Long Covid & Mental Health

In which Katya & Hannah discuss black hole thoughts, the healing powers of time, and the emotional rollercoaster that is life with long covid / fibromyalgia.

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Theme Song: Harry Gould
Artwork: Ellie Atkinson

Transcript

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Katya S  00:01

Hey guys, welcome back to the podcast and Happy New Year. In today's episode, Hannah and I are talking about mental health. Hannah and I actually talk about mental health all the time. But we've been really slow to make an episode of this. I think I initially kind of my excuse to Hannah was that I had like a fear of maybe making something too sad for our listeners. But on reflection, I think the reason I put off doing this is that I just wasn't ready to talk about my mental health on the podcast. Until now. There was a time when just telling somebody that I was living with long COVID could bring me to tears. And it just took a lot of practice to overcome that response. In the time since falling ill Hannah and I have found a way to live with long COVID. And we've rebuilt lives that are happy and full of meaning. And I think now that that's where we are, it's so much easier to reflect on the darker periods, because we're not in them anymore. And that's not to say we don't go there sometimes, because we definitely do. But being a guest is not the same thing as being a resident. So yeah, I hope you find this episode as interesting as I did. And as always, if you have any questions or comments, or you want to share your experience of long COVID and mental health, send us an email at boundedenergy@gmail.com.

Katya S  01:21

I love hearing from you, we received a couple of emails from the last episode. And I was asking people to share the things they gained from getting long COVID. And I'll actually share one this was my favorite from a listener called Diana, who said, "long COVID taught me to cut the crap I literally have no energy for bullshit. So my bullshit filter is very well adjusted meetings that should be an email not going, people I used to meet just because I say no to that now. Books I didn't really like, I don't have to finish them". I love this, reading this just made me smile. I kind of I didn't even realize I was doing this post COVID. But like, it's so true. Who knew that the quickest way to delete an energy vampire from your life is to develop a chronic illness. You just have no time for any of that. I feel like I have a meme in my head. It doesn't exist. So I might created. Its you know, in Pirates of the Caribbean, the first one when Captain Jack Sparrow has his pistol with only one shot and he is being chased by the guards. And Orlando Bloom is blocking his exit and he holds up his gun to Orlando Bloom and says "this shot was not meant for you". I just I have that. That comes to my mind every time I'm faced with a tedious person just like this energy was not meant for you. Like, get out of the way. Or I'll kill you. No, I'm kidding. Okay, I'll stop because I'm rambling now. Please enjoy our episode on mental health. 

Jingle  02:50

I'm having a good day.

Hannah  02:55

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

Katya S  03:06

Shall we start then Hannah? Because I don't want to I feel like we went over last time and I feel really determined to make this doable

Hannah  03:13

. Sure.

Katya S  03:14

Yeah. How do you feel about doing an episode on mental health now cuz I know we're really unsure

Hannah  03:21

Super avoidant? I just I don't know, I don't know why it is that I feel really resistant to like, talking about it. I don't know why. But then I recognize that it is a big, a big part of living with long COVID. So we shouldn't ignore it. We should talk about it. But yeah. It just, it doesn't come naturally to me. Or something. But I Yeah, feel comfortable with. So it's fine. I just have to cope with the like weird feelings and move through this conversation.

Katya S  04:00

We, we had an email from someone that made me feel so much better about it. One of our listeners wrote in and said that, in a way, all of our episodes have been about mental health. A listener called Patrick, it was such a lovely email. And yeah, he said, You mentioned in episode one doing an episode on mental health and I'd love to hear that. But then I thought I don't actually listen for advice or dusty, dry facts. I listen to people with wicked sense of humors and refreshing amounts of honesty tell their stories.

Hannah  04:27

 Yeah. Thanks, Patrick. That's exactly what we try to try to get late. Yeah, so I'm really glad that you feel like that's what you're getting from the podcast. Yeah. No, I yeah, I think he's totally right. We do weave it in. We just haven't kind of really sat down and dedicated some concentrated time to that as a topic on its own. But yeah, how do you feel about this topic? 

