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Changes: Kate Weinberg
The audio version of this episode is available here.
Annie [00:00:03] Hello, everyone. Welcome to Changes. My name is Annie Macmanus. Hope you're doing well, I am talking to you, actually having just come back from a podcast chat, one of those panel things as part of The London Podcast Show. You'll hear more about that next week when we bring you our first ever Changes live podcast from The London Podcast Show. But I also took part in this panel with the wonderful Fi Glover and Jane Garvey, the two ladies who do the very successful Fortunately podcast for the BBC. And Fi asked me, what was my matrix of success when it comes to The Changes Podcast and I've never been asked that question before and I thought it was a really useful thing to think about. And what I said at the time was that I want to allow and give space for people to change their lives in terms of how they think or how they live their lives, as a result of listening to these conversations. And that's happened a few times. People have changed their minds about things. They have changed directions in their lives. They've been given inspiration to change jobs or change their relationships or change certain situations they find themselves in. A very extreme version of that, for instance, is when I did the episode with my husband T, and he talked about his adult diagnosis of ADHD. I'm still getting messages from Changes listeners months later to say that they are going to get diagnosed for ADHD, and they have more empathy towards their partner who is ADHD. So, it's that idea of kind of listening to an episode and it helping to spark something that then leads to a change of some sort. I really hope that this episode does that same thing. I've wanted to do an episode with regards to long COVID for a while now on Changes, and I'm so happy to be able to bring you this. You don't need to be reminded that one of the biggest changes we've all been through since 2020 is living through a pandemic. At the time of releasing this episode, there have been over 22.3 million confirmed cases of coronavirus in the UK and almost 180,000 deaths. Now cases are falling, but it's estimated that one in 50 people in the UK currently have COVID and some of these people develop what is called long COVID. So, an early estimate from The Office for National Statistics stated that between 3 and 12% of people who catch COVID will still have symptoms 12 weeks after their initial infection. And that 1.3 million people in the UK were experiencing long COVID symptoms as of January of this year... I'm sure there's many more now. Of those 1.3 million, more than 4 in 10, so 42%, were experiencing long COVID symptoms more than a year after their first suspected infection. Almost two thirds said their symptoms had reduced their ability to carry out daily activities. So we're going to put a link in the show notes to the website providing these statistics, which also gives further information about symptoms and tips. But I want to get the real human experience behind the statistics, and this is where this week's episode comes in. Kate Weinberg is a writer and journalist. Her first novel, The Truants, which is out now, was a New York Times top ten crime novel of 2020 and an Observer Book of the Year. And crucially for this conversation, Kate has also written in great detail about her experience of suffering from long COVID. Kate is not an expert or an authority on long COVID, and everyone's experience is different. The first port of call for anyone with COVID symptoms should be your GP. However, what you will hear is Kate speaking so articulately and compellingly of her personal experience and all the research she's done as a result of having long COVID. Now, interestingly, speaking to Kate, it's clear that many of the things she has felt and learnt along the way also apply to lots of long term illnesses. So if you think this could help someone suffering with long COVID or otherwise, please do pass it on. I started by getting Kate to list the symptoms she's experienced from long COVID and the many things she has tried to do in order to get better.
Kate [00:04:21] The symptoms? Body pain, the sort of body aches were one of the main symptoms. I felt like I was wearing this really heavy suit of armour, and that was incredibly painful. Headaches, dizziness, breathlessness, nausea, brain fog. Fatigue is such a bad word. It drives me crazy because fatigue doesn't come close to this sort of poisoned feeling that you get in your system. It literally feels like you're just flooded with toxins and this very, very drained muscle weakness, which is sometimes bizarrely accompanied by a sort of agitation. So you're feeling agitated, but you're feeling profoundly weak, which is a sort of hell to be in and hard to describe. And I'm sure I've missed a ton out, but those were the sort of primary- primary symptoms for me. In terms of the things that I tried, wow, a whole Holland and Barrett shop worth of supplements. Vitamin D, C, B, B3, Quercetin, Resveratrol, Magnesium, Zinc, a few more supplements, Chinese herbal medicine, yoga, acupuncture, reflexology, steroids, LDN, Nicotinic acid is the B3 flush effect, which is a really weird one, by the way. You can't just use normal B3, you have to use the flush effect one and it makes you go bright red when you, when you take it, which is actually something to do with your vessels dilating. And for me particularly, I think it was helpful because I had a very big circulatory aspect to it. But yeah, B3 which is also called Nicotinic acid, Ivermectin, Iodine. I just threw everything at it. Whenever anyone said do this, I was just totally gung ho and did it. Nutritionally, I was put on the keto diet, high protein diet or an anti-inflammatory diet, a low histamine diet. One of the schools of thought is that your mast cells have been activated and that you're having a sort of hyperallergic response. And there's this protocol of antihistamines that you can take, and I'm still on three different antihistamines a day. Some of these things I feel like- part of acknowledging that I'm better is just, I've slowed them down, but take less Nicotinic acid. Wean myself off these things which feel like, yikes, what will happen if I do? But I know I'm well. So, they're sort of mental crutches now.
