I tend to try and go over symptoms, to say what I'm experiencing. I think there are different sub-types of Long Covid, so there are people who have organ damage,…
 
Oh, you just cut out slightly there. Can I just double check you said cognitive?
 
No, organ, organ damage.
 
Organ, sorry, sorry.
 
No, not at all. So, there’s some people who have organ damage, so demonstrable pericarditis, for example. There are people like myself who seem to have a lot of the dysautonomic symptoms, possibly with, you know, an autoimmune element. There are people who were severely unwell and ended up in ICU and are recovering from that stress. So, it all kind of gets lumped together as Long Covid, but I think there probably are different sub-types. People’s understanding of Long Covid as well, is variable. Some people say, even now, what is that some people say, “Oh so are you just very tired, then,” and some people, on the lesser side, but some people have an understanding of all the different components, I feel like there is possibly a bit of stigma around it, I hate to say, but I think there probably is in that as I said earlier, I think some people think that there’s a strong psychological component to it. And really, that’s founded on nothing, that’s just based on assumptions, from what I can tell. And there’s very little understanding of the dysautonomia, and the myocarditis, the GI symptoms, and the autoimmune kind of stuff, but hopefully that will change with time.

What responses have you had, personally, when you’ve told people about your ongoing symptoms?
 
A lot of people are in disbelief, I think that they didn’t know, they don’t know that this is happening. I forget because I have been in the thick of Long Covid for over a year, fourteen months. So, I assume everyone has heard of it, and everyone knows about it, but a lot of people haven’t, and don’t appreciate that people are having such prolonged symptoms. Some people mean really well, and I feel are being very kind, but they’ll say, oh yes you must be feeling very anxious. Sorry, I don’t know if you heard that. But they’ll say, you must be feeling very anxious, or you know, anyone would feel depressed having your symptoms. So, they’re subconsciously, perhaps, attributing a lot of what I've been going through to psychiatric symptoms which isn’t right, really. And some people genuinely seem terrified, and horrified, and are worried for themselves, I think. Because you know, they empathise, and they wouldn’t want this condition as well.
 
There are also people who are close to me who I think, maybe, their way of coping with it, because it has been a long illness, and I have been really, really sick, their way of coping is to try and reason through it, by attributing the symptoms to something else. Like, I've been asked, well could you be menopausal, you know, are you sure it’s not the menopause. Or, you know, is it your thyroid, you know, they just want something concrete. And I think the difficulty with Long Covid is, at the moment, there’s not really anything concrete. There are studies that are coming out which are demonstrating, you know, the mast cell overactivity, the autoimmune components, the dysautonomia. But until we have a robust network of evidence, I think that it’s all a bit nebulous, really, and people find that really difficult. And I have found that really difficult.
 

I think, then, a vaccine became available. So, I had, because I'm a healthcare worker, I got the vaccination, fairly early. I felt terrible for about a week, and then, started noticing things get better. The dysautonomic symptoms got a lot better, so the postural tachycardia got better, I didn’t feel unwell, and dizzy on my feet so much, I felt like I could think more clearly. Peripheral neuropathy seemed to get a bit better, as well. So, I was just delighted. And, unfortunately with this second vaccine, I had that period of, oh I think it was probably two to three weeks of not feeling great after it, in all honesty. But it really did trigger off the peripheral neuropathy, again. So, the first vaccine seemed to help things, the second vaccine, possibly less so. It could all be incidental, and coincidence, it’s really not clear. But on the whole, I would say I have steadily been getting better since that time, so that’s December, so five months ago. There have been blips, they’re probably not a linear thing.

One thing that I haven’t spoken about is, I suppose the psychological effects of Covid. So, I do so with a little bit of trepidation, because one of the things that has been really difficult, about this illness, is that a lot of people have wanted to pigeon-hole it as psychological, Long Covid in particular. And when you're experiencing symptoms, when you’ve got a palpable tachycardia, you know, when you have raised inflammatory markers, when you have palpably sore joints, it’s really difficult to think that people might think that there’s more of a psychological element to it.
 
In saying that…I do understand there’s a psychological element to everything [laugh]. What, what I would say is, because the autonomic system is affected, for months and months, I felt like I was anxious, I felt like I was on edge, I felt like I was full of adrenaline, and I didn’t understand it at all. I now know that that can be secondary to PoTS, and that can be secondary to the dysautonomic symptoms, which gives me a bit more understanding, because logically, I wasn’t, I was trying to think, why am I feeling anxious about things, but I couldn’t give a good answer to that. I didn’t really understand why I would feel anxious, really, particularly when things were getting better.
 
It was only when I read more about, PoTS, and the dysautonomic side of things that, it made more sense. It’s just adrenal, overload, really, in saying that, I had tried to go back to work about six months into my illness, I'd had a good period of a couple of weeks, and I thought, well I was pretty desperate to get back and have some normalcy, for a really long time, and also felt very guilty about the fact that my colleagues were working really hard, during a pandemic, and I wasn’t contributing, so I, I tried to go back to work, and I just couldn’t do it, I felt ill, and my brain wasn’t working properly.
 