Katya S  04:51

I feel really keen to talk about it because I actually talk about mental health a lot. And I think I didn't until I started talking therapy which I did like nine months ago or something. And I feel like, because I feel it's that thing of like, it's just practice. 

Hannah  05:11

Yeah, 

Katya S  05:12

I feel that the first time probably that I said aloud, I'm feeling so depressed. Or I'm having all these weird thoughts, can I share them with you? First, the first, like, 50 times were probably really hard, because I didn't have the phrases already. Whereas now, like, because I've said it so many times, to so many different people and have never been I've never had, you know, a bad experience, like a terrible experience. Really? I find it Actually, I like talking about it, because I find I connect with people when I say stuff like that. 

Hannah  05:52

Yeah, for sure. So you were saying like, what would you say your mental health was like, just before you got long COVID? And then how did it change?

Katya S  06:06

Ah, Hannah that wasn't on our list of questions. 

Hannah  06:09

Sorry. I just got interested in that subject. I suddenly thought, Oh, what was? What was it like before? Because we we can't pretend that like, we have like absolute perfect mental health and then long COVID happened, right? Yeah. We're messy people to begin with! 

Katya S  06:25

Yeah, yeah. I think I have had experience of mental health issues for the first time ever in my life at university. I just had a lot of anxiety, maybe some depression, some like, food issues for a while, but they had all pretty much cleared up by the time I was like, 24. So I would actually say from like, because I think I got long COVID at 27. I think I probably had a good, you know,

Hannah  06:52

 good run

Katya S  06:53

Three, four years of like, good mental health. So sad things made me sad and happy things made me happy. And I've rarely I would say I very rarely experienced hopelessness. And I definitely didn't experience it for like long stretches of time. And then COVID for me was like, I would say it's like nothing I've ever had before. In terms of the ... you called it the other day, black. I don't know if you've said the word before, but you called it black hole thoughts. Black Hole thinking. 

Hannah  07:29

It's like something I would say because I have to visualize everything. So. 

Katya S  07:32

But how do you how do you thought of that phrase before I did it? Did it just come to you? 

Hannah  07:36

No, it just came to me as I was messaging because when I was trying to like, empathize with what you were going through, and I was thinking, Yeah, it feels like that, like this sort of, like black hole that you get sucked into sometimes.

Katya S  07:50

I guess for context, I occasionally have bad days still, and I left Hannah a voice note when I was feeling really depressed only lasted a day or two last month. And God like I hate those black hole thoughts. But I feel like you were you were so right. When I had long COVID If I think of the acute period, maybe like the nine months when I was you know, getting out of bed and like really housebound, those black hole thoughts were with me all the time. And the back hole wide is amazing, because obviously that calls suck you down. It's so hard to escape that way and that heaviness. Like maybe this is nerdy. But as you approach a black hole, I think time slows and there's a period where time actually stops. I think that's what happens on the event horizon. And something about that, though, that feeling of hopelessness. It was like Time stops like you can't ever see you can't remember what it's like to be well, you can't imagine what it's like to be better. That was my mental health during the first few first six to nine months of COVID

Hannah  09:00

 it it's like feeling trapped in that feeling and trapped in that moment in time like i this will never change this all this is always just going to be this shit. I've definitely had those moments I think and I mean, this might not be true but like from what I sense from our conversations, I feel like I do get those black hole moments but I think I get them less than you do. I think 

Katya S  09:34

now or at the time or at the during the early like the first six months of long COVID?

