**Starring Hannah's cat Tinker (Gourmand/Pisces/Long Covid Companion).
In this episode, Hannah admits that she will not be going Christmas carolling this year, and Katya shares her hopelessly unrealistic plans for New Years eve.
We want to hear about your experiences! What do you do with your bounded energy?
Email: boundedenergy@gmail.com
Twitter/Instagram: boundedenergy
Transcripts available on our website: www.boundedenergy.co.uk
Theme Song: Harry Gould
Artwork: Ellie Atkinson
**Starring Hannah's cat Tinker (Gourmand/Pisces/Long Covid Companion).
In this episode, Hannah admits that she will not be going Christmas carolling this year, and Katya shares her hopelessly unrealistic plans for New Years eve.
We want to hear about your experiences! What do you do with your bounded energy?
Email: boundedenergy@gmail.com
Twitter/Instagram: boundedenergy
Transcripts available on our website: www.boundedenergy.co.uk
Theme Song: Harry Gould
Artwork: Ellie Atkinson
Tinker 00:02
-meeow- Pesky cat,
Katya 00:03
Does the cat want to say Hi, Hannah?
Hannah 00:05
I think he does.
Katya 00:06
Why don't you just bring Tinker up? (to the cat) What are you doing for Christmas?
Hannah 00:13
Oh, it's really embarrassing. Don't tell him but we've got him a little stocking.
Katya 00:18
And this is Hannah's cat.
Hannah 00:19
Don't tell him but there's little treats in there. And there's a special Christmas themed tunnel in it because he likes tunnels
Katya 00:26
Who doesn't like a tunnel?
Hannah 00:30
It's madness!
Jingle 00:34
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 00:51
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 01:03
Merry Christmas and a Happy New Year. Thanks so much for joining us for our festive special. In this episode, Hannah and I talk about how we're planning to navigate the festive season with long COVID and we finish with our new year's resolutions. Listening back to this episode, Hannah and I realized that we're sort of textbook examples of anxiety. Hannah's worried about whether or not she'll actually make it through the period. And I'm in complete denial and I'm unprepared for everything. I've kept those bits in though because to be fair, I think a lot of us have mixed feelings about the happiest time of the year.
Not everyone has a merry Christmas. Someone really close to me lost a loved one this festive season. And I saw my mum being unsure of whether or not to write Merry Christmas on that card. I've seen people in the chronic illness community talking online about this dilemma. And I do get it. So for those of you who have given up on fruit for the champagne you've packed in your fridge. Merry Christmas. And for those of us who felt like we're just keeping our head above water, I say Merry Christmas too! Why is it only the healthy people who get to be happy? I defy you - find those moments of joy this season. The small things like Taylor Swift's new album or a cuddle from a loved one. Seize them, lose yourself in them and make them burn bright. Even if perhaps they don't burn for as long as they used to.
Katya 02:29
A friend of mine, listened to our second episode on long COVID self help. Yeah, and he lives with anxiety. He said that he listened to episode two, and could really resonate with the pacing
Hannah 02:41
Really?
Katya 02:43
And it surprised me as well, I hadn't considered that a mental health issue could need the same kind of lifestyle adjustment. But he was explaining he needs to plan and prioritize what he spent his energy on. And make sure that social activities are appropriately paced because he gets overwhelmed. And he needs that downtime to get his mental beans back.
Hannah 03:09
That's so interesting. I hadn't thought of mental health and the three P's having the same relationship that it does with chronic fatigue. Wow, I love hearing how people have related to what we're talking about in ways that I just didn't expect. I'm so grateful that people share that stuff because it opens up your mind to all the experiences that people are living with and it just it makes you think so much bigger picture. It gets you out of your own head, I think as well.
Katya 03:42
Yes. So yeah, please if you're listening to the podcast and you relate to anything, let us know because we're so interested. And on the back of our last episode and your recommendation, I got a TENS machine and I found out what it is. So it's like trans epidermal electronic nerve stimulator. And you're right it sends this little current that interrupts the pain signal to your brain and blocks pain but then also there's this idea that like a feedback loop relaxes your muscles. Anyway I've been doing it before bed. I must look absolutely mad it's quite... there's a lot of stuff in a TENS machine. Little nodes and wires.
Hannah 04:28
I know it took me quite a while to work out Yeah
Katya 04:32
I find it really soothing long COVID wise I use it on my psoas because I sit all day
Hannah 04:39
What's a psoas?