When I look back, I was still far, far too early, because I know that now from the symptoms that came after, that had a very negative effect on me, it made me worry about what the future was going to look like, was I going to get better. It made me worry, did I have permanent damage that was causing this, why, six months down the line, was I not able to do something that I would have done, really easily before. It made me feel like a failure, really, to be honest. I guess I put a lot of pressure on myself to feeling well, so to go back to work and not manage things, was really difficult for me. So, at that point, I did become depressed, because I felt so, upset, and guilty about the fact that I wasn’t back at work.

So, I suppose the other thing is how the term Long Covid is used, but how do you think it should be described, would that be your preferred term, or is there a different form of words that you’d feel more comfortable with?
 
I mean, for me, I think, Long Covid, is fine, for now.  I think it would be good if, if sub-types could be classified, or if, when additional research is available, that it might become apparent that it’s not all one thing. But at the moment, an umbrella term is probably alright. And Long Covid doesn’t bother me at all. Post-Covid syndrome, I don’t really like, I think, I think NICE were trying to push for that at one point. Yeah, it, it sounds a bit like chronic fatigue syndrome, and I think that people are very worried about both conditions being condensed into one.  And again, chronic fatigue is another condition that’s been given a very hard time, and probably consists of different sub-types, but has just been lumped into one thing. So yes, Long Covid is fine for me.

Yeah. I have an amazing GP who has been really kind to me, during the acute illness, right at the start, she kept tabs. I was very fortunate to catch up with her weekly at one point, and then fortnightly, and then spaced out. But she really did keep an eye on me, and that was, when she wasn’t around, the other partners in the practice were also fantastic.

There was one day I phoned, because the chest pain was so bad, and I ended up bursting into tears on the phone to the poor receptionist. They were all so lovely, they ended up getting me in that day for an ECG, and just so kind about it. I think it was difficult for the GP to know what to do with people like me, because it was a new condition, there was no service set up specifically for it. The hospitals weren’t really doing much in the way of outpatients, it was largely emergency work because of lockdown, and preparing for, you know, an onslaught of admissions. So, I think it was difficult for them to know what to do with me, really.

And I think, you can probably get a sense that a lot of this illness, because it’s all been new, a lot of it has just been me trying to work out what on earth is going on. And as a doctor, that has been really, really difficult. I can’t imagine what it would be like as a lay person. The neuro stuff, I thought had gotten better, so you know, the phantom smells, the tinnitus, I'd had some strange nerve pain, like a poker in my ear, really bizarre, but it was very, very painful. Strange kind of scalp sensations, as well, but all such vague and strange things, I didn’t even mention them to my GP, because I thought she might think I was completely mad [laugh].

And then I started paying more attention to other articles in the media. And one of those led me to a medical Twitter – I don’t have a Twitter account, but a lot of medics do. And there was a lot of chat about Long Covid, on there. And I ended up signing up, and asking someone, in a, just feeling completely desperate at that point, asking if I could join the group. So, they’d set up, a small peer group, to help with, pacing and management of symptoms. And she was so lovely and so kind, and introduced me to the Facebook group, with doctors.

So, I found, [group] I found, the doctors’ group, and a larger UK wide group. And, for me, these groups were really helpful. One of the things that was, difficult for me was, feeling like I was going…wondering if symptoms were in my head, because they seemed so preposterous, not understanding things, and feeling quite alone, because I didn’t know anyone else who had Covid, at that point. So, meeting other people who had the same symptoms, in the same order, at the same time, was just, my mind was blown really. and it gave me so much reassurance, and I suppose, some validation as well, and also, support. And then, you know, as I got better, I paid more attention to…in the doctors’ group, lots of symptoms were shared, and the, you know, there was a lot of discussion around what’s going on, and what treatments might help. And that was pivotal in my recovery – getting onto a beta blocker for the tachycardia. It was life-changing, literally.

Getting on a good antihistamine, as well, for the, all of the Mast Cell symptoms, that made a massive difference. and there’d been a period when I'd had really bad hayfever, before I found any of the Facebook groups, and I took, antihistamines for a couple of weeks, and I felt better. And afterwards I thought, “Why did I feel better during that period, could it have been the antihistamines?”, not really understanding the mechanism for why that would be helpful. But then, so through one of these groups, I found out, and I got onto something regular, and it really, both of those medications have been life changing. Yeah, so most of my learning, I guess, about Long Covid, has been through these groups.

I think, one thing I guess I haven’t said is, one of the most important things that you could do, if you encountered someone who has Long Covid, is just be compassionate and understanding, believe what they say. It’s all very real, it sounds preposterous, and wild, and unbelievable, but it’s very, very real, it’s happening. And it’s really scary, and difficult. So just, you know, the kindness from other people has really helped me. And when there have been moments…no, no one’s been particularly unkind…but there have been moments when people maybe haven’t believed the symptoms, or have dismissed symptoms, and it’s really had a profound effect on me, and put me back the way.

In the acute phase, it was really difficult. I was very fortunate to live with someone, and he has been amazing, he’s really helped, he did everything for a really long time. There was no way I was going to manage to stand, to cook, or you know, getting to the shower was, was difficult. He helped with a lot. I don’t know what I would have done if I was on my own, I think I probably, I just don’t know. I mean, I’m saying, I think I probably would have had to have gone and stayed with family, but then if you have Covid, you can’t, you know. So that must be really difficult for people. Gradually, and I mean, months in, things started getting better, and I started being able to do more. But for months, and months, he did everything.

