Episode 6: A Year of Long Covid

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INFO:
As soon as we finished recording, I could already think of a million other things I wanted to say. But this is all I could give you for now. This episode of The White Pube podcast reflects on this year of Long Covid, of becoming housebound, of losing community and finding community, and making difficult decisions.

ZM - Hi, and welcome to The White Pube Podcast. I am Zarina Muhammad.

GDLP - My name’s Gabrielle de la Puente.

And we are two li’l critics just living our best lives, we run a website called The White Pube. You can find us on thewhitepube.com or .co.uk, @thewhitepube on Twitter and Instagram, and we just write about things. We write about art, games, books, TV sometimes…

Food.

Food, sometimes… anything and everything. The cultural bits that make up the space of our precarious mad lives in this wild wild west of the world that is 2022. Yeah, if you’ve not heard of us, maybe have a peek and see what you think. It would be nice to see you, I don’t know, maybe?

(laughs)

I feel like I’m flirting with someone. I feel like, nervous, sweaty.

We haven’t done an episode like this in so long. And this episode is going to be a little bit different from the weekly texts that we put out. We publish reviews of all those things Zarina has said about on Sundays. But we’re going to use today’s episode to chat about the fact that I’ve had Long Covid for ONE. YEAR. and just what the fuck that means, and how it feels, and the shit that I’ve learnt, and how much it has changed my life. I wanted to do this episode because there is so much that I want to say and share about Long Covid - I don’t feel any of it should be kept to myself or kept private, I keep wanting to say things about it but not in a tweet or an instagram caption. I think it needs to be a whole conversation, and every day I think about it. I think about it all day long and I want to find a way to collect all the thoughts and put them in one place, because whenever I have spoken about Long Covid on the internet, I get an email a few hours later from someone who is like ‘I have also got Long Covid, this is my experience, thank you so much for sharing…’. It feels like I need to continue to contribute towards that sense of community so that we can all get through it, or figure out a way to stay with it if we’re not going to get better. So essentially, today’s episode is Zarina interviews me about Long Covid so I can get it off my chest.

Love that. So I’ve got some questions for you. I’m Jeremy Paxman. First of all, Gabrielle, in the hot seat. Can you tell us, what is Long Covid? What actually is it?

So, Long Covid is a post-viral condition that people get after Covid. It might mean many different things to many different people because there are about 200 symptoms that have been identified, which is absolutely nuts, bonkers. I always think, oh my god, I’ve got so many of them, I’ve got a full bingo house. Then I look at the 200-long list and think, OK. Auuugghh. My symptoms are widespread pain, I have brain fog, which just a nightmare. I have breathlessness on activity and I have fatigue that just has kept me housebound and with fatigue, I think a good way to describe it is post-exertional malaise. That’s the official term, which means a really terrible reaction to activity. That activity might be physical or mental, it might be social. My other symptoms include a bizarre nocturnalism, I have had real trouble with sleep. I stopped setting alarms because I realised I was having a strange boost of energy at night after being really fatigued all day. I thought that by stopping setting alarms, I’ll have an experiment and see where my natural sleep cycle falls. It turns out that I only get tired at 8am and I wake up at 5pm naturally. So Long Covid for whatever reason has just turned the world upside down and put me in a different time zone. That is something that can happen as a part of post-viral illnesses as well. Viruses can trigger circadian sleep disorders, so that’s a part of my Long Covid experience. On top of that, really bad periods, like I’ve never had before. Really bad pre-menstrual stress, to the point of a day of the deepest depression before I come on. I’ve had hair loss and I’ve got this new inability to regulate my temperature - I have been so hot, all winter. So hot. Michael, my boyfriend, has been stuck in the house in an Oodie, pure comfort, pure warmth. And I’ve been there with like, spaghetti strap top on. I’m just so hot. And in the Summer, I could not cope with the heat to the point where I could not get out of bed because it was so hot outside. I do not know what’s going on with that but something inside me has just broken.

