And then I, then I asked in the surgery because there’s been a whole big thing come through the last few months about histamine being a factor in Long Covid and this anti-inflammatory. And I have a history of high histamine, so I asked my normal GP about this link, and she didn’t really seem to know about it, she didn’t say. So, I thought well, it’s out there and people are sharing BMJ blog posts and articles about it, so if she’s not reading them then she’s not keeping up with the Long Covid news. So, that’s fine, that’s not her area but I need to speak to someone who is keeping up with these things.
 
So, I asked at the surgery at the reception if any of the GPs were particularly interested and they said one of them was, so I spoke to her. And she was definitely much more up to date with what was going on and…But she said, “There’s nothing we can do for you until somehow there’s something set up in Scotland. There’s nothing here just now.”
 
So, it’s kind of like some of the doctors are sort of they do their tests and their tests come out okay, so they don’t know what to do with you, so they just put you away sort of thing. So, that’s why there needs to be people who are interested enough and informed enough about Long Covid to understand how it’s affected people. So, that’s why some of the clinics in England are really good because that’s what they’ve got: they’ve got people who are up to date and following the research and interested, or maybe doing research themselves, and can then see the sort of slightly bigger picture.
 
Not just, your heart’s fine, I don’t know what to do with you. But there’s something going on with your heart, there’s something going on with your lungs, so yeah. So, that’s why we can’t just rely on, we don’t think, the sort of normal people that you would go to see because they…it’s not their area of interest or expertise.
 
So for you I suppose one of the big kind of final questions is actually just about what you think should be changed to improve supporting treatment for people with Long Covid. It sounds like access to specialists with up to date…
 
Yeah, and…
 
…interests.
 
…GPs to be…GPs to have enough knowledge about it to not dismiss people, because some people have been dismissed. There’s a GP in our group who said it’s called diagnostic bias, because like if I go, and you’re a woman of a certain age, you’re having this, so it must be menopause. Some of the men have gone… I mean, my GP didn’t say that but that’s what’s happened to other people. Some men have gone and it’s been like, well it’s just anxiety, stop watching the news, stop being in these groups, you know, you’re not going to make yourself better with that. But it’s not anxiety. I mean, they may well have anxiety. A lot of people with Long Covid have anxiety and depression and all sorts of issues, but that’s because they’ve got Long Covid and they’re not being listened to and there’s nobody helping us.

I suppose just relating to that whether there was any advice or message that you would want to give to healthcare professionals who might be supporting patients who have experience of Long Covid?
 
I would think, I would say that the healthcare people, whether they are already supportive or they’re not, you know, they’re kind of those people who are a bit hm about it, I would say they all need to have a very open mind about Long Covid. And these other, things like ME as well I’m sure are going to benefit from this, because it is not a normal thing, it doesn’t fit into their boxes. And that’s the trouble with, you know, when you see someone and they want you to fit into this box and you don’t because it’s not…it’s a multi-systemic thing. And I think we need to have an open mind. And they also have to have a very open mind about other therapies and other treatments, so like the supplements or like meditation and the benefits of acupuncture or, you know, other complementary therapies.
 
The people that have done maybe done the best are people that have gone to see functional medical practitioners who are more, you know, open to all sorts of things, so. And they’ve been given dietary supplements, alternative therapies and things, and they seem to have done the best. So, like in China apparently, they use qigong because that’s part of their thing, you know, qigong and tai chi. And that helps your system, that helps the body, and it’s a very gentle exercise. And, but here, you know, it’s not…you wouldn’t be told to go and do qigong or tai chi or have acupuncture; it isn’t something you would have.
 
So, I think we need to open our minds to these other things. And look at other countries and see what they’re doing and see what is beneficial to people. Because it’s not all just give you the pill, because there isn’t a pill at the moment.
 
 

And everyone’s got these stories of not being listened to or being dismissed by doctors and because Long Covid has been happening to people since last summer but not necessarily recognized by anyone or many people as a real thing until really Christmastime I think people started to really pick it up. So last year was very frustrating because you’re feeling this way. And I was lucky, I saw doctors that did seem to believe in it and understand it, but so many people didn’t; they had some very bad experiences. So, that’s why the groups have been so key to just keep yourself sane, having someone to speak to [laughs]. Because it’s difficult, families and friends don’t get it. I’ve gone from being this active, fit, buzzing around person to someone who barely leaves the house and has no energy to do very much if I do. It’s very small things. So, I just go to pick up a bit of shopping at the, you know, Tesco click-and-collect is about my event of the week [laughs]. So, it’s hard for people to understand, so you need that support, you need those groups.

Have you been offered your vaccine yet or not yet?
 
Yeah, I’ve had the, the, first one. We weren’t a special group or anything, it was just age, so yeah.
 
Did you mind saying how that experience was for you, how you felt afterwards?
 
Yeah, it was, it was, it was fine. I was…there was a lot of people saying they felt a lot better after the vaccines, so I had hopes I’d be miraculously cured [laughs]. But it hasn’t happened unfortunately. But I just felt like I had the flu. It was very much the flu, and that’s why it was very different to Covid. And people were saying to me, “Oh did you feel like you had Covid again?” And I said, “No, it was nothing like Covid.” I did feel shivery, and I did feel achy, and I had a day of that in bed, and then I had a couple of days of feeling tired, more tired than normal.
 