Hannah  09:40

Yeah, mate maybe it is just that we're on slightly different pathways I'm just like we always say like I'm like what like a year ahead of you? Yeah, because yeah, like I definitely did feel very down very depressed and yeah, like very despairing at certain points when I in the early days. When I first had it, and I didn't understand what was happening to me, and then also, I was still in a job that wasn't suited to my condition, and I didn't have the flexibility. So I just kept pushing, pushing. And so I was being constantly confronted with my, with my weaknesses with my limitations all the time. Whereas I think now because because I've made changes to my life and really adapted everything, I can feel more content I face face less, day to day kind of barriers and frustrations, obviously, I still do, but not to that same extent, then sometimes when I'm faced with a really difficult situation, but the sort of situation that I usually hide myself away from, like, I don't know, this, like really dark things like going out on a day trip, and then realizing like, Oh, crap, I can't actually, you know, do this level of walking, I can't manage these inclines or everyone in this group of people is talking about all the amazing stuff they're doing day to day and I'm can't even light a match to there... 

Hannah  11:13

in terms of their daily energy that can really get me down, that can push me back or however you want to, like phrase it slug me back into that black hole sometimes. But I think that's why I do quite a lot to try to protect myself from comparison because I feel like comparison for me, and always has been actually, comparison to other people is the often the thing that will push me towards that black hole. So like comparison to what my colleagues were able to do so when I used to work at the hospital or, but that's why I pretty much don't engage with social media at all. And I really just try to keep it focused on myself and I interact with people, one to one as often as possible, and I kind of don't really go to parties anymore. Unless it's like a really important thing like a wedding or something. Yeah. Cuz Yeah, I just know, it doesn't make me feel good. 

Katya S  12:14

But even comparison with your former self, right can be unhelpful.

Hannah  12:21

Yeah. I like I got a bit tearful a couple of times when I've just been watching TV. And so I used to do pole fitness, which was my, my big I remember your pole dancing. Passion I loved I loved it so much. And obviously, I can't do that anymore. So like, really daft stuff like seeing in a film or on a like, on TV, like a music video or someone doing pole. Thatbrought tears to my eyes, because I was just so like, it reminded me like five years to do that.  not not like as good as that. But I used to do something near that. So missing it like that feeling of loss. Yeah, yeah.

Katya S  13:05

 But it's like that feeling of loss. Because sometimes I can have those thoughts now. And it doesn't provoke us  a spiral. But sometimes it does. I feel like I almost have a list of thoughts that I've just, I kind of try and remind myself that like, these thoughts go nowhere. And they are those thoughts of like, why can't I do this? This is unfair. What if I never get better? What if I get worse? What if I never dance again? And like, when I'm in those black hole moments on bad days, those thoughts come up. And I often can't but sometimes I managed to, like avoid a total spiral by just being like, nothing good will come of these thoughts. Like they literally go in one direction. And that is like yeah, total despair. It's just so they're so poisonous for me right now

Hannah  14:03

Yeah, totally, totally.

Hannah  14:04

And I find like, folks, I know it sounds like cheesy and like this isn't like we're not here to like give advice about how to manage mental health but like I try to remind myself a lot of the things that I do have in my life like I try to like because I think sometimes what I what I really don't like feeling about myself is like obviously there's a time there's a time for wallowing. There's a time for feeling sad for yourself, but then there's a time as well to be like, Okay, well look, this is me. And I have to like, I have to try and make the best of this and I've got I've got this in my life. I've got that in my life. I've got all these like so many things to be grateful for which I know is just, I don't know, probably a bit like grating to hear or hard to hear if you are in a really bad place, it feels like that's just impossible to kind of achieve that mindset. But that is definitely what I try to do, which helps. 

Katya S  15:12

But I guess I get the feeling of like the effort. It's like, you know, you have this thinking pattern that's really unhelpful. And you found some things. Like, I remember the other day watching Matty dancing, he's like, he has dancing lessons, which I sometimes find really hard because I danced everyday as a  child and as a young adult. But I remember watching him dance, and just feeling so devastated. Just that strong feeling of sadness. And then I thought for a second, there must be parents in wheelchairs who are watching their children play, and having that feeling of, oh, God, I wish I could go, I should be able to play with you. This is so unfair. And I find actually thinking about other people with disabilities, who also have to handle those kind of frustrations. It's like a mental thought exercise that I do, and it brings me so much peace because it's like, like, I'm not the first person to watch someone dance and, and be furious that I can't participate. 