This sounds bad, but considering gas prices are going up…

True, thank you Covid.

That’s the only upside.

Have I got any other symptoms? What have I said to you?

Is it worth mentioning that like, the pain… you’ve got nerve damage.

Oh yeah, so, I’ve got widespread pain that feels like I’m just bruised all the way through. It’s fucking shit, it’s very constant, the most constant symptom, every day, almost sensitive to the touch. Really uncomfortable. It has made me quite irritable as well, naturally. But on top of that, I get a different type of pain layered over it in my legs. I notice that if I try to walk anywhere or if I stand in one place for too long, if I have a shower or wash the dishes, it just triggers this weird leg pain that feels like cramping, but also shooting pain. Also, continuing with the strange heat regulation, my legs get really hot. Sometimes you can feel it, that one leg is hotter than the other, to the touch. So I try not to stand up. I try my best to sit down. I hate chairs now, so I sit on the couch or in bed. Chairs are evil, they are too straight. I hate them, they do nothing for my widespread pain.

A.C.A.B.

A.C.A.B! All Chairs Are Bastards! I’ve never felt so much hate for an object. I can’t sit in chairs.

Bad design. That’s your bingo card, what are the other myriad symptoms that other people, you’ve heard other people have had?

Those are my symptoms. There was an amazingly thorough report published by The Lancet at some point in 2021 that listed 200 symptoms of Long Covid. I know people who have incredibly bad joint pain, people whose hands swell up and they can’t hold a pen. Other people have chronic vomiting which just, I really sympathise. Ear pain, tinnitus is really common, vision symptoms as well, which I’ve not had completely but I did have a few months where I was really sensitive to light and wearing a cap round the house so I couldn’t see the big light, didn’t have lamps in my field of vision, because it was really irritating me. Other people have heart palpitations and heart issues, really bad loss of appetite - which I have also had - nausea, it just goes on. Skin issues, every single part of the body is affected. It is crazy to me that while we can speak about Covid so much in the news every single day, Long Covid isn’t made as big a deal of because I think it’s fucking terrifying. It has completely transformed my life, and for the people who are idiots, anti-vaxxers… I want to tell them this as a horror story, I want it to be a deterrent. I want them to be scared of becoming like me, because then maybe they would go and get vaccinated.

I guess the way the news, the politicians, even sometimes healthcare people. The way they present it to the mainstream public is a binary between cold or flu, or you die. It’s mild, or you die. Get the vaccine or you die. But also… like, you’ll be alive, but your entire life will be recalibrated around an illness that people don’t really know too much about. Mysterious aches and pains and bizarre symptoms, bonkers stuff that seems unconnected to a respiratory virus. That whole host of other things, it’s not that binary between being OK, recovery, and death.

Yeah, it’s a horrible purgatory. The other symptom I think that adds to that horror story, not something I’ve experienced but I’ve seen really upsetting videos online of people with that condition where everything that they smell smells disgusting. Which sounds almost comical, but if you listen to the stories coming from people. They can’t hold their baby anymore because another person smells like something that is going to make them vomit. The experience of eating food makes them vomit. Things don’t taste right, because taste and smell are so connected. It’s really isolating people, it’s like everyday torture. It’s not something they can just switch off because it’s in them, it’s Long Covid. There’s no cure for it, there’s no promise that people are going to get better. They’ve just got to live with that, they’ve got to wait and see what happens. It’s crazy.

Just wait and see what happens… if that’s the only solution, it’s crazy. Just hold tight, clench…

When I got sick, I had a pretty bad active Covid time. Straight away I was like, I think this is going to be Long Covid. It was just so persistent and I had never felt so weak or so… I don’t know, it was new body-feelings. I was convinced it was Long Covid from the start. The only thing anyone would say was ‘you’ll be better soon, don’t worry, you’ll be fine soon’. It would upset me, and I couldn’t quite articulate why it upset me at first, because why would you get upset by someone wishing you well? But it felt like something I couldn’t live up to, like a quick way to write off what was happening in the present, a way to say - I’m not going to deal with your situation right now, you’re ill but you’ll be better soon, don’t even think about it, don’t worry. But I was worried. I was feeling really bad and I was already having to adapt my lifestyle, quit jobs, quit responsibilities, quit standing up in the shower, only having baths… all of these little changes to get through a day. It makes me laugh. Am I still sick out of spite?