Yeah, before getting unwell, I was really busy, I was working full time as a [job role], so forty hours a week. I had a social life, I would see people, I had interests, and hobbies. So, one of my, one of my main interests is plants, and gardening, absolutely love that. So, that would take up quite a bit of my time as well. I had, you know, I had basic interests like watching things on TV, and watching films, and reading, and drawing, and things like that. So, life was busy.

And how does that compare with life living with Long Covid, or Long Covid ongoing symptoms?

So, all of that, pretty much, went in the bin [laugh]. My hobbies, my interest, I couldn’t, I just felt so unwell. I certainly wasn’t able to do things like look after pot plants, and do gardening, so a lot of the plants died, or got given away. The garden grew wild for a year. Reading, I couldn’t do, I couldn’t concentrate, TV programmes, I would sit in front of, but it’s not being taken in. And it just felt like there was no joy to life. So, I could understand why people perhaps thought there was a stronger element of depression, because your interests, and your pleasure just go, when you're sick and not feeling well. Social interactions obviously became difficult because of lockdown, but also, they were just so mentally draining. There was a while, a period of a few weeks, I think, when I really struggled to have any conversation, it was difficult to follow the conversation, very difficult to take it in and digest it, and then formulate a response. And I had fairly marked word identification as well.

So, speaking to me was a little bit challenging, because I just couldn’t compute what people were saying, and the time, so the long delays before I would reply, and often, I just got the wrong end of the stick. And the socialising kind of went out the window, and work, of course, I couldn’t work. I tried to work through the first week, though, and then, I think I was pushing myself to do it, but words were jumping about on the screen. I was working from home, but I just couldn’t focus on anything, concentrate, and then the video, the flashing lights, the scintillation started. And I just, I stopped, around about a week in when I got really unwell.  So, not working was difficult because you miss the social contact, you miss, having a role, you miss having a purpose.

But also, I was really worried about the future, how was I going to have an income, what was I going to do with myself, what was I going to be able to do. So, all of those thoughts were going through my head, and I just felt like I needed to be back.

It took me a really long time before I accepted that I wasn’t well enough to work. I probably drove my managers mad, because I would email every couple of weeks and say, “Right, I think I'm getting better, I'll be back on Monday”, and then lo and behold, I would be ill again, you know. It was like a roller-coaster of symptoms, you know, these waves of feeling better, not feeling better. So, I accepted that I needed to be off. I was off for a really long time before I tried to go back to work, so about six months. Obviously, that didn’t work out, which was difficult, and then I had some more time off, and I'm trying again, and it’s going much better this time. So, I finally feel that I'm at a point now, fourteen months in, although I've got some symptoms, they’re mild enough that I can start doing some of these things. I feel like I've got the joy back, a bit.

I can, you know, I've started gardening, it’s tiring physically, but I'm doing that. I'm reading, listening to audiobooks, podcasts, watch TV. Seeing people which is fantastic, much more able to speak and hold a conversation, although it is tiring afterwards. So, I feel much more like myself, I feel I completely lost myself for about a year, and gradually over the past few months, things have been coming back. I'm pleased [laugh].

At what point in time did you think to yourself, I think this is me, you know, the stories that other people are sharing about prolonged symptoms, and kind of how many weeks in, or months in, did you identify?

Hmm, that’s a good question. I think it was quite late, I think it was quite late. It was after I had seen the neurologist, so we’re probably talking about three months in, before I understood that other people were having the same thing, and that it was quite common. So those first few months were really difficult, because I couldn’t understand why I wasn’t getting better. You know, the Government had said, this illness will give you a bit of a cough for two weeks, you know, take two weeks off work, here’s your fourteen-day certificate. Then, there I was, you know, months down the line, with evolving symptoms, different systems affected, things that the news hadn’t spoken about, or the press conferences hadn’t spoken about. It was really confusing, and overwhelming, and worrying.

So, I downloaded Headspace, not really thinking it would be great for me, to be honest, I was a bit of a cynic, I am a bit of a cynic, but started doing it, and what a difference. And I think it’s the breathing exercises, they’re really helpful to [stimulate] your vagus nerve.

Doing the breathing exercises, and, you know, the meditation with it, really, really made a huge difference. I've got out of the habit of doing that now, and I really must get back into it, because it really did help. When I could, I did gentle yoga. So, if you go on YouTube, there are lots of yoga videos for people with PoTS. So, you know, not, you don’t want to be doing the fast-paced, crazy stuff, but more of the, the gentle stretching, and breathing, is helpful. So, I found that good, as well.

And how does that compare with life living with Long Covid, or Long Covid ongoing symptoms?

So, all of that, pretty much, went in the bin my hobbies, my interest, I couldn’t, I just felt so unwell [laugh]. I certainly wasn’t able to do things like look after pot plants, and do gardening, so a lot of the plants died, or got given away, the garden grew wild for a year. Reading, I couldn’t do, I couldn’t concentrate, TV programmes, I would sit in front of, but it’s not being taken in. And it just felt like there was no joy to life. So, I could understand why people perhaps thought there was a stronger element of depression, because your interests, and your pleasure just go, when you're sick and not feeling well. Social interactions obviously became difficult because of lockdown, but also, they were just so mentally draining. There was a while, a period of a few weeks, I think, when I really struggled to have any conversation, it was difficult to follow the conversation, very difficult to take it in and digest it, and then formulate a response. And I had fairly marked word identification as well.