Katya 04:41
I think it's the muscle that goes around your hips and up your back a bit I think right? I was lying in bed. If you can imagine the blanket was covering my legs and my top but I had like a big gap around my psoas with all these electrodes, and I just remember laying there thinking if mum and dad come in all they can see are my pans and the electrodes. (both laugh) But thank you for recommending that.
Hannah 05:10
Oh, no, you're welcome. But when it comes to aching, I get aching kind of all the muscles around my lower arms, and then sometimes at the top of my arms near my shoulders, but I have no idea what that's about. I've never had this before in my life until, you know, recently.
Katya 05:30
Until long covid or...? until you took up rock climbing? Because that can really get your forearms too.
Hannah 05:35
(laughing) No, no, no, absolutely no physical activity could possibly have triggered it off. Apart from maybe I don't know. Lifting a pen or something.
Katya 05:49
Yeah no I know it's like this weird pain has come from inside me. The other day I was working. And I moved too quickly. And I absolutely murdered my back. I was in so much agony. I was just sat there like, Oh, this is long COVID related, because I haven't done anything but that inactivity is itself a physical punishment. Like it's not... my body doesn't really like spending 23 hours stationary.
Katya 06:19
Oh, and on that note, I have another recommendation.
Hannah 06:22
Go for it.
Katya 06:23
for like a year and a half I've been googling long COVID yoga on YouTube. I've never found anything but I found a 40 minute video by Sarah the Long Haul Yogi. It's called 'Stretch that psoas - yoga for long COVID' It's the first video I've found so far where I could do the whole thing. And she makes you rest, which is exactly what I need. Because I wouldn't do it myself. . And then she has the genius idea of getting you to do the warrior poses with a chair underneath you.
Hannah 06:58
Oh, that's a good idea!
Katya 07:01
So you're supported. But you still get a wonderful stretch.
Hannah 07:07
Oh, I'll check that out.
Katya 07:14
So just before we start our Christmas episode, I need to explain that I get the sense of anxiety as we get closer to the recording that I'm going to suddenly run out of energy. We just can't guarantee things anymore. I think we joked last time about how we take it in turns to cancel because you just don't know what you're gonna be like. But I guess what I'm trying to say is we're recording this at the start of December. Because I just knew that if we waited until the 19th. Like that only gives us five days to be sick!
Hannah 07:50
Yeah, I've definitely learned the hard way. But I think that's one of the first things that I was actually going to talk about in relation to managing the festive season is...
Katya 07:59
Well I think first off Hannah, we have to say Merry Christmas.
Hannah 08:02
Merry Christmas!
Katya 08:04
Merry Christmas, for 15days time. But yeah, sorry, you had stuff to say. So go for it, Hannah.
Hannah 08:13
I was gonna say that what you were saying about the unpredictability of our health. I've been feeling that with Christmas. I'm like, gosh, what if I wake up on Christmas morning, and I'm just having a really, really shit day. I'm gonna potentially spend the whole day in bed. So I just think for one thing, all the three P's. So planning, pacing, prioritizing, absolutely apply to Christmas, and the whole lead up to Christmas, and everything that happens after Christmas and during the beginning of January. You've got to plan things in advance. Like I was thinking, I've been trying to be really on it with getting Christmas presents for my family. And then I'm thinking, Gosh, I'm going to need to plan a time to sit down and wrap everything. I can't leave things to the last minute now. Because it's like, well, I don't know if I'm going to be alright in the last minute and trying to do loads of stuff in the last minute is going to wipe me out for the day itself. I think I've just got to not put pressure on myself to try to squeeze everything into the day of Christmas. And I've just got to try and declutter it a bit and just try and focus on the most important things. And I don't know, maybe try and spread out the celebrations a bit more and think well, on the day of Christmas, I'm only going to be able to do so much. But maybe there's more that I can plan in and around the day itself to feel like I've actually celebrated it.
Katya 09:39
This is interesting because our first question was How are you feeling about the upcoming festive season? And it sounds like you're feeling anxious?
Hannah 09:48
Yeah,
Katya 09:49
I don't know. I feel like I live in total denial. Because all the things you're saying count for me as well. I just haven't done it like, I haven't bought any Christmas presents. I actually haven't even opened up the Secret Santa name that I have. Yeah, it sounds like you're...
Hannah 10:06
well,this is me, I, when I'm feeling anxious about something, my reaction is to plan and do things in advance, I have a real fear of not meeting a deadline.