Annie [00:06:56] Can you start, Kate, by telling us how you are now? I mean, it's been about 18 months since you started feeling the effects of long COVID, right?
Kate [00:07:04] That's right, and I'm going to tell you that I am completely better-.
Annie [00:07:08] WHAAAAT!
Kate [00:07:08] *Laughs*.
Annie [00:07:08] No but that's amazing!
Kate [00:07:08] It is amazing. But even as I say it, I feel quite nervous saying it because the whole experience of long COVID is this sort of gaslighting experience where you can't quite trust your own body or your mind. So even as I say I'm better and I have been solidly better for the last three months, there's a little bit of my brain splitting off and saying, are you jinxing something? Are you deluding yourself again? Because there have been these sort of moments of, you know, few days of remission or even a couple of weeks of remission, and then things have rolled back. I gave myself a little target of three months, that once I got to three months, I could say, 'yes, I am better'. Because I really feel that a lot of it is also about reassuming an identity of a well person. So, while I want to stress straightaway that long COVID is not at all something that starts in the mind, I think, you know, the mind and body are very connected and you have to be extremely careful about your relationship mentally to your own conditional sickness.
Annie [00:08:17] Well, I'm so happy that you are well and feeling well for that long. I mean, I know and kind of have read, the struggle that it's been and I'm sure a lot of people will relate to that. Just how wonderful it is to be able to say that you're well, after all of this uncertainty and all of this work that you've had to do. I know you've learnt so much, Kate, and you've had to out of, you know, there'd be no choice. You've had to go and explore and do this research and have this big journey in terms of discovering long COVID, but give me a picture of what you know about long COVID now. Just an overall thing for people who are coming into this blind and they've kind of heard of it, but they don't really know what the hell it is. Can you help?
Kate [00:08:57] I can help partially because there's still only so much that anyone understands about long COVID.
Annie [00:09:03] Right.
Kate [00:09:03] I mean, I'll speak very much from my experience and I'll speak a bit from all the things that I've learnt. But one thing that long COVID isn't is just the lingering after effects of COVID itself. Long COVID seems to be a response to the virus, which is an overactive immune system, essentially, where the body starts- gets itself in a state of permanent threat and starts attacking, in my case, certainly pre-existing weak areas. For some people there are symptoms that have come out of the blue. They've never had any problems with their heart and suddenly there are issues with their heart too. But for me, I have noticed that it zones in on achilles heels, I suppose, already in my system. But that's what it is, it's a condition where some kind of cytokine storm seems to be happening in your body like it does in the acute stage of the virus. But it persuades your body that there's a problem and your body starts sort of, misbehaving and behaving in this very disorganised fashion. And there are lots of theories about why that's happening and who that's happening to. It seems to me that the most persuasive one is this autoimmune issue, this hyperactive immune system where, you know, your body, as I said, is in this permanent state of panic. It can't let itself rest and it doesn't really have anything to attack anymore, so it starts attacking itself. So for me, it's very, very caught up with the nervous system and that is something that's very- that's been established, but whether that's because of some kind of persistence of virus in the body, some kind of debris left over, they're not quite sure the doctors are still trying to suss that out.
Annie [00:10:51] And is there an accepted, government approved, overview of COVID? There doesn't seem to be a definition of exactly what long COVID is. Are they avoiding that at the moment?
Kate [00:11:00] Yeah, I think they are, because for as long as long COVID has been in existence, it seems to be that there have been these competing theories and different people campaigning for it to be recognised in different ways. So I know that it's now been accepted as an autoimmune condition.
Annie [00:11:18] It has, okay.
Kate [00:11:18] So it seems to be this sort of very hazy, sort of umbrella term, which is what happens when your body gets totally messed up with COVID and it doesn't know what it's doing anymore, and you can go from an incredibly healthy dynamic, fit- often loads of athletes get taken down by this, people with no co-morbidities and end up completely debilitated and often completely stuck in your lives. I mean, I'm unbelievably lucky to be in this position. Part of the thing that I really want to land with you today Annie is just how psychological an experience this is. How utterly undermining it is of your sense of your own reliability as a witness to your own condition. So, you know, I write a lot about unreliable narrators, and I've been in the strange position where my body has felt like an unreliable narrator.
[00:12:11] *Short musical interlude*
Annie [00:12:20] So, it was November 2020 that you started feeling the effects. Talk me through.