But like a different tired to the Covid tired, because the Covid tired is, it’s not like, it’s not like you’re tired with, with the illness; it’s just this fatigue that you can’t…It’s very hard to explain. It’s just an overwhelming, like I’ve said to people, it’s like a tsunami of…it just hits you. You cannot ignore it. It’s a wave that just comes over you, and if you resist it, you will make yourself very much worse.

So, the Facebook groups that formed, both internationally, nationally, and Scottish-based ones have been the most helpful. So, there were people in there saying they’d seen various physios, and one was a breathing specialist, so I spoke to her, and she was amazing. And she has helped, I was hyperventilating, and my diaphragm was stuck up, like it wasn’t going up and down, so I was unaware of all that but once you find out you realise that that’s what you’ve been doing [laughs]. And she said she’d worked with loads of Long Covid, and this seemed to be the case that a lot of us have bad breathing patterns anyway, I used to see that in my job, like people with tight shoulders who have often got bad breathing, but this was kind of different because it was so extreme. And she said, “It’s something to do with the virus caused your, even if you don’t have bad lung damage, it’s affected your breathing.” So, she gave me lots of exercises and strengthened my diaphragm, and that really helped with some of the brain fog because that’s, as she explained, “It’s like you’re not getting enough oxygen into your system, you’re just not getting enough, and it’s not getting to your brain, it’s not getting anywhere, so you’re constantly depriving yourself of oxygen.” Even if your, the oximeter that they give you on your finger shows you’ve got a reasonable amount of oxygen, it’s not getting to the right places, it’s not going, so your breathing is really important. So, that was really helpful.
 
And then I’ve sought out a rehab physio as well to help with building up some strength. Because obviously weeks in bed and months of lying around and not able to do anything you start to get completely deconditioned, so that doesn’t help your recovery. So, the rehab physio was…they give you exercises, just very gentle, like ridiculously gentle [laughs]. But it’s all you can manage at the time, so it’s great to have someone show you those, what to do.

So, I went on a little run round my block basically and, that was quite tiring [laughs]. It was, it was barely a run as far as I was concerned, but. So, I left it another week and thought right, I’ll just see how I feel. Went on another run and that one was terrible, and my heart rate was over two hundred and I thought I was going to pass out and, I was just like oh this isn’t right. So, I was in bed the next day, I had like a definite relapse, felt awful.
 
And then on the Monday I, that was the weekend, and on the Monday I felt well enough to take my dog a little walk, but when I was out I felt dreadful and I felt really odd, just can’t even describe it, just dizzy and odd. So, I went home and I said to my husband, “I don’t feel right, I feel this, I feel my heart was going and I just felt really strange.” So, he has a blood pressure monitor so he took my blood pressure and it was high, my heart was high, so we phoned the doctor and she went through a few things with me about, it’s not a heart attack basically, but this isn’t right so, you know, rest up.”
 
And she called the cardio department and they suggested putting me on beta-blockers, they said that’s what they’ve been doing with people post-Covid. So, they gave me then, and at this point I hadn’t seen a doctor, I hadn’t seen anybody, you weren’t to see anybody. And they flattened my blood pressure and heart rate so I could barely stand up [laughs]. So, called the doctor and she said, “Come off them right now. They’re not for you.”
 
So, at that point I said to her, “Do you not think I should be seen by someone? Because I don’t know what’s going on.”

And then also having the groups has been a major lifesaver because that, if I didn’t have that then I would have nobody to speak to.

And a few people have, like a friend of mine in fact who had Covid around the same time as me, she wasn’t in any of the groups and she’d been ill the same time as me, and I was telling her, “You need to be in these groups.” She was really down, and then when she joined the groups she was like, “Oh yeah, I should have been on these before [laughs] because suddenly it was like, oh I’m not so alone.” You know, so I don’t really look to my friends and family for the support other than maybe more practical support, if you like. But the actual like really emotional support really comes from the groups. And I don’t expect it of people I know. I mean, I don’t say they don’t give it, but I’m not going to them with it, laying it all on them.

Because they can’t really fulfil it. Especially, as I say, people haven’t seen me, so they still think of me as this other person, because I’m not the same person, that I was out with them last February, [laughs] you know, going for lunch and stuff. I wasn’t…I’m not that person at the moment, so yeah.

And am I right that most of the sort of, healthcare professionals that you’ve seen have been through kind of private services rather than the NHS?

Yes.

Or is…? Yes.

Yeah. There’s, now there’s some clinics in England, they’ve got some Long Covid clinics, and I think from what I’ve seen on Facebook groups that are UK wide there’s quite a mixed experience within those clinics. They are not all what they would like them to be, but there are a few that are really good. You’ve got the multidisciplinary folk like respiratory, cardio, cardiologists and physios and things. But in Scotland we don’t have any and there doesn’t seem to be any real plan for them. They seem to think that we can use the GPs and the existing services. But none of us see how that will work because at the moment there’s a very different experience with different GPs, some GPs have not been as supportive as you might expect; other GPs, like mine, have been great.

But they’ve got nothing to do for me, but they’ve been helpful if they can. and then you have to wait a long time to see the specialist. So, it’s kind of well, we don’t really see how this is going to work unless they have an awful lot of money they’re going to put into more specialists or something. I don’t know. It might come out in this year. But certainly, there’s nothing.

