Long Covid & Relationships

In which Hannah and Katya discuss what not to read during a coffee shop meet cute, Hannah learns her form of introversion is not as extreme as she'd feared, and Katya finds that friends can be of all shapes, sizes and species.

We want to hear about your experiences! What do you do with your bounded energy?
Email: boundedenergy@gmail.com
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Transcripts available on our website: www.boundedenergy.co.uk

Theme Song: Harry Gould
Artwork: Ellie Atkinson

Transcript

 Long Covid & Relationships

Katya  00:01

It's so weird how you're like a young person in an old person's body -  no other way around! (both laugh) I mean you're like an old person in a young person's body! When you were like, 'I need a whole day to change my whatsapp photo' I was just like, Okay then I guess...?

Hannah  00:19

(laughs) I know this is the ridiculous thing -I used to be an old brain in a young body and now I'm an old brain in an old body. And you might as well just be talking to a 60 year old woman. Really?

Katya  00:35

(both laugh) - no! I think you'd be wiser!

Jingle  00:43

I'm having a good day (minute/hour/week). What to do and how to be with the beans given to me, me and my bounded energy?

Hannah  01:00

medical disclaimer, we are not doctors and we are not giving medical advice. If you are struggling with any of the issues discussed in the podcast, please seek professional help. 

Katya  01:10

Hey, it's Katya. Welcome back to the podcast. Just a brief intro for me today. I just need to mention that the start of this episode, we begin with something that is extremely rare, something I've only experienced once or twice in the last 10 years, Hannah expressing annoyance. Hannah joined our call late having had a stranger overstay their welcome on her doorstep. And she is reeling from the experience. And I just love this conversation. And I've kept it in because I think it really shows how difficult it is to deal with strong emotions positive and negative when you're living with bounded energy. Hannah and I are unusually high energy on this episode. I was on holiday when we recorded it. So maybe it was that and Hannah was obviously burning with a righteous anger. I really do hope you find us as funny as we found ourselves. But if you don't, I hope you can at least take comfort in an honest conversation on the impact long COVID has had on the most important part of our lives, our relationships with our partners, Marty and Chris, with our families, and with our friends. Thanks for listening.

Both  01:44

Hey/How are you? 

Hannah  02:26

I'm fine. I'm having this experience where I'm feeling like really, like irritated and angry. But because I've got long COVID And I can't go and  do some like really like fast yoga or go for a walk or something. It's just like fermenting!

Katya  02:46

Yeah, poisoning you from the inside. It's not even that you can't go for a walk you can't even express it too passionately! 

Hannah  02:55

Well, yeah, exactly. Oh my god, I just want to like yell really loud! It's just.... But this is the trouble is I can't assert myself... like I can't sort of say... because I'm so worried about making a social faux part. And so rather than actually doing the sensible thing and being assertive about my needs, I tend to try and wait it out.

Katya  03:18

 For me it's if I have something I really want to do, like this podcast is one of them. I try and save up all of my beans. And then anything that makes me expend them fills me with anxiety and stress because it's like, you think you've hopped over for a nice chat. But you're not in my schedule. And you're taking energy that I had planned to do something else with and if you rob me of this, I will never forgive you!

Hannah  03:48

Literally like, oh my god, like the resentment I was feeling because yeah, you're right. It's like, right, I have so many beans!

Katya  03:56

and then that poison drains you!  being full of hatred is fatiguing! Honestly, in the past with things like that when I've had to use my beans for something that I didn't plan. I've had an angry crying fit, which is very different from a sad crying fit. There's a lot more like energy.

Hannah  04:19

Yeah, yeah, definitely. And I don't know what like pillow pummeling or whatever.

Katya  04:24

Oh my god, you can't do that with chronic fatigue. I tend to like sobmyself into a complete state of exhaustion. And yeah, I crawl to the nearest soft thing and just kind of stay there. 

Hannah  04:38

Totally. I've totally been there. Yeah. (both laugh)

Hannah  04:41

I don't feel resentful or angry or irritated or really irritated at people that often.

Katya  04:48

No, you're not really like that. 

Hannah  04:50

I'm not really like that anyway. I can kind of let a lot of things go. Yeah, but it's funny just today. Just really? Yeah, it's like a really different experience. 

Katya  05:00

So I want to explain why this episode is important to record because I feel like people who don't have long COVID might be like, Well, why are you doing an episode on relationships? But I, I'm listening to a really lovely book at the moment, it's called The Good Life by Robert Waldinger and Marc Schultz. And this book shares the results of this study. It's called the Harvard study of adult development, where they basically followed like 1000 people from 1938 onwards, and it's still ongoing. And every year, all of the participants had to fill in a one hour survey, just self reporting on their happiness, they had to share all of their medical records. And then every decade, they would have a four hour long interview with the researchers. And the goal of this study is to find what makes a good life. And the results of this study basically show that if you were going to pick one area of your life to invest time and energy in that would have the greatest payoff in terms of your physical and mental health and your general happiness, you should invest in your relationships. 

Katya  06:12

I'm only halfway through the book, but it talks about healthy relationships as almost like adjacent to things like healthy eating and physical exercise. There are a few theories they have as to why strong relationships have such a strong correlation with good health. But one of the theories is that loneliness is a chronic stressor. And so they think that the mechanism by which having positive relationships in your life leads to better physical and mental health is that it helps you deal with stress, which, you know, long term is really bad for you. And so I just been thinking, you know, reading the book, it made it really clear to me that the hardest part of my long COVID Is that because I have low energy levels, maintaining my relationships has been very difficult. And at times, it's actually been impossible. That's why this feels like such an important topic for us to talk about.

Hannah  07:04

Yeah, yeah. Yeah. That's so interesting. So just really just, it just I don't know, if it's kind of sad... It's just so sad, isn't it? Because the more and more tired you get, the less and less you can be with people. And then that makes it even worse. It's just such a vicious cycle.