Kate [00:12:25] Okay, so it's November 2020 and I'm living an incredibly busy life. My novel that I've written sort of fairly recently is still something that I'm promoting and has recently been published in the States. And I'm starting to research and get stuck into my second novel, which is under contract. So, I'm kind of all out there. I've got two kids who are ten and eight. I've got an incredibly busy husband, I've got lots of friends and I'm really feeling like I'm kind of in the prime of my life. I'm feeling really, properly thrilled to be alive. And even though there's this horrendous pandemic going on, I'm spending my whole time thinking, 'God, I'm lucky, God, I'm lucky, God, I'm lucky. I can't believe my experience at this time. My dream of becoming an author through my life has been realised and it's gone better than I've possibly imagined', etc. etc.. If I was a character in a book, I'm waiting for a fall. I'm kind of fallow ground for something to come and knock me over and indeed it does. And I start to feel... essentially it was almost like I felt like a scarecrow, that bits of the stuffing had been taken out. I was just very much more weak and drained than I was accustomed to being. I just felt much less robust. And occasionally I'd have these sort of strange feelings like someone had taken my batteries out altogether, and I'd have to just lie down immediately. Sometimes I'd just lie down on the floor. I tested initially for COVID and I was negative with a lateral flow. This was back in the day when we didn't know that lateral flow was not very reliable and I thought, okay, so I haven't got COVID. What else is it? Maybe it's something hormonal, maybe it's something nutritional, and so I kind of went round the houses. I met with a couple of doctors, I ignored it for a bit, I took lots of vitamins. And it was a very, very uneven decline. So I'd have a good day and I'd think, maybe there's nothing wrong with me. Maybe that was in my head, maybe I was just hung over, who knows what it was? And then it started getting worse. And I started feeling like I needed to spend two or three hours a day in bed when the kids were at school. I was thinking, 'this is so strange, is this viral and what is it?'. And then I realised that I'd lost my taste and smell. And at that point, it became clear that I had COVID. And fairly soon after that, I'd say two or three days after that, I started feeling dizzier and weaker. And then I was stuck in bed for four months. I was in a position where I went from being sort of slightly fragile, to, 'it's very, very hard to get myself out of bed and marshal myself down the stairs and make a cup of tea'. At which point my doctor said to me, 'all we know about long COVID is the more physical exertion you do, the worse it is. So, the thing you have to do is stop moving, become a sedentary as possible. Either that's in bed or on the sofa'. Remember, I've got two young kids so this is not so easy, 'but just don't move. Just do as little as possible as you can and let time flow, let time pass. What we know is that for most people, it seems to be about a 12 week course, that you know, that it can kind of pass through and your body settles. We don't know what's going on', she said, 'but we do know that most people get better after 12 weeks'. And she was a very empathetic doctor and she- thank God!, because there are a lot of people whose experiences of doctors are the polar opposite. But she said, 'the thing you need to know is you will get better'. And I don't think she knew- well, she definitely didn't know that. But she knew that it was important for me to have some hope. And of course, I didn't really, I mean, I had some hope, some days, but mostly I was in this position where I was thinking, 'what if this is it?'. And she said, 'look, get one of those Fitbits and make sure that you restrict your movement to 500 steps a day'. Now, I don't know about you, but I mean, I had no idea what 500 steps a day was. But actually, by the time you've gone downstairs and made a cup of tea or made a bowl of porridge, which was freezing winter, that's sort of your allowance. So it was this very, very odd thing where I couldn't move. Even when I felt better during the day, I was supposed not to move. It's very hard to describe that shift suddenly from being someone that doesn't sit still, moves around a lot, is really sociable and works really hard, to, 'don't move, stay exactly where you are'. And through the day, the symptoms would radically change. So, I'd wake up in the morning and I'd do this mental scan of my body and try and work out 'what have I got today?'. You know, what's in the advent calendar of symptoms that I'm going to open this morning? And for me personally, it manifested a lot around body aches, like really fierce, burning, body aches. A clamp on the back of my skull, like a very painful, squeezing, gripping feeling and this odd, dizzy, spaced out, brain foggy feeling that people talk a lot about the brain fog. So for me, certainly when I was in the depths of it, fog feels like a pretty inadequate word. It wasn't just that I was looking for words and couldn't find them. It felt like my whole being was under dust sheets. You know, I felt like I couldn't experience my senses in any normal way. So it was this sort of awful abyss that you felt like you had descended into and you'd pop up through the day, but when you were in it, it felt like everything had been- all your senses had been plugged and you were deeply, deeply underwater.
Annie [00:18:39] How were you coping and your husband coping with the fact that your professional life literally just had to stop? Your parenting was diminished in terms of what you could offer and do. How were you coping at that point?
Kate [00:18:51] Pretty badly. I mean, in some ways it was lucky that it was lockdown because by the time I got into bed and was stuck in bed, we had locked down again. So it meant there wasn't the school run to deal with and the kids were at home and they were homeschooling. In a strange way, the world was stuck. I was stuck within a stuck world, but we weren't having to move anywhere. No one was expecting to see anyone. So, in some ways that weirdly helped. But it was really hard. I mean, even reading a few pages of a story to my kids would flare my symptoms and I'd have to sleep for a couple of hours afterwards. You know, obviously, my husband was working from home as well and it was just this horrible get through the day. And some days I was more there than others. And that's the other thing is long COVID is unbelievably difficult for people, if you get it badly, for the people around you. A, because it's such a confusing illness, because one moment you've popped up and you're walking down the stairs and you look relatively normal and you can talk, like this, and then the next minute you're entirely debilitated and even too much noise in the room, bright lights, a draft, all of those things feel lacerating to your body. So, you're sort of fending off the world because you just can't cope with it.
Annie [00:20:18] In the article that you wrote, you talked about feeling like the virus was gaslighting you. Can you tell us a bit about that?
