Welcome to the long COVID podcast with me, Jackie Baxter. I'm really excited to bring you today's episode. Please check out the podcast website, longCOVID podcast.com, where there's a collection of resources, as well as a link to the Facebook support group. If you're able to please consider supporting the show is in the link in the show notes. If social media is your thing, you can follow me on Facebook @LongCOVIDpodcast, or on Twitter and Instagram, both @longCOVIDpod. I'm really keen to hear from you. If there's anyone you'd like to hear on the podcast, or if you've got any other feedback, please do get in touch through any of the social media channels, or email longCOVIDpodcast@gmail.com. I really hope you enjoyed this episode. So here we go.
So this is – hopefully – a relatively short episode where I thought I’d do a bit of a recap of the last 6 months or so for me. I feel like I’ve learned quite a lot in this time but also as we approach the end of the year it does often tend to be a time for reflection. And I can hardly believe that we’re nearly done with 2022. Not even sure how that happened!
So I guess as always, it’s worth me saying that I’m not a medical professional – I’m just sharing what has helped me, and it’s absolutely not advice – so please do your own research and speak with your own doctors.
I also think it’s recently important to remember that everyone’s experience is gonna be different. So what works for me is not necessarily gonna work for you. My symptoms might look different to yours. My experiences, what I’ve worked through, what has helped me. So when we’re taking ideas from other people for things to try, I think that’s really important to remember. But also that everyone’s journey is different. And also that looking at someone else and saying – well why are they recovering and I’m not? What have they got that I haven’t? I see recovery stories and I say – well, why have they recovered and I’m not there? And I think that’s really unhelpful, as natural as it is and as much as I do it, often. So I’m not quite sure what I’m trying to say here, but I think trying not to judge ourselves too much, and not to judge others too much. And not to try to compare things too much. Maybe.
So I’ll maybe start with the thing that has probably helped me the most. Which has to be the cold water swimming. There’s a lot of evidence behind this being beneficial for all types of symptoms & illnesses. The cold water will reduce inflammation, help to regulate our Autonomic Nervous Systems, it can provide pain relief and it’s hugely beneficial for mental health too.
And, I’m not here to sound like an advert for Tourism in Scotland – and I do appreciate that I am lucky to live in a part of the world where I have easy access to places where I can swim. But Loch Ness has definitely become my happy place. If I’m physically able to get there, which isn’t all the time, but if I am, getting in the water will always make me feel better, even if it’s a short dunk. It’s absolutely amazing.
I started getting in the cold water back at the end of March this year, and my first “swim” was about a minute long. Probably fully in the water for a few seconds. But since then I’ve been more confident and comfortable. During the summer I was able to stay in for maybe up to 30 minutes on some days. And now as the temperatures are dropping quite drastically I’m still going – and hoping to continue through the winter, but I’m definitely staying in a lot less time now! I know it won’t work for everyone, but it’s been huge for me. It clears my head. It clears all the other stuff away and it just gives me an energy boost. Unfortunately the energy boost doesn’t last but energy for a bit is better than none at all!
Part of me wished I’d started sooner, but I think it had to happen in its own time – I also needed to work on my breathing first because if I’d started before I’d sorted my breathing I would have hyperventilated and that wouldn’t have been a very good idea when you’re going into water obviously, so that needed to happen first!
After speaking to Adrian and Leanne when I recorded episode 49 I was inspired to join a local wild swimming group – these are wonderful people who sometimes provide company. I think I often forget how isolated I’ve become, it’s almost like I’d normalised it. And being able to have a few new friends I could socialise with but in a way that felt safe for me was important. They didn’t know me before Covid so don’t compare me now to how I was before. They don’t judge me when I’m completely unreliable. They all have their own reasons for wanting to swim and it has been really wonderful.
So moving away from things that make me freezing - I’ve been seeing a Counsellor for around a year now. I was kind of resistant to this initially but she’s been absolutely amazing. Partly she is someone who is literally paid to deal with my shit – so it takes the pressure off my partner a bit. But she’s also been helpful at questioning me and helping me to look at things in different ways. Sometimes helping me to see things more clearly, or even helping me find a way through the maze of fog that my world often seems to be now. She often drives me crazy, which I see as a good thing. And I’d imagine I drive her nuts as well!