Hannah  16:20

yeah physical limitations, like, physical disability is just a part of human existence and everyone experiences to like greater or lesser extents at some point in their life. Yeah. So it's just trying to remind yourself like, no, no, I'm, I'm part of humanity. And this is like part of the human experience. And some people are able to dance at age 30. And like other people aren't, and I'm just one of those people. And it's about trying to remember yourself as as part of the collective. And not just like, it's me, isolated on my own watching the rest of the world live the lives they want to live. Yeah, exactly. And the other thing you said that really struck me was, like you said, this is now a few minutes ago, Hannah, I feel like you said so much there that I agreed with was... I think you said something about having more things that you can do, like you've organized your life now so that you're not like constantly bombarded with all the things you can't do.

Hannah  17:15

 Yeah,

Katya S  17:16

 I kind of wonder if, like, because my early, long, COVID days... I wonder if part of what made them so horrendous, apart from the acuteness of my symptoms was that I hadn't, hadn't changed so much of my life. So I just had a bunch of things that I couldn't do, and I had no alternatives. And it has actually taken two years, it's taken two years to move closer to work so that I can see people every day, it's taken two years to like, find new hobbies. It has actually taken two years to educate my friends and family on how to like, interact with me. It's, it takes that much time. 

Hannah  17:59

Totally, totally. Yeah, yeah. And, you know, I'm kind of speaking now from position like, three, four years in where it kind of, I think I can, I can forget actually, how much hard work and how much frustration and upset went into forming the new life that I have now. Yeah, definitely. 

Katya S  18:23

How was your...You asked me such a good question at the start, and I didn't turn it around. Like, how would you say long COVID changed your mental health from, from pre to post? 

Hannah  18:34

Um, I think I'm a bit I'm a bit conscious of kind of coming across like a bit of a stereotype because I know they say that mental health issues or especially anxiety is kind of 

Katya S  18:48

all your fault. (laughing)

Hannah  18:49

Yeah. Yeah, is in a greater prevalence of that within the long coat people with long COVID And, you know, I've, I have quite high anxiety I always have done like, I'm much more, it's far more unusual for me to feel depressed. That's not usually my way of being. So that's why when I did have those black hole moments, like when I first got long, COVID it it was wow, I don't feel this way very often. Whereas I feel kind of on the other end of the spectrum, a very large percentage of the time, which is being really high....  I don't know how to explain it. Like really high frequency, like kind of always like vibrating with a bit of tension and like a bit of churning and, and fear. 

Katya S  19:46

Yeah 

Hannah  19:47

I've kind of tried to describe it before is like I kind of feel all the time like, there's something really bad that's going to about to happen. I don't know what it is or what it's gonna look like but I just have this sense of like, dread. And so then sometimes when things go wrong, say I make a mistake at work or, or something like that I then I'll suddenly think, oh my god, it's here. It's that thing. It's the downfall that's been coming towards me this whole time and I've been fearful of and it's here and then I'll go into like a bit of a panic and and then I have to just Yeah, so the way I've been trying to visualize it a lot is I've like drawn this in my notebook, because I like do drawings in my notebooks like I have to, like, I think a lot in pictures. So I have how I how I feel, which is a picture of myself, like about, like a little sailing boat like about to like sail over like a massive cliff, or like, going down into like a whirlpool or something, what I feel versus what is real. And I'm actually just like, bobbing up on down on the rocky sea. And it's like, no actually, what's actually happening in reality is one thing, and then my feelings are really, really disproportionately fearful or anxious. So I have to, like, remind myself of how I feel, what is real, how I feel, what is real. 

Katya S  21:20

But you had that before COVID? You're saying? Wait? 

Hannah  21:23

Yeah, yeah, for sure. 