Katya  07:24

Yeah, reading this book for me actually has been very helpful. Because I feel like I just needed the reminder, I feel like I've been so focused on my physical health, and my mental health. And I've been trying to deal with that by stretching and meditation. But actually acknowledging that my social health is another part of my life that I can work on to help me get through it. Because the book mentioned that people who are in healthy relationships, and who experience physical pain, experience less suffering when they have strong relationships, than if they were to experience the same level of pain by themselves. Yeah. And so if you're starting out with long COVID, something to be really mindful of is that you will not be able to actively maintain your relationships like you used to. So you need to find ways around that asking for help asking people to come see you. Video calls...

Hannah  08:22

Yeah, totally. And what I find is that there are some relationships and interactions that are actually really draining. Whereas obviously, there are others that are really, like rejuvenating and fulfilling. I have noticed that my tolerance for those more draining interactions is less. I really feel it in my body after having conversations with particular people. I'm like, wow, I now feel like the my beans for the day have been like, wasted on this person. (both laugh)

Katya  09:02

 And I thin one of the reasons that I think that's hard to initiate is because it feels like you're asking people to like, give more to you thanyou're giving them - it doesn't feel like you're meeting them halfway. It's like, I'll just stay here on my sofa, and you guys will come to me, you will make the effort, please. And its really hard to ask that, isn't it?

Katya  09:02

And no, I mean, I'm completely the same. It's hard, isn't it? Because obviously, like I'm in no position to give anyone advice, because I like feel like I'm constantly on the edge of like, complete meltdown. But I was feeling really sad this week, because it has been a whole month since I have seen a friend face to face because of my Christmas illness. Luckily, I was able to talk to my parents and Matty about it. And my mum was like, Oh, well, why don't you invite your closest friends over for dinner one evening, they can come here, we'll do all the cooking and we'll go out. I was like, great idea, mun. And then my partner Matty, he said, Well, Katya, why don't you send a message to your uni girls now and ask if they can do a zoom call tomorrow.  So I put that in. And it was almost like I had gotten it into my head that because I didn't have the energy to go out. I just can't see my friends. And so then just being reminded by my family and partner that there are other ways for me to socialize. Yeah. It was like, oh, yeah, you're right, like I can do that.k

Katya  10:31

It is. But then I was reading online ... people have lost friends over COVID talk about other people not understanding their illness. And I was thinking, Well, it took me at least four months to accept that my illness was real, and to stop fighting it, and that's me in my body, experiencing it. So explaining your situation to friends and family and asking them to help, you know, keep an eye on you and come and see you.... they're not going to understand! They may never understand! But that doesn't need to stop you from getting the social interaction that you need to be happy. I don't know, I just, that was pretty much what I wanted to put it in hand, because I feel like that explains why we're doing this episode. 

Hannah  11:16

Puts it in context. Yeah. Yeah.

Hannah  11:19

So we're going to talk about the impact that having long COVID has had on our relationships, but we're going to structure it in terms of partners, then family then friends.

Katya  11:34

My partner, Matty, we've been together for over 10 years now. And we moved in shortly after I fell ill with long COVID. So Matty has seen me before I got sick, and was really present for the day to day reality of my illness. We don't live together at the moment. But we obviously see each other every day. I wanted to talk to him before we recorded this. And I had this huge feeling of nervousness. I sat him on the sofa with a cup of tea. I was just like, Matty, how has my long COVID changed our relationship and and how has it affected you? And I was, I was terrified to ask this question. I don't know why. But it was also just I'd never asked him. 

Katya  12:17

He said we do less together, we used to love being in nature. And we would walk for hours and go on holiday and have like little adventures. And an adventure could just be you know, on a non rainy day just going on a bike ride and seeing where you end up. And now it's like he goes and does all of those things by himself. So that's changed, right? Because we don't spend active time together. It's exclusively downtime. And then another thing he said was the emotional strain that it puts on our relationship. And I have sensed that, but I had only really thought about it from my perspective. But he also acknowledged that he worries about me being ill. And I worry about him worrying about me being ill. I feel like I swing between two things, I swing between wanting my illness to have the smallest impact on him possible. So I really encourage him to see his friends to go on holiday. And then the flip side of that is that he does those things without me and I have to find a way to not be resentful, but to kind of stay grateful for the time that he gives me because the truth is, is I wouldn't want him sat on the sofa with me for 12 hours a day, just so that I wasn't alone. Like, I didn't know, the way I have dealt with my long COVID in our relationship is for it to be kind of my problem.

Hannah  13:54

Yeah, totally. It's hard because when you're, you're kind of like partners in in life, you know, how do you still be kind of that little team getting through life together when like, I've had similar chats with my partner, Chris. Chris, and I've been together for four years, and he's met me pre COVID and continue to obviously love me and look after me throughout my sickness. We do a lot less stuff together now. But I think for Chris he finds it hard to go out and do the stuff we used to do by himself because he misses me like he's like, Well why I enjoyed them because we did them together. It then means that there's this whole chunk of his life now that's missing as well. Yeah.

Katya  14:43

And that's, that's both extremely touching. I was kind of blown away by the love that is still there and hasn't changed because it's kind of transformed into a sadness and I always feel like you know, that kind of sorrow is just the other side of of the love. We were so happy when we're doing things together. So of course, there's a sorrow when Matt is going on his walks alone.

Hannah  15:08

Yeah, it is. It's that double sided thing. Well, I'm, I'm his feeling sad because I'm missing out on that. And I'm on my own in the house. And he's probably feeling sad because you're not with him. It's just Yeah.

Katya  15:23

That's why I meant to you. This is why I said at the beginning why we shouldn't do this episode, Hannah, because it's too sad!

