Just Katya #1 - Pieces of the Long Covid Puzzle

We're not all privileged princesses, and with great power comes great responsibility. In this episode, Katya confessing to skipping the queue, and shares her latest diagnosis - in the hope that it helps! Plus the Bounded Energy inbox.

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Theme Song: Harry Gould
Artwork: Ellie Atkinson

Transcript

Just Katya #1 - Pieces of the Long Covid 

00:29

Hello, hello Katya here. So I'm going alone today because I have some information that I wanted to put out into the wild without delay. And my beloved partner Hannah is currently shackled by physical exhaustion and then buried underneath a mountain of work. And quite understandably, I hope ,it just didn't feel appropriate to bother her for a last minute episode.

00:57

Firstly, I just have to say thanks so much to those of you who reached out because you listened to our latest episode. It was the first one we've released in ages, I think it's just called Long COVID catch up. We receive some emails on the back, which I always love. So thank you to those of you who wrote to us, there was one thing that really stuck in my mind.

01:19

I'm not going to read out the whole thing, just a bit of this email from Rachel, Rachel wrote in to say,

01:27Hhi, Katya Hanna, blah, blah, blah, blah. Thank you very much. I really related to the discussion. This is for last week's episode around recovery and expectation of constant improvement. I've been largely plateaued for most of this year.

01:42

I'm just going to say hooray, Rachel, because sometimes plateauing is like, it's like you've hit the bottom or you've hit a bottom, and you can start kind of figuring out, you know, where the start of the next staircase is. Anyway, major has been largely plateaued for most of the year and the most challenging bit has been managing the expectation of others. My least favorite question is, “how many hours are you working?” As it feels like a covert “have you improved?” So you can work more hours? Yeah, it does. How many hours you're working? This is something I wanted to, to speak to because

I guess there are two reasons why I want to call out like the bizarreness of how many hours are you working as a question to somebody with a chronic illness who is doing their best? So I guess firstly, how many hours you're working is nobody's business. I don't even know that it's your boss's business, if you're getting your agreed work done. And secondly, how many hours someone is working, they have very little to do with their contracted hours. I know plenty of people with nine to five jobs who work from seven till eight at night. I don't mean seven. I mean, 7am. You got it. Similarly, my boyfriend and I are of the opinion that our housemate makes roughly 500 quid an hour based on the fact that every time I look over at him, he's doing creative writing, thank you to games, not physically at his workstation, and definitely not writing code, which is what he's paid to do. So how many hours of work are you doing? Like? How long is a piece of string? How long is your nose? You nosey Parker. Enough? is probably the answer to that one, Rachel. How many hours you're working Rachel? Enough. And enough with all these stupid questions.

03:39

I mean, you probably can't say that last bit. But yeah, that question just like poked something in me is, you know, up there, with a long list of insensitive questions to ask someone with a chronic illness like Long COVID.

03:58

So yeah, hang in there. Rachel, you're probably working over time. If you also take into consideration the hours you spend worrying and thinking about work.

04:11

Partly because of because of questions like this.

04:15

But yeah, I think ‘enough’ is the answer to that one.

04:19

Okay, so moving on, then to the reason for this episode, and this is going to be short. Normally, I'm going to record a whole episode by myself. I think I have a tendency to ramble too much to really go it alone. And Hannah, Hannah keeps me in check. The reason for this episode is that two weeks ago, I had a major diagnosis that has dramatically improved my long COVID symptoms, and it just didn't seem appropriate to hold it back. 

So two weeks ago, maybe not. A month ago, maybe I I had gotten to a point in my lung COVID, as I spoke about last week where it was tolerable, and things had kind of calmed down enough for me to really notice what was going wrong in my body. And one symptom of mine on COVID That just hadn't changed at all, was my breathlessness. Like the fatigue was slowly improving. The brain fog was slowly improving, but my breathlessness was persistent. And so I'm incredibly lucky to have private health care. And so I had also kind of built up enough resilience to try again, with my GP. I, I'm sure like many people with long COVID have kind of developed a strong dislike of the GP, mostly from just, I guess, having been repeatedly told that they have no idea what's wrong with me and no suggestions. Anyway, I decided to ask my GP for a referral to see a respiratory consultant, and just explained like I'm on private health care, so please make this referral. Now, they didn't even ask to see me, I just got I like typed in an email requesting the referral. And they just responded with an email being like, Sure, here you go. I think their file didn't even have my name on it.