So, speaking to me was, a little bit challenging, because I just couldn’t compute what people were saying, and the time, so the long delays before I would reply, and often, I just got the wrong end of the stick. And the socialising kind of went out the window, and work, of course, I couldn’t work. I tried to work through the first week, and then, I think I was pushing myself to do it, but words were jumping about on the screen. I was working from home, but I just couldn’t focus on anything, concentrate, and then the visual, the flashing lights, the scintillation started. And I just, I stopped, around about a week in when I got really unwell. So, not working was difficult because you miss the social contact, you miss, having a role, you miss having a purpose.

One thing that I haven’t spoken about is, I suppose the psychological effects of Covid. So, I do so with a little bit of trepidation, because one of the things that has been really difficult, about this illness, is that a lot of people have wanted to pigeon-hole it as psychological, long Covid in particular. And when you're experiencing symptoms, when you’ve got palpable tachycardia, you know, when you have raised inflammatory markers, when you have palpably sore joints, it’s really difficult to think that people might think that there’s more of a psychological element to it.

I do understand there’s a psychological element to everything [laughs]. What I would say is, because the autonomic system is affected, for months and months, I felt like I was anxious, I felt like I was on edge, I felt like I was full of adrenaline, and I didn’t understand it at all.

I now know that can be secondary to PoTS, and that can be secondary to the dysautonomic symptoms. which gives me a bit more understanding, because logically, I wasn’t, I was trying to think, why am I feeling anxious about things, but I couldn’t give a good answer to that. I didn’t really understand why I would feel anxious, really, particularly when things were getting better. It was only when I read more about, PoTS, and the dysautonomic side of things that, it made more sense. It’s just adrenal, overload, really.

So, I guess I was expecting, a bit like when you have the flu, to wake up one day and for things just to be better, but that never really came. I would describe it as waves of feeling unwell, and those waves would actually start numerous times a day, when I was in the very acute. I would have moments where I'd think that it’s passing, I must be getting better, now, that was the, that was the bad bit. Actually, it all just recurred over a period of weeks. I don’t know if that was my fever spiking, or the virus replicating, and increasing in my system, I really don’t know. But that was a persistent feature, and really difficult, because every time I got worse, it made me feel a little bit let down.

That second acute phase, where I was a bit doolally, in honesty, that kind of petered out, into a more subtle phase, which lasted, gosh, probably about a year, a year or more, so until now, in varying degrees of intensity. So, I have had what they’re calling Long Covid, I’ve had ongoing symptoms, some have been cognitive, so even now, I'm struggling to do the job that I was doing before I got Covid. When I was in the thick of it, maybe eight months ago, I was struggling to do things like read anything, watch TV, follow recipes, you know, I just, I couldn’t really do anything, I couldn’t work out how to put stuff in the washing machine, or hang out clothes on the clothesline, I couldn’t organise the process in my head. Things definitely have got better, in terms of the cognitive, in that way.

I also joined a, a group for doctors with Long Covid, which was super helpful for me, actually, because there was so much information. It was just so good to speak to other people who were going through the same thing. Because a lot of the symptoms that I had in that third phase, protracted Long Covid, were bizarre, and difficult for other people to believe, I think. And they affected just about every system going. So, headaches – if I start from the top and work my way down – headaches and migraines, I had ongoing visual disturbance, in terms of the scintillations, the flashing lights, for quite some time. A change in ability to focus my eyes, as well. postural headaches, so headaches when I would stand up. A lot of postural symptoms, so heartbeat absolutely racing, there were times just standing up. I remember feeling so unwell when I stood up to just go for a shower, so that’s moving from one room to another, really, my pulse went up to a hundred and forty something. And it felt as if, there were extra heartbeats as well, so ectopic heartbeats, and a definite feeling of the heartbeat in my chest. I would also feel dizzy, at the same time. And I came to understand through this group that I'd joined, that these symptoms fit with a condition I had never heard of before, called PoTS, postural orthostatic tachycardia syndrome

So, essentially, it’s the autonomic system that has gone a bit haywire, and is causing symptoms, like the tachycardia, like blood pressure dropping, people call it brain fog, the brain not being able to work properly, particularly when you're upright. All of these things could be accounted for by this, so it was really good to discover that, because then I could look at what the treatments for that might be. So that did represent a bit of a turning point.

And I think, you can probably get a sense that a lot of this illness, because it’s all been new, a lot of it has just been me trying to work out what on earth is going on. And as a doctor, that has been really, really difficult. I can’t imagine what it would be like as a lay person. The neuro stuff, I thought had gotten better, so you know, the phantom smells, the tinnitus, I'd had some strange nerve pain, like a poker in my ear, really bizarre, but it was very, very painful. Strange kind of scalp sensations, as well, but all, all such vague and strange things, I didn’t even mention them to my GP, because I thought she might think I was completely mad [laughs]. So, I'd thought all of that stuff was behind me, and then at, probably, month ten, I developed peripheral neuropathy. So, I started getting ice-cold, and burning hot pains in my lower leg, and my feet, which was really uncomfortable. I also got it in my right hand, and my fingers, with some pins and needles, as well. And in addition to that, the initial leg pain, and restless legs at night, that came back at month ten, as well. So, I'm not entirely sure why it did.