Katya 10:16
There are worst reactions to have, by the way, Hannah, there are worse reactions to have... my reaction to an upcoming deadline is to do it in advance!!!!
Hannah 10:27
Well, I would, you know what I'm like, I don't like leaving anything to the last minute, really. Whereas I know that you're much more of a last minute worker, right? I'm just trying to think of how we used to do essays back at uni... Yeah, we were very different. I would have written it like two weeks before and you would be like...
Katya 10:42
Yeah! Yours we're also consistently better though... I had like a bit of, I was gonna say 'revelation'. I don't know what the word is - a change. Last weekend, as I was getting ready to go to my friend's wedding, I had been saying to my dad that I wasn't sure what I was going to do, if I was going to go, how long I was going to go for - all these other things. And he said, "I don't want you to get lost in this illness, you need to keep trying". And then he's he said, "When you have the beans or the energy to do something you really want to do, you need to take those moments and make them burn brighter, because they burn for less time." And I took that, and I went to the wedding and had a wonderful time and then spent the last week feeling like I was drunk and hungover at the same time. And I was thinking about my last two Christmases. And they were awful. They were awful because they were ruled by illness. But I then reacted to that by just completely shutting down. And so I have this thing of Christmas 2022, which is crazy that we're here. How can I pick the moments that I want to burn brightly?...
Katya 12:01
I don't know how to say it. But I know I can't do the whole thing. I think I have seven days off work or something across the Christmas period. They will not all be good days. But I'm so excited for the good bits that I can steal. You know what I mean? If I only have a few afternoons of good health over the Christmas period, I can't wait to talk nonstop over Christmas dinner and burn brightly but for less time. I'm looking forward to the festive season. And I I don't know maybe I shouldn't be but I'm really looking forward to it.
Hannah 12:37
Yeah, you should. Because I think yeah, like you said, even if you have, you know, a moment or a couple of moments of like really enjoying yourself for those things. That is what it's all about. Isn't it? Like for me ... You are making me think about like, Oh, what is my? What is it that I absolutely want to prioritize my energy for if I had to get rid of everything else. I think for me, it is waking up in the morning, and then exchanging gifts with Chris first thing in the morning. When you kind of distill it down, I've got my little moment to like burn bright. Yeah, yeah, I think I'll spend it doing that. And then I'll be really happy because I want to give Chris his presents. I'm excited to give him his present
Katya 13:21
And not hold back any of that excitement. Right? That's your moment.
Hannah 13:25
Yeah, yeah. And enjoy the moment. And then after that, it's like, Okay, now we'll just see what the day brings.
Katya 13:32
This is the thing I've experienced post the wedding is... I'm not resentful of the crash. This exhaustion that I feel and the ache from that weekend is the reminder that I chose to really be myself for those hours. They are memories to live for. And like if you give Chris your energy on Christmas morning, and then maybe by Christmas lunch, you've run out of words, can you be at peace with that?
Hannah 13:57
Yeah, I think you're right. If you spend the whole time just focusing on all the stuff that you can't do, the things you're missing out on, the stuff everyone else is doing that you can't be involved with. It's just Yeah, it's gonna be shit, isn't it? And I think it requires radical acceptance. You have to somehow find a feeling of peace with your limitations and be really happy with the moments that you've got. But that's a really difficult state of being to achieve think you have kind of lived with it for a little while to kind of build that wisdom.
Katya 14:36
But it's also kind of messed up though, because one of the reasons I'm so looking forward to this holiday and the reason why I feel like I have more opportunities to shine brightly is because I have seven days off work. Because I have more downtime. I get to have more uptime and I feel like uptime is what I've I've been really missing. Yeah, so that's, that's why I have this like huge sense of excitement.
Hannah 15:03
Because you know that you, you basically carved out enough rest time to allow you to have your moments, I think, ,
Katya 15:11
Maybe I'm being really naive and I won't even publish this on Monday the 26th because I'll be so furious that I spend Christmas sleeping.
Hannah 15:21
I know, we do sound quite hopeful, don't we!