Haha! Get well soon… no! I won’t!

Yeah, fuck you! I’m going to be sick for years!

Oh my god. It’s a good joke! That’s a good segue in the next question, about… it is a shitshow. Long Covid is bad vibes. But outside the space of those symptoms, please describe the other bad vibes.

Oh, so many bad vibes. Bad vibes from the pain itself, and how can you concentrate on anything in your life? How does anything else matter when your body just hurts? How do you make yourself care about answering an email or brushing your hair, having a wash, changing clothes, feeding yourself, checking in with a friend… it’s so hard to think about other people. It’s this default selfish thing, I don’t even think it’s a bad thing, it’s just like the aeroplane analogy. You need to wear your own mask before you put the mask on the kid when the plane’s falling out of the sky… I need to put my own mask on, you can all fuck off. I can’t deal. The flipside of that is that it has made anything I do decide to do very deliberate and very meaningful. If I have a phone call with a friend, it matters, because I don’t speak to people that often anymore. I know it’s going to hurt me and that I’ll have to rest afterwards. So I’ll go into these things making really active decisions, it’s so strange. I don’t want it to put pressure on that friend who I’ve decided to speak to, I don’t want them to know that. I just know in myself it matters more than it would have in the past, this phone call. That’s been very strange but also sort of nice, but also not nice, that I have to make these pacts with myself because the constant rule that I’m trying to navigate is that the more I do, the worse I feel. So I have to do less to not feel as bad. But at the same time, if I do less, I just feel bad anyway because I’m not doing anything. It’s like an empty life. I miss people, I miss doing things and reading books or listening to podcasts, going for a walk, I don’t know. That’s the pact I have to make. The biggest bad vibe of them all, after getting sick, is something that I’ve had explained to me by people with chronic illnesses. That you have to decide whether to try and live with the real world, and in that case you are going to have big crashes, big pain, you’re going to really feel the friction between you and the real world. Or you take yourself out of the real world and you self-isolate, you live on your own terms, and you find your own comfort and because you do less and you are not moving at the same speed as everybody else, you are able to become more stable. So instead of the friction of the real world, you find a stability in your self-created bubble. I think that’s what happened to me over the first year of getting sick. I was trying for so long to stay with the real world, to stay working, to stay getting dressed and cooking food. I couldn’t deal with the pain that I was under, every day. The pain flares were just… crying because my legs were in pain, with no relief, because I’ve yet to find any kind of pain management that is successful. I’ve gone illegal… I’ve gone edibles, I’ve gone all the routes. I’ve done everything. Massage guns, head and cold, Gabapentin, Codeine… my body metabolises any kind of pain medication and it just doesn’t work for me. So I then reached my wall with pain and decided to withdraw, I went nocturnal, I stopped leaving the house, I stopped getting dressed. I stopped doing things that didn’t matter to me any more because they were the things that made me worse. And actually, it was great, because I was in less pain. But I totally lost any relation to life and it really made me very depressed. Now I’m on this third stage of trying to climb out of stability and go back to the friction. I’ve been trying to do more and I’ve been getting dressed. I’ve put makeup on and cut my fringe. I’m already feeling so bad because of the pain. It’s like a rock and a hard place. Do you live with friction or stability? There’s no right way to go. I’m wondering, if this continues, if I continue to be this sick, am I just going to swing between those two extremes? Will that be the way to go - a few months of pain and then I reach my limit and go back to the stability, say goodbye to everyone for a while? And then when I need to go back, do I then come back? The fact I even have to think of this is so fucking strange, I’m sure there’s other people with Long Covid who are going through that wave. Or maybe they don’t even have the choice, maybe they just have the live with the friction because of their job, or because they have kids. Because they have caring responsibilities, or there’s no one to cook for them, or because of money. I’m self-employed, Michael has been nice enough to cook. I just happen to be in the kind of job where because I’m a writer, I can write late at night and let go of the day, I can stay inside and all of these different things. It’s like this privilege that has changed how I feel about life completely. It got to a point, especially in the stable part where I was nocturnal, not seeing anyone, I had let go of everything. There’s a Virginia Woolf quote that I’m going to read where she said: “What’s the use of talking if you already know that others don’t feel what you feel?” I only wanted to speak to other people with chronic illnesses, I found it so difficult to communicate how much pain I was in. But also that decision that I had to make, the massive sacrifice either way I went with it. I kept zooming out and thinking about how hard it was for me to even comprehend, and therefore if I can’t even understand how can other people outside of me, who don’t have chronic illnesses even begin to get what’s going on?