Hannah  15:28

It's sad. I think for Chris, like he has said similar things to Matty in terms of the emotional strain. You know, I think Chris is very, like, he'll keep it very contained. But I think he will worry about me. And I think he's quite vigilant. Like, he'll I know that he, he keeps an eye on me... not in like a way that like... (laughs)

Katya  15:56

When he's out of the house, there's a camera trained on you at all times, ostensibly for your health and safety. But who knows? (both laugh)

Hannah  16:03

Yeah, he's got like motion sensors everywhere, and... ha! But no, like, so I know that some of his time and energy goes into checking in with me and doing so much more for me. Whereas before, it felt like there was a real sense of equality between us in terms of our roles in the relationship, just really like small things. But you know, you have to negotiate that. And when you first get together with someone in terms of like, chores, and finances, and just all of the practical life admin that comes from being a human, and comes from living in the same space together, and I felt like we had kind of a very good balance. 

Hannah  16:45

But now, I mean, all of those responsibilities fall largely on Chris, I'm always feeling guilty about that. And I do say to him, like, "I feel really, really bad that you're having to do all of this, and I'm just sitting here comatose on the sofa". But then he'll then be like, "Well, no, no, don't, you know, don't like don't feel bad, don't..." Because sometimes then in like a moment of brain fog, I'll be like, "I will help!" and I will. Like, I start trying to like tidy something or start panting up and down the stairs, trying to do laundry, and he'll be like, "Hannah, you're not helping just just go back to bed. Don't don't feel stressed you don't need to help me. Just rest". He's like, "I want you to rest. By trying to help me, you're making yourself worse. And also, you're not helping because you're literally just like moving stuff from like, one piece of furniture to the other". 

Katya  17:40

It's just like, you know, when little kids try to help mom or dad with cooking. And it's just like, this is now three times more of a job! There's a video of my dad, if not a video, a photograph, we had this huge mound in the garden in my old house. And dad had a wheelbarrow and one weekend, Dad's whole job was to chop down this ginormous mound. And they got me and my little brother a baby wheelbarrow and baby spades. And so instead of dad being able to just load up an adult wheelbarrow, and wheel that to the bin and back, you had to load up a baby wheelbarrow, wait for us to potter off to the bin and come back. And it's just like, a five hour job became like, I think it took me more than a weekend. 

Katya  18:25

But I'm sorry, just what you said about Chris doing all of the work. I once asked Matty if he felt like a carer. And he said no, but I think that's just because I'm not ill enough for that if that makes sense. But I do have this huge anxiety that he would ever see himself like that because the truth is that he does all of that kind of stuff.

Hannah  18:49

Yeah, definitely. Whenever someone in a relationship gets ill it will always inevitably change the dynamic and yeah, when the other person has to take on.... I mean,even though Matty says he doesn't feel like a carer there is an element  of caring that he is doing.

Katya  19:06

He has washed my hair before so yeah!

Hannah  19:09

yeah yeah whether he says it or not, he is your carer in a sense!

Katya  19:14

Sit down, you are my carer! (both laugh) It's like the promotion you don't want to have!

Hannah  19:23

Well, yeah, exactly. I think one thing that Chris said which was really nice was he was like, "Well, you know, you're still you" and like, even when we are just hanging out on the sofa, watching TV and like not really doing anything. We still laugh we still giggle we still enjoy the same stuff, but we just do things that are like sitting down. If I'm feeling sharp in my mind, but tired in my body will say we'll do like a crossword together on the sofa. 

Katya  19:53

We've played Scrabble before. And it's like, if I have a clear brain day I'm bad but if I don't I'm like 'cat', 'dog', 'tree' and Matty's there like 'xylophone'.

Hannah  20:09

It's like, I'd be so fascinated to see who wins between Chris and Matty, because Chris is so good at word games. He like, kills.

Katya  20:17

I don't know if Matty could take it, I think Matty already said to me that he thinks Chris is a better long COVID boyfriend than he is. He was like, I think we were listening to the first one. He was like, "God Chris just sounds like a saint!" So I don't think he can handle like direct competition. 

Katya  20:42

Something  I really wanted to say was to touch briefly on intimacy, because intimacy takes up an enormous amount of energy. And I have very little energy in general. And I think something that I have, I guess, gotten better at now that I know this is long term is giving Matty my energy, because at the beginning, it was like, Well, I've loved you for nine years, you will always be there. So I need to give all of my energy to work and my friends and things that I could potentially lose, if I don't give it attention. And so intimacy was something that I really struggled with the beginning at the beginning, because , you know, say, I gave Matty my time and energy in a morning. And that is a euphemism. For me, I would then risk spending the rest of the day lying down, and I wouldn't be able to do certain things. Whereas for Matty, it would just be, you know, time with a loved one. And then he could go about his day. And trying to work out when it's worth it. Like we've had times where I will be sat there desperately trying to do the maths. So like, Okay, well, if we're intimate, can I still have a phone call with my cousin at 3pm? Like, it's the least romantic thing. 

Katya  22:08

It's really hard to navigate, then it's also what message does it send if... oh there's a quote I can't remember where it's from! It might be from a film, but I remember reading somewhere that love and attention are the same thing. And if I'm constantly showing him not even with words, but just with body language, that I can't give you this energy because I need it for other stuff.... I think it took me a while to realize how damaging that was. . And I definitely feel like I put him first more than I used to now. 

Hannah  22:39

Well, you know, it's, it's like what we said in our self care episode about the three P's and how when you're pacing, planning, prioritizing with the prioritizing one you just got to make really tough decisions every day. And then also you kind of make mistakes, don't you? You prioritize wrongly, or just in a way that doesn't feel right. And then you learn over time, what is worth it, what's not, and I've had that where I mean, I know that I always prioritize work over everything. Because I just I find my identity is my work, I find it really difficult to step away from it. But over my time with Chris, he was really, really good for me. And it really helped me to start kind of compartmentalizing much better and prioritizing my personal life as much as I do my work life. 