Taking a quick diversion back to the podcast for a moment – I’ve immensely enjoyed every single interview I’ve done for the podcast. Every single person who has been kind enough to give up their time and be a guest has taught me something. But obviously there are some episodes that for whatever reason made an even bigger impact on me, and one of those was Dr Boon Lim. He had many many useful tips which I put into practise, but a few other things really stuck with me.
One of those things was the idea of forgiveness. Now – bear with me. I have definitely felt like I wanted to blame someone for the situation I find myself in. Anyone would do – government, schools, public health, doctors, my partner and probably most of all myself. I wanted to channel my anger into blaming somebody else. And it’s completely understandable, right? I’m sure many others feel the same, maybe you do? But what Dr Boon Lim made me realise, was that maybe it was understandable, but it certainly wasn’t helpful. All this anger boiling around inside me was triggering and making me feel worse. So now, I try to embody him and be more forgiving. Forgiving of a doctor who can’t help, or a family member who says something unhelpful, or whatever. I can promise you that I don’t manage it all the time. But it’s getting easier. And I think it’s helping.
In fact there are quite a few things that I’ve heard from different people that have really resonated with me. And they get stuck on a post-it note as a reminder. So I’ve got a really colourful wall in front of me. It does help.
So what else have I tried – Vedicinals – I took advantage of their offer earlier in the year and gave it a go. I did a blog post detailing my experiences with this so I’m not going to ramble here – I’ll put the link in the show notes. Long story short – nothing spectacular, but it did help clean my gut out a load. Which I think was a good thing.
So then I went down another rabbit hole. Now, anyone who knows me, or has listened to me before will know that I crave answers. I have to know WHY. I literally can’t stop thinking and searching until I know something. And this is definitely a good thing in some ways, but could there also be a not so good side to it?
Someone mentioned food intolerances and that you can test for them. “Oh but I don’t react badly to foods” I said. I was told that I might not realise. Anyway – it was an opportunity for answers, so why not? I sent off my sample and waited. I’ll drop a link to the test I did in the show notes (although I think it will probably only work if you’re in the UK). I was so surprised to get my results which told me I had a LOT of intolerances.
And so began my diet of cutting out cows milk, eggs, wheat and a few other things that were particularly annoying. The first few weeks were torture. I felt awful. I hated soya. I couldn’t have easy meals. Everything had to be cooked from scratch. But it did get easier. And eventually my 12 weeks were up. Did I feel any different? No not really. Of course it’s hard to tell with the rollercoaster of long covid symptoms. Perhaps my gut felt very slightly better? But nothing really noticeable.
So I thought – fabulous – let’s have a nice cup of tea with milk. Probably the thing I had missed the most. Which is horribly British. But Oh. My. Goodness. The carnage that the milk caused? Unlike anything I’d ever felt. Had I made things worse by searching for answers? Or maybe I had just gone in a bit to fast and hard. The jury is still out on that one.
Part of me is kicking myself for putting myself through this – but on the other hand – what if it had helped? How could I not try it?
Something else I’ve found useful is trying to find things that bring me joy. Back in May I realised that although I might be feeling very slightly better, it was because I wasn’t doing anything. I was existing. There was nothing that brought me joy. I was overwhelmed by all these things I was supposed to be doing because they were good for me – and they were good for me. They were helping. But at the expense of anything fun. I was putting in the work, but I felt like I didn’t really have anything to live for.
So one day I said - sod it. I’m going for a slightly longer walk to a nice place and I don’t care. Obviously it was a day where I was feeling semi-reasonable. If it had been a sofa day then I wouldn’t have been in a position to say bollocks to long covid and get outside. But I did. And it was wonderful, and do you know what? I felt ok. I managed it – not a long walk like I’d have done before Covid, nowhere near, but a longer walk than I would have thought I could do.
Now I’m not necessarily suggesting this as a good idea. Of course we need to be mindful of pacing, and pushing through symptoms – we know that’s not a good idea. Also movement and exercise in recovery has to be managed very carefully and will differ from person to person. Sensible movement for some people might be stretches in bed, for others a short walk or cycle. It’s gonna be totally personal.