So, we have had to either have nothing or find it ourselves. So, my GP when I was telling her the people I was seeing, you said, “You’re basically making your own little Covid clinic that you would, because you’re seeing the people that you would see if you went to the Covid clinic in London where there’s a really good one.” And the [name of hospital] have set up these Long Covid rehab programmes, and they’re free, at the moment anyway, I don’t know what their plans are, but they’re free. And they are a rehab PT type person and, again it’s more about getting back to some strength, it’s…but it’s a good setup. And it’s not, instead of a clinic though because it’s not…there’s no medical people involved; it’s just to try and help you build up some strength so that you, as you heal you can do a bit more without setting yourself back. It’s kind of that you’ve got to do something to help yourself get some strength. And that’s on Zoom just now. And then in a few weeks’ time it’ll be in the gyms and there’ll be a bit more exercise going on. But that’s all we’ve got.

So, most people in the group, have managed to either get private or they’re just struggling along without anything really. It’s just very sad to be honest.

So, I would say yeah, we need the GP as first point of contact to be, even if it’s just one GP in the practice, like I found one GP, but you just need someone that they can say, "well if it’s Long Covid speak to them” and they’ll know about it. And then yes, we need a clinic or some sort of central hub that you can go to, and they can assess you and say well, like for me it’s my heart, so you go and see the cardiologist; for someone else it’s their lungs or their breathing isn’t right they can go and see the respiratory guy. And then they’ve got people to help you with those things. So, mainly that is physios, occupational therapists, maybe like diet, nutrition, if there’s factors involved with that, like with anti-inflammatory or, like as I say if people are anxious and things there would be counselling and these things. So, access to the people that can help you. And not everyone will need all of them.

But, even if they’re just available to go to them or have to be at that central place, but even if they’re just there to be referred to, there needs to be some sort of central decision maker. Because if the GP is just sending you to the normal referral thing there’s no fast track, there’s no nothing, you know there’s no process, so you’re just in the queue with all the other people. So, that person isn’t necessarily going to know about Long Covid, because it is different. Like I say, I don’t have a heart problem, but I’ve got heart problems from my heart rate, but my heart’s fine. So, it isn’t actually affecting my heart; it’s inflammation and it’s my nervous system. So, it is a…it’s difficult.

But I think that’s what we would like.

Like last summer when people were a bit more free, I wasn’t well enough to go anywhere so I wasn’t doing anything. So, I think that’s when it kind of hits more is when other people are going out and arranging lunches or something, I think that’s when it’ll be harder if I don’t feel well enough to go.

And are you starting to sort of see, see signs of healing from implementing pacing? Or is it too early to, to say?

No, I would say the weeks I do the most wellbeing stuff, like I remember to do the meditation and I’m careful with my pacing and I really have nothing to drain me, I’ve had weeks where I’ve thought actually I am feeling fine, I feel fine. And then you’re sort of, oh but wait a minute, am I fine, because I don’t want to have a relapse. But it’s hard then to keep yourself back from just going oh I could walk the dog a bit further today or I could, I could cook a nice meal, because I can’t stand to cook too much. But then I’ve had a few times when I’ve done these things and then I’ve been back, like I say, I’ve had a relapse, I’ve had a bad week [laughs]. And then you’re not, you don’t come out of that relapse to where you were. So, that’s probably, the hard bit is keeping doing it when you feel better. It’s like I used to say to my clients, it’s like I gave them stretches for an injury and they would stop them when it stopped being sore, but that’s actually when you need to keep doing them most because that’s how you really feel it. And it’s the same with this is that you have to remember to keep up with the good stuff as much as you can, when you’re feeling better.

And I spoke to someone who had ME and they got better by doing this really careful pacing and all these good things over, over several, they took several years by the time they got to know about doing it. And I said, “How did you know you’re better?” because she’s better. And she said she just had a patch of time where she suddenly felt she had extra energy, she had more energy than she, you know, she needed. And she did a couple of things and she didn’t get ill again, so she was kind of like, okay, I can sort of tentatively start to go back to normal. But it’s that extra energy that you don’t have. So, even when I felt well on the weeks I’ve had a good week I wouldn’t say I’ve had extra energy; I’ve just started to feel like, I feel almost normal, I feel, you know. But you’re not really, but you have to just be tentative about getting back to it. But it does give you hope that you can get there. And that’s why it’s worth doing the work, because it’s a, it’s a job to have this kind of thing and do all the self-care. It is, it’s a full-time job some days [laughs].

But the fatigue lady, she said, “What you also need is positive rest” which is when you’re doing nothing, which is the hardest to do of all because if you lie down, and you’re like, I used to listen to an audio book or a meditation or whatever, but you’re still using, your brain’s still having to do something there, even if you’re feeling relaxed it’s still working. So, you have to have periods of time when you just lie down, and you don’t necessarily fall asleep, but you just lie down. So, they actually give you back your energy quicker if you can make yourself do it for like ten, fifteen minutes. It’s, it’s a long time to just lie there and not do anything. And you’re not trying to stop your thoughts, you’re not trying to be like meditation, it’s just lie down. I usually put an eye thing over my eyes and, if there’s noise, I’ll put earplugs in and just relax. And it just lets your system, and to be honest I usually do sort of fall asleep slightly because you are actually that tired, but you don’t know you’re that tired. So, as soon as I lie down, I generally I will fall asleep, which isn’t something I would have done before.