Hannah  23:36

But yeah, long COVID has just put a spanner in the works now. Because it's like, well, you either put your energy into relationships, or you put your energy into holding down this full time job that supports you to survive. That's a really tough choice. It is. Yeah, that's tough, and I've definitely done things where I've been too much of a perfectionist in my job of work too long. And then because of that, I've then had no energy to , engage with Chris. And then I know that's really hurtful to him. You know, he doesn't kick up a fuss about it or anything, but I know it does. You know, if I did that all the time, it would be really damaging.

Katya  24:18

Yeah, it is. It's interesting to think about the three Ps in terms of a relationship like yeah, because I feel like they make so much sense when you talk about things like doing the shopping or work.  But when it's maintaining, you know, a profound friendship and a romantic attachment to someone. I mean, planning! When do you sit down and plan when you're gonna show someone affection and prioritize how you do it. And how do you pace romance? (both laugh)

Hannah  24:53

Oh, definitely. It's an absolute minefield. It takes the spontaneity out of anything. And yeah, it is really difficult

Katya  25:03

But now I'm thinking about it, it's so important to talk about because I remember ages ago watching an interview with a woman who had lost her legs in some kind of accident. And one of the things she was saying was - she was a young single woman - was that she really missed intimacy. And before her disability, she was an active partner, and she was spontaneous and passionate. And this illness had transformed her into someone much more passive when it came to dating and intimacy.

Hannah  25:37

I think we're both really lucky in that we have got long COVID and we are in long term relationships. Yeah, I'd be so interested to know how people are navigating the dating world with long COVID If people are even trying, you know, and if you do have the beans to go on a date and meet somebody new, how do you go about, like I said earlier, that process of yeah, when you negotiate the relationship, negotiate expectations, negotiate the time that you're giving to each other? How you go about doing that when you have long COVID?

Katya  26:10

Yeah, I mean, if someone's like, you know, "My hobbies are rock climbing, and I'm looking for a sporty partner". (both laugh) Yeah. I was watching this really silly show on Netflix. I watched it and  it's this woman who teaches people about etiquette, and she drops in dating tips and stuff. And one of the things she was saying was to guys on Tinder. She was like, "You need a photo with your friends. You need a serious looking photo and you need a sporty photo". And I was just like, but "what if you have long COVID? Or like what if you are not sporty?" I'm pretty sure if you're like a massive computer nerd...!

Hannah  26:48

 I have never been drawn in by a sporty photo. I'm sorry.

Katya  26:53

I know Me neither. But I think that's my own prejudice though. I just assume that they are a rugby lad and they're going to... I'm just not a fan like give me the quiet nerd who reads a lot.

Hannah  27:02

Yeah, definitely. Chris, when he was younger, like before he met me. he would go and read in coffee shops or take his favorite book along in the hope that some would be like, Oh, what a cool book you're reading and then he would know that if she'd read the book then they were probably gonna get along (both laugh)

Katya  27:23

that's so great! I guess it depends on the book you're reading right?

Hannah  27:26

Yeah, I'm thinking was you bring along like Gabrielle Marquez or something high brow. .

Katya  27:31

Okay. Something like you need something academic but not like too.. like if you're reading Ulysses. Yeah, no one is gonna be like,

Hannah  27:40

yeah, exactly. You definitely need that right balance. Otherwise, it's like mate, you're not going to pick up anybody...  reading Beowulf or something (both laugh)

Katya  27:54

Like you know that the Lord the Rings books that no one reads... the Silmarillion ... it's like you need to be really into Tolkein

Hannah  28:03

Yeah. You to be at like a Lord of the Rings symposium for that to work

Katya  28:06

 it's like you speak elvish and this is your book (both laugh)

Katya  28:11

Do you do you have anything else you want to say Hannah about?

Hannah  28:16

No, I think I covered what I wanted to say -it  was that we do less together and Chris misses that and then there's that emotional element of worrying about me and then Yeah, me worrying about him worrying about me which you capture. 

Katya  28:30

And now I'm worrying about you worrying about him worrying about you! (both laugh)

Katya  28:38

we should probably just do a shout out all of those people who love people with long COVID 

Hannah  28:43

My goodness yes. 

Katya  28:45

Thank you for cleaning our disgusting rooms and unplugging this shower after we wash our hair 

Hannah  28:51

and cleaning the toilet. 

Katya  28:53

Yeah, picking us up off the floor and telling us it will be okay.

Hannah  29:00

Oh my god and keeping me fed. Honestly, I would be an absolute mess without Chris... when I'm left to my own devices now I just live off toast and snack bars and stuff. And there's something about having vegetables that just changes the way you feel. Yeah, on our website I recommended though these like vegetable like food pouches that you heat up because...

Katya  29:21

You're like an astronaut! It needs to come in to pack and I need to be able to put it in my mouth with basically no effort. Yeah, I don't have to chew that's even better. (both laugh) Yeah, Hannah's like just like an astronaut apart from like, all of the intense physical training they go through.

Hannah  29:42

If I was just sent up into space with the same role as like, you know that dog, if I just needed to be there.

Katya  29:50

I think the dog does more stuff right. (both laugh)

Jingle  29:56

I'm having a good day. 

Katya  29:58

Okay, so we're going to move on to family. Do you want to go first Hannah?

Hannah  30:07

I would say with my family, I'm just not able to give them the same amount of time that I used to be able to. So I meet up with them less. And when I do meet up with them, they have kind of learned that there's a lot of stuff I cannot do now. So when we meet, it's very much sitting down having a chat, them cooking me something to eat. So I'm not meeting up with my family, being able to kind of do all these lovely day trips out, or, you know, any of the stuff that we used to do. So that's definitely changed things.