Katya 15:23
But there is so many anxieties that you have as someone with a chronic illness around the festive period in general, like Christmas and New Year's, because something that I have and live with is a fear of reinfection, which I often feel silly about. But it's like, well, my last reinfection was in September. And I mean, you know, I am much better, but I'm not like... I'm still walking 10 minutes a day, and I took a month off work. So when I've been thinking about when are those moments when I'm gonna really burn, they are in social situations, and I just, I've tried it before, but I cannot wear a face mask in a social situation, because people just don't talk to me. And I don't have the lungs to speak loudly. And so for me, there are gonna be a couple of moments when I'm with my family or my friends, and I'm unmasked at the peak flu and COVID time, and I don't know what to do, but I just know that I cannot... I can't not take the risk.
Hannah 16:30
Yeah, we take risks in life all the time. And it's a very personal thing, isn't it? how much risk you're prepared to take and what feels worth it to you? I think for me, I am scared of reinfection, too. But if it's socializing with family and things great if it's, I don't know, going to a football match or...
Katya 16:51
the club! Would you go to the club! (both laugh)
Katya 16:58
I miss that stuff. I really do. Before I got sick, I didn't do it regularly. But there's nothing more fun than getting really drunk and dancing to the cheesiest songs.
Hannah 17:11
I know.
Katya 17:12
Anyway, shall we move on to what are you doing for Christmas and New Year's? Or do you want to? Do you want to stay in our anxious... like, I'm totally fine to stay there, Hannah. We can worry some more if you like
Hannah 17:27
(laughing) No, I'm happy to move on.
Hannah 17:30
I feel bad I feel like I started the conversation with just so I'm really anxious that I'm planning
Katya 17:36
Yeah. How are you feeling about the happiest time of the year? It's like I'm absolutely terrified. To be honest, I'm dreading it. (both laugh)
Katya 17:46
No, honestly, I think you can't fake it. I think you'll get to happiness. But if you've started in anxiety you need to pass through...
Hannah 17:56
Absolutely. Yeah, you need an accept like, okay, all right. I'm feeling anxious. But you know, we can move through, we can find the happiness and those moments of contentment during this time? Because yeah, I think trying to just squash it down doesn't work.
Katya 18:13
So yeah, mixed feelings about long COVID at Christmas. What are you doing on the day, Hannah?
Hannah 18:20
In terms of Christmas this year, I'm having it at home, we're going to be cooking. Well, Chris is going to be cooking bless him! (both laugh) And then we're gonna have a really quiet one. What it's going to be I think it's going to be about six of us.
Katya 18:38
I feel like in long COVID terms that's like... a crowd, that's
Hannah 18:44
it is a crowd. I think I'm going to be seeing Chris's extended family which involves children the following day. That's why I'm like, I can't just have a big blowout on Christmas itself. Because that's the thing is it's not just that day. There's things that come after Christmas day! But I don't know - what are you doing?
Katya 19:04
Well the thing is, I felt really bad now because I was gonna say, my Christmas is perfect for people with long COVID Because it's just me and my parents, my two brothers, and like, we've never been a very active family. Like normal families go for walks on Christmas Day. It's the Christmas day walk! My family have never done that. The only excursion we've ever done on Christmas is taking grandma to church. And no one ever wanted to do that. So as we got older people just dropped like flies. When you physically could not make my little brother go to church, it would literally just be me and my older brother driving grandma to church, but now it's just the five of us. No one will leave the house on Christmas Day. I'll watch a church service on television. Because I just... there's something in me that says it wouldn't be Christmas day if we didn't have... I don't know why
Hannah 19:54
(laughing) But you're an atheist! What are you doing?
Katya 19:57
No, I know I'm an atheist. but it's all the good songs at Christmas. I don't think God will mind. Yeah. And then we'll honestly we'll just have lunch, and then we'll watch a film.
Hannah 20:07
That's nice.
Katya 20:08
I feel kind of bad now because I I was all... I feel like I might lack empathy... I find it really hard to remember that other people have a different life experience to me. And that, like your Christmas will be different to mine...
Hannah 20:21
No! Everyone gets caught up in their own in their own existences. That's the point of socializing, isn't it to be like? (laughing)
Katya 20:31
That's the problem with long COVID! You just don't socialize! I just assumed that we all spend Saturday nights in our bedrooms.
Katya 20:38
You were saying that you have your extended family and their kids coming around on Boxing Day?
Hannah 20:45
No, so I'm going to theirs. I'm really looking forward to it. You know, I haven't seen the kids in a while. It'll be really nice to spend time with them. But I just hope I have enough energy to give them the beans they deserve.