Kate [00:20:26] So, this is the bit that I- I talk to a lot of people now who have long COVID, and this is the bit that I think people most need to understand to be able to help other people who've got long COVID, because there seems to be very literally you can do in terms of the symptoms, there are techniques which we can come onto which are incredibly helpful, but the mental position you're in is this very, very disturbing state of constant imposter syndrome. So you- when you're feeling incredibly ill, you know you're incredibly ill, but you're also overcome with a terror that you're never going to get better, that you're going to be completely stuck.
Kate [00:21:12] Right.
Annie [00:21:12] But when you're not feeling ill, you're completely questioning your whole sanity. Like, 'am I ill, am I making this up?', 'Are those people who say that long COVID is psychosomatic and is actually just a way of, you know, dealing with other stresses in your life, are they right?', 'Had I wound my life up too fast and hard so that I was, you know, my body was kind of telling me to stop?'. And so you're constantly dealing with these two terrifying unknowns: am I ever going to get better? And, is this real? And, it seems to be the minute you decide, yes, it is real, your body does this very cruel thing and it allows you to feel better. And you think, well, that's great. But actually it's not because you're completely disorientated by that fact. And even worse than that, you suddenly feel incredibly hopeful. And then the crushing disappointment when the symptoms start again. So you can have two days, as I did in the, in the sort of depths of my kind of four months, I had two days where I went for a short walk round the garden, which was extraordinary. I had lunch with family. It felt normal. I stayed up relatively late and I thought, this is gone. And then the experience, the gaslighting experience, when two days later, I woke up with these- it was like the return of, you know, your worst nightmare that had invaded by body again. And I thought, oh, God, I'm not even getting better. And I had this constant vision of this snakes and ladders board in my head, which was, you know, once you'd go up these ladders and then there would be these bigger snakes you'd fall down. And you know how on the Snakes and Ladders board at 99, there's that particularly cruel snake that sort of knocks you down to whatever it is, three or two? That kept happening. So, the whole thing was a total, kind of, excuse my language, mind fuck. I mean, it just was utterly disorientating.
[00:23:29] *Short musical interlude*
Annie [00:23:41] So, it's this idea of every time you think you're moving forwards, you go back. And the kind of, exhaustive nature, the kind of, wearing down of your hope and your optimism. And then the self-doubt in thinking, 'was I even well? Did that even happen?'.
Kate [00:23:55] Exactly. So it's the mixture of hope and despair, which just seemed to go in this constant cycle. But as you say, even the hope and the despair had this completely unstable foundation of, 'is this happening or not?', which it clearly was. But there's so much, and I know there are all sorts of communities out there, you know, especially autoimmune illnesses like ME and CFS, they've all experienced this, A, sense of self doubt and also this gaslighting of the medical establishment, who are all saying, well, actually, you've probably just got your knickers in a twist in your life somehow and your, you know, your body's expressing it. And I think in some ways, it's been helpful for those communities that long COVID came along. Because the sheer numbers and the synchronicity of people getting ill in the same way, meant that it wasn't just a random thing that someone got taken out by ME and therefore could have been a psychological issue. Because you can't get that many people succumbing to a neuroses at the same time. You know, that's just not possible. It's not a negligible amount. Personally, and I know a lot of long COVID people feel the same, which is I'm just terrified for the amount of people that I know are sitting ducks. You know, they are, they are going to go through some version of this experience that I will. It's not that it's stop- it's going to suddenly stop happening.
Annie [00:25:23] No, and it makes me think that if there is a knowledge now and an awareness, maybe not completely conclusive, but if there is an awareness and a knowledge of long COVID and what it is and how you maybe could get it or whatever, surely there should be some sort of public information or campaigns to people now saying, if you have COVID, these are the things you can do to maybe prevent getting long COVID.
Kate [00:25:49] Yeah. I agree.
Annie [00:25:49] But there's nothing.
Kate [00:25:52] No, there's absolutely nothing. And I think it feels to me like there's a lot of nervousness around so-called scaremongering and what that's going to do to the economy and what that's going to do to people's confidence and panic and things like that. Whereas, I totally agree with you. I really think that, you know, the best thing you can do if you possibly can when you get COVID is just to take everything out, you know, just to completely succumb to it, even if it feels minor. Because I had a you know, I had a pretty light dusting of the virus until the actual long COVID symptoms started. I mean, it's a very interesting point, who gets long COVID? And they know that there's a big cohort of women in their forties and they're trying to work out how much that's-
Annie [00:26:35] I did not know that.
Kate [00:26:36] Mmm, I'm afraid so. How much that's tied to hormones and whether perimenopause plays a part in that.
Annie [00:26:43] Shit.
Kate [00:26:43] I know. Sorry, sorry, this is aw-
Annie [00:26:45] Fuck, it's just so- it's just so unfair, though, like, as if there's another thing that women can be fucking prone to because of, ARGHH!
Kate [00:26:53] Right, I know. And then also, and also when we're getting into the unfairness of that, everyone's always thinking we're being neurotic. And there's always more women who get told that things are in their head than men. And now, now you've got something which is incredibly mind-body connected and women are more prone to it. Well, you know, you're going to get a lot of male doctors, and I'm afraid there are only male doctors that I've read about that seem to say this, which is, you know, this is a kind of mass hysteria. It's infuriating.