Katya  30:41

You also don't live with your family. I mean, so it's like you have even more effort. 

Hannah  30:48

I know, my parents live in Guernsey. So, um, I feel really intimidated by traveling. So they have come to visit me. But I think since I've got long COVID, maybe I went to Guernsey once, but I mean...

Katya  31:03

I haven't been on a plane either. I haven't been on a plane since getting on COVID. And the thought of going to an airport standing in a queue that I don't know how long it's for... then getting on a plane where if anyone else is sick, I'm sick with potentially catastrophic consequences. I just...

Hannah  31:21

yeah, I mean, I haven't either. I really cannot actually remember that I have traveled since I got it. It just really scares me. There's just so many steps involved. So I'm just quite reluctant to do that.

Katya  31:34

Also, because you get there and you then have to do stuff. It's not like you can get there and then take a day off to recover. It has to fit in with your life schedule and your work. Yeah, makes the downtime really hard. Because it's like, yeah, guys, I've come over to see you. But I now need a day to recover from my journey.

Hannah  31:51

Exactly, exactly. And you know, because they're my family, like, I can just kind of be in the same space as them and not do anything. But there is you know, because we see each other so little now, they do want to do things with me, they want to chat we want to catch up and, and I want to do all of that as well.

Katya  32:11

That's really interesting, because that's the opposite of what I have with my parents, because I spend so much time with them. So I've I've just moved back in with my parents, they make it so easy for me to be with them. Because they're seeing me, they live with me, they know what I'm like, I have no pressure from them. Theydon't want to catch up because they see me every day. Which is great because I also don't have the beans to catch up. I can be alone and spend time with them. But in a way that for me, it's like  full time resting. Whereas seeing members of my family who haven't seen me in a while, requires an enormous amount of energy. I'm trying to say that I imagine that's what it's like for you. Except it sucks because they're not your distant family like they are for me, they are your parents

Hannah  33:02

Yeah, yeah, definitely. And we are such a close family. I think as wellwhen I know that my family are together and with each other. And I'm not there. There's that feeling of missing out. And it is... I know we've we've talked already about that feeling of loss that comes with long COVID with like, yeah, there is that feeling of loss and me where it's just likethat quality time with my family is just it feels like it's quartered, you know?

Katya  33:30

You like your fractions.  if anyone's listening to this episode, I took out your halved and quartered bit (in episode one. Hanna says that her activity levels were like halved or quartered by non COVID) because actually I feel like things aren't quartered with long covid but I feel like things aredecimated. But it would be really weird to be like, oh, yeah, it's like 8%! You're really close with your family. It's not quartered, it's it's less,

Hannah  33:57

it's probably less (laughs)

Katya  33:59

What a nerdy thing to say! (both laugh)

Katya  34:03

 Something I really wanted to say is I feel like my parents have learned a lot. I had a really amazing moment with my mum ages ago because my mum has always been very, like quite English. And over my long COVID and my illness I would have, I still do, but I have like crying days where I cannot stop crying and it like it will come and it will go but I'll probably like just be crying and I get through them  -saying it out loud now it doesn't sound super normal, but it's like I'm used to it. Yeah. And I had a crying day where mum and dad were in the house. In the morning I just kind of like hid from them like going from room to room. And I just couldn't do it anymore. And my mum came into the dining room. And I said to her "mom, I can't stop crying but like don't worry!". (both laugh) 

Katya  34:58

And my mum bless her - she was amazing. She sat down, and she took my hand and she said, "Oh, that's okay Katya, everybody feels sad sometimes. And do you want to talk about it?" And she was so obviously going to stay there. I think I said to her a few days later, I was like, "mum, that's really I'm so impressed. Because, you know, you grew up in a time when, like, mental health wasn't a thing". . And she gave me a hug. And she was like, "oh, yeah, well, thank you. You know, it's different for me, because I was never really taught any of this stuff". And I just, yeah, my parents have done a very good job. But ya know, and obviously, like, my little brother, Luke has just been amazing. Honestly, everybody needs a Luke. I feel like if you have long COVID you need a buddy who is happy to just sit there. And like, watch afilm with you and play a computer game with you. But if you don't want to play, that's totally fine. And if you don't want to speak, that's also fine, because he doesn't really speak that much, either. He's like, right here. Can you see him? 

Hannah  35:20

Hi, Luke.

Hannah  36:06

Yeah, well, I think actually, like, I would like to say how my family are really taking time to try to understand the illness. I know that my parents have been reading about long COVID and looking into things that might help me and sending me stuff. And yeah, that's been really, really helpful. And it's that thing of, you know, they live far away from me. And they, they're not there to kind of see my day to day kind of existence with long COVID But they are doing their absolute best to help me. 

Katya  36:39

Your face lit up! And you look really cute. You look like a little kid.  obviously, because no one will ever see Hannah, which I actually think is a really good thing and I think it will be like a thing. But you have a very cute girly face.

Hannah  36:55

(Laughs)

Katya  36:55

Hannah has a very cute girly face, you're like a little V and then like a big kind of forehead. Oh, people are gonna be like, What is this? 

Hannah  37:03

Like some kind of alien (laughing)

Katya  37:06

Like Hannah, also, we should say Hannah. Hannah is long sighted. So Hannah wears magnifying glasses. You have like a Luna Lovegood vibe

Hannah  37:15

I do I have Luna lovegood vibes

Katya  37:19

And I guess Hannah floats around and sighs a lot.

Hannah  37:27

I know I sigh like one of the women in a poem that Keats wrote or something.

