One of the things that we always ask people is whether you have any sort of messages for other people who are experiencing Long Covid? Sort of based on your own experiences.
 
I was thinking about that earlier and I’m not sure that I do because it’s not like I’ve worked out some way to magically defeat it and become well. I suppose if there was somebody who was just beginning to have Long Covid or they thought they might have it or they were in the recovery phase of having Covid itself then probably to rest as much as possible, maybe more than they think they need. And from my point of view, I probably should have rested, just taken time off work much earlier but I didn’t realise that was something that I needed to do, and I don’t know whether it would have made a difference at the time, but it would have been so hard to do in my daily life if I had probably [laughs]. So that’s probably the main thing.

It would be really interesting or useful as well to find out a bit about your experiences of healthcare. So, at what point did you seek healthcare support?
 
I think, so the first time was once we’d had the initial infection and it seemed to come back. And then went to see the GP again probably in August or something. Particularly about the migraines and I got some medication for that. And there’s been this kind of pattern throughout the autumn of going for tests, an ECG, I think an X-ray, blood tests and so on. But the NHS like none of it’s really, it’s really stretched at the moment so there’s these long waiting periods in-between scans. Or you might get a scan but then you don’t ever get a letter back to say what happened.
 
And I kind of figured out okay, wait a minute, I need to go and get in touch with the, the GP if I want to follow it up. So, there’s this kind of long running investigation going on in the background but still that’s not helping me particularly with the symptoms that I have there and then, I suppose.
 

And they have an occupational therapist and a pulmonary rehab physio so I saw, I spoke to both of those people over the ’phone so it must have been ’phone appointments they have. And that’s been really good, particularly the occupational therapist because she calls me up every month or something like that and, and you just talk through what’s happening and they talk about…she’s been teaching me about pacing and things like that. And it’s just really nice to have someone, the same person, talk to you and have enough time to talk to you. She might spend about half an hour, forty-five minutes on the ’phone with me. So that’s good because she remembers who I am and she remembers what I [laughs] told her last time. And she’s unfailingly kind and helpful and positive. So that, that’s been a really good thing.

And I think one of the good things about the occupational therapist there is that she’s quite happy to admit that she doesn’t know yet. That, you know, there’s lots of things that nobody knows. But she has got enough other patients with Long Covid that she’s beginning to kind of…she says that she learns a lot from them and she can listen and try and give advice to the other patients based on, on what people have told her. Or reassurance, or even just to know…well, for example, she said some people have found that the vaccinations helped them, and some people haven’t. So, you know, she…it’s not at the point where we have good clinical evidence but she’s able to kind of share other experiences.

And you indicated there that you, you appreciate the honesty about uncertainty. Could you just say a bit more about why that’s helpful or important?

I think it’s important because it’s not patronising. It’s, it’s helpful because it’s not patronising. it’s a kind of well “okay we’re going through this together what you tell me is important”. And it’s important, I think, that that honesty is accompanied by an earnest wish to help me with it and keep helping me with it. As opposed to, you know, if I went along to somebody and they went, “I don’t know. Nobody knows. See you later.” Then that would be incredibly frustrating. But I’ve always felt with the occupational therapist that she doesn’t know but she’s very willing to learn and she’s not going to abandon me halfway through.

You mentioned there about social media and about the role of patients in, in speaking about Long Covid. Have you sort of engaged in any of those online communities?

So, I have got the Slack channel for Body Politic one, I think? and I’ve taken part in a couple of surveys because I think it’s actually an amazing achievement to have got like the patient-led research that’s done there. And it’s obviously using the skills of the people that do that patient group. I’m not a participant on the forums though and I actually don’t look at it anymore because I find it quite upsetting. And I don’t want to dwell in the negatives. And I think there’s maybe a kind of…this really relating to survival guilt. I know that I am not as bad, as badly off as some people have, who have Long Covid, so I don’t want to, I don’t want to make people feel bad because I’m feeling better than they are, kind of thing. Like I’m feeling [recording breaks up]. That’s a bit hard to explain. Yeah, so I try…I don’t spend much time on social media in general but I particularly try not to get sucked into thinking about it all the time because I don’t think that’s very good for my mental health.

