A short update from Katya & two new recommendations
Visible band & app:
https://www.makevisible.com/
Breathwrks app:
https://www.breathwrk.com/
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
A short update from Katya & two new recommendations
Visible band & app:
https://www.makevisible.com/
Breathwrks app:
https://www.breathwrk.com/
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
00:01
I'm having a good day.
00:06
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.
00:16
Hey there, it's just me today, I wanted to share an update on how I'm doing. I hope this doesn't seem too self indulgent. But we have 100 or so regular listeners to the podcast, many of whom I suspect are also living with this illness or something similar. And you've invested quite some time in following mine and Hannah's story. And so I assumed, hopefully not too arrogantly that you might be interested in a quick update, while waiting for the next episode to come up. I think that'll probably be in about a month's time. I have a holiday. And then Hannah and I are just, we're just slow. It's life in the slow lane. And it teaches you patience, as I'm sure you're all discovering. So I wanted to share that this last month for me has been challenging. It had been a smooth path upwards in terms of my long COVID process. You know, since since really August of last year, I had just been slowly making progress. And then around a month ago, I made the rather dreadful decision to get three vaccinations in one day, for an upcoming trip to Africa.
01:30
I had the thought on the day of the vaccines of like, maybe this isn't such a good idea, you know, putting three different types of vaccines in our body that already seems to have a pretty haywire immune response. Maybe that's not the best idea. Maybe I should spread these out. Maybe I do better with typhoid than the typhoid vaccine anyway, and I have always been bold, and still am. Now, I thought, I'm sure it'll be fine. I should just say the nurse did ask me if I was feeling okay that day. But I'd already disclosed long COVID When I booked the appointment, and being someone who, if she ever stops and thinks about it for more than 10 seconds, pretty much always feels at least a little bit sick. I just said, Yeah, I'm fine. I think everyone with this type of chronic illness would understand that these simple or seemingly simple questions. You know, like, are you feeling well, are a total minefield, when you always feel sick? I can imagine that the conversation, you know, are you feeling well? No, I'm not feeling well. Okay. Well, you need to come back for your vaccines when you feel well. I can't do that, I'm afraid. Oh, I know. Because it will be too late. I've missed my flight. I've missed the holiday. And I'll probably have missed, you know, the next couple of years. To be honest, if the last couple of years is anything to go by. Well, to me it's like the nausea is bad. But it's not so bad that I can't have a conversation and even a laugh. So yeah, on that day, I said I was feeling well, when I got the vaccine
03:10
when I got the vaccines because I was feeling well, within my own kind of like, locked up sense of what feeling well means. Anyway, within two days of the vaccines, I experienced a crushing fatigue and nausea and sort of a full body agony. I had to take a week off work and I've since returned to working from home.
03:33
Since then, I've spent pretty much 80% of my time in my flat. And my walking has been very limited. Like I've done the occasional 10 minutes to the end of the road and back. But yeah, I've had to be super, super careful.
03:49
Another thing that I've noticed it's my anxiety has just shot through the roof. I have no I've no idea why. I have some ideas, but I'm just so stressed. I don't know if it's the long COVID or the increased time I've been spending alone since this crash. But it's like my nervous system has just gone haywire. I went down the lift to get my post. And I live in a busy apartment building. And when I arrived at the bottom floor to get out there was someone waiting there when the doors opened, and I let out a small scream and dropped my keys. And it was it was so bizarre because it's like I've never assumed that I would be the only person who uses this left. There are like 100 people in my building. And I'm just so on edge like I noticed that even my my partner does his little night coughs in like an evening when he's falling asleep. Every time it happens. My heart stops. I'm just really on edge. Yeah, and like I've been having really terrible night sweats. They wake me up and I have to like lift up the cover to kind of air it out. Like this is maybe too much information but this is like
Katya S 05:00
A genuine symptom that I'm feeling, I feel like I wake up with puddles on me. And this for me is not normal. The symptoms are what happens when my long COVID is like, really, really quite bad.
Katya S 05:13
Anyway, that's just the truth about how I'm doing since I got vaccinated just over a month ago, someone asked me how I was doing the other day. And I said, truthfully, that I'm about 60%, you know, I'm holding down a job, I'm still living in a warm and lovely fat, my friends are all around me. And I have loads of exciting things lined up. And it's true. I'm getting married in August, and I'm going to Namibia, in a few weeks on a holiday that my beloved friend planned to be doable. Whether or not my long COVID is flaring. I think that I've purchased valid tickets for Taylor Swift in Hamburg in July, and two of my favorite people are going to have a baby soon. So while at the moment, my long COVID symptoms are pretty horrendous. There's so much for me to hold on to.