Katya  37:33

You do. You're like, you're like, you know,what now totally get in Pride and Prejudice. Catherine De Burgh has a daughter called Anne. Yeah, and for some reason that is never explained Anne doesn't do anything and it's like "Anne could have been a great pianist if it weren't for her health". And then in the Keira Knightley version the camera just zooms in on Anne who basically is like the palest looking woman you can imagine and she just like looks at the ground. I'm watching it now like "Dude! Guys! Anne has post viral fatigue! Let's give Anne a break!

Hannah  38:12

Yeah leave Anne alone oh my god there's always that that female figure in those books of kind of the ill reclusive usually unmarried woman where I'm like, oh my god, guys, there must be so much shit going on under the surface for that person. (both laugh)

Katya  38:33

Hannah and I did English Literature at uni. 

Hannah  38:36

we spent a lot of time being outraged at the female characters.

Katya  38:42

And their sad miserable lives but the most exciting thing was like "Pemberley is let at last". It's not Pemberley it's "Netherfield is let at last".

Hannah  38:52

Oh yeah, "Netherfield is let at last!" 

Katya  38:54

(laughing) Oh my god! No way! Ring the bell!

Katya  39:01

Okay, should we go into friends How has long covid affected you and your friends. Do you have any other friends Hannah? Or is it just me? How has long covid affected your relationship with me? (laughs)

Hannah  39:10

I was just living a lonely life until my one friend finally got long COVID as well. 

Katya  39:14

So I got long covid And then I had no friends and then Katya got long COVID And now I have my friend back. (both laugh)

Hannah  39:24

 I think we should say this actually, is that me and Katya met at uni but we were in different friendship groups. So when we would meet it would always just always be us two. And I kind of like that because I just got you all to myself.

Katya  39:37

But I was really jealous. This is gonna sound so creepy, but you had a best friend in the first year of uni because you were one four or two floors above me. And I immediately liked you.  I can't remember when we met but I think it would have been walking to class or something. I was like, Oh, I really like this person. And then you already had a best friend and I remember being like, oh!, And somehow, which is it's gonna sound strange, it's like how is it somehow? (but we literally all just became friends with the people on our floors!) Somehow we had like inter-floor friendship.

Hannah  40:15

Yeah, we did, didn't we? We reached across the void. (both laugh)

Katya  40:24

 an unlikely friendship

Katya  40:28

Do you want to go fast? 

Hannah  40:29

Yeah. So we probably have quite different experiences to talk about, really, I have friends from different parts of my life. And I found it difficult before COVID to like, keep up with everybody. And now I see people so little, I am so amazed that I still have friends. Because like, I just cannot, I cannot see them very regularly at all. And it's easier to talk to people over FaceTime or zoom or something. But it's just not the same. Like everyone knows from locked down. It's just not the same. And it's just it means so much to be able to see people face to face. It's

Katya  41:09

I was gonna be like, because you have a very distinctive smell. If I can't smell Hannah, how do I

Hannah  41:16

How do I know it's really you?(laughs) , yeah, it's a lack of pheromones ...

Katya  41:22

It is right! You know, there is something there.

Hannah  41:25

Yeah, there's Yeah, I don't know. It must be in our evolution or something.

Katya  41:30

But yeah, 100,000 years of face to face contact versus what is it? 10 years for us of like video conferencing? It's yeah, quite a lot for the body to suddenly adapt.

Hannah  41:43

It's not the same. The face to face contact. It's like I love it. But there is more taken out of me. It's like, okay, how am I going to get there and back? And yeah, then when you haven't seen somebody in a long time, or you've put the effort in to go and see them, or they've put the effort in to come and see you, you then feel like, oh, we should be spending a good, you know, few hours together in each other's company. But it's quite hard when I'm like, Oh, I really feel like I've spent all my beans and we're like one hour in. And I'm starting to feel quite glazed over. And yeah, I feel like I'm really not able to give as much to this interaction anymore. And I feel for one thing, I feel like I can't meet up with my friends and do a fun activity together. And I then feel as well, like, I walk away, worrying that I wasn't really like my best self. I bet I wasn't as like, I don't know,  fun or quick or, you know, I mean like, yeah, I just worry that like, Oh, I hope I'm still the friend that they once knew that they're not like, Oh, that was a dull time with Hannah. She said like two words.

Katya  42:49

It's not always that you can't be your fun self sometimes it's that you can't be your caring self. Because I have times when I've seen a friend. And I've seen that they're in need, and they really need to talk about something. But I'm at the end of my tether, and I can't extend that to them, because I risk them opening up to tell me about something serious. And I'm like, looking at them through brain fog. And they would know! It's not only that you can't be your best self with your friends. And that in itself brings with it all of the guilt and the worry. Are they still going to want to be my friend, will they want to see me next time, do they think I'm disinterested? But it's also like, you can't be there for them in the serious times?

Hannah  43:32

Oh, definitely. Yeah. Because it takes emotional labor, doesn't it?

Katya  43:36

Because you're meeting them halfway, right? If someone starts to talk about something sad, you need to get down in there with them and actually relate. You can't do that on a surface. And you definitely can't do it when you're not speaking and you're just nodding and like trying to remember your breathing technique.

Hannah  43:53

Yeah, exactly. So, yeah, it's, you know, it just means that I'm not able to keep up with my friends as much as I'd like to. And then I feel because of my fatigue. I do feel like the quality of those interactions has changed. Which is really, really sad. Sucks. But yeah, I mean, I thank my lucky stars that I am a very introverted person anyway. And I'm very happy being on my own. I get a lot from seeing other people, but I can go for a long time without social interaction. But I know I'm, I'm really like very, very introverted. In comparison to a lot of people, socializing with friends and texting friends and communicating with friends is something I really have to actively remind myself to do. Or like, Mmm, it sounds really bad. I don't know if I want this stuff to be kept in!!!

Katya  44:52

No, no, I think it's, oh my god. I think many people are like this, Hannah. It's just that the loud ones are super visible. For every one person who's standing on a chair yelling, you'll have 50 people around them listening. It's just like, where are you in this picture?