And I appreciate you said that it is, it can be upsetting so you don’t have to answer if you don’t want to, but was there a time when you were spending more time on social media? And particularly on sort of Long Covid groups? Or is that just something that you’ve, you’ve always kept at arms’ length?

I mean, I’ve never had a Facebook account and I stopped using Twitter even for work a couple of years ago. So, if I was going to look, if I was going to say to go to the Slack group it would be for a specific thing. Like I wanted to find out is this app any good, or has anyone got experience of this symptom or something like that. So, I try and do it as a targeted search but even that, I could find myself like on bad days gravitating towards that and it doesn’t, often doesn’t give you anything conclusive. And that doesn’t actually help. So, I try not to do that. You know, sometimes I look at articles as well, you know, scientific articles and so on which is maybe [laughs] slightly better for my mental health. But I still am trying to kind of get away from that because I think it leads to this cycle of worrying. Because you’re always reading and thinking, “Oh right, that’s about that group of patients, could that be me as well?” And because my background’s not in medicine I really can’t interpret a lot of the detail of it. And I guess I’m trying to get my head out of that space a little bit.

So if you look at the time when we were first sitting with it and the emphasis wasn’t so much on airborne stuff, it was all on cleaning down door handles and light switches and washing towels and all this kind of stuff. And at that time, me and my son were trying not to give it to my husband, so we were trying to do isolation within the house as well. And you know what it means in practice is a whole bunch of housework, extra housework, when you’re not feeling well [laughs]. You know, it’s like I can understand why it’s good advice but, you know, it’s not going to help the people who have it. And if you want to take a guess at predominantly who those people will be that are washing the light switches the most, they’ll be women, won’t they? And we know that it’s mostly women who are taking up the burden of home schooling. And that was happening maybe more so in the second wave of it. So, I think there’s a whole bunch of kind of like societal issues which are not helping with those experiences of long Covid.

And there’s probably a whole set of expectations about what women should be doing which is maybe not helping with…like I think it’s really hard to rest and it was almost impossible for me to rest with the whole home-schooling thing. Like, my husband was saying, “You know, I can do it.” And he was, he was doing…we were trying to divide it up equally. But I was just not in a head space where there was a really responsible role as a parent being asked of me and like I couldn’t not do that.

I suppose I touched on this already but I’m just thinking about what, what kinds of information is available for people about Long Covid? And how easy that is to access? Is there anything else that you wanted to say about that?

Yeah I think so there’s, there’s various things like British Heart Foundation maybe or some kind of lung charity, I forget. And then, Your Covid Recovery from the NHS so there is information there and you can tell it’s been written very clearly so it’s easy to understand when people aren’t feeling very well. The problem is though, for me, is that they lack detail and particularly when you’re trying to build up the exercise gradually. So I spent a while thinking, “Okay, we’ve got the, the whole increasing ten per cent each week of activity but is that only for a walk that you set out from your front door and you walk down the street? Or do you count incidental steps within the house? Or if you’re in the garden just pottering around, does that count?”

Normally, it wouldn’t make a bit of difference to most people but if you’re only walking about ten minutes it actually does because by the time you’ve wandered around and made your dinner then you might be at your ten minutes, kind of thing [laughs]. So, I think it would be really helpful to have clear guidance on that. And I think some of the guidance about pacing as well tells you quite a lot about the principles of how you might start with it but maybe to have more scenarios, more kind of complex scenarios, would be useful. Everybody’s circumstances are different but sometimes it’s quite hard to go from the principles to put it in practice.