You don’t have to explain Long Covid to anyone and everyone, but you do have to explain it to the people that you’re interacting with, family, friends. How have you found the process of explaining or communicating what you’re experiencing to people?

It’s been really hard. The only people I trust have gotten it are my super inner circle, so like, you, and a few friends, a few family members. There are family members that I don’t speak to anymore because they don’t understand it, and they’ve said I’m being dramatic, really horrible things. There are people in my family who have not been vaccinated, who I immediately have no time for anymore, because that’s so dismissive and selfish of them. But I always worry, posting anything online beyond my inner, inner circle of people who I trust to get what’s going on. This maybe goes back to my own ableism in the past. If I knew someone was sick, with a long term health condition or a chronic illness, and I saw that they’d posted a picture in the park smiling. I’d be like - aren’t they sick? Why are they in the park smiling? I didn’t understand that there are good hours, there are good days. There might be really shitty times in between and maybe the only reason they’re in the park right now smiling is that they had a rest day beforehand, and have cleared space over the next 48 hours because they know they’re going to feel shit for having left the house. I hate that I ever questioned that, but I was never in it, so how could I have known what it would have taken to get to that point? We should just celebrate that person made it to the park. I feel self-conscious in the same way now because I know I have treated other people, even just in my head, questioning, being like - huh? I’ve treated other people like that in the past so if there’s a day where I have gotten dressed and put makeup on, took a picture because I feel nice, I’m like, do you know what? I’m not going to post that because I’m worried other people are going to think I’m well again. This sounds like a really fucking trite line of thinking, but I don’t know… it just speaks to how we, as people, understand the world, as very fixed things. I mean this trickles down to how I understand Long Covid as well, because I stopped being able to leave the house and therefore I was like, wait, I’m housebound. I gave myself that label because I can’t do anything or go anywhere without pain, all of these things. So I’m housebound. But at the same time, for the past few months, once a month I’ve had to go to the doctors for blood pressure checkups. So I’m not housebound because otherwise the doctors would come to me. But there’s this thing going on with how I understand myself and how I label myself that really gets me confused. Because using the word housebound might express the seriousness of how badly I feel to other people, it’s a quick shorthand. But then by saying that, if they see me in that car ride to the doctors, are they going to think - what a liar, she’s not housebound. It’s so hard, the language is so difficult. This paranoia I’ve developed about other peoples' perceptions of being sick is so unhealthy and an unnecessary thing for me to spend energy on, outside of just trying to get through the day. I hate that, I hate it. I hate how much it has confused me, because as I said at the beginning, I have leg pain that is triggered if I stand in place for too long. Sometimes I’ll be like - have I still got that? And I’ll have a shower to test if it’s still there. Maybe once I’ll be OK, I’ll be like, oh my god, it’s gone. Then the next time I try to have a shower, it will be back. It’s this like, it isn’t a fixed thing. I can’t be like, these are my exact symptoms and these are the conditions under which they happen. I personally need to know that it’s the wild west, but in the wild west, the slipperiness of the symptoms and and what’s possible one hour but not possible in the next. I’m having to hope that the people around me understand that wildness about it as well, that some days it is not going to work and some days it is. It doesn’t make me any less sick. That I need to be seen as being as sick as I am, that’s so important to me and I don’t know if it should be. Maybe it’s just my own thing and I should stop worrying about like, the rest of the world. Because again, it really shouldn’t matter.