Katya 20:59
When it comes to little children. I just have to accept that I I can no longer play with them. Yeah. Because I used to at Christmas, whenever we had our cousin's kids over, I would play with them and let the parents chill. And there's a huge sense of loss of, I can't play this game with you now.
Hannah 21:18
Yeah, yeah, you just kind of have to be on the peripheries. And it's different, because also children are so high energy, and I can't really match that.
Katya 21:27
Yeah, I'm not going to pretend to be the cave troll that you take down. I actually would consider myself a risk factor for holding kids. I'm serious. I don't trust my body to not completely give my under me. Yeah, cuz, like, it's just interesting with kids. I feel like with long COVID there's a really specific interval at which you can interact with children. It's when they're pre-speech pre-movement. So up to like a year maybe because they just want to cuddle and they sleep most of the time. and then it's after 14/15 once they can self-soothe self-entertain, and they can actually have a conversation. In the middle when they want to physically play. Yeah, you can't do that with a chronic illness like ours.
Hannah 22:11
I'm very happy when I meet a child that is very like me when I was a child. We can literally just sit and do a puzzle together.
Katya 22:21
What are you doing for New Years Hannah?
Hannah 22:24
I don't know what I'm doing yet.
Hannah 22:27
What a loser! (both laugh)
Hannah 22:27
It's just going to involve me sitting down, having some nice food and trying to last for as long as I can. When I think back to like, the new years I've had in the past. I'm like, oh my god, I was just such a different person! The thought of going out or I don't know getting drunk staying up till like, I don't know, 6am in the morning. Did I really do that??? Yeah. This is impossible for me to l really get my head around. But I used to have so much more energy.
Katya 23:05
Yeah. Before COVID, I knew people who hated New Year's who were like 'I just hate it. It's so overhyped.' There's this ridiculous pressure to ... you know if you think of the adverts you see for New Year's Eve. It's like a small section of society who have the energy to actually participate in New Year's ...very few people anyway can actually drink and stay out all night, it's healthy people between the ages of like 16 and 30. Even my parents - it gets to midnight and they go to bed.
Katya 23:40
My last two New Year's Eve, I haven't done anything. This year, I haven't really committed to anything in terms of like signing a contract in my blood. I have said I would go to this thing that my friend tagged me on to, but I reserve the right to change my mind at any time. And it is very possible that I will not be able to get on a train into London to then go to this dinner. One of my friends very kindly looped me into a WhatsApp group with her uni friends where they're planning their thingy. And I watched with horror as it was like, 'why don't we do a Ceilidh?' or 'this jazz bar looks fun!'. And I was kind of like well, I guess it gives me an easy opt out. But they've settled on somewhere that's just a nice little restaurant, you know?
Hannah 24:31
Hannah's still laughing at the ceilidh! ... So the restaurant should be doable, but it's also like long COVID has affected my brain in that I am not good with loud noises. If you get me one on one and it's haven't done anything yet I might be able to give you an hour and a half / two hours of my time and I can come across really normal. Yeah, if there are other people speaking at the same time it's ... It's like having a conversation with like a waterfall in the middle of us. You couldn't do it either! I can't tell which sounds I need to focus on, which sounds I need to ignore. It's so weird. I feel like a phone in the cold, my battery just goes pfffttttt. My post COVID brain just cannot function in noisy environments anymore.
Hannah 25:19
Yeah, yeah. It's so funny that you mentioned that because I think actually, I think I forget to kind of be really explicit about this, because I'm so used to it. And I forget that it's not really that normal. But I'm, I'm the same. The reason why I'm having celebrations at home in my own home is because I cannot even begin to think about traveling anywhere else. But then having to deal with noise. So I had an experience where I was at a wedding reception, there was loud music playing and lots of people talking around me. Everyone else seemed to be able to talk fine. And I couldn't process what anybody was saying. It was quite awful. I was like, what? I cannot hear anything!
Katya 26:06
the thing I find crazy is that other people find it fun! Yeah!
Hannah 26:11
People seemed to be able to then hold a conversation and act like there's not this blaring music! And I just felt like I was mad. Because I was like, what's going on? I just can't tune in to what people are saying, I can't follow this. I can't manage my own reactions. I'm not quick, I can't respond properly. I just felt like such a failure in a way that you know, I don't feel like that when I'm interacting one to one in a quiet environment with a friend. And I feel like oh, yeah, not myself. But yeah, I didn't appreciate that my long COVID had done that to my brain.