It just is really, really constraining a lot of the time. You know, it’s quite difficult to adjust your life to that point. So, I think those things would be useful. Also, more guidance about, so I’ve got an Apple Watch with a heart rate monitor. And I’ve read that you can do pacing to keep your heart rate within a particular threshold, but I don’t feel confident about being able to do that. So it would be useful to have more advice on that kind of thing as well. Because I kind of feel that we’ve got quite a lot of technology which could be useful but what’s missing is knowing how to, or having some advice from a healthcare person about how to put it into practice and how to really use that tool as something which helps you.

I was going to ask you whether you had any idea about what might have made the difference?

No, and I think that’s one of the most annoying things is that you can spend a long time trying to guess what you did to try, like what you did to make the symptoms happen and or get worse. And actually, I think sometimes it’s random. Like, the virus does what the virus wants to do. And it’s obviously some that you use which are going to make worse because sometimes it’s just chance.

And how is it to be in that situation? What impact does it have on you?

I think it’s tiring in itself, it’s a long time to have had the same condition. I’ve found it really confusing as well. I think that’s one of the things, trying to understand what’s going on. And actually, already there’s quite a lot of seemingly contradictory advice and, you know, I’d be trying to read it and understand it and work out what it would mean for me. But then it maybe didn’t apply. And I think, you know I mentioned that I’ve been signed off work. That, I’d been avoiding that, like I didn’t think I needed that. I thought I was managing, I thought I could do the pacing thing. And when the doctor said that I should go off work, I was just so relieved because I didn’t have to keep trying every day to, to do my work and do all my things at home . But it was also hope because until he suggested that taking off time, taking time off work would help me to get better I didn’t have any particular reason to believe that I would get better. And kind of, some point I was just thinking, you know people get chronic fatigue and they maybe don’t recover to where they were, ever. Or maybe it takes a long time for them to get there. And I just didn’t really know whether I was going to be in that category or not. So, I suppose I was trying to, to accept it but actually I tried to accept it too early in the sense that the doctor reckons that I probably am going to get better with enough rest and so on. So that’s been a kind of rollercoaster that’s been confusing. And there’s been lots of healthcare people who, who’ve tried to help me who have been helpful but it’s just really confusing and frustrating.

One of the things that we always ask people is whether you have any sort of messages for other people who are experiencing Long Covid? Sort of based on your own experiences.
 
I was thinking about that earlier and I’m not sure that I do because it’s not like I’ve worked out some way to magically defeat it and become well. I suppose if there was somebody who was just beginning to have Long Covid or they thought they might have it or they were in the recovery phase of having Covid itself then probably to rest as much as possible, maybe more than they think they need. And from my point of view, I probably should have rested, just taken time off work much earlier but I didn’t realise that was something that I needed to do, and I don’t know whether it would have made a difference at the time, but it would have been so hard to do in my daily life if I had probably [laughs]. So that’s probably the main thing.

It would be really interesting or useful as well to find out a bit about your experiences of healthcare. So, at what point did you seek healthcare support?
 
I think, so the first time was once we’d had the initial infection and it seemed to come back. And then went to see the GP again probably in August or something. Particularly about the migraines and I got some medication for that. And there’s been this kind of pattern throughout the autumn of going for tests, an ECG, I think an X-ray, blood tests and so on. But the NHS like none of it’s really, it’s really stretched at the moment so there’s these long waiting periods in-between scans. Or you might get a scan but then you don’t ever get a letter back to say what happened.
 
And I kind of figured out okay, wait a minute, I need to go and get in touch with the, the GP if I want to follow it up. So, there’s this kind of long running investigation going on in the background but still that’s not helping me particularly with the symptoms that I have there and then, I suppose.
 

You mentioned there about social media and about the role of patients in, in speaking about Long Covid. Have you sort of engaged in any of those online communities?

