there’s still some damage (a fist sized crack in the plaster that I haven’t gotten around to repairing). It’s just one of those things that’s always on the list but slips down to more urgent things. Hopefully I’ll get there at some point.
  12. Find an alcoholic drink I like – I’m now back on a medication that means I can’t really drink. The odd drink is fine but yeah, I can’t really drink. Before that though, I tried a lot of different types of alcohol and just really hated all of them. I also discovered that I’m allergic to limes, which are in a ridiculous amount of alcoholic drinks, including one that I actually did like. The one drink that I do enjoy is a passionfruit mojito even though it does contain lime extracts. So far, drinking them – and I’m not drinking them very often – doesn’t cause a reaction.
  13. Find a tea or coffee I like – Nope, they all still taste awful to me. I find it frustrating because drinking coffee is such a ‘normal’ thing and I feel like, having been denied so much by my Autism, it’s unfair that I don’t even get to be normal in this tiny way.
  14. Get invisible braces – Success! I was fitted for invisible braces and have received the first half of the set. I did really well at wearing them for a while but during the second half of the year, I haven’t done so well. It just felt like too much when I was struggling with serious anxiety. I’m hopeful that, with what seems like a less stressful semester starting January, I’ll be better at wearing them.
  15. Go rock climbing – Nope. I would’ve loved to but again, all the medication and energy stuff made that impossible. Another dream for another year.
  16. Participate in FAWM – I tried really, really hard to take part in February Album Writing Month but as it was (obviously) at the beginning of the year when I was trying different medications and therefore really struggling with my writing, I didn’t get far. I made several solid attempts and wrote several parts of songs but I didn’t manage to write even one full song.
  17. Participate in NaPoWriMo – Again, I tried and did write some poetry but nothing I was terribly enthused by. And I wasn’t particularly consistent and didn’t do it everyday but I tried. I tried.
  18. Donate blood again – I would’ve loved to have donated blood again but a lot of the medications made me ineligible to donate, which sucks because it’s something that’s really important me. So this is off the cards for the moment but as soon as it’s possible again, I’ll be back.
  19. Join the bone marrow register – Another one I’ve failed at. There’s just been too much health stuff and I’ve just been too unwell to think about it. Plus there were long stretches where I simply forgot. I want to do it so it will stay on the list until I manage it.

So it’s a pretty mixed bag and considering the year I had, I’m surprised I managed any of them at all. I’ve struggled throughout the year, especially recently, with how little I’m achieving and the frustration and anger and guilt that comes with that, that comes with living with mental health problems and a developmental disability. I’m trying to focus on the fact that, where I could, I tried. I tried to do as many of these things as possible.

Overall, an interesting challenge but I think I’ll try something different for 2020. I haven’t found the right kind of goal system yet so I’m just gonna have to keep looking and keep trying.

Insert Joke About Being Iron Woman

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.


WEEK 1

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.

WEEK 2

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.

WEEK 3

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.

WEEK 4

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.

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