But there’s something about knowing that on some days, when I felt semi-reasonable, I could do some things some of the time. It didn’t mean I was better, it didn’t mean everything was ok. But it was kind of a little chink of daylight.
And I’m also not saying that our symptoms are caused by worry or anxiety. Because they’re not. We know that. But, worry and fear – and lots of other emotions can make things worse. So if I stop worrying, my symptoms aren’t gonna automatically disappear – that would be wonderful, right? But I’m trying to recognise where I am worrying about things and maybe exacerbating other stuff.
And that brings me onto my Symptom escalation plan, which sounds completely ridiculous doesn’t it. But I’ve found it useful. We are probably all getting better at recognising triggers – I know I am. And I know that the first thing for me I’ll probably notice is my breathing. And if that starts feeling like it’s not right – then that’s when I need to go for the Symptom escalation plan, which is a list of things that I know will help me feel better. Some regulation exercises that I’ve learned, trying to focus on deep breathing, yoga nidra, a hot chocolate, my weighted blanket, humming, terrible 80s tunes – don’t judge me! All of these things help me – some of them may work for you, or maybe you have your own list. My list is stuck on my wall next to my post-its. So if I notice things starting to feel not so good, then I try to tap into my list. It’s ready and waiting so I don’t have to think too hard. And often (definitely not always, but often) it can stop a bad hour turning into a bad day. Or a bad day into a bad week. Sometimes it’s anything that can help, right?
I also know, coming out of an absolutely appallingly awful week, that sometimes it’s so bad that none of these things help. That we just need to maybe let our bodies shut down, go into hibernation in order to protect us from whatever is attacking it. It’s frustrating and horrible but sort of riding it out as best we can is sometimes all that we can do. And certainly for me, when that does happen, I want to pile all of the blame and frustration on top of myself. And again that’s a very natural thing to do I think, but again, it's not helpful. And I do try no to do that. Emphasis on ”try”
Going back to Dr Boon Lim – something else he talked about was beliefs. I very much think that we have to believe that we’ll get better. Dr Bagnell said recently – (and I paraphrase) we believe that we can get better until proved otherwise. If we don’t believe then we stop trying, we stop doing the things that do help. We stop exploring. I lose hope often. Something that’s helpful to me is recovery stories. They are out there – there are several on the podcast. People do recover. I fully plan to. Until proved otherwise.
This experience over the last 2 and a half years (and counting) has opened my eyes to a lot of things. Some wonderful things and some terrible things. I’ve learned some lessons which I’ll probably be grateful for one day (but I think it may be a bit too soon at the moment). I’ve met some truly wonderful people. And I guess this has maybe taught me to really try to be open-minded about everything – why do I believe what I believe? Why am I resistant to trying something? In actual fact, the things that have been the most helpful to me were actually the things that I would have poo-pooed to start with.
Dr Boon Lim again - “Don’t let what you cannot do prevent you from doing what you can”
I think we also need to talk about safety – it’s a big thing for me – the need to feel safe. This is important in our recovery. If we don’t feel safe then our bodies are going to stay in fight or flight mode because they sense danger. This makes sense, right? But how are we supposed to feel safe when we are surrounded by so much danger? I’m not even just talking Covid here – just a quick flick through the news is enough to make us feel a very long way from safe. And sometimes I certainly feel that my brain will catastrophise even worse as well – there’s so much bad already, so there’ll be more coming. And more and more and more. Which is not a thing that is gonna make us feel safe. I can feel like my nervous system is getting revved up just talking about it now.
And we also have this cause and effect – we know “what happened last time” so it’ll be just as bad again. Such and such bad thing happened to this other person – so it’s going to be just as bad for me. When we have spent a period of time – I’m looking down the barrel of around 33 months now I think – when we have had this as our reality, it would seem silly to assume that everything is going to be fine if I try to walk a bit further, or risk mixing with people, or whatever it is. So it’s this weird situation where we have to learn from our experiences but also try not to be held back by them. I’ll come back to Dr Boon Lim yet again – another post-it on my wall. “Don’t let your history define who you are today.” That one is most definitely still work in progress for me.
So it’s a challenge.