But that just shows you’re still tired, even if you feel okay, you think you feel okay, you’ve still got this level of exhaustion in you that you, you want to sleep all the time. So, the pacing is, it’s a really important thing to do and to get into the habit of doing quite early on. I think the sooner you can get into that and realise that you’re going to have to be slow and careful and not plan a day of busy things anymore, you’re going to have to have a little bit of time doing this and then rest, and then a little bit of time doing that, and then rest, and it, it, it sounds very boring but it’s actually how you start to see yourself heal. So, it’s very important.

I think with any kind of post-viral situation because you’re using so much energy trying to heal, that you’re unaware that you’re using because you’re, you’re not aware of that, and the average person, average healthy person has no concept of how much energy they’re using to do the slightest task. So, like I mentioned I could only read for ten minutes. You know, that’s ridiculous to me, I used to read all day. And things like watching TV, I couldn’t concentrate on anything that was too complex. Like I couldn’t have watched a subtitled programme because that would be too much. I managed to drive myself to the shops to pick up the order, and I put the radio on because I used to always have music in the car, and it was like I couldn’t stand it, it was too much. But that’s the energy it takes to listen and drive, it uses so much energy, you just don’t realise how much brain energy you’re using. I was doing jigsaws and I was- I fell asleep on top of a jigsaw because I was so exhausted doing it after about twenty minutes [laughs]. And it’s like, because jigsaws are really hard on the brain, they’re really good as a, a thing to do, but they’re hard on the brain because of using different aspects. So, you think you’re pacing because you’re doing jigsaws and you’re not doing anything really, but you’re not, because that’s still using energy. So, to pace properly you need to have a very strict almost timetable of rests. So, it starts with, with me it was like I could do something for fifteen minutes and then I’d have a half hour rest, and that would be my day. If I didn’t do that I would have to sleep all afternoon. If I had a morning of doing something I would be in bed all afternoon. And that going to bed is not a choice that you make. It’s not I think I’ll go to bed this afternoon; it’s like if I don’t go to bed now I am going to fall down. Like I said, I fell asleep on my jigsaw. So, it’s, it’s just, bam! You’ve gone.

I don’t have too many different symptoms now. I just seem to have the fatigue and the brain fog, and the heart rate thing. And so, there’s things associated with that, like I said, the dizziness; but they all kind of come together. But certainly, in the early days of both Covid and long Covid it was like that, it was like you don’t know what’s coming next, are these random symptoms. And certainly, from reading people’s stories in the Facebook groups some people have a lot more ongoing different symptoms and they’ll say, “I’m, I’m losing my hair all of a sudden.” Or they get, rashes and things. And it’ll just come and go and there’s no real, but it’s just your whole system is just so affected.

I did get shingles last August, and I’ve had shingles, I’ve had chicken pox before, and I got shingles in the August. And that was, again that’s really common that things that are sort of, like shingles lies dormant in your system, so anything you’ve kind of carried on from previous experience will flare up [laughs]. So, if someone’s prone to something it will come back after Covid; it just seems to be it, it ignites all these things again. So, people who’ve had skin issues or something that will come back.

But yeah, a lot of people have lost their hair. I haven’t luckily, or eyelashes and things. So, it just, it just affects every system, so anything can happen really because you don’t know what that will bring if it affects a particular system. So, stomach issues, I have reflux that I didn’t have before; I still have that at night. and other people have, like, gut issues, that come and go as well. And people seem to be more likely to have allergies, or if you’ve been slightly allergic, you’ll be more allergic, and things like that. So, histamine issue like seems to be a big deal as well. So, they’ve been more affected by hay fever than they were. I am prone to sinus problems, and I get that, that comes back. If I’m having a bad patch that will flare up. So, it’s just like whatever your little weakness is or has been it, it comes back because of this, your body’s reaction to this virus.

I got better, I felt like I was over it. I had a couple of weeks I felt I’m getting back to normal. And because my focus before it had been on the half marathon training, and at that time we thought it’s just a virus, you’re over it, and things were locked down, but they were talking about it all being open by the summer. So, my half marathon was September, so I thought I’ll get back to training, I’ve lost, you know, almost two months. So, I went on a little run round my block basically [laughs] and, that was quite tiring. It was, it was barely a run as far as I was concerned. So, I left it another week and thought right, I’ll just see how I feel. Went on another run and that one was terrible, and my heart rate was over two hundred and I thought I was going to pass out and, I was just like oh this isn’t right. So, I was in bed the next day, I had like a definite relapse, felt awful. And then on the Monday I, that was the weekend, and on the Monday, I felt well enough to take my dog on a little walk, but when I was out, I felt dreadful and I felt really odd, just can’t even describe it, just dizzy and odd. So, I went home, and I said to my husband, “I don’t feel right, I feel this, I feel my heart was going and I just felt really strange.” So, he has a blood pressure monitor, so he took my blood pressure and it was high, my heart rate was high, so we phoned the doctor and she went through a few things with me about, it’s not a heart attack basically, but this isn’t right so, you know, rest up.”