That’s just you being realistic about the way people who don’t have that knowledge of illness and disability, the way it all works when you’re experiencing it, when it’s you. People who don’t really know, they have definite ideas about what sickness looks and feels and acts like. I think you’re just being realistic about the way that can hit you. It’s one of those things, you can release it or hold on to it. You can be careful with it, it’s yours to manage. It’s up to you to decide how you want to manage that relationship, because you’ve got to think about it, I think. Because it’s so external.

It’s when it goes from that internal list of symptoms to an external arena where you’ve got to communicate what’s going on with people who aren’t feeling it for themselves. You’ve got to hope that the people who can’t feel it for themselves are going to care. It’s that gap, and that’s where the self-consciousness comes in. If I post a picture of me on a good day I start to think, well I should even it out and post evidence of a bad day. But that’s just stupid, because it’s so easy to show a day when I feel good versus expecting a single image to capture how I feel when every symptom is in full force. So with that issue, how could I ever expect people who aren’t in the room with me or in this kind of body to reckon with what Long Covid means. Maybe that gap and that frustration comes down to a bigger insecurity that Long Covid isn’t taken seriously enough and if it was, even though this is a stupid wish, everyone would understand it and I wouldn’t have to explain myself and do big mad podcasts about it. In a world where post-viral illnesses were understood maybe treatment would follow, because it has just been so demoralising and I almost feel like it has made me worse to try and interact with doctors and speak to them about Long Covid. I don’t know what I’m expecting when everyone from the M.E or Chronic Fatigue Syndrome community has warned the Long Covid noobs to not expect anything because doctors have got nothing to work with. They don’t know how to treat it because there is no treatment, really. The way I have dealt with the NHS this year has been an actual scandal, it has pissed me off so much and just really upset me. I waited five months or so to have a call with the Long Covid clinic in Liverpool. I was so excited for that call because I thought, do you know what? I’m at my lowest point now, I cannot cope or treat what’s going on. I don’t have the knowledge or the expertise, I need the experts to help me. I had that phone call with the Long Covid clinic, it was someone called Dr. Gardener. At the end of the call, after him doing this really long survey about all the symptoms, he went on and on for about ten minutes about Long Covid being ‘a British thing’ as if it just didn’t exist in other countries, and about people accessing benefits and how maybe Long Covid is a very British thing because we have a welfare system that can support people who are suddenly claiming that they’re really sick and they have been sick for a long time. He was saying it with a tone that made me feel embarrassed because I had just spent an hour on the phone with this man describing all the symptoms that I had, how fucked it was, how my life had changed. And he ended with that. So all of this transparency for me, even if I’m as transparent as I can be it’s just not enough, is it? I can record this episode, I can give it a nice clickbait ‘My Year With Long Covid’ title and try and lay it all bare. But what I want from doing that isn’t going to happen, which is a dissemination of very personal information, the experience of having post-viral Covid, to the point where the media takes it seriously and therefore science, everyone, the Government really does the work I need them to do to fix me and everyone else with Long Covid.

Yeah, full stop, that’s all you need to say. I feel like a dickhead then, asking this question, but between all of those bad vibes, medical professionals are shit, pain is shit, people are shit, Long Covid itself is fundamentally bad vibes and shit. How have you tried to figure out ways to cope between all of those big bad vibes?