Katya 26:48
Yeah, no, you're not a failure. It's really common. The more I read online, the more loads of people are like, Yeah, I can no longer process information. And I definitely can't process information in loud and busy environments. It's not you.
Katya 27:05
And I guess, yes, my new year's plan is to attend this dinner. I have the silly daydream of being able to stay up until midnight, so I can give Matty a kiss. But I just, I don't know why I have that. Because I've been going to bed before eight o'clock for the last four months. So I don't know why I've decided that on this day, I'll suddenly...
Hannah 27:24
Yeah suddenly find like, five, six more hours (both laughing)
Katya 27:30
So I might go to this thing. But if it doesn't happen, I need to find a way to be okay with maybe spending New Year's alone.
Hannah 27:41
It is about adjusting your expectations, isn't it? Because yeah, I like that idea of picking two or three burn bright moments that you want to have that are realistic, so that when you aren't able to do much else around those little moments, you're, you're saving yourself the pain of disappointment and loss, because you've already anticipated that, well, anything else that I managed to do outside of my little pre chosen moments is a bonus.
Katya 28:12
Yeah it's so messed up. Like I'm nodding at you and smiling like, "yeah, yeah, like maybe I only have two happy moments this Christmas, but you know, I'll be okay with that!" No, to be serious. We actually do have to find a way to be okay with that (laughing) Because they're not going to find a cure in three weeks...
Hannah 28:30
No, yeah. Yeah. And like you said, your experiences of the previous two years. You either drag yourself through Christmas in a resentful funk. Or, yeah, you you kind of find this alternative path, which, and I know it kind of feels like, Well, why should I have to find this alternative path? Why should I be having to pick my burn bright moments and then be okay with everything else I can't have but there's no other way is there? You've got to find a way in your mind of being at peace with with whatever comes your way.
Katya 29:03
And, you know, I realized now actually, this is something that because of this specific economic time, we talk about this with energy. But people have to do this for the money. I mean, for this Christmas, families are going to be deciding who do we get a Christmas present for? Or maybe no one gets Christmas presents. But on Christmas Day, we put the heating on and we have a hot meal together, even though we know that those are funds that we don't actually have at the moment. Yeah, it's I don't know. It's...
Hannah 29:37
I think, you know, I was I was so privileged before I got longCOVID in that you know, I could just have it all every Christmas.
Katya 29:47
Yeah...
Katya 29:49
I think we should say to audiences like Hannah wasn't... she couldn't actually have it all. You weren't like "Daddy, I wanted a jet". And then he was like, "which one darling?" (both laugh) Yeah. Like normal middle class,
Hannah 30:01
Yeah normal middle class living. Yeah.
Tinker 30:03
(meeoow)
Hannah 30:04
Can you hear my cat?
Katya 30:06
Yeah, but its cute. It might not pick up on the thing. I only heard him then... Hannah's cat only eats the finest organic free range chicken.
Hannah 30:17
He does though!
Katya 30:18
(laughing) Oh my God Hannah I was joking, but okay!
Hannah 30:23
I'm kidding. He doesn't, he just gets cans of Whiskers. But I do give him little treats whenever, like whenever I can. I'll have fish sometimes. And then I'll give him the skin,
Katya 30:33
And a whole roast chicken. Just for you. (laughing)
Hannah 30:38
Chris holds me back. If it was up to me, I'd be absolutely outrageous with them. If I ever had kids, I'd struggle a lot to not ...
Katya 30:49
make room for them with your cat? (laughing) Yeah. Like, if I had children, I'd really struggle to not neglect them. Because Tinker came first! (both laugh).
Katya 30:58
Do you want to cover the things we have to think about in terms of getting through the festive season as someone with a chronic illness? Yeah, how are you going to look after yourself and make sure that you can have this time but not aggravate your symptoms?
Hannah 31:13
For one thing, people like to do a lot of social things around Christmas. That's been something that I've had to already be planning and prioritizing. What I have done is I've met up with friends sort of more recently, like in November, I'm not trying to pack everything into December. So it's like, okay, well, if I can see people kind of within the months around Christmas, I've done well. And yeah, for me, it's been about doing that thinking about Christmas presents. I've got to sacrifice some things. I'm not going to be able to wrap everything up beautifully and post it myself.
Katya 31:50
Yeah, you know, you know, those people. I didn't understand them before I got sick... people who would perfectly wrap a Christmas present, attach a ribbon and a gift tag. It's one of the things like I've always wanted to be one of those people. But I just... even when I had a full jar of beans, I didn't do that!