Hannah  45:06

Yeah,

Katya  45:06

it's funny that you think that I'm sociable and extroverted. Because I have friends who think that I'm introverted and fairly antisocial. I have friends who see people every single night. And if they don't see at least two people in a day, that's a bad day for them. 

Hannah  45:26

Wow. 

Katya  45:27

So it's, it's a sliding scale. Like, I need to see someone who is not a friend  once a week. Maybe twice a week. So if you're once every two weeks or once a month, you're slightly further down the scale. Yeah, you're not like "every decade. It's nice to know that other people are at least still there." (both laugh)

Hannah  45:52

I'm not like a hermit in the mountains or anything. 

Katya  45:54

You're not as different as you think you are, Hannah.

Katya  45:57

For my friends. I feel like I've had two different experiences with long COVID. I feel like I have experienced an unconditional love from my oldest friends. Yeah, my oldest friends have adapted to my illness in that they are willing to come over not wanting anything from me. For example, if you come and see me, we will only have takeaway pizza. So some of my oldest friends will have had takeaway pizza every night for a week. And then at no point has anyone been like, I'm sick of pizza.

Hannah  46:29

Gosh, Katya feed us something else (both laugh)

Katya  46:34

Yeah, so I feel like, it's, it's not that anything is ever a test. That's really messed up. They have proven that they love me, even if I'm not myself. And that's something that I don't know, it gives me a lot of confidence and security moving around in the world. Because I've lost friends because of my long COVID. They were not really maybe friends, someone who maybe I was really close to because we were in a specific situation for a specific period of time. But then because of long COVID I couldn't see them, you know, and during my worst moments, I probably wasn't messaging them. And then there comes a point when I haven't returned your calls for six months. And I'm now too ashamed to like, reach out and try and figure this out.

Hannah  47:21

Yeah, I totally relate to what you're saying. I know that there's people that I haven't replied to or people I haven't, I just haven't communicated with. And I know that it's probably on me, if I go back to those WhatsApp chats, I'd be like, I'm, it's me that didn't reply. And I feel guilt about that. And I have got a few people in my mind where I'm like, Oh, my gosh, I need to sit down. And I need to give some time and energy to write a proper message and be like, I am really sorry. Yeah. Yeah, yeah, I've, I've had, I've just been, I hadn't

Katya  47:59

Yeah, cuz I think the thing with my closest friends that has helped us maintain that relationship is because we were so close already. I had no difficulty showing them my illness. Because we were already so close. They saw me at my absolute worst. So they were then of course able to rearrange themselves and how they interact with me. Whereas for all of my friends who I was less close to, I didn't explain to them about my illness, and I definitely didn't show them my illness. Yeah. And so it's funny because in promoting the podcast, I've been shamelessly messaging everyone I know, some people to be like, "Hey, I haven't spoken to you in a year. But I've been really ill. And I remember, I remember you, basically, and I would love you to listen to this and know where I've been". And everyone has been, if not amazingly warm and understanding. They just haven't replied! I want to say something positive. But the truth is, I've either had like, "Oh my God, no problems. So great to hear from you. So sorry, you're going through this" or just

Hannah  49:10

or just silence? Like, okay, then. (both laugh)

Katya  49:16

You know, long COVID has forced me to accept actually that not everyone will like me and I can't control that. I can't be the perfect friend for everyone.

Hannah  49:25

Yeah, you're not going to be able to maintain every friendship that you have. Unfortunately, there's so many competing things. And if you were used to maintaining, like a really wide Friendship Circle, you can't do it 

Katya  49:41

What would you do? Like wake up on Saturday and give everyone five minutes of your time? No one wants that!

Hannah  49:47

Yeah! (both laugh)

Katya  49:48

Did you have anything else Hannah you wanted to say about friends?

Hannah  49:52

No, I was actually I was gonna say that I've had. I've had some friends in particular who have really been so kind in terms of demonstrating to me their understanding of what I'm going through. I felt so touched recently because one of my friends is getting married, and she messaged me about her hen. Because the hen is going to be abroad. And she just gave me options, just. And she she even said, you know, do you want to be invited into the WhatsApp group? Do you want to think about it? you know, there's no pressure for you to come or not come or be involved or not. And she was just, it was just wonderful. Like, it was just such a nice text to receive. Because if if all she done was just say, "Hey, I'm having a hen do in this place in Europe please come" Yeah, I would have been devastated. Because obviously, I can't go. And then she said," If you can't come, we can figure out another time to see each other before the wedding". And yeah, it was just like, oh, wow, I hope that people who who people who are friends of someone with long COVID Like, take a lesson.

Katya  51:02

Yeah! Take a lesson bitches! (both laugh)

Hannah  51:05

Yeah, just reaching out and giving choices and already acknowledging my illness. So that then I don't have to be the one to raise it. And be like, Oh, actually, I'm really sorry. Because of my long COVID blah blah blah blah (Katya laughs)

Katya  51:19

But she could only do that Hannah, because you'd already told us her about your illness

Hannah  51:25

Oh my god, actually, that is so true

Katya  51:28

 Like, my I feel like with my illness and my friends, like, I'm sure I have many people who are just like, Dude, why didn't you tell me! I would have been! Yeah, I would have come over! I like pizza!

Hannah  51:42

 Yeah, cuz they can only be responsive to your long COVID If you were honest with them, about how brutally shit it is for you right now

Katya  51:49

Yeah, it can't be like a little secret. And then why didn't you read my mind?

Hannah  51:54

Yeah!