I think the first thing was to try and get into the mentality that I might not get better - to really resist that ‘Oh you’ll be fine soon, don’t worry’. To just sit with it and think, do you know what? I might not be able to travel again, I might not get back to where I was, this might be it now. I might get better, who knows, but I’m not going to bank on that, I’m going to deal with what I’ve got right now. That was the bigger shift. I think that inner circle of people, who I don’t need to convince, is how I’ve coped. People who have just taken me at my word. Because why would I lie? Why would I exaggerate any of this, it’s bad enough. I’ve coped with you, helping me with work and friendship. Michael has been amazing and Michaels family, I can’t thank them highly enough. Michael grew up with a sister who had M.E. and was housebound and has gone through something very similar, for years and years. Because of that, his Mum and Dad and his sister and him have all been exactly the best team you could ask for. Michael, who has done all of the housework for essentially a year, I think sometimes - if I was single, or if I was stuck at home, I think I would be in such a bad place. I’m in a bad place now but I would be in an even worse place because I would be going through that friction of trying to keep up with the world and not being able to step aside and rest. Being not able to see people and do things and go out and browse shops, all those things that everyone else takes for granted. A big part of that has been alleviated by friends sending me nice things in the post. You’ve sent me loads this year but for example the book, The Lonesome Bodybuilder. Zarina thought that this book would be really good for me, and I’m going to read it. Just like, I would never have been able to go round the shops and pick that. Obviously the internet exists but I’m over the internet most days because it’s all I’ve got. So like, knowing people have been thoughtful and used some of their money to get you a little gift and go through the trauma that is going to the post office, has been so meaningful. In an Emo sense, it means that you have all not forgotten about me, which is really nice. People have just sent me the nicest things. Like if I put on Instagram, I’m really craving matcha, then Lou McNamara sends me a message like, what’s your address I’m going to send you some matcha latte sachets. I’m not saying the matcha thing to try and beg someone to get me it, because I can obviously buy some myself, but she was just thoughtful enough to say well I’ve got some, do you want some, I’ll send them to you. Those moments have been so nice. I love the post, I love getting post. It is so exciting and unexpected. The circle of friends, I’ve made new friends who have chronic illnesses. Some of them with Long Covid and some of them with other conditions that are really similar. Just speaking to them, that reassurance, that masks-off connection, has been so special. And their wisdom - there was a point, I’m thinking of a specific example. I wrote a text at the end of last year about how my approach to game criticism has changed in becoming disabled, and trying to see the good side of getting sick. What have I actually gained, because disability isn’t just about losing everything. Maybe there are things I’ve gained as well. While that might be true, a really kind, gentle message from a friend who was like - you don’t always have to bend over backwards to see the good in this, it can just be bad and that’s fine. Not everyone has the energy or want to see the good in it, it is fine to just think it’s shit. That community of people has just been amazing, and it’s like those little acts, people sending things in the post, little messages to check in. I will never forget this first year of who has been there, literally, who are the ride or dies. There are people who’ve fucked off, who checked in at the beginning and then never messaged me again. There are family members who don’t know what to do, how to cope with what’s gone on. So they just like, refrain from doing anything. It’s such a shame but it has made me really love my friends, and really value friendships. It’s that thing I was saying before that so much is lost but the things that I have got and I decide to still do feel really deliberate and meaningful. So that’s been a huge way of coping. And then, playing video games. Which is an obvious answer, but I’ve never played more video games in a year. Games is a really nice way to speak to friends as well, because there’s a level of energy it takes for me to speak to people face to face that I can’t use willy-nilly. Whereas chatting to people while you’re casually playing a game and just like, it’s easy to make little comments with people. I’ve found friends who play video games all night long who can keep up with my nocturnalism and that’s been special as well, that otherwise would have been a really lonely time.

That’s emosh! Oh god, yeah.

Ahhhh. God.

Oh Gab. I think, yeah, that’s a really good point about not having to constantly search for an optimistic outcome or a light at the end of the tunnel, where it’s all OK because this redeems it, it was all for something. Sometimes shit-ness is just senseless.

Yes.