Annie [00:27:35] So, Kate, like, I guess one good thing about the fact that women in their forties get it is that I don't think it's possible to feel more in tune with who you are as a person, than when you are a woman in your forties. There's something about women where they are good at talking, I don't want to gender generalise here, but in my experience, but also they're quite in tune with their bodies because they have to be, because of, you know, maybe childbirth, menstruation, whatever. You're aware of your cycles, you're aware of your moods and your hormones, like how did your relationship with your body change upon getting long COVID? What did it do for you and how you felt about your body?
Kate [00:28:12] I'm going to answer that by slightly taking part with the first part of what you said, which is that-
Annie [00:28:17] Yeah, please do.
Kate [00:28:18] That women in their forties are super self-aware. For me personally, I thought I was super self-aware and the experience of having children and juggling that with a career that was at the time taking off and putting a huge amount into friendships and having all these competing demands on me meant that, even though I was emotionally attuned to the people in my life, I was entirely out of touch with my body. I'd always just taken it completely for granted that I had a body that worked really well. There's a huge change in the way that you see yourself, but the change for me, I understood was actually... it was revealing things that were already there. That actually it wasn't that my body hadn't had these weaknesses in these areas, but it was just that I was not looking at them. So, for example, my circulation was was not terrific and I got cold very easily, and I've got something that's called Raynaud's Syndrome, which is just where your fingers and toes go a little bit white and blue when you're cold. And a lot of people, especially women, again, have that. And it's a totally- it's a minor, minor thing, and it just meant that I was normally someone that had to sort of hop around a little bit if I was waiting in the queue outside or wear a hat or whatever. And long COVID, when it came along, when I got remotely cold, the symptoms just went SHJOOM. And there were other things about my body and actually about my kind of emotional make up, which were the same. I've always been very kind of acutely aware, to, when there's a dynamic in the room that's not being spoken about and there's a sort of falsity there or hypocrisy in the room. And again, if I was having a conversation where I wasn't really- that, it felt like there was a sort of dishonesty or some kind of trade going on, again, my symptoms would flare up.
Annie [00:30:18] Wow.
Kate [00:30:18] So, it felt like that it was showing you things that- I, you know, think of myself as a pretty self-aware person, that it was showing you things that you knew but weren't really getting to grips with in your life, both physically and mentally.
Annie [00:30:34] Wow. And you describe it as when die is injected into the-
Kate [00:30:38] Yeah, exactly. So, I always had this image of erm, and I think this is right, of when you go into an MRI scan and they put some kind of dye in your body so that you can, it shows up the veins or the nasties in the veins. And it felt like long COVID was showing up- was like this super X-ray and it was showing up these things that were there, but that you hadn't really, properly confronted or you had sort of thought, well that's there but it's fine. I can kind of- I'm functioning, I'm going to move past that, you know. And it highlighted it and it made you stop in your tracks and go, you've got to frigging deal with this now. So, you've got to take out those relationships that don't feel right and you've got to calm down your nervous system and deal with your circulation issues and certain areas. And I know that everyone who has long COVID has a different version of this. You know, it seems this very oddly bespoke condition. It finds out the parts of you that have some kind of weakness or threat response and it, you know, burrows into it. And that sounds slightly woo woo, but it's not. I've spoken to so many long COVID people and I always sort of thought of long COVID as quite a cowardly disease in that sense. You know, it seems to kind of err-
Annie [00:32:03] Prey on the weak parts.
Kate [00:32:03] Yeah, it's like, God, pick on someone your own size, for God's sake, you know? So, yeah it feels like it's got this sort of rather malicious intent. But the upside of that is that it makes you find out these things about yourself and think, 'right, okay, I've got to deal here. I've got to look these things in the eye'.
[00:32:25] *Short musical interlude*
Annie [00:32:35] So, you had four months where you said you were, I think you described yourself as a pale ghost, just kind of existing and trying to navigate through this. It felt like there's a turning point where you actually took it on yourself to be like, I need to get better. I don't know how, no one is helping me to do this in the way I need. I have to do it myself. Talk me through that transition.
Kate [00:32:56] Okay. So, I mean, I've always fancied myself as a kind of amateur detective *both laugh* and I kind of, you know, I enjoy having like little crime elements or mystery elements in my writing as well. I've always kind of enjoyed trying to crack things. And so, when I got to the point where actually I could concentrate for a few hours a day, I thought right okay, how am I going to use this energy? So, the kids had gone back to school, it was during the day, what can I do with it? Luckily for me, though unluckily for her, one of my best friends also had long COVID and she had had long COVID since March 2020 and she'd had to quit her job and she didn't have children, but she was sort of incredibly busy and she had been totally derailed by it, as I had. We basically got on the case. The long COVID clinics had sprung up and no one was getting anywhere. I mean, as far as we could work out, people were going into long COVID clinics after a 3 to 6 month wait and just being told everything we already knew, which was 'ahh, rest a bit and do some breathing and take some more vitamin C and go home'. So we thought, right, okay, let's be the vigilantes of long COVID. She was actually the person who discovered this brilliant YouTube channel by this person called Jez Medinga, who I've since met and encouraged to write about it. He's writing a book called Long COVID Handbook, which is going to be published in a few months, but he had set up this YouTube channel, he'd been a runner and an athlete and also a journalist, interviewing all the experts on long COVID and all the latest thinking. And my friend Sasha found this channel. And on one of the episodes, he had spoken to this man called Ade Wentzel, who was a South African consultant, who was recommending this particular supplement which was vitamin B3, which seemed to be working. And by this point, by the way, my bedside table was like Holland and Barrett. I mean, it was just stacked with all-.