And then I, then I asked in the surgery because there’s been a whole big thing come through the last few months about histamine being a factor in Long Covid and this anti-inflammatory. And I have a history of high histamine, so I asked my normal GP about this link, and she didn’t really seem to know about it, she didn’t say. So, I thought well, it’s out there and people are sharing BMJ blog posts and articles about it, so if she’s not reading them then she’s not keeping up with the Long Covid news. So, that’s fine, that’s not her area but I need to speak to someone who is keeping up with these things.
 
So, I asked at the surgery at the reception if any of the GPs were particularly interested and they said one of them was, so I spoke to her. And she was definitely much more up to date with what was going on and…But she said, “There’s nothing we can do for you until somehow there’s something set up in Scotland. There’s nothing here just now.”
 
So, it’s kind of like some of the doctors are sort of they do their tests and their tests come out okay, so they don’t know what to do with you, so they just put you away sort of thing. So, that’s why there needs to be people who are interested enough and informed enough about Long Covid to understand how it’s affected people. So, that’s why some of the clinics in England are really good because that’s what they’ve got: they’ve got people who are up to date and following the research and interested, or maybe doing research themselves, and can then see the sort of slightly bigger picture.
 
Not just, your heart’s fine, I don’t know what to do with you. But there’s something going on with your heart, there’s something going on with your lungs, so yeah. So, that’s why we can’t just rely on, we don’t think, the sort of normal people that you would go to see because they…it’s not their area of interest or expertise.
 
So for you I suppose one of the big kind of final questions is actually just about what you think should be changed to improve supporting treatment for people with Long Covid. It sounds like access to specialists with up to date…
 
Yeah, and…
 
…interests.
 
…GPs to be…GPs to have enough knowledge about it to not dismiss people, because some people have been dismissed. There’s a GP in our group who said it’s called diagnostic bias, because like if I go, and you’re a woman of a certain age, you’re having this, so it must be menopause. Some of the men have gone… I mean, my GP didn’t say that but that’s what’s happened to other people. Some men have gone and it’s been like, well it’s just anxiety, stop watching the news, stop being in these groups, you know, you’re not going to make yourself better with that. But it’s not anxiety. I mean, they may well have anxiety. A lot of people with Long Covid have anxiety and depression and all sorts of issues, but that’s because they’ve got Long Covid and they’re not being listened to and there’s nobody helping us.

I suppose just relating to that whether there was any advice or message that you would want to give to healthcare professionals who might be supporting patients who have experience of Long Covid?
 
I would think, I would say that the healthcare people, whether they are already supportive or they’re not, you know, they’re kind of those people who are a bit hm about it, I would say they all need to have a very open mind about Long Covid. And these other, things like ME as well I’m sure are going to benefit from this, because it is not a normal thing, it doesn’t fit into their boxes. And that’s the trouble with, you know, when you see someone and they want you to fit into this box and you don’t because it’s not…it’s a multi-systemic thing. And I think we need to have an open mind. And they also have to have a very open mind about other therapies and other treatments, so like the supplements or like meditation and the benefits of acupuncture or, you know, other complementary therapies.
 
The people that have done maybe done the best are people that have gone to see functional medical practitioners who are more, you know, open to all sorts of things, so. And they’ve been given dietary supplements, alternative therapies and things, and they seem to have done the best. So, like in China apparently, they use qigong because that’s part of their thing, you know, qigong and tai chi. And that helps your system, that helps the body, and it’s a very gentle exercise. And, but here, you know, it’s not…you wouldn’t be told to go and do qigong or tai chi or have acupuncture; it isn’t something you would have.
 
So, I think we need to open our minds to these other things. And look at other countries and see what they’re doing and see what is beneficial to people. Because it’s not all just give you the pill, because there isn’t a pill at the moment.
 
 

And everyone’s got these stories of not being listened to or being dismissed by doctors and because Long Covid has been happening to people since last summer but not necessarily recognized by anyone or many people as a real thing until really Christmastime I think people started to really pick it up. So last year was very frustrating because you’re feeling this way. And I was lucky, I saw doctors that did seem to believe in it and understand it, but so many people didn’t; they had some very bad experiences. So, that’s why the groups have been so key to just keep yourself sane, having someone to speak to [laughs]. Because it’s difficult, families and friends don’t get it. I’ve gone from being this active, fit, buzzing around person to someone who barely leaves the house and has no energy to do very much if I do. It’s very small things. So, I just go to pick up a bit of shopping at the, you know, Tesco click-and-collect is about my event of the week [laughs]. So, it’s hard for people to understand, so you need that support, you need those groups.

Have you been offered your vaccine yet or not yet?
 
Yeah, I’ve had the, the, first one. We weren’t a special group or anything, it was just age, so yeah.
 
Did you mind saying how that experience was for you, how you felt afterwards?
 
Yeah, it was, it was, it was fine. I was…there was a lot of people saying they felt a lot better after the vaccines, so I had hopes I’d be miraculously cured [laughs]. But it hasn’t happened unfortunately. But I just felt like I had the flu. It was very much the flu, and that’s why it was very different to Covid. And people were saying to me, “Oh did you feel like you had Covid again?” And I said, “No, it was nothing like Covid.” I did feel shivery, and I did feel achy, and I had a day of that in bed, and then I had a couple of days of feeling tired, more tired than normal.
 