I tend to try and go over symptoms, to say what I'm experiencing. I think there are different sub-types of Long Covid, so there are people who have organ damage,…
 
Oh, you just cut out slightly there. Can I just double check you said cognitive?
 
No, organ, organ damage.
 
Organ, sorry, sorry.
 
No, not at all. So, there’s some people who have organ damage, so demonstrable pericarditis, for example. There are people like myself who seem to have a lot of the dysautonomic symptoms, possibly with, you know, an autoimmune element. There are people who were severely unwell and ended up in ICU and are recovering from that stress. So, it all kind of gets lumped together as Long Covid, but I think there probably are different sub-types. People’s understanding of Long Covid as well, is variable. Some people say, even now, what is that some people say, “Oh so are you just very tired, then,” and some people, on the lesser side, but some people have an understanding of all the different components, I feel like there is possibly a bit of stigma around it, I hate to say, but I think there probably is in that as I said earlier, I think some people think that there’s a strong psychological component to it. And really, that’s founded on nothing, that’s just based on assumptions, from what I can tell. And there’s very little understanding of the dysautonomia, and the myocarditis, the GI symptoms, and the autoimmune kind of stuff, but hopefully that will change with time.

What responses have you had, personally, when you’ve told people about your ongoing symptoms?
 
A lot of people are in disbelief, I think that they didn’t know, they don’t know that this is happening. I forget because I have been in the thick of Long Covid for over a year, fourteen months. So, I assume everyone has heard of it, and everyone knows about it, but a lot of people haven’t, and don’t appreciate that people are having such prolonged symptoms. Some people mean really well, and I feel are being very kind, but they’ll say, oh yes you must be feeling very anxious. Sorry, I don’t know if you heard that. But they’ll say, you must be feeling very anxious, or you know, anyone would feel depressed having your symptoms. So, they’re subconsciously, perhaps, attributing a lot of what I've been going through to psychiatric symptoms which isn’t right, really. And some people genuinely seem terrified, and horrified, and are worried for themselves, I think. Because you know, they empathise, and they wouldn’t want this condition as well.
 
There are also people who are close to me who I think, maybe, their way of coping with it, because it has been a long illness, and I have been really, really sick, their way of coping is to try and reason through it, by attributing the symptoms to something else. Like, I've been asked, well could you be menopausal, you know, are you sure it’s not the menopause. Or, you know, is it your thyroid, you know, they just want something concrete. And I think the difficulty with Long Covid is, at the moment, there’s not really anything concrete. There are studies that are coming out which are demonstrating, you know, the mast cell overactivity, the autoimmune components, the dysautonomia. But until we have a robust network of evidence, I think that it’s all a bit nebulous, really, and people find that really difficult. And I have found that really difficult.
 

I think, then, a vaccine became available. So, I had, because I'm a healthcare worker, I got the vaccination, fairly early. I felt terrible for about a week, and then, started noticing things get better. The dysautonomic symptoms got a lot better, so the postural tachycardia got better, I didn’t feel unwell, and dizzy on my feet so much, I felt like I could think more clearly. Peripheral neuropathy seemed to get a bit better, as well. So, I was just delighted. And, unfortunately with this second vaccine, I had that period of, oh I think it was probably two to three weeks of not feeling great after it, in all honesty. But it really did trigger off the peripheral neuropathy, again. So, the first vaccine seemed to help things, the second vaccine, possibly less so. It could all be incidental, and coincidence, it’s really not clear. But on the whole, I would say I have steadily been getting better since that time, so that’s December, so five months ago. There have been blips, they’re probably not a linear thing.

One thing that I haven’t spoken about is, I suppose the psychological effects of Covid. So, I do so with a little bit of trepidation, because one of the things that has been really difficult, about this illness, is that a lot of people have wanted to pigeon-hole it as psychological, Long Covid in particular. And when you're experiencing symptoms, when you’ve got a palpable tachycardia, you know, when you have raised inflammatory markers, when you have palpably sore joints, it’s really difficult to think that people might think that there’s more of a psychological element to it.
 
In saying that…I do understand there’s a psychological element to everything [laugh]. What, what I would say is, because the autonomic system is affected, for months and months, I felt like I was anxious, I felt like I was on edge, I felt like I was full of adrenaline, and I didn’t understand it at all. I now know that that can be secondary to PoTS, and that can be secondary to the dysautonomic symptoms, which gives me a bit more understanding, because logically, I wasn’t, I was trying to think, why am I feeling anxious about things, but I couldn’t give a good answer to that. I didn’t really understand why I would feel anxious, really, particularly when things were getting better.
 
It was only when I read more about, PoTS, and the dysautonomic side of things that, it made more sense. It’s just adrenal, overload, really, in saying that, I had tried to go back to work about six months into my illness, I'd had a good period of a couple of weeks, and I thought, well I was pretty desperate to get back and have some normalcy, for a really long time, and also felt very guilty about the fact that my colleagues were working really hard, during a pandemic, and I wasn’t contributing, so I, I tried to go back to work, and I just couldn’t do it, I felt ill, and my brain wasn’t working properly.
 