So, I have got the Slack channel for Body Politic one, I think? and I’ve taken part in a couple of surveys because I think it’s actually an amazing achievement to have got like the patient-led research that’s done there. And it’s obviously using the skills of the people that do that patient group. I’m not a participant on the forums though and I actually don’t look at it anymore because I find it quite upsetting. And I don’t want to dwell in the negatives. And I think there’s maybe a kind of…this really relating to survival guilt. I know that I am not as bad, as badly off as some people have, who have Long Covid, so I don’t want to, I don’t want to make people feel bad because I’m feeling better than they are, kind of thing. Like I’m feeling [recording breaks up]. That’s a bit hard to explain. Yeah, so I try…I don’t spend much time on social media in general but I particularly try not to get sucked into thinking about it all the time because I don’t think that’s very good for my mental health.

And I appreciate you said that it is, it can be upsetting so you don’t have to answer if you don’t want to, but was there a time when you were spending more time on social media? And particularly on sort of Long Covid groups? Or is that just something that you’ve, you’ve always kept at arms’ length?

I mean, I’ve never had a Facebook account and I stopped using Twitter even for work a couple of years ago. So, if I was going to look, if I was going to say to go to the Slack group it would be for a specific thing. Like I wanted to find out is this app any good, or has anyone got experience of this symptom or something like that. So, I try and do it as a targeted search but even that, I could find myself like on bad days gravitating towards that and it doesn’t, often doesn’t give you anything conclusive. And that doesn’t actually help. So, I try not to do that. You know, sometimes I look at articles as well, you know, scientific articles and so on which is maybe [laughs] slightly better for my mental health. But I still am trying to kind of get away from that because I think it leads to this cycle of worrying. Because you’re always reading and thinking, “Oh right, that’s about that group of patients, could that be me as well?” And because my background’s not in medicine I really can’t interpret a lot of the detail of it. And I guess I’m trying to get my head out of that space a little bit.

So if you look at the time when we were first sitting with it and the emphasis wasn’t so much on airborne stuff, it was all on cleaning down door handles and light switches and washing towels and all this kind of stuff. And at that time, me and my son were trying not to give it to my husband, so we were trying to do isolation within the house as well. And you know what it means in practice is a whole bunch of housework, extra housework, when you’re not feeling well [laughs]. You know, it’s like I can understand why it’s good advice but, you know, it’s not going to help the people who have it. And if you want to take a guess at predominantly who those people will be that are washing the light switches the most, they’ll be women, won’t they? And we know that it’s mostly women who are taking up the burden of home schooling. And that was happening maybe more so in the second wave of it. So, I think there’s a whole bunch of kind of like societal issues which are not helping with those experiences of long Covid.

And there’s probably a whole set of expectations about what women should be doing which is maybe not helping with…like I think it’s really hard to rest and it was almost impossible for me to rest with the whole home-schooling thing. Like, my husband was saying, “You know, I can do it.” And he was, he was doing…we were trying to divide it up equally. But I was just not in a head space where there was a really responsible role as a parent being asked of me and like I couldn’t not do that.

And they have an occupational therapist and a pulmonary rehab physio so I saw, I spoke to both of those people over the ’phone so it must have been ’phone appointments they have. And that’s been really good, particularly the occupational therapist because she calls me up every month or something like that and, and you just talk through what’s happening and they talk about…she’s been teaching me about pacing and things like that. And it’s just really nice to have someone, the same person, talk to you and have enough time to talk to you. She might spend about half an hour, forty-five minutes on the ’phone with me. So that’s good because she remembers who I am and she remembers what I [laughs] told her last time. And she’s unfailingly kind and helpful and positive. So that, that’s been a really good thing.

And I think one of the good things about the occupational therapist there is that she’s quite happy to admit that she doesn’t know yet. That, you know, there’s lots of things that nobody knows. But she has got enough other patients with Long Covid that she’s beginning to kind of…she says that she learns a lot from them and she can listen and try and give advice to the other patients based on, on what people have told her. Or reassurance, or even just to know…well, for example, she said some people have found that the vaccinations helped them, and some people haven’t. So, you know, she…it’s not at the point where we have good clinical evidence but she’s able to kind of share other experiences.

And you indicated there that you, you appreciate the honesty about uncertainty. Could you just say a bit more about why that’s helpful or important?