Hannah 32:10
Yeah, now that's not happening. And I mean, yeah,
Katya 32:12
it's like in a Sainsbury's bag, like Merry Christmas kids! (laughing)
Hannah 32:18
I think you know, the people that are close to me and that love me know what I'm going through. And they are not going to be offended by a gift that's not wrapped, or oh, I didn't receive a card from Hannah this year. It's like, well, no shit!
Katya 32:32
That's what you think Hannah.
Hannah 32:35
And I'm actually just mortally offending everyone I know (laughing)
Katya 32:39
I didn't even get a bow! No, you'll be fine.
Hannah 32:42
But I mean, I'm not writing Christmas cards for anybody this year or anything?
Katya 32:46
I'm guessing you're not carol singing either
Hannah 32:50
Oh, no. (laughed) I was never the one who knocked on everyone's door and sang them a carol!
Katya 32:58
I can't think of like a less a less Hannah thing.
Katya 33:02
My things for getting through the festive season is to have a buddy to help get you out of kind of tiring social situations.
Hannah 33:14
Yeah, if you can, you know, if you don't have a partner ...like for me, Chris would be my buddy. I guess. in a a family situation like my sister Livvy has got a very good barometer for how I am. Yeah. If you don't have someone that immediately comes to mind as being like maybe your your buddy for a social situation, I think, I don't know, maybe think about who you could have that conversation with beforehand. Be really honest with them and be like, Hey, I'm a bit worried about that this day. Or could you please just kind of be my wing man as it were...
Katya 33:49
Yes it's finding time to tap out
Hannah 33:52
Yeah, yeah. And I think if you've got a buddy, that can kind of see that you're flagging, they can just be like, Oh, Hannah, shall we let's let's take a breather, or let's go and like sit in that room. Because what I find is that I get a bit paralyzed with with exhaustion. I kind of I stop thinking I atop processing. I'm kind of just in there a bit stuck. Yep. So that's what Chris does is he will then intervene and say, Oh, should we go now? Or is they'll step in to help me get out of the moment? Because I feel like I suddenly lose the ability to kind of do that.
Hannah 34:28
And one thing I just remember was so kind! I had this when I was giving a lecture, and I got a horrible brain fog moment where I just suddenly lost everything I was talking about. I was trying to formulate my sentences and I couldn't get the words out. And I was so mortified and frozen and stuck. And everyone was just staring at me obviously because I'm the lecturer. And I just was like, I'm so sorry. I can't... I'm really sorry. And then I just kind of like started to well up but a student got up and then took me by the hand and then actually walked me out of the room. Tthey were so lovely those students. A couple more kind of came out. One of them brought me a hanky and they were like, It's okay. Just take a moment. But that moment where you, you freeze, and you can't really help yourself, you need that person to step in and take your hand and be like, Okay, let's leave the room.
Katya 35:30
Yes you need it to be acknowledged and to know that it's okay. And that people will stay with you in that. Yeah, you do need someone to help you tap out.
Katya 35:39
For the losing focus... My little brother can tell when I'm gone. I'm not sure why other people can't because I imagine that it's quite an ugly thing to see. But I start mouth breathing, breathing through my mouth, probably because I feel like I'm not getting enough air. And my eyes go super glazed. And I'm just like, I look a bit like I'm on drugs. (laughs) Ande maybe I am ... maybe like, when all the science has done, there'll be like, Yeah, at this moment. You were, technically, like this brain fog really was like being stoned. So yeah. You need someone to help you tap out.
Hannah 36:18
Oh, definitely.
Katya 36:19
I'm conscious of time and energy, shall we move on to new year's resolutions. Because I I do think we should share this. Especially because this comes out too late for Christmas. (both laugh)
Hannah 36:29
Yeah, definitely. Yeah. So if you're kind of thinking like, well, Christmas has come and gone.
Katya 36:36
Guys, I'll listen next year!
Hannah 36:41
In terms of new year's resolutions, I'm going to be really honest, I haven't thought about it, because I don't. I haven't really done New Year's resolutions for years. But I mean, especially for me with long COVID I just find that the whole idea of setting goals or expectations for myself, that scares me. In terms of goals that I've set for myself. Sort of unrelated to New Year, I really changed the way that I set goals for myself. So now, I think I remember mentioning a goal I'd set which was to tell more people about my long COVID. Like, stuff that I know is actually going to help me manage my illness and it's nothing about I will improve, I will be better.