Katya  51:55

Yeah, yeah, just speaking of amazing friends... One of my friends, I had explained to her that I had no beans for a conversation, but I really wanted to hear her voice. Then she left me this seven minute Voice Note. That was just...  it was so mundane. Shopping and walking the dog and... it was the best thing ever to listen to, you know, like, oh, yeah, one of my friends has a voice that's like singing. I just had this like singsong voice in my ear. I think I listened to it three times in a row just lying in bed. Like, I can't. It was like "So I know you can't speak but I thought I'd take you through my day."

Hannah  52:39

That's lovely. 

Katya  52:41

Cute, right? 

Hannah  52:41

That's really cute.

Katya  52:43

I'll send it to you, Hannah. Maybe I should make it available for free on the internet. Like do you need a friend. 

Hannah  52:50

Do you fancy a friend with a melodic voice? Telling you about their day? Yes. I do. Yeah. Yeah.

Katya  53:01

Really briefly, I just want to mention that I made some new friends with my long COVID.  They are 86 and 89. And our energies and pace of life match perfectly. And they are my neighbors and I'd go for a walk with the older man because he's the only person who walks at the same pace as me and then stops and has a cup of tea and I'm like, "Yes, I'll stop for a cup of tea". Yeah, and they invited me over for a cup of tea one day and we just sat in the garden and they actually like had to make me leave I was that comfortable. They were like ...wow, it's getting late. And I was like...okay then...

Hannah  53:49

oh, it kind of sounds like you know when like cats decide that they just want to move in with someone

Katya  53:59

The cat's Hannah where my parents live. I don't know something about Surrey cats they are the happiest creatures in the world. One cat who I always pet saw me through the window. And I waved at it and then he ran straight to the door. Through the window I didn't even know they could see through windows! So I opened the door and had a little bit of time with a cat.

Hannah  54:22

that is very, very cute 

Katya  54:24

friends everywhere. 

Hannah  54:25

Yeah, indeed. Honestly, having my cats has been a huge, huge support for me during long COVID Because they are company and they are something to focus on. Yeah, since we're talking about relationships. That's really sad. But yeah, my relationships with my cats. 

Katya  54:42

I think we should do a whole episode on long COVID and pets. There was some... I don't know what it was. There was something I saw on Twitter. That was a picture of a cat lying down in a pseudo scientific article and the title was, 'Does your cat have long COVID?' And this guy's response was like, "my cat slept for 18 hours a day before COVID. He sleeps for 18 and a half hours a day after COVID. Like, I think he's just a cat". Yeah. (both laugh)

Hannah  55:11

But I think that is what you said about having relationships with someone is gonna go at your pace. Yeah, I will sit on the sofa for hours in the evening and not move and my cat Tinker will just sit next to me the whole time. It's lovely. 

Katya  55:26

Like Luke

Hannah  55:28

Luke or a cat?

Katya  55:31

You can't stroke Luke. he's vicious, careful, he bites!

Jingle  55:39

I'm having a good day.

Katya  55:41

I think something to mention is just, you know, if you're going through a chronic illness, and you're experiencing a breakdown in relationships, or a diminishing of your relationships, just be mindful that you need to maintain them, like you would, you know, continue taking vitamins or fruits and vegetables, it might just be that you need to get creative with them. So people say post pandemic, no one wants a zoom call. But actually, you might need to ask your friends to zoom call, because the alternative is just not seeing them. Or my friend who sends me voice notes. Just every time I receive them, I feel it's like an audio hug. Or I was thinking - writing letters to people. You just need, you need to find some way to make sure that you have some people in your life. No one should be alone

Hannah  56:37

 I was gonna say that I find the reaching out and then the whole process of organizing when people are going to come over and like planning my calendar and stuff quite difficult at times, if I had a friend who could just be like, oh, yeah, I'll organize some of us to pop around to your house. Just tell me when you're free. And I'll I'll do the communicating with everyone to make it happen.

Katya  57:03

And you don't need to feed us. And please do not tidy up your house before we come around. We will come see you and if you are lying on the sofa, and there is no food. That is absolutely fine. 

Hannah  57:19

actually, that's so true. The thing about feeling like you need to clean your house before people turn up. I've definitely had that. And I've definitely apologized to people in advance being like, I'm really sorry, please expect my house to not be particularly clean or tidy. But then I've then gone and tried to do at least something anyway. It's just so ingrained

Katya  57:41

 But that pressure stops you from asking people to come see, right? Because you feel like you have to tidy your house. And so, it's about giving people the chance to show up, isn't it? It's like, "Well, I'm really ill. But I really love you. And I'd love you to come and see me. And it will be messy and it might smell. Will you still do this?" And most people will say "yes". You know, it's just hard to ask. 

Hannah  58:03

Yeah. 

Katya  58:05

Did you have anything else wanted to say? Or how are you doing energy wise?

Hannah  58:08

No, I think I'm probably ready to wrap up because yeah,

Katya  58:14

Let's stop

Hannah  58:15

it was really nice chatting to you about it. And it was sad, but not like too sad.

Katya  58:20

All right. That's that and... Aaah! I've been sitting on my knees for an hour and a half.

Hannah  58:27

You've been on your knees! 

Katya  58:29

Yeah, I've been kneeling!

Hannah  58:31

I didn't realize this, I could only see like your top half! You're on your knees.

Katya  58:39

Like I imagined at some point that was pain, but you can completely get used to pain and like, and then you move on. It's like oh yeah!

Katya  58:51

 Thanks so much for listening to this episode. I really hope you enjoyed it, and that you join us next time when we'll be talking about the impact long Covid has had on our bodies and how we think about and relate to them.

Hannah  59:02

If you enjoyed the podcast, please leave a review and recommend us to a friend. Send your questions and comments to boundedenergy@gmail.com Or find us on social media at bounded energy.

Katya  59:14

And yes, that is me singing the jingle. A huge thanks to Harry Gould, the talented musician who lowered himself to produce it and EllieAtkinson, the illustrator who made our rather joyous logo