Annie [00:35:07] Supplements, yeah.
Kate [00:35:07] And of course, everyone well-meaning and loving in your life has got a kind of new idea on kind of how they can help. What supplement, what healer, what, you know, graded exercise, all these different ideas. But he seemed to be getting this effect with this vitamin B3, so we tried it for a while. And that, you know, seemed to have a real effect on my energy. Not, you know, massive, but it just sort of significantly, maybe 10 or 15% over three weeks, I started to feel better. It was very hard to know whether that was chronology but I still take it and I still think that it is supportive. It supports the mitochondrial function, which is the thing that delivers energy around your body, which is one of the main theories around long COVID, is that it's attacking the mitochondria. And then after I'd written an article, I wrote an article previous to the Times in the Mail, someone who kind of deals with mindset techniques got in touch with me via Instagram and said, 'I read your article and I can help'. And I'd been very, very sceptical of anything that I thought was purely a mental approach to long COVID. It felt like a slightly kind of patronising way to go, to deal with such obviously physical symptoms. But I did a short course with her and she taught me these techniques which were basically to do with visualisation and a kind of brain training exercise, and that really helped. You know, again, it didn't get me the whole way, but it really helped because what I was able to do was, rather than wake up and sort of scan my body for everything that was wrong with it, I'd focus on what was working that day. And it was just, you know, it's not as simple as positive thinking, but it really helps, you know, in the way that we all know that focussing on the things that are working in your life will kind of have a physical effect on you. You know, it has has an effect on the chemicals in your body. So that- all these little mindset, well big mindset techniques that she taught really helped. And my friend did that as well. So it was kind of like, okay, well, we've got a couple of jigsaw pieces here.
Annie [00:37:23] Yeah, yeah.
Kate [00:37:25] I'm by no means completely out of the pit, but I'm starting to make progress that isn't slipping the whole way back down to the beginning of the Snakes and Ladders board. I cold called a lot of doctors, I spoke to people who were doing research in Oxford University around long COVID. I started assembling these different pieces along with my friend, and one of them was breathing, by the way, which is a very extraordinary, miraculous thing, if you can harness it. And I'm not sure that I do completely harness it in a way that people can. But you could do extraordinary things to your nervous system through breathwork, and actually in Mount Sinai Hospital, which is the long COVID centre of expertise in New York, breathwork is the sort of, first thing that they do with with their patients.
Annie [00:38:17] So, you're doing breathing, you've got the B3 and then you've got the kind of, the mindset stuff as well. Tell me about LDN, Low Dose Naltrexone, because for me, I've had someone close to me in my life who was a heroin addict and Naltrexone is what he was given.
Kate [00:38:34] Correct.
Annie [00:38:35] As a method of recovery. So, when I saw that, I was a bit like, eyy? What?
Kate [00:38:38] Yeah, yeah, yeah, yeah. And it is very scary that. So Naltrexone, and obviously I've got no medical experience here at all, so just aim off, you know, everything I say, it's just personal, what I've learnt. Naltrexone is, as you say, used in its normal dosage by the NHS to treat people with opiate addictions. And I don't know how many years ago they discovered that low dose naltrexone, which I think is like a 10th of the amount that's normally given, has this immune modulatory effect and this anti-inflammatory effect on your body. So it calms down your immune system and seems to just generally sort of, diffuse things, I guess, in your system. And it's used to treat a huge array of autoimmune illnesses, but also cancer. There are oncologists, you know, professors of oncology in Harley Street who use it. I think I was told that it was 80% of people who use it seem to have a very good response to it. And I'm one of those 80%. And in fact, I seem to be, even after that 80%, one of the really, really lucky ones in that I started taking low dose Naltrexone, and we're talking about 9 months now after I got long COVID when I'm back up on my feet, the mindset techniques, the vitamins, the breath work, the lifestyle changes they've all really, I've been working my arse off to get-
Annie [00:40:08] I mean, it's a full time job!
Kate [00:40:09] Full time job. I'm not working, I'm under contract, my publishers have been very generous, but I've- my life is totally on hold in that sense. I'm more or less managing with the kids again. But I am using all the rest of my energy on this kind of, detective hunt and putting myself back together. Which, every day I thought about, you know, the single mother who- single income.
Annie [00:40:34] Oh my God, Kate.