I think it’s important because it’s not patronising. It’s, it’s helpful because it’s not patronising. it’s a kind of well “okay we’re going through this together what you tell me is important”. And it’s important, I think, that that honesty is accompanied by an earnest wish to help me with it and keep helping me with it. As opposed to, you know, if I went along to somebody and they went, “I don’t know. Nobody knows. See you later.” Then that would be incredibly frustrating. But I’ve always felt with the occupational therapist that she doesn’t know but she’s very willing to learn and she’s not going to abandon me halfway through.

I suppose I touched on this already but I’m just thinking about what, what kinds of information is available for people about Long Covid? And how easy that is to access? Is there anything else that you wanted to say about that?

Yeah I think so there’s, there’s various things like British Heart Foundation maybe or some kind of lung charity, I forget. And then, Your Covid Recovery from the NHS so there is information there and you can tell it’s been written very clearly so it’s easy to understand when people aren’t feeling very well. The problem is though, for me, is that they lack detail and particularly when you’re trying to build up the exercise gradually. So I spent a while thinking, “Okay, we’ve got the, the whole increasing ten per cent each week of activity but is that only for a walk that you set out from your front door and you walk down the street? Or do you count incidental steps within the house? Or if you’re in the garden just pottering around, does that count?”

Normally, it wouldn’t make a bit of difference to most people but if you’re only walking about ten minutes it actually does because by the time you’ve wandered around and made your dinner then you might be at your ten minutes, kind of thing [laughs]. So, I think it would be really helpful to have clear guidance on that. And I think some of the guidance about pacing as well tells you quite a lot about the principles of how you might start with it but maybe to have more scenarios, more kind of complex scenarios, would be useful. Everybody’s circumstances are different but sometimes it’s quite hard to go from the principles to put it in practice.

It just is really, really constraining a lot of the time. You know, it’s quite difficult to adjust your life to that point. So, I think those things would be useful. Also, more guidance about, so I’ve got an Apple Watch with a heart rate monitor. And I’ve read that you can do pacing to keep your heart rate within a particular threshold, but I don’t feel confident about being able to do that. So it would be useful to have more advice on that kind of thing as well. Because I kind of feel that we’ve got quite a lot of technology which could be useful but what’s missing is knowing how to, or having some advice from a healthcare person about how to put it into practice and how to really use that tool as something which helps you.

I was going to ask you whether you had any idea about what might have made the difference?

No, and I think that’s one of the most annoying things is that you can spend a long time trying to guess what you did to try, like what you did to make the symptoms happen and or get worse. And actually, I think sometimes it’s random. Like, the virus does what the virus wants to do. And it’s obviously some that you use which are going to make worse because sometimes it’s just chance.

And how is it to be in that situation? What impact does it have on you?

I think it’s tiring in itself, it’s a long time to have had the same condition. I’ve found it really confusing as well. I think that’s one of the things, trying to understand what’s going on. And actually, already there’s quite a lot of seemingly contradictory advice and, you know, I’d be trying to read it and understand it and work out what it would mean for me. But then it maybe didn’t apply. And I think, you know I mentioned that I’ve been signed off work. That, I’d been avoiding that, like I didn’t think I needed that. I thought I was managing, I thought I could do the pacing thing. And when the doctor said that I should go off work, I was just so relieved because I didn’t have to keep trying every day to, to do my work and do all my things at home . But it was also hope because until he suggested that taking off time, taking time off work would help me to get better I didn’t have any particular reason to believe that I would get better. And kind of, some point I was just thinking, you know people get chronic fatigue and they maybe don’t recover to where they were, ever. Or maybe it takes a long time for them to get there. And I just didn’t really know whether I was going to be in that category or not. So, I suppose I was trying to, to accept it but actually I tried to accept it too early in the sense that the doctor reckons that I probably am going to get better with enough rest and so on. So that’s been a kind of rollercoaster that’s been confusing. And there’s been lots of healthcare people who, who’ve tried to help me who have been helpful but it’s just really confusing and frustrating.