06:27

Anyway, like the privileged princess that I am, I then got a private appointment to see a respiratory consultant, who I would say within like five minutes, said it's probably asthma. And then 10 minutes later, after having done the very basic asthma test, you kind of blow into a tube into like a machine, I think, and it levels the amount of nitrous oxide I want to see, I can't remember, it measures the amount of something in your out breath that tells you how inflamed your airways are. Anyway, she diagnosed me with asthma in about 10 minutes, explained that it has been known for a while that long COVID triggers asthma.

07:17

And prescribe me with a steroid inhaler. And then referred me to see a physio because she kind of explained the two years of untreated asthma has caused like deformation of the muscles around my kind of breathing space, I guess chest is the word for that. And I have a really weird, like breathing structure, I use the wrong muscles basically. So I need physio for that. Anyway,

07:49

I have had, I've been on this inhaler for about two weeks. And I have instantly noticed a huge increase in my energy.

08:03

It was almost like from the first day of using it. Iwas just breathing better. And then my fatigue improved. And here's the thing. I

08:16

I've been into work, I think every day but one for the last two weeks, which is something you know that I can't remember doing. I definitely haven't done that in a year. One day I even went into work came home and did some gentle yoga.

08:35

Yeah, it's been crazy. I remember, I think was last week, I went to see the Taylor Swift errors. Video concert in the cinema was not one of the lucky people who got tickets for that. And saw it in the cinema. And obviously when shaken off, came set up, danced around, couldn't I couldn't help myself. And then I started feeling the fatigue set and I started feeling really dizzy. My breathing was going on. I was thinking Ah, like this is the feeling that used to make me go home, reached into my bag, took out my inhaler, puf puf puf

09:11

And I was back boogeying in my chair and on my feet for karma, which which was the last song

09:20

and it's weird, right? I don't I wasn't sure if I should even mention this because maybe it's a temporary high maybe it's a placebo. These last two weeks have been like a holiday from a debilitating fatigue. I haven't really had to miss that much.

09:50

I haven't tried to exercising. And I haven't you know I'm still getting the lift and stuff at work but

10:00

It's been huge. And so I just thought I'd put it out there. Because I didn't know that long COVID can trigger asthma. So if you're struggling with breathlessness do go to your GP. And here's the thing, right? I have gone to my GP about breathlessness think I've been to my GP four times in about two years for long COVID, which, I guess kind of shows my lack of resilience. But the first time I went and said, You know, I think I have lung COVID It's been six months, I'm not better. I'm exhausted all the time. And I my breathing is terrible. I was just given a chest X ray sent away. I think I had a chest X ray and an ECG. There was no no one called me. And I remember calling the doctors a week later to say, hey, you know, I went to see my GP explained these symptoms. Can I please have the results of my chest X ray and my ECG, and I remember the nurse on the phone just said, everything's normal.

11:06

And that crushed me. It absolutely crushed me. And I know that lots of people will resonate with that, right of having gone to see a GP for something, and being told everything to normal.

11:24

And I guess that's why it took you know, maybe a year and a half for me to rebuild my confidence. Go back and be like, No, there is something wrong with my lungs. I know my body. Restore me to someone who knows this part of the body? Really, really well.

11:46

So yeah, I just thought I'd put that out there. If you're struggling with breathlessness. Ask your GP about an asthma test. Don't just settle for an x ray. Because you might be lucky, you might be like me, right? Asthma may be one part of the COVID puzzle. And getting it right might improve your quality of life.

12:10

Yeah, and even if this these last two weeks are just a holiday. I have really enjoyed it. I've really enjoyed it. It's been really nice these last few weeks. If you've solved any pieces of your long COVID puzzle, please let us know. We'd love to hear from you. You can get in touch by sending an email to boundedenergy@gmail.com or contact us through Instagram at bounded energy. Twitter I've kind of stopped using since Elon Musk. So yeah, that's it for me. I'm not sure when Hannah and I will be back probably in a couple of weeks. We already have an episode in the pipeline.

12:50

All the best to everybody who's living with this and lots of love