Kate [00:40:34] Sitting at home with err, juggling kids and a job they can't afford to give up and no partner to support them. This time that I therefore had, because I was under contract to just explore what the hell I should do and I think, how are they managing? They must be going completely insane. I know that depression kicks in for for a lot of people with long COVID and I imagine despair if you're in that position where you can't help yourself. But as I say, low dose naltrexone, I do recommend it to everyone I speak to now with long COVID because, you know, it might not work for everyone, but it's had this radical effect on my life. So, you know, I was I would probably say 60% there. And then within maybe four weeks of taking the LDN, I was bizarrely better in terms of, you know, what my partner said and my friends said, they were like, 'you're back'. Now I then got even luckier in that I was feeling stronger and stronger. And then we got given this opportunity to relocate to Africa for 3 months.
Annie [00:41:54] Yeah! I mean, that's a change.
Kate [00:41:55] That's a big old change. And that was, for me, the final piece in the jigsaw puzzle because, I was on low dose Naltrexone and all these other techniques. I knew how to kind of get myself through a day in a way that was kind of nutritionally, because that plays a part too. And in all these other ways, the best way of getting through the day in long COVID terms. And then I got this chance to massively simplify my life.
Annie [00:42:26] And how did that come about, that chance?
Kate [00:42:27] Well, it wasn't handed to us in the sense that I explored it and I guess made it happen. I was looking for a way to, um, to sort of get us out of our lives. And I found a local school in Africa and was able to move my children to it and because of remote working with my husband, we just moved the show over to Africa.
Annie [00:42:53] And why did you want to go to Africa?
Kate [00:42:55] Well, both my parents are South African, so I've had this link to Africa. I've got a very good friend who lives in Kenya. And then particularly I heard about this school, this amazing kind of local school on the coast. I mean, who wouldn't want to go? On the coast, sort of north of Mombasa, where it was outside schooling and kind of, you know, walking down a dirt track to kids school, you know, as far away as you could get from our kind of, you know, media, creative, central London lives. And, uh. And so we, we were just lucky enough to be able to do it for three months. I unplugged. I didn't really phone many people. I didn't. I just sort of checked out. God knows how few people get the chance to do that. And I'm sure I would have got better anyway, but for me, it really sealed my confidence. It felt like a crash course in calming down your nervous system.
[00:43:52] *Short musical interlude*
Annie [00:44:01] You talk about living in the middle of a big, metropolitan city. Like, if you are sensitive to sound and light and chaos and you go to Kenya and you realise how much you thrive in that kind of simplification, you know in terms of a place, being rural, being close to nature, and then you come back to the city, like how did you, I guess, recalibrate coming back to London after knowing how good Kenya was for you?
Kate [00:44:27] Such a good question! I am trying to recalibrate. The thing that I learnt there, which sort of amazed and frightened me at the same time, was that when you're somewhere like there, you can afford for all your senses to be totally open because there's not actually that much going on. So, you know, maybe a bird passes by or, you know, you're kind of watching the water. There's not a huge amount of kind of, incoming stimulus, and you're kind of very alive to nature and textures and smells and it's not a rush of things, and everyone's moving at a slower pace, and there were there were far fewer people. So, I could afford to be entirely open to everything. And when I came back, I actually had to fly to a funeral and I went via Istanbul airport. And I walked into Istanbul airport and the lights and the noise and the kind of, adverts, and the sort of, huge kind of, crashing over stimulus of modern life was utterly overwhelming. I felt like all my synpases were totally fried, and I've realised in the last few days that you cannot afford to keep all your kind of- it's sort of like having all your vents open. You can't afford to do that. Well I can't afford to do that in London, in the way that I was living in Africa. That you have to actually shut certain things down because if you're painfully aware of people you're passing in the street and the pain in people's faces, or the anxiety, or the hostility, or the homeless guy on the street, if every single thing is sort of turned up to max in the way that I was absorbing things in Africa, you wouldn't cope. And I've realised that actually a lot of city life, you have to shut things down and displace things, which is obviously not a healthy way of living. And my big challenge now is, how am I going to incorporate some of those things, some of those kind of ways that I lived out there in this wildly different environment and not just feel like I'm in the wrong story the whole time, that you know, I need to be living this very, very different life in order to be fully well and fully healthy. And of course, one of the huge things I was frightened about was, am I going to come back to London and start feeling unwell again? You know.
Annie [00:47:02] Sure.
Kate [00:47:02] My body's coping with it fine. It's my mind that's questioning, how do I do this? How do I kind of, how do I live in a way that feels completely honest and open but is not overwhelming?
Annie [00:47:16] Yeah, and not too open as to be damaging to yourself. I mean, is there something where you have to choose the vents? You go, right, you know, while I'm in London, this vent, and this vent, and this vent has to be shut, but you afford yourself and make sure now moving forwards that you have a chance to live with all vents open at certain times in your life, or in your year, so that you can exist like that.
Kate [00:47:41] Totally, and that's the plan.
Annie [00:47:43] I mean that's a lux- it's obviously a complete luxury to be able to do that but-
Kate [00:47:45] Yeah. That would that would be the dream. That would be the actual dream. I mean, I think it's really important to, you know, not just have in my mind, simple life out there, good, London, kind of, busy life, bad.
Annie [00:48:00] Of course. Right.