Katya S 06:03
In some ways, I just say that this is actually the best crash I've ever had. It took only one week, this time for me to recognize what was happening and make arrangements at work to change to working from home. And I only had two days of uncontrollable sobbing in my flat before I invited a friend over for a cup of tea, which is actually pretty good. That's actually pretty good, because I have gone longer before. And one of the nice things that I currently have over 10 hours of conversation with Hannah from this podcast on my computer to listen to as I hunker down and wait for it to pass. And yet my physical symptoms are so similar to those of my first crash. But just in no way have I felt for a second that I'm back where I was in September 2021. You know, when I first experienced long COVID symptoms, and came to the realization that I had this bizarre illness, I was just in the depths of despair. And things are so different this time, like two and a half years on, because I know that it's a cycle. I know I have good days again, I know that I made progress before and I'll do so again. And I also know that when things are better, and I'm just about used to that, I'll get a cold or another vaccine, and I'll have another day. And I might even be back here complaining about it.
Katya S 07:27
I should probably add that I am absolutely not anti vaccine. I'm never gonna get three and one day again, I think that was probably too much of a good thing. Heck, if I've learned anything from this is that vaccines are not like ice cream, you know, like, no one's out there, like, oh, I have one of each, please. But annual flu shots and COVID boosters have never caused any problems for me so far. I'm gonna continue to get these.
Katya S 07:55
Okay, I have two recommendations to listeners. So there are two things I've been using to help get me through this dip. The first is something called Visible, it's a heart monitor that you wear on your arm. And it comes with an app that helps manage long COVID or chronic fatigue, or other illnesses that are managed by pacing. It tracks your activity levels, and then tells you when you're overdoing it and need to slow down. And then after a while it gives you a pacing budget to try to stay in. Anyway, this is already explained to me why I've been logging off work and crashing out on the sofa. On days when I've been seated the whole time, you know, I'd look off at the end of the day and be like, but I literally I spent the whole day in a two meter squared area. How am I exhausted? Well, it turns out that spoken meetings are always in over exertion for me at the moment, I'm basically unable to keep my heart rate below 150 beats per minute during these. I think it's probably the best thing about visible because I feel like it still seems impossible to me that taking a walk call could count as over exertion. But when I see my heart rate rocket and stay in that place for the same 30 minutes as one of my meetings, it just can't be denied. And so knowing this, I was able to deal with this, right? I could do something. So I did what anyone would do. I called my boss and told him that I just couldn't have any more work meetings. And he said, Okay, Katya, but you're fired.
Katya S 09:37
That's a joke. In reality, I've been spacing my meetings out and doing breathing exercises during meetings. Whenever I don't have to speak. I basically put my phone on silent in front of my screen and use a breathing app to keep my heart rate and stress down during these calls. And it really works. Today I had my first good day in a while, it gives you like a morning check in, and it checks your vitals and kind of tells you where you're at and tells you you know, you're not doing great today, you need to take extra care not over exert. Or today it says you're doing great, like, go for that run. You've been planning, now's the time to buy that trampoline. No, I'm kidding. It says bodily stability, five, your body's signals are stable, and one or more so a trending positively, keep pacing yourself. And I saw that and thought, great. Like, now I can finally record the podcast episode I've been planning.
Katya S 10:35
So yeah, visible isn't cheap. It's 180 pounds for the wearable. And there's also a monthly fee, I think. But I couldn't think of a company that I'd rather support. The founder himself has long COVID and made this as a way to help visualize pacing, because I think as anybody, you know, the experience knows, pacing is the most difficult thing in the entire world. I feel like it requires the self awareness of the Dalai Lama, and the discipline of a professional athlete, and like a trader's life's experience worth of risk assessment, you kind of have to project manage your hours, weeks, days, months.
Katya S 11:29
It's just like, Oh, my God, you know, I taught a level maths and further maths to kids who really didn't want to learn. And like that was hard. But this is, pacing is the hardest thing I've ever done. So yeah, I would give I give visible and absolute five stars 100% recommend this, my only feedback back would be and I'm going to share this actually is could the device be made a little bit prettier, because the current product has a thick black Velcro strap and a black monitor. And I just feel like I want to look good. While I'm pacing, you know, can we have like an elegant gold chain or a thin pink satin or silk band like I would pay extra for that.
12:14
And then the only other thing I wanted to recommend is an app called breath work, which I think I paid 40 pounds upfront for the year subscription. But this is the app I've been using to bring my heart rate down when visible tells me it's up. It's got a catalogue of guided breathwork activities I use I use it throughout the day, because you can set the sessions for a short time as you'd like to as long a time. So when I'm working and I'm in a meeting lately, I've been having it on silent. And whenever I'm not speaking, I just watched the screen and use it to slow my breathing and just calm down. So yeah, two recommendations visible and breath work. That's it from me, Hannah and I will be back with another episode soon. But in the meantime, if you want to rant if you want to talk to somebody else who's going through this, I love hearing from our listeners and our email address is bounded energy@gmail.com Lots of love and all the best