But like a different tired to the Covid tired, because the Covid tired is, it’s not like, it’s not like you’re tired with, with the illness; it’s just this fatigue that you can’t…It’s very hard to explain. It’s just an overwhelming, like I’ve said to people, it’s like a tsunami of…it just hits you. You cannot ignore it. It’s a wave that just comes over you, and if you resist it, you will make yourself very much worse.

So, the Facebook groups that formed, both internationally, nationally, and Scottish-based ones have been the most helpful. So, there were people in there saying they’d seen various physios, and one was a breathing specialist, so I spoke to her, and she was amazing. And she has helped, I was hyperventilating, and my diaphragm was stuck up, like it wasn’t going up and down, so I was unaware of all that but once you find out you realise that that’s what you’ve been doing [laughs]. And she said she’d worked with loads of Long Covid, and this seemed to be the case that a lot of us have bad breathing patterns anyway, I used to see that in my job, like people with tight shoulders who have often got bad breathing, but this was kind of different because it was so extreme. And she said, “It’s something to do with the virus caused your, even if you don’t have bad lung damage, it’s affected your breathing.” So, she gave me lots of exercises and strengthened my diaphragm, and that really helped with some of the brain fog because that’s, as she explained, “It’s like you’re not getting enough oxygen into your system, you’re just not getting enough, and it’s not getting to your brain, it’s not getting anywhere, so you’re constantly depriving yourself of oxygen.” Even if your, the oximeter that they give you on your finger shows you’ve got a reasonable amount of oxygen, it’s not getting to the right places, it’s not going, so your breathing is really important. So, that was really helpful.
 
And then I’ve sought out a rehab physio as well to help with building up some strength. Because obviously weeks in bed and months of lying around and not able to do anything you start to get completely deconditioned, so that doesn’t help your recovery. So, the rehab physio was…they give you exercises, just very gentle, like ridiculously gentle [laughs]. But it’s all you can manage at the time, so it’s great to have someone show you those, what to do.

So, I went on a little run round my block basically and, that was quite tiring [laughs]. It was, it was barely a run as far as I was concerned, but. So, I left it another week and thought right, I’ll just see how I feel. Went on another run and that one was terrible, and my heart rate was over two hundred and I thought I was going to pass out and, I was just like oh this isn’t right. So, I was in bed the next day, I had like a definite relapse, felt awful.
 
And then on the Monday I, that was the weekend, and on the Monday I felt well enough to take my dog a little walk, but when I was out I felt dreadful and I felt really odd, just can’t even describe it, just dizzy and odd. So, I went home and I said to my husband, “I don’t feel right, I feel this, I feel my heart was going and I just felt really strange.” So, he has a blood pressure monitor so he took my blood pressure and it was high, my heart was high, so we phoned the doctor and she went through a few things with me about, it’s not a heart attack basically, but this isn’t right so, you know, rest up.”
 
And she called the cardio department and they suggested putting me on beta-blockers, they said that’s what they’ve been doing with people post-Covid. So, they gave me then, and at this point I hadn’t seen a doctor, I hadn’t seen anybody, you weren’t to see anybody. And they flattened my blood pressure and heart rate so I could barely stand up [laughs]. So, called the doctor and she said, “Come off them right now. They’re not for you.”
 
So, at that point I said to her, “Do you not think I should be seen by someone? Because I don’t know what’s going on.”

And then also having the groups has been a major lifesaver because that, if I didn’t have that then I would have nobody to speak to.

And a few people have, like a friend of mine in fact who had Covid around the same time as me, she wasn’t in any of the groups and she’d been ill the same time as me, and I was telling her, “You need to be in these groups.” She was really down, and then when she joined the groups she was like, “Oh yeah, I should have been on these before [laughs] because suddenly it was like, oh I’m not so alone.” You know, so I don’t really look to my friends and family for the support other than maybe more practical support, if you like. But the actual like really emotional support really comes from the groups. And I don’t expect it of people I know. I mean, I don’t say they don’t give it, but I’m not going to them with it, laying it all on them.

Because they can’t really fulfil it. Especially, as I say, people haven’t seen me, so they still think of me as this other person, because I’m not the same person, that I was out with them last February, [laughs] you know, going for lunch and stuff. I wasn’t…I’m not that person at the moment, so yeah.

And am I right that most of the sort of, healthcare professionals that you’ve seen have been through kind of private services rather than the NHS?

Yes.

Or is…? Yes.

Yeah. There’s, now there’s some clinics in England, they’ve got some Long Covid clinics, and I think from what I’ve seen on Facebook groups that are UK wide there’s quite a mixed experience within those clinics. They are not all what they would like them to be, but there are a few that are really good. You’ve got the multidisciplinary folk like respiratory, cardio, cardiologists and physios and things. But in Scotland we don’t have any and there doesn’t seem to be any real plan for them. They seem to think that we can use the GPs and the existing services. But none of us see how that will work because at the moment there’s a very different experience with different GPs, some GPs have not been as supportive as you might expect; other GPs, like mine, have been great.

But they’ve got nothing to do for me, but they’ve been helpful if they can. and then you have to wait a long time to see the specialist. So, it’s kind of well, we don’t really see how this is going to work unless they have an awful lot of money they’re going to put into more specialists or something. I don’t know. It might come out in this year. But certainly, there’s nothing.