Awful things happen every day for no reason, it’s not like a narrative. But, not even but, just full stop. But last time we spoke about Long Covid, how many months ago, nine months ago? I asked about how it has changed your relationship with your body. Because this has been a full scale body recalibration, your relationship to everything has just been… shook. I’m curious how you would answer that question now.

I never used to think about my body beforehand, it was a functioning thing, it was a tool, it had constant energy, full battery all the time. It worked. I never got sick. I used it and it was fine. Now I feel really present, I feel like I am in a body now. I have landed back down to earth and I don’t like it. I wish I could- I have said this so many times this year, but I wish I could cut my legs off. Which sounds like really violent but when your legs are on fire and no painkillers work, I just wish I was a Barbie doll and I could take the limbs off so I can feel them and then put them back on later when they’ve calmed down. I just want to ascend, I don’t want this. I don’t want my hair to be falling out, I don’t want the feel or the look or the lack of movement. I really miss exercise, I miss not having to think about things. I miss being like - oh I’m going to the shop for some milk. But now if we’ve ran out of milk I’m like, who am I going to ask to get milk? Because I can’t leave. It’s so convoluted, my life now is so convoluted. There’s so many extra steps between what you want and when it happens. Sometimes what you want can never happen, and that’s something to mourn or secretly hope for in the future. But the future feels like it’s gone. I’ve been learning about people who talk about crip-time, which is the sense of time that disabled people have, where it’s this slowed down, staggered, weird time zone that sick people share, which is only exacerbated by me being up all night as well. There’s writing about how as part of crip-time, the future just disappears, because how can you plan anything? How can you schedule anything? I don’t even schedule things with friends. If I am going to have a call with friends I try not to schedule it, I’ll just say, in that hour at like 11pm on that one Thursday night when I’ve got it in me, I’ll say are you free now? I’m not saying, do you want to have a chat on Thursday… do you know what I mean. That futureless-ness fans out into how I feel about my body as well. All the plans that I did have in life are greyed out. I would love to go and travel more, I want to go to Japan. I want to go to arcades in Japan. I just want to go to arcades, Zarina! I want to put coins in machines and win toys. It’s greyed out. I thought maybe one day I’ll have a child? Greyed out. I wanted to learn how to drive, greyed out. Because my body cannot commit, because it is unstable and even if I do get better, how the fuck could I put myself through pregnancy? I’ve seen the horror stories, why would I ever risk… if I was to reach a new kind of stability, I couldn’t shake that. It would be such a precious thing. I can’t imagine putting a baby inside me that would then have to come out.

Yeah. It’s like that kind of, I don’t know if this is just me being inherently scared of childbirth. But like, I feel like you wouldn’t take that body for granted, and put it through an ordeal that is completely unknown. A stable functioning body…

Exactly. Even if I was to adopt instead, what if I relapsed and then I couldn’t look after that kid? So there’s this whole new line of questioning that I don’t even want to think about but because of the body I’m in, I now have to face it. I resent it so much. I don’t feel like I have a good relationship with my body anymore because it is constantly pissing me off. It is such a little bastard. I can’t, I can’t! I need robot times when we can put our consciousness in things that don’t feel because I am so over it.

Upload yourself to the cloud!

Oh my god, I wish.

It’s interesting. I had a thought while you were talking about crip time. Maybe edit this thought, maybe this is just a thought for the family, you and I. We’re both graduates of CBT, we’ve both completed therapy. Tick, mentally stable, done. One of the main points, the way that as a help system works, if if you are struggling with past or future, those two directions, theoretical worries that you can’t do anything about. You know, things you can’t affect. You just release it and think about the present. It’s like you’ve been forced to think about the present because the future has just been greyed out. You can’t answer any of those questions. Even one about whether you’ll be about for a call on Thursday. It’s fundamentally a question mark. You can’t think about it, body on survival mode.

Yeah. I did realise, I think, over 2021, the year I have been sick - I got sick on the 2nd of January so it’s really easy to record it. I think my anxiety has never been more chill than it has this year because of that forced presence. But in its place I just got depressed instead because depression is a more stable state of mind than anxiety, it’s almost easier, at least for my body, to default to sadness rather than the energy it takes to be anxious. That was really interesting because it made me think my mental health was quite rock solid, but actually, depression isn’t great either. I haven’t enjoyed it. Do not recommend.