Katya 37:25
I'm gonna cure myself in the month of January. Yeah. Yeah, that wouldn't be a very good news resolution. I get the whole - it's just a day and we picked it. You know, I don't know my history, but I'm sure we picked it a while ago, like, New Year's resolutions isn't a new thing!
Katya 37:44
But for me, I, I have always set new year's resolutions. This year, mine is to learn more about long COVID. I had reached a point a few months ago, of just like, this, is it. I don't know what's wrong with me, doesn't really seem like anyone else knows what's wrong with me. I've read all of the books. And I'm kind of done. Because I had said, "I'm not going back to the doctors". And I think I expressed this to my to my dad really and seeing the fear on his face of just "please don't give up" has made me think I am not going to give up. And I'm gonna keep trying stuff.
Katya 38:28
I was listening to our self help episode just thinking like, there must be more stuff! I want people to tell us what haven't we tried. And so in a view to action that I have signed up for a talk which happens on the 28th of January. So hopefully I can tell you all about it. And it's with Oxford Open Immunology. And it's a talk with specialists in the field of immunology, and specifically long COVID from Yale, and St. Mary's Hospital in London. I ordered all of the books that looked useful on long COVID on Amazon, and I'm going to read them.
Hannah 39:10
That's yeah, for one thing, really well done for doing that. Because I know you've said in the past that you find medical literature and all of that quite triggering and can make you feel worse about yourself and the whole situation.
Katya 39:24
I do I've totally avoided it. I can't bear to read 'blood clots' and or 'stroke'. I just, ugh!
Hannah 39:32
I know. But yeah, well done for doing that. And I think, you know, what I was talking about in terms of finding peace with your condition and that radical acceptance of limitations. And I do think you know, it is about finding that balance, isn't it between accepting where we are in the present moment, but then also still having that hope and that motivation to keep searching for ways to improve? I liked that idea of setting goals that are actions rather than states of being. So it's like I will do these things to kind of, you know, see where that gets me to. That sounds, oh, that's really good. I'm really interested to hear what you find out
Katya 40:21
But I was thinking I could use the podcast to tell you how it goes.
Hannah 40:25
I'd love that I think other people would love to. And if you do read any books about long COVID, you know, we can have some episodes that are like book reviews, you know!
Katya 40:35
That's what I was thinking, I have so many books on my room. I was like, well, it looks a bit depressing, because they're all like 'fatigue', 'a history of fatigue'!
Hannah 40:43
Well, I'm about to read a book that came out, I mean, in 2008, but it's by a woman who kind of specializes in mindfulness for chronic pain. Vidyamala Burch, her book is called 'Living well with pain and illness'. what the book is about is being able to cope with day to day kind of physical pain and, and limitations, and kind of how you how your brain manages that day to day. And I think just generally, you know, the fatigue as well, you know, is a kind of a type of pain, in a way. So I'm planning on reading this book, just to see if it kind of gives me any insights into how to kind of live day to day with a chronic illness.
Katya 41:29
I think I think we'll figure this out together. I want the podcast to be something positive. So yeah, that's, that's for the new year/
Katya 41:40
I was thinking about this this morning, you have gotten so much better. I know, you will find it really hard to tell. But I can remember what you were like a year and a half ago and you would not have done a call at six o'clock for an hour and a half.
Hannah 42:02
I can't see it. Because it's so gradual. Chris put it like this, which I thought was really helpful. He was like, "well, it's just really slow". He was like, "If you were at the bottom of the stairs, you know, at your worst two and a half years ago. And the top of the stairs is normal. It's like you climb one step every six months".
Katya 42:22
Yeah. And this is a big staircase, by the way. It's not like... (both laugh)
Hannah 42:31
Yeah, if I have moved up like a few steps, it's hard for me see it and that's really nice to receive that feedback.
Katya 42:38
Yeah, you have. All right. Well done, Hannah. Oh, yeah, we should say Have a wonderful new year.
Katya 42:47
Have a wonderful new year.
Katya 42:50
Thanks so much for this thing. We hope you enjoyed this episode. And that you join us next time when we'll be talking about long COVID at work
Hannah 43:00
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 43:11
And yes,that is me singing the jingle. A huge thanks to Harry Gould, the talented musician who lowered himself to produce it. And Ellie Atkinson, the illustrator who made our rather joyous log