So, we have had to either have nothing or find it ourselves. So, my GP when I was telling her the people I was seeing, you said, “You’re basically making your own little Covid clinic that you would, because you’re seeing the people that you would see if you went to the Covid clinic in London where there’s a really good one.” And the [name of hospital] have set up these Long Covid rehab programmes, and they’re free, at the moment anyway, I don’t know what their plans are, but they’re free. And they are a rehab PT type person and, again it’s more about getting back to some strength, it’s…but it’s a good setup. And it’s not, instead of a clinic though because it’s not…there’s no medical people involved; it’s just to try and help you build up some strength so that you, as you heal you can do a bit more without setting yourself back. It’s kind of that you’ve got to do something to help yourself get some strength. And that’s on Zoom just now. And then in a few weeks’ time it’ll be in the gyms and there’ll be a bit more exercise going on. But that’s all we’ve got.

So, most people in the group, have managed to either get private or they’re just struggling along without anything really. It’s just very sad to be honest.

So, I would say yeah, we need the GP as first point of contact to be, even if it’s just one GP in the practice, like I found one GP, but you just need someone that they can say, "well if it’s Long Covid speak to them” and they’ll know about it. And then yes, we need a clinic or some sort of central hub that you can go to, and they can assess you and say well, like for me it’s my heart, so you go and see the cardiologist; for someone else it’s their lungs or their breathing isn’t right they can go and see the respiratory guy. And then they’ve got people to help you with those things. So, mainly that is physios, occupational therapists, maybe like diet, nutrition, if there’s factors involved with that, like with anti-inflammatory or, like as I say if people are anxious and things there would be counselling and these things. So, access to the people that can help you. And not everyone will need all of them.

But, even if they’re just available to go to them or have to be at that central place, but even if they’re just there to be referred to, there needs to be some sort of central decision maker. Because if the GP is just sending you to the normal referral thing there’s no fast track, there’s no nothing, you know there’s no process, so you’re just in the queue with all the other people. So, that person isn’t necessarily going to know about Long Covid, because it is different. Like I say, I don’t have a heart problem, but I’ve got heart problems from my heart rate, but my heart’s fine. So, it isn’t actually affecting my heart; it’s inflammation and it’s my nervous system. So, it is a…it’s difficult.

But I think that’s what we would like.

Like last summer when people were a bit more free, I wasn’t well enough to go anywhere so I wasn’t doing anything. So, I think that’s when it kind of hits more is when other people are going out and arranging lunches or something, I think that’s when it’ll be harder if I don’t feel well enough to go.

And are you starting to sort of see, see signs of healing from implementing pacing? Or is it too early to, to say?

No, I would say the weeks I do the most wellbeing stuff, like I remember to do the meditation and I’m careful with my pacing and I really have nothing to drain me, I’ve had weeks where I’ve thought actually I am feeling fine, I feel fine. And then you’re sort of, oh but wait a minute, am I fine, because I don’t want to have a relapse. But it’s hard then to keep yourself back from just going oh I could walk the dog a bit further today or I could, I could cook a nice meal, because I can’t stand to cook too much. But then I’ve had a few times when I’ve done these things and then I’ve been back, like I say, I’ve had a relapse, I’ve had a bad week [laughs]. And then you’re not, you don’t come out of that relapse to where you were. So, that’s probably, the hard bit is keeping doing it when you feel better. It’s like I used to say to my clients, it’s like I gave them stretches for an injury and they would stop them when it stopped being sore, but that’s actually when you need to keep doing them most because that’s how you really feel it. And it’s the same with this is that you have to remember to keep up with the good stuff as much as you can, when you’re feeling better.

And I spoke to someone who had ME and they got better by doing this really careful pacing and all these good things over, over several, they took several years by the time they got to know about doing it. And I said, “How did you know you’re better?” because she’s better. And she said she just had a patch of time where she suddenly felt she had extra energy, she had more energy than she, you know, she needed. And she did a couple of things and she didn’t get ill again, so she was kind of like, okay, I can sort of tentatively start to go back to normal. But it’s that extra energy that you don’t have. So, even when I felt well on the weeks I’ve had a good week I wouldn’t say I’ve had extra energy; I’ve just started to feel like, I feel almost normal, I feel, you know. But you’re not really, but you have to just be tentative about getting back to it. But it does give you hope that you can get there. And that’s why it’s worth doing the work, because it’s a, it’s a job to have this kind of thing and do all the self-care. It is, it’s a full-time job some days [laughs].

But the fatigue lady, she said, “What you also need is positive rest” which is when you’re doing nothing, which is the hardest to do of all because if you lie down, and you’re like, I used to listen to an audio book or a meditation or whatever, but you’re still using, your brain’s still having to do something there, even if you’re feeling relaxed it’s still working. So, you have to have periods of time when you just lie down, and you don’t necessarily fall asleep, but you just lie down. So, they actually give you back your energy quicker if you can make yourself do it for like ten, fifteen minutes. It’s, it’s a long time to just lie there and not do anything. And you’re not trying to stop your thoughts, you’re not trying to be like meditation, it’s just lie down. I usually put an eye thing over my eyes and, if there’s noise, I’ll put earplugs in and just relax. And it just lets your system, and to be honest I usually do sort of fall asleep slightly because you are actually that tired, but you don’t know you’re that tired. So, as soon as I lie down, I generally I will fall asleep, which isn’t something I would have done before.