Breaking news!

Depression: not great. Oh, god.

I’m being facetious laughing at that but you make a good point - anxiety is generative, even if it’s bad generative, the things you’re generating are bad vibes. You don’t want them, you shouldn’t be generating those things. Depression is like, it sucks things in. It just is.

Yeah. There was a point in December when I said to Michael, I think I might be depressed. And he went, ya think? I was like, oh shit, I didn’t realise.

Did he not tell you! Did he not think that was important information to convey!

I think he thought I knew. That conversation. This might be a good way to end the episode. The conversation happened when I got my rejection from PIP - Personal Independence Payments - I’d applied for PIP from the Government which is apparently not a work-assessed thing, according to the Gov.UK website, but is there to make up for people who are sick and cannot do things and therefore need to spend more money to just live. It’s to help you be independent. The amount of money I’ve had to spend this year in order to continue living life because I can’t go out and do things myself… it makes me pissed off. I’m in a state now where I can’t do shit, I’m going to apply. The application process took ages, it was really difficult, and I had an assessment over the phone with a woman who I absolutely despised. At one point she said to me ‘have you still got friends?’ and I was like, you fuck off. Why is that an important question? How do I answer that?

Do you qualify for an extra amount if you’ve not got mates? Fuck off.

Yeah, exactly. Evil.

Wankers.

I got a letter through the post a few weeks later that said it was unsuccessful, and I’ve not even read the full explanation because I had a breakdown and said to Michael I might be depressed, and he was like, obviously. I just read like one of the first sentences, ‘you write articles online’ and basically saying that I was too articulate on the phone to qualify for any support. Which rattled me because how the fuck are you supposed to articulate how bad you are without articulating how bad you are?! They claimed to understand chronic illnesses and the changeability. The fact that I’m recording this podcast with you today, I couldn’t have done this yesterday, I couldn’t even sit up. Because I’ve had this chat with you I am not going to be able to do anything else for the rest of the day. When I’m on this phone call with PIP, and I’m full of the adrenalin of having the speak to someone, and I’m masking to try and get the information across and be understandable… what do they expect? It pissed me off. I’ll read the full rejection when I’m not depressed because I can’t cope. I know that Long Covid has been added to the list of things that qualify for PIP and it would be interesting to speak to anyone, any listeners, who are in that situation and have managed to get it. I can’t see me applying again because it was just so emotionally taxing, but it would be interesting to speak to people about it. If you’ve got the energy, send us an email - [email protected]. And I think that’s it. I think I’ve said everything I needed to say.

Yeah. Long Covid, zero out of ten, would not recommend.

Hate it. Bad times.

Bad times. Thanks, I hate it. But thank you as well, this feels like an act of good generosity… I shouldn’t slap the table when I say that because my phone is recording on it. This feels like a good act of generosity because I think transparency is important, functional, practical for you as a writer, but transparency is a kind of generosity. Sharing where you’re at with people. You don’t owe anyone an explanation and this is so much juicy context for people.

Thank you for listening, and if you’re going through what I’m going through or if you’re in a worse place then I’m sorry! It’s fucking shit and we do not deserve it. I hope the Government fucking sorts itself out because they are to blame.

That’s a good ending. Fuck the Government, Fuck Boris.

Boris Johnson. He doesn’t deserve to just be first-named like a casual thing.

He doesn’t, yeah.

The fucking murderer. Okay! And if you want the written version of this there will be a written transcript on thewhitepube.com in case you want to refer back to it. Thank you for listening and also thank you to our Patreon supporters. We have a Patreon - patreon.com/thewhitepube - where people can give a pound a month or however much you want to support us with in order to back us as writers and yeah, we’ll see you on the internet! Thank you Patreon people. Byee!

Byeee!