So I think this is where things like Vagus nerve exercises and learning techniques to help us calm our nervous systems can be really helpful. But like everything, they take time, effort and patience. Not something that we have a whole load of when we aren’t feeling safe. And when we’re feeling ill and frustrated and all those other things we’re feeling. So we end up with this kind of paradox.
Something that is also designed to help with the feeling of safety, as well as regulating our nervous systems is the Safe & Sound Protocol, or SSP. I’m not gonna talk a whole load about this just now because it’s something I’m still working through – but I can recommend looking it up to see if it’s something that might work for you. There’s a whole load of really fascinating science behind it and I’m hoping to do an episode or segment on it in the future, but I’m also happy to answer any questions you might have so feel free to message me.
So I think over the last 6 months I have seen improvement, which is wonderful. But I’ve also seen some of the darkest days – or maybe what felt like the darkest days. There’s something about improvement making you realise how much further you have to go. And that can be hard. And also seeing improvement and then hitting a big crash seemingly out of nowhere. That happened to me in July and it was devastating. It completely pulled the rug out from under me and made me doubt everything. So although physically things were improving again after a few weeks, mentally it knocked me back a lot. So we mustn’t discount mental health and how important it is. I’m very lucky to have a supportive partner, who may not always do or say the right things but I do know he’s always there for me. And my counsellor who really doesn’t deserve some of the crap I throw at her. So the power of support – wherever you get it – is so important. And never feel bad about reaching out and asking for help.
So I think that although I have seen improvement physically in the last 6 months, I think that that’s maybe “unmasked” a lot of other stuff that I have going on that I also need to work through.
And I think if I’d recorded this last week, I probably would have said quite a lot of different stuff, because it was such an awful week. I mean that’s partly the reason there was no episode last week, because I just didn’t feel up to doing it. And that has to be ok – and it has to be ok for me as well, which it wasn’t. I blamed myself and I was really upset.
I think we have to acknowledge that there are 2 sides to it. My physical symptoms aren’t all gone by any means, but they are improved. But as a result of that, I’ve got a huge amount of mental stuff. And that’s just as important as the physical stuff. And that’s not that Long Covid is psychological, because its not. But I think there is a huge mental impact of it, that’s as a result of the illness, it’s not causing the illness. But it also can feed back in and exacerbate it.
When I’m interviewing other people, before finishing the interview I’ll usually ask them if there’s anything else they’d like to add, or if they’ve any final bits of advice. So I’ll ask myself the same question here.
I’m not sure if I’m really fit to be giving advice – or maybe that’s me not knowing my own self worth again, which is a whole topic I didn’t even touch on! But, what I do have is some experience of this illness, from my perspective. So my top 3 things that have helped me:
Number one - breathing. Fixing my breathing pattern initially. Then really understanding the power of breath. I’ve done lots of interviews with wonderful breathing people and I’d really recommend listening to some of them because they can say it much better than me.
Number 2 – Yoga Nidra and the power of real deep rest. I thought that reading a book was resting. But it really isn’t. I have a brain like a hamster wheel. It goes round and round and round. It never stops. My counsellor once described it as both my greatest strength and my greatest weakness. Yoga Nidra or other guided meditations are about the only thing that allow it to shut down. It wasn’t easy – I found the meditations really hard going to begin with, but I stuck with it and they do really help a lot of the time.
And number 3 – I’ve spoken a lot about it already – cold water. Or even better, cold water, nature and a few friends. Even better if Nessie the Loch Ness monster comes out to say hi.
And I think if I could add a number 4 – which I can, because lets face it, I can say what I want! I would say, keep going. Believe. Don’t give up. Listen to your body. Get well, but do it at your own pace and in your own time, and only you will know what that is. And don’t let anyone else tell you otherwise.
Thank you so much to all of my guests, and to you for listening. I hope you've enjoyed it, or at least found it useful. The long COVID podcast is entirely self produced and self funded. I'm doing all of this myself. If you're able to please go to buymeacoffee.com/longCOVIDpod to help me cover the costs of hosting podcast. Please look out for the next episode of the long COVID podcast. It's available on all the usual podcast hosting things and doget in touch, I'd love to hear from you.