But that just shows you’re still tired, even if you feel okay, you think you feel okay, you’ve still got this level of exhaustion in you that you, you want to sleep all the time. So, the pacing is, it’s a really important thing to do and to get into the habit of doing quite early on. I think the sooner you can get into that and realise that you’re going to have to be slow and careful and not plan a day of busy things anymore, you’re going to have to have a little bit of time doing this and then rest, and then a little bit of time doing that, and then rest, and it, it, it sounds very boring but it’s actually how you start to see yourself heal. So, it’s very important.

I think with any kind of post-viral situation because you’re using so much energy trying to heal, that you’re unaware that you’re using because you’re, you’re not aware of that, and the average person, average healthy person has no concept of how much energy they’re using to do the slightest task. So, like I mentioned I could only read for ten minutes. You know, that’s ridiculous to me, I used to read all day. And things like watching TV, I couldn’t concentrate on anything that was too complex. Like I couldn’t have watched a subtitled programme because that would be too much. I managed to drive myself to the shops to pick up the order, and I put the radio on because I used to always have music in the car, and it was like I couldn’t stand it, it was too much. But that’s the energy it takes to listen and drive, it uses so much energy, you just don’t realise how much brain energy you’re using. I was doing jigsaws and I was- I fell asleep on top of a jigsaw because I was so exhausted doing it after about twenty minutes [laughs]. And it’s like, because jigsaws are really hard on the brain, they’re really good as a, a thing to do, but they’re hard on the brain because of using different aspects. So, you think you’re pacing because you’re doing jigsaws and you’re not doing anything really, but you’re not, because that’s still using energy. So, to pace properly you need to have a very strict almost timetable of rests. So, it starts with, with me it was like I could do something for fifteen minutes and then I’d have a half hour rest, and that would be my day. If I didn’t do that I would have to sleep all afternoon. If I had a morning of doing something I would be in bed all afternoon. And that going to bed is not a choice that you make. It’s not I think I’ll go to bed this afternoon; it’s like if I don’t go to bed now I am going to fall down. Like I said, I fell asleep on my jigsaw. So, it’s, it’s just, bam! You’ve gone.

I don’t have too many different symptoms now. I just seem to have the fatigue and the brain fog, and the heart rate thing. And so, there’s things associated with that, like I said, the dizziness; but they all kind of come together. But certainly, in the early days of both Covid and long Covid it was like that, it was like you don’t know what’s coming next, are these random symptoms. And certainly, from reading people’s stories in the Facebook groups some people have a lot more ongoing different symptoms and they’ll say, “I’m, I’m losing my hair all of a sudden.” Or they get, rashes and things. And it’ll just come and go and there’s no real, but it’s just your whole system is just so affected.

I did get shingles last August, and I’ve had shingles, I’ve had chicken pox before, and I got shingles in the August. And that was, again that’s really common that things that are sort of, like shingles lies dormant in your system, so anything you’ve kind of carried on from previous experience will flare up [laughs]. So, if someone’s prone to something it will come back after Covid; it just seems to be it, it ignites all these things again. So, people who’ve had skin issues or something that will come back.

But yeah, a lot of people have lost their hair. I haven’t luckily, or eyelashes and things. So, it just, it just affects every system, so anything can happen really because you don’t know what that will bring if it affects a particular system. So, stomach issues, I have reflux that I didn’t have before; I still have that at night. and other people have, like, gut issues, that come and go as well. And people seem to be more likely to have allergies, or if you’ve been slightly allergic, you’ll be more allergic, and things like that. So, histamine issue like seems to be a big deal as well. So, they’ve been more affected by hay fever than they were. I am prone to sinus problems, and I get that, that comes back. If I’m having a bad patch that will flare up. So, it’s just like whatever your little weakness is or has been it, it comes back because of this, your body’s reaction to this virus.

I got better, I felt like I was over it. I had a couple of weeks I felt I’m getting back to normal. And because my focus before it had been on the half marathon training, and at that time we thought it’s just a virus, you’re over it, and things were locked down, but they were talking about it all being open by the summer. So, my half marathon was September, so I thought I’ll get back to training, I’ve lost, you know, almost two months. So, I went on a little run round my block basically [laughs] and, that was quite tiring. It was, it was barely a run as far as I was concerned. So, I left it another week and thought right, I’ll just see how I feel. Went on another run and that one was terrible, and my heart rate was over two hundred and I thought I was going to pass out and, I was just like oh this isn’t right. So, I was in bed the next day, I had like a definite relapse, felt awful. And then on the Monday I, that was the weekend, and on the Monday, I felt well enough to take my dog on a little walk, but when I was out, I felt dreadful and I felt really odd, just can’t even describe it, just dizzy and odd. So, I went home, and I said to my husband, “I don’t feel right, I feel this, I feel my heart was going and I just felt really strange.” So, he has a blood pressure monitor, so he took my blood pressure and it was high, my heart rate was high, so we phoned the doctor and she went through a few things with me about, it’s not a heart attack basically, but this isn’t right so, you know, rest up.”