Katya S  21:25

It's so messed up, right, you probably thought you probably thought that, like, the bad thing was going to be like being told off at work. Right? And actually, like, fate was like, Oh, we got something in store for you!

Hannah  21:37

Yeah, I know, I know, 

Katya S  21:40

 I'm sorry. That's messed up. 

Hannah  21:41

But that, you know, I, I do. So in before I got long, COVID, I was really doing a lot to try and work on myself and try to keep, you know, do lots of things to help soothe those kind of highly anxious feelings. And, and it's just kind of, there are times where it's more and times when it's less, you know, like times where I can be like, oh, like, I'm actually, you know, haven't had that feeling in a little while, or I'm not feeling it in such a heightened way. But it... Yeah, it goes up and down. And I would say that, I think the long COVID and fibromyalgia is kind of just a, it's just like an additional, it's just an additional load to deal with, on top of like a pre existing anxiety. 

Katya S  22:34

It's so interesting that you have anxiety, and I tend towards depression more. When I think about my like acute suffering. It's not anxiety, I have experienced that before, but but it's so it's always like depression. If I think about what's crushing for me, it's that. I guess how, how was getting COVID for your mental health? Like,  in the first like four months or something? Did you still feel anxious? Or did that change? 

Hannah  23:02

Yeah, so really bad, because then I was really anxious about not being able to do my job, but not being able to show up and do my work. And like meet meet expectations. So and then, as it continued, It then became a an anxiety around my health because because I know so much about progressive neurological conditions, because it's something that I work with, or worked with most days as a speech therapist. I was then very afraid that I had multiple sclerosis. So whilst I was going kind of, you know, trying to go through the NHS system and trying to get tests trying to get proper investigations and everything. Because at the time it was so early people didn't really didn't even have the word long COVID at first when I was when I got the symptoms initially. So I really did think I had kind of a serious progressive neurological disease based on the symptoms that I had. So I was kind of freaking out.

Katya S  24:11

Yeah, 

Hannah  24:12

so yeah, that so yeah, the anxiety definitely heightened. And then when I pushed, pushed, pushed, pushed, pushed, I really burned out and that's when I had to move on from my job and move into my current job, but I really burnt out and then I remember hitting, I suddenly was I went from being in a really high anxiety state to just plummeting down into depression for a short period of time where it was like, What is this? 

Katya S  24:48

Yeah, 

Hannah  24:49

yeah, it was like major black hole feeling because I just thought like my whole professional identity had just completely fallen apart. And like my identity of myself as like a, like a healthy fit, you know, reliable competent person or those? Yeah, yeah. And it's sad because I think actually, do you know what I have long COVID slash fibromyalgia. And I would still describe myself as you know, but in a different way, I'm healthy. I'm fit to the extent that, you know, I'm able to maintain. I've just changed the goalposts myself, and I'm still reliable. I'm still competent. But I've just, I've really, I've reimagined that for myself now, whereas I was still holding myself to old standard. So totally, yeah, yeah. So and that, sorry, no, no, I was, I think, since that rock bottom moment I have. And I've changed job and really worked hard to change my lifestyle. I've, I feel like I've been, I've climbed out of that. And I have ups and downs. But I'm kind of at a level with my mental health where it's, you know, it's it's manageable. It's more things like, I'm on my period, or I get like a virus or something that makes me feel extra rough. I feel like my anxiety and frustration, heightening more than usual. 

Hannah  26:19

But what about so , what about you in terms of from when you got when you got long COVID then to now what what's your mental health journey? 