When I look back, I was still far, far too early, because I know that now from the symptoms that came after, that had a very negative effect on me, it made me worry about what the future was going to look like, was I going to get better. It made me worry, did I have permanent damage that was causing this, why, six months down the line, was I not able to do something that I would have done, really easily before. It made me feel like a failure, really, to be honest. I guess I put a lot of pressure on myself to feeling well, so to go back to work and not manage things, was really difficult for me. So, at that point, I did become depressed, because I felt so, upset, and guilty about the fact that I wasn’t back at work.

So, I suppose the other thing is how the term Long Covid is used, but how do you think it should be described, would that be your preferred term, or is there a different form of words that you’d feel more comfortable with?

I mean, for me, I think, Long Covid, is fine, for now.  I think it would be good if, if sub-types could be classified, or if, when additional research is available, that it might become apparent that it’s not all one thing. But at the moment, an umbrella term is probably alright. And Long Covid doesn’t bother me at all. Post-Covid syndrome, I don’t really like, I think, I think NICE were trying to push for that at one point. Yeah, it, it sounds a bit like chronic fatigue syndrome, and I think that people are very worried about both conditions being condensed into one.  And again, chronic fatigue is another condition that’s been given a very hard time, and probably consists of different sub-types, but has just been lumped into one thing. So yes, Long Covid is fine for me.

Yeah. I have an amazing GP who has been really kind to me, during the acute illness, right at the start, she kept tabs. I was very fortunate to catch up with her weekly at one point, and then fortnightly, and then spaced out. But she really did keep an eye on me, and that was, when she wasn’t around, the other partners in the practice were also fantastic.

There was one day I phoned, because the chest pain was so bad, and I ended up bursting into tears on the phone to the poor receptionist. They were all so lovely, they ended up getting me in that day for an ECG, and just so kind about it. I think it was difficult for the GP to know what to do with people like me, because it was a new condition, there was no service set up specifically for it. The hospitals weren’t really doing much in the way of outpatients, it was largely emergency work because of lockdown, and preparing for, you know, an onslaught of admissions. So, I think it was difficult for them to know what to do with me, really.

And I think, you can probably get a sense that a lot of this illness, because it’s all been new, a lot of it has just been me trying to work out what on earth is going on. And as a doctor, that has been really, really difficult. I can’t imagine what it would be like as a lay person. The neuro stuff, I thought had gotten better, so you know, the phantom smells, the tinnitus, I'd had some strange nerve pain, like a poker in my ear, really bizarre, but it was very, very painful. Strange kind of scalp sensations, as well, but all such vague and strange things, I didn’t even mention them to my GP, because I thought she might think I was completely mad [laugh].

And then I started paying more attention to other articles in the media. And one of those led me to a medical Twitter – I don’t have a Twitter account, but a lot of medics do. And there was a lot of chat about Long Covid, on there. And I ended up signing up, and asking someone, in a, just feeling completely desperate at that point, asking if I could join the group. So, they’d set up, a small peer group, to help with, pacing and management of symptoms. And she was so lovely and so kind, and introduced me to the Facebook group, with doctors.

So, I found, [group] I found, the doctors’ group, and a larger UK wide group. And, for me, these groups were really helpful. One of the things that was, difficult for me was, feeling like I was going…wondering if symptoms were in my head, because they seemed so preposterous, not understanding things, and feeling quite alone, because I didn’t know anyone else who had Covid, at that point. So, meeting other people who had the same symptoms, in the same order, at the same time, was just, my mind was blown really. and it gave me so much reassurance, and I suppose, some validation as well, and also, support. And then, you know, as I got better, I paid more attention to…in the doctors’ group, lots of symptoms were shared, and the, you know, there was a lot of discussion around what’s going on, and what treatments might help. And that was pivotal in my recovery – getting onto a beta blocker for the tachycardia. It was life-changing, literally.

Getting on a good antihistamine, as well, for the, all of the Mast Cell symptoms, that made a massive difference. and there’d been a period when I'd had really bad hayfever, before I found any of the Facebook groups, and I took, antihistamines for a couple of weeks, and I felt better. And afterwards I thought, “Why did I feel better during that period, could it have been the antihistamines?”, not really understanding the mechanism for why that would be helpful. But then, so through one of these groups, I found out, and I got onto something regular, and it really, both of those medications have been life changing. Yeah, so most of my learning, I guess, about Long Covid, has been through these groups.

I think, one thing I guess I haven’t said is, one of the most important things that you could do, if you encountered someone who has Long Covid, is just be compassionate and understanding, believe what they say. It’s all very real, it sounds preposterous, and wild, and unbelievable, but it’s very, very real, it’s happening. And it’s really scary, and difficult. So just, you know, the kindness from other people has really helped me. And when there have been moments…no, no one’s been particularly unkind…but there have been moments when people maybe haven’t believed the symptoms, or have dismissed symptoms, and it’s really had a profound effect on me, and put me back the way.

In the acute phase, it was really difficult. I was very fortunate to live with someone, and he has been amazing, he’s really helped, he did everything for a really long time. There was no way I was going to manage to stand, to cook, or you know, getting to the shower was, was difficult. He helped with a lot. I don’t know what I would have done if I was on my own, I think I probably, I just don’t know. I mean, I’m saying, I think I probably would have had to have gone and stayed with family, but then if you have Covid, you can’t, you know. So that must be really difficult for people. Gradually, and I mean, months in, things started getting better, and I started being able to do more. But for months, and months, he did everything.

