Anthony

Age at interview: 66

Brief Outline:

Anthony is retired and lives with his wife. He describes his ethnicity as white.

Anthony had an unpleasant viral illness for a couple of weeks in March 2020 which he now thinks may have been Covid-19, although testing was not available at the time. His initial illness was followed by feeling very washed out for a month and unable to do anything but lie down.

Anthony’s ongoing symptoms include: fatigue, tinnitus, headaches, brain fog and dizziness. He says it is distressing to think about how little he is now able to do compared to his active life before March 2020. Anthony was interviewed in November 2021.

More about me...

Anthony is 66 and retired. He thinks he caught Covid while using busy motorway service station facilities in March 2020. Within a few days he developed an unpleasant illness, with headaches, cough and fever, but ‘sat it out’ at home. He never felt he needed to go to hospital. After 2 weeks he felt better but then spent April 2020 feeling completely washed out. He didn't think at the time that he'd had Covid because he didn't have what were then seen as ‘classic symptoms’, such as loss of taste and smell, serious cough, breathlessness or respiratory issues. For the first time, he started to get a new type of headache and a new form of tinnitus. Testing wasn't available during his initial illness and any PCR tests he's had since have been negative. In the earlier stages of his illness, Anthony tried to get back to riding his bike and being more active. He noticed however that his energy levels would crash for the following days and weeks. He also finds mental activity tiring and is no longer able to concentrate in order to read or pursue other hobbies.

Before he became ill, Anthony’s life was active. He enjoyed walking, cycling, gardening, reading, photography, socialising, travelling and was looking forward to volunteering with a local nature reserve. Since having his illness he feels that almost everything has been put ‘on hold’. He finds it quite distressing to think about how little he can do now compared to before. He has had to cut right back on social interactions, which he has found exhausting - he even has to cut telephone conversations short if he starts to feel unwell. Anthony said that if he had still been working, he would have been unable to work, but he spoke about feeling invisible because he is retired and his illness has been even more ‘unseen’ than for someone who would need to take time off work. 

Anthony has suffered from tinnitus since he was young but noticed a sudden change in its sound quality at the time of his initial illness, to a low-pitched, ‘booming’ sound. This was investigated with an MRI scan but no underlying cause was detected. Anthony’s ongoing symptoms include: fatigue, tinnitus, headaches, brain fog, and dizziness. Anthony describes experiencing very specific types of headaches which have changed over time. They were initially headaches with flashing lights (in a horseshoe pattern) which he had never had before. They now are very severe sudden headaches which stop him in his tracks so that he has to go into a dark room. These have sometimes been worse when he has been lying down.

Anthony has consulted his GP several times during his illness. He has had blood tests and chest x-rays. His GP referred him to a Long Covid clinic, where he was formally diagnosed with Long Covid in early 2021. He is still being seen there. Being introduced to ways to carefully manage his energy levels has been helpful. He felt it was useful to be listened to and to have his symptoms affirmed. He is learning how to pace himself and to stop before he gets tired. He took part in a programme run by the English National Orchestra, which was really useful and helped him to focus his mind on something different and to relax. He still does some mindfulness exercises. 

He has tried several other things with mixed success, including antihistamines and CBD oil. He stopped both because he didn't think they helped. Anthony struggles with the lack of understanding about the physiological or biochemical mechanisms of Long Covid, and why it affects him as it has. He does not yet feel he is in a recovery phase and has now had his symptoms for around 2 years. He finds it frustrating that there are so many uncertainties about Long Covid and few answers about what can be done to support people with Long Covid. 

His advice to others is to take their condition seriously and to make sure their doctor takes it seriously too. He thinks it is important not to push yourself too much and to remember not to overlook that other underlying conditions may be involved.

In October 2022, Anthony provided an update on his condition. He was relieved to have noticed a marked improvement in his symptoms since late August 2022. He had more physical and mental energy, and was slowly getting back to some gentle physical activity. He no longer experienced bad crashes after a busy day. Those close to him had commented that he was beginning to look, sound and act more like his pre-Covid self. Anthony could not think of anything that he had done or changed to bring about this improvement.

Anthony described the dizziness he felt when tired. He felt less confident about what activities he could do and it meant he tended to “err on the side of caution.”

And do you think you have learned then quite subtle cues from your body? Like, what would you say are the very earliest signs that you’ve now learned, right, this is a sign I'm getting tired?
 
A sort of, lack of concentration sets in… sometimes dizziness. You know, my…you…you…I feel dizzy and I just, need to sit down or stand still or rest against the wall or something like that.…, it’s usually… it’s a combination of, sort of, both mental and physical cues that can tell you. But really you know, when you’ve got to that stage you’ve gone too far. You have to stop before you get there [laugh].
 