Katya S  26:28

like, it's the same, same thing as you like that. Over time, I've gained more control over my life. So I'm, I feel like a failure much less. Because I, it's so much less frequent that I bump up against something I can't do. Like, I've stopped organizing more than one thing a week. And I don't set myself up for failure anymore. Exactly. Yeah. And it's Yeah, and just one thing I wanted to say is, I remember reading some of the poetry from this guy, I think it's Alec Finlay. And he, he lives with chronic fatigue /ME, and he, in one of his poems, he says something like, a crash is never worth it, or something like that. And at the time, I thought he meant like the physical consequences of overdoing it are never worth it. But actually, one of the things I've noticed is when I overdo it physically, and I get a crash, the next day, or a couple of days later, my mental health just falls off a cliff, in when I am, like, immobile and forced to sit down. It's like it comes out of the blue, the black hole thoughts, I can literally like go from feeling quite normal to suicidal the next day. If I crash. It's like, like physiologically does something to my brain. 

Katya S  27:50

I think that the difference between now in my early days, is I think in my early days, I was in that crash almost every day. And then I slowly spent less and less time in that because I had given myself time to rest and get better. So now, I probably accidentally overdo it every three weeks, and then I have those thoughts just turn up out of the blue again. But it's just so much less frequent that I can say what overall now, my mental health is good. And I get these weird visitors when I overdo it. 

Hannah  27:50

Yeah, 

Hannah  28:27

Yeah. Yeah, that makes sense. No, definitely. That's so interesting. What I think what you were saying about, there must be something physiologically about going through a crash that also changes your mental state too, that I really think that's true that does strike a chord with me. So I'm sure you're not the only one. Because I feel that too. And I'm I'm sure listeners will feel that as well. 

Katya S  28:53

And I had food poisoning over Christmas 

Hannah  28:56

I remember you messaged about that. 

Katya S  28:58

I was feeling completely normal for an hour and then every hour ever, like on the hour I'd be throwing up. And during that five minutes of acute nausea vomiting. My brain did the same thing. I literally watched it be like this agony is endless. I'm always gonna have food poisoning. uuughh Oh, actually, I'm fine. Maybe I'll watch Mean Girls. This agony is endless. I'm always going. And it was almost like watching like my long COVID journey condensed to like a day.

Katya S  29:27

Ya know, it's like the vomiting became less frequent

Katya S  29:30

Yeah. We should wrap up Hannah for our health

Hannah  29:37

Indeed. 

Katya S  29:38

Do You want to say anything? 

Hannah  29:40

I feel like oh, no, I feel like I started off being like, Oh, I don't really feel like I can talk about this. And then I just like word vomit.

Katya S  29:51

But, yeah, it feels like such a privilege here hearing these things from you. 

Hannah  29:57

Oh, really? 

Katya S  29:58

It does. Yeah, yeah, like I said, Funny, isn't it? How you can know someone for so long, but like, I didn't really know that you were so visual. But actually, when you said like black hole, like, a lot of your language is like that. 

Hannah  30:11

Yeah. Yeah, I found it's like the only way really that I can, like connect with my mental health. Like, if I tried to do it just through, you know how people talk about like, words like saying mantras to yourself, like to calm yourself or things like that, like, that doesn't really work unless I have something to visualize or, or touch at the same time. Something I used to do when I worked in the hospital was keep like, like an object in my pocket, like, like, I would make a piece of origami. And then like, write the written phrase on it, and then keep it in my pocket. So like, I just I need something tangible, tangible, more tender words. Otherwise, it just doesn't really change. My thought processes. 

Katya S  31:04

That so lovely. 

Hannah  31:05

Yeah, yeah. And I know there are lots of people that who have the same brain as me who, yeah, if you feel like the usual stuff that you read about, like, how to change your thinking patterns or whatever just isn't really speaking to maybe try like drawing or creating something that you can carry with you or visualize in your mind instead. I really like that. 

Katya S  31:30

Yeah, like if think happy thoughts isn't working. Yeah.

31:36

Let's call it a day, Hannah. That's okay. Well done. Thanks so much for this thing. We hope you enjoyed this episode, and that you join us next time. If you enjoyed the podcast, please leave a review and recommend us to a friend. Send your questions and comments to bounded energy@gmail.com Or find us on social media at bounded energy.