Kate [00:48:00] And there are things about coming back and we can all identify this in, you know, whatever life we're living in, which is the emotional support that I've got with my friends and my family and everything, is hugely helpful for your body and mind. You know, you're being supported. And I often think of it as an actual, physical support. Like, you know, you're being held up by the people around you as well. So, there are things that perhaps compensate for some of the things that are a sort of, fry on your system. But I think you're absolutely right. I think it's about like, how do you edit your life carefully? How do you make sure that you're living intentionally and that you're not just sort of being rushed along by life and that there are some things, and as you say, a lot of it's a luxury but, there are some things you can switch down or switch off that maybe you're not considering doing enough and you should.
Annie [00:48:56] Kate, how has long COVID changed you?
Kate [00:48:59] It's changed me really profoundly, in the way that I don't take anything for granted at all anymore. And I think I, I really did before. But like I said earlier, I think it's more that it's revealed things about me than fundamentally changed me. So, in that sense, it's made me super aware of my limitations and my weaknesses. It's made me ridiculously grateful for the bits of me that do work and fundamentally, that I've just got through this. It's also just a very, very humbling experience overall. There are only occasional moments early on when everyone didn't know a lot about long COVID where I thought, well, hang on, can you die of this? You know, can you, can your system just conk out, but there have been very few sort of life or death moments. But I have felt like my relationship to time has really changed, you know, and that the combination of feeling like I lost time and quite a lot of time slipped by and also being acutely aware of time in the day, you know, how you use it and what effect it's going to have on your body, has meant that I'm- rather than feeling like I'm just rather blithely moving through time, I feel super aware of it all the time.
Annie [00:50:23] Mmm. And how do you want to use it now? Like having had that, that experience of feeling like you've lost, or feeling so viscerally every single minute in terms of when you can function properly and when you can't, like, how do you want to use your time now, moving forwards?
Kate [00:50:39] As a writer, some of that's about, what am I going to write about? And while I was out in Africa, I wrote a draft of a short book and it was, I think rather tellingly, all about someone who was in the wrong story and needed to get into a different story in their lives. And what I'm going to try and do as much as possible is try and make sure that I feel like I'm writing about that aspect of life. Like, how intentional is your life? Are you using your time well? But also, there's a really practical thing I want to do. I've decided I want to become a magistrate, which is-.
Annie [00:51:18] *Whispers* Oh my God.
Kate [00:51:18] *Laughs* which is something that anyone can do with no qualifications and actually only takes, would you believe, 21 hours to qualify to do. And it's something that I'm not sure I would have thought about if I hadn't had long COVID. I was stuck in my body and in that room for so long. And as a novelist, I'm in my shed, you know, all the time as well. And I'm in my head. Those two things came together and I thought, right, I want to get out into the world more. I'm excited about that. I've always been someone that actually really likes change. My worst fear is getting stuck, sort of, being too static. So, I think, you know, I'm going to learn to be a magistrate, but I'm also going to, very intentionally keep myself open to big change in my life.
Annie [00:52:08] Yeah. You said change is the secret to a fulfilling life.
Kate [00:52:11] Yeah, did I?
Annie [00:52:13] Yeah, yeah.
Kate [00:52:14] *Laughs* Yes. I feel like that. I do feel, I feel like that it's painful to change often. A writer, a psychotherapist called Julia Samuel, who I really admire, says that pain is the agent of change, and there is pain involved in all change, but that if you can, if you're not frightened of it, if you're willing to open yourself up to it and to stay alive and not get stuck, for me, that's the secret of feeling most like I'm living the right life.
Annie [00:52:40] Yeah, well, I'm absolutely in awe of how you have got through these last 18 months and just, not just like, got through it, but fought through it and kind of found your way out the other side. And I'm so happy to see you so well. And I just thank you on behalf of all of our listeners, who either are sufferers of long COVID or who know people in their lives who are, for being so enlightening in terms of your own personal journey as well. So thank you so much, Kate.
Kate [00:53:09] Well, thank you.
Annie [00:53:14] If you know anyone suffering from long COVID or you are helping someone through it, please share this episode with them. I'm going to send it to everyone that I know who suffers from long COVID and if you recognise some of the symptoms, anything that is recognisable, it's worth just sharing out to people that you know. We'll put loads of useful links in the show notes too. I must stress again, if you're having difficulties, if you're worried, just go and visit your doctor. They are the experts. And thank you so much to Kate for her really honest account of what has been such a traumatic time for her. I'm kind of in awe of her tenacity and her strength in getting through that period of long COVID. Okay, next week you are going to be able to hear what went down at our first ever live episode of Changes, which took place, as I said, at The Podcast Show in London. My guest was drag race finalist, Ella Vaday. Nick collier went from working in the West End, to working in Morrisons when covid hit. But during lockdown, he started to experiment with drag on Instagram before applying to Drag Race UK. We talk about going through these huge changes, as well as Nick's early life, which featured huge upheavals. So, it's a really interesting conversation and totally enhanced, I hope, by the addition of a live audience. Really interested to see what you think. Thank you for listening to the podcast as always. Let me know what you thought. Follow, subscribe to Changes, leave a rating where you can and send, send, send, send please this episode to everyone you know. Changes is produced by Louise Mason through DIN Productions. See you later.