Yeah, before getting unwell, I was really busy, I was working full time as a [job role], so forty hours a week. I had a social life, I would see people, I had interests, and hobbies. So, one of my, one of my main interests is plants, and gardening, absolutely love that. So, that would take up quite a bit of my time as well. I had, you know, I had basic interests like watching things on TV, and watching films, and reading, and drawing, and things like that. So, life was busy.

And how does that compare with life living with Long Covid, or Long Covid ongoing symptoms?

So, all of that, pretty much, went in the bin [laugh]. My hobbies, my interest, I couldn’t, I just felt so unwell. I certainly wasn’t able to do things like look after pot plants, and do gardening, so a lot of the plants died, or got given away. The garden grew wild for a year. Reading, I couldn’t do, I couldn’t concentrate, TV programmes, I would sit in front of, but it’s not being taken in. And it just felt like there was no joy to life. So, I could understand why people perhaps thought there was a stronger element of depression, because your interests, and your pleasure just go, when you're sick and not feeling well. Social interactions obviously became difficult because of lockdown, but also, they were just so mentally draining. There was a while, a period of a few weeks, I think, when I really struggled to have any conversation, it was difficult to follow the conversation, very difficult to take it in and digest it, and then formulate a response. And I had fairly marked word identification as well.

So, speaking to me was a little bit challenging, because I just couldn’t compute what people were saying, and the time, so the long delays before I would reply, and often, I just got the wrong end of the stick. And the socialising kind of went out the window, and work, of course, I couldn’t work. I tried to work through the first week, though, and then, I think I was pushing myself to do it, but words were jumping about on the screen. I was working from home, but I just couldn’t focus on anything, concentrate, and then the video, the flashing lights, the scintillation started. And I just, I stopped, around about a week in when I got really unwell.  So, not working was difficult because you miss the social contact, you miss, having a role, you miss having a purpose.

But also, I was really worried about the future, how was I going to have an income, what was I going to do with myself, what was I going to be able to do. So, all of those thoughts were going through my head, and I just felt like I needed to be back.

It took me a really long time before I accepted that I wasn’t well enough to work. I probably drove my managers mad, because I would email every couple of weeks and say, “Right, I think I'm getting better, I'll be back on Monday”, and then lo and behold, I would be ill again, you know. It was like a roller-coaster of symptoms, you know, these waves of feeling better, not feeling better. So, I accepted that I needed to be off. I was off for a really long time before I tried to go back to work, so about six months. Obviously, that didn’t work out, which was difficult, and then I had some more time off, and I'm trying again, and it’s going much better this time. So, I finally feel that I'm at a point now, fourteen months in, although I've got some symptoms, they’re mild enough that I can start doing some of these things. I feel like I've got the joy back, a bit.

I can, you know, I've started gardening, it’s tiring physically, but I'm doing that. I'm reading, listening to audiobooks, podcasts, watch TV. Seeing people which is fantastic, much more able to speak and hold a conversation, although it is tiring afterwards. So, I feel much more like myself, I feel I completely lost myself for about a year, and gradually over the past few months, things have been coming back. I'm pleased [laugh].

At what point in time did you think to yourself, I think this is me, you know, the stories that other people are sharing about prolonged symptoms, and kind of how many weeks in, or months in, did you identify?

Hmm, that’s a good question. I think it was quite late, I think it was quite late. It was after I had seen the neurologist, so we’re probably talking about three months in, before I understood that other people were having the same thing, and that it was quite common. So those first few months were really difficult, because I couldn’t understand why I wasn’t getting better. You know, the Government had said, this illness will give you a bit of a cough for two weeks, you know, take two weeks off work, here’s your fourteen-day certificate. Then, there I was, you know, months down the line, with evolving symptoms, different systems affected, things that the news hadn’t spoken about, or the press conferences hadn’t spoken about. It was really confusing, and overwhelming, and worrying.

So, I downloaded Headspace, not really thinking it would be great for me, to be honest, I was a bit of a cynic, I am a bit of a cynic, but started doing it, and what a difference. And I think it’s the breathing exercises, they’re really helpful to [stimulate] your vagus nerve.

Doing the breathing exercises, and, you know, the meditation with it, really, really made a huge difference. I've got out of the habit of doing that now, and I really must get back into it, because it really did help. When I could, I did gentle yoga. So, if you go on YouTube, there are lots of yoga videos for people with PoTS. So, you know, not, you don’t want to be doing the fast-paced, crazy stuff, but more of the, the gentle stretching, and breathing, is helpful. So, I found that good, as well.

And how does that compare with life living with Long Covid, or Long Covid ongoing symptoms?

So, all of that, pretty much, went in the bin my hobbies, my interest, I couldn’t, I just felt so unwell [laugh]. I certainly wasn’t able to do things like look after pot plants, and do gardening, so a lot of the plants died, or got given away, the garden grew wild for a year. Reading, I couldn’t do, I couldn’t concentrate, TV programmes, I would sit in front of, but it’s not being taken in. And it just felt like there was no joy to life. So, I could understand why people perhaps thought there was a stronger element of depression, because your interests, and your pleasure just go, when you're sick and not feeling well. Social interactions obviously became difficult because of lockdown, but also, they were just so mentally draining. There was a while, a period of a few weeks, I think, when I really struggled to have any conversation, it was difficult to follow the conversation, very difficult to take it in and digest it, and then formulate a response. And I had fairly marked word identification as well.