And that’s…that I still find very hard to do.
 
Yeah. It’s almost like you get no warning until it’s the actual tiredness, then it’s very hard to know when before that sets in, so…
 
Yeah. And if I can just follow up on that, this is …I mean, this has implications for the rest of your health of course because it means that you can't get out and do the normal amount of exercise that you would do., this doesn’t necessarily mean running ten miles but, you know, even just cleaning the house or hoovering or, you know, doing the washing or the washing up or the pottering around in a garden.
 
You know, all of those things. And particularly…I mean, particularly things like doing things in the house where you’re, kind of, moving around all the time. You generally move quite quickly, and you bend over and your turn around and you do this…those sudd…well not even sudden movements but the kind of things that you norm… just take for granted turning round, bending over, doing that quite quickly, all of a sudden you just have to catch yourself before you fall over.
 
And I was going to ask, do you think there’s any level of anxiety? Do you feel, kind of, anxious about things?
 
Well, that…
 
…in terms of balance and…?
 
…that then…yeah, that then starts to build in because, you know, you have incidents when, you think, I can't do this, I mustn’t do this because I'm feeling dizzy or tired or I’ve got headaches. Then the next time you think, well…mm, should I do this, or shouldn’t I do it?
 
So, this, kind of, anxiety then does, kind of, build in. So, and it becomes difficult to know when you should or shouldn’t do things sometimes. And you…because you’ve been told to and because experience tells you, you err on the side of caution. And I don’t know…yeah, that’s just what happens. So, you, sort of, develop, kind of, this anxiety…kind of, almost does build up over, kind of, weeks and months I would say. Yeah.

 

Anthony described different types of headaches. Along with flashing light headaches, he experienced very severe headaches that come on suddenly and “stop you in your tracks”.

But there were also other headaches associated with this, which, sort of, became more apparent over time…over time. And these have changed. And these have been in some ways much more unpleasant than the flashing light headaches. They have been really severe headaches where, it stops you in your tracks, you…you just have to, sort of, sit down or lie down and shut your eyes and, you know, take yourself off to a dark room a dark, quiet room. The problem with those sometimes is that they’ve been worse when I’ve been lying down. So, you…you feel dreadful, you don’t want to do anything, you want to curl up and just rest. But they get worse when you lie down, so you have to prop yourself up.
 
That’s not as relaxing as it could be. The…these became particularly bad, earlier this year, 2021.
 
But again, these periods of, you know, quite intense headaches come and go and sometimes they come on really very suddenly. It’s not just as if it’s a gradual build up. You know, within, thirty seconds, I…you know, I’ve suddenly found myself with very severe and very localised headaches, very localised headache. And they’re just odd. They can be very localised. They can move around. They can extend from, you know, one side of your head to the other. And again, at times they…they’ve become worse when you’re lying down.
 
Yeah. That sounds horrible.
 
It’s pretty ghastly, yeah [laugh].

 

Anthony bought paracetamol, antihistamines, and CBD oil over the counter to help with his headaches and other Long Covid symptoms. He found paracetamol helpful before going to bed but didn’t think the antihistamines or CBD oil helped him.

Okay. I've tried, a few things, not very many. As I mentioned, the headaches can be bad, and I've just used paracetamol for those, when I need to. And quite often they, the headaches, I get bad headaches before going to bed, or when I lie down. So, sometimes taking a couple of paracetamol, you know, just before bedtime is, is useful.
 
There was a, there were some reports earlier in the year, I think, about the possible, benefits of antihistamines for both dealing with the Covid itself, and also to deal with Long Covid. I tried some, you know over the counter antihistamines that you can get for allergies, and so on. I tried some of those for a week or so, and didn’t, didn’t have, didn’t observe any benefit of those. And in fact, I didn’t, I don’t get on, personally, particularly well with antihistamines, anyway. Something else that I've tried was, CBD oil, …cannabinoid oil.
 
Again, thinking that it might, again, which is an over-the-counter sort of medicine that you can get. It, it certainly had an effect on my head [laughs]. You know, and I, I got some, I had some strange dreams, and I think I was just quite sensitive to it, and didn’t get on with it particularly well. So, I stopped taking that. So, no, no, no other remedies, nothing, really.

 

Anthony was referred for “psychological support” but he didn’t find it helpful and thought the approach that had been used wasn’t the right one for people with Long Covid.

But I feel that the whole approach using CBT for Long Covid is absolutely not the same as using it for something where you have personal issues that cause anxiety and, sort of, stress and, you know, maybe…simply because the whole Long Covid thing is…
 
It’s a physiological condition. It’s not as…it