So, speaking to me was, a little bit challenging, because I just couldn’t compute what people were saying, and the time, so the long delays before I would reply, and often, I just got the wrong end of the stick. And the socialising kind of went out the window, and work, of course, I couldn’t work. I tried to work through the first week, and then, I think I was pushing myself to do it, but words were jumping about on the screen. I was working from home, but I just couldn’t focus on anything, concentrate, and then the visual, the flashing lights, the scintillation started. And I just, I stopped, around about a week in when I got really unwell. So, not working was difficult because you miss the social contact, you miss, having a role, you miss having a purpose.

So, I guess I was expecting, a bit like when you have the flu, to wake up one day and for things just to be better, but that never really came. I would describe it as waves of feeling unwell, and those waves would actually start numerous times a day, when I was in the very acute. I would have moments where I’d think that it’s passing, I must be getting better, now, that was the, that was the bad bit. Actually, it all just recurred over a period of weeks. I don’t know if that was my fever spiking, or the virus replicating, and increasing in my system, I really don’t know. But that was a persistent feature, and really difficult, because every time I got worse, it made me feel a little bit let down.

That second acute phase, where I was a bit doolally, in honesty, that kind of petered out, into a more subtle phase, which lasted, gosh, probably about a year, a year or more, so until now, in varying degrees of intensity. So, I have had what they’re calling Long Covid, I’ve had ongoing symptoms, some have been cognitive, so even now, I’m struggling to do the job that I was doing before I got Covid. When I was in the thick of it, maybe eight months ago, I was struggling to do things like read anything, watch TV, follow recipes, you know, I just, I couldn’t really do anything, I couldn’t work out how to put stuff in the washing machine, or hang out clothes on the clothesline, I couldn’t organise the process in my head. Things definitely have got better, in terms of the cognitive, in that way.

I also joined a, a group for doctors with Long Covid, which was super helpful for me, actually, because there was so much information. It was just so good to speak to other people who were going through the same thing. Because a lot of the symptoms that I had in that third phase, protracted Long Covid, were bizarre, and difficult for other people to believe, I think. And they affected just about every system going. So, headaches – if I start from the top and work my way down – headaches and migraines, I had ongoing visual disturbance, in terms of the scintillations, the flashing lights, for quite some time. A change in ability to focus my eyes, as well. postural headaches, so headaches when I would stand up. A lot of postural symptoms, so heartbeat absolutely racing, there were times just standing up. I remember feeling so unwell when I stood up to just go for a shower, so that’s moving from one room to another, really, my pulse went up to a hundred and forty something. And it felt as if, there were extra heartbeats as well, so ectopic heartbeats, and a definite feeling of the heartbeat in my chest. I would also feel dizzy, at the same time. And I came to understand through this group that I’d joined, that these symptoms fit with a condition I had never heard of before, called PoTS, postural orthostatic tachycardia syndrome

So, essentially, it’s the autonomic system that has gone a bit haywire, and is causing symptoms, like the tachycardia, like blood pressure dropping, people call it brain fog, the brain not being able to work properly, particularly when you’re upright. All of these things could be accounted for by this, so it was really good to discover that, because then I could look at what the treatments for that might be. So that did represent a bit of a turning point.

And I think, you can probably get a sense that a lot of this illness, because it’s all been new, a lot of it has just been me trying to work out what on earth is going on. And as a doctor, that has been really, really difficult. I can’t imagine what it would be like as a lay person. The neuro stuff, I thought had gotten better, so you know, the phantom smells, the tinnitus, I’d had some strange nerve pain, like a poker in my ear, really bizarre, but it was very, very painful. Strange kind of scalp sensations, as well, but all, all such vague and strange things, I didn’t even mention them to my GP, because I thought she might think I was completely mad [laughs]. So, I’d thought all of that stuff was behind me, and then at, probably, month ten, I developed peripheral neuropathy. So, I started getting ice-cold, and burning hot pains in my lower leg, and my feet, which was really uncomfortable. I also got it in my right hand, and my fingers, with some pins and needles, as well. And in addition to that, the initial leg pain, and restless legs at night, that came back at month ten, as well. So, I’m not entirely sure why it did.

One thing that I haven’t spoken about is, I suppose the psychological effects of Covid. So, I do so with a little bit of trepidation, because one of the things that has been really difficult, about this illness, is that a lot of people have wanted to pigeon-hole it as psychological, long Covid in particular. And when you're experiencing symptoms, when you’ve got palpable tachycardia, you know, when you have raised inflammatory markers, when you have palpably sore joints, it’s really difficult to think that people might think that there’s more of a psychological element to it.

I do understand there’s a psychological element to everything [laughs]. What I would say is, because the autonomic system is affected, for months and months, I felt like I was anxious, I felt like I was on edge, I felt like I was full of adrenaline, and I didn’t understand it at all.

I now know that can be secondary to PoTS, and that can be secondary to the dysautonomic symptoms. which gives me a bit more understanding, because logically, I wasn’t, I was trying to think, why am I feeling anxious about things, but I couldn’t give a good answer to that. I didn’t really understand why I would feel anxious, really, particularly when things were getting better. It was only when I read more about, PoTS, and the dysautonomic side of things that, it made more sense. It’s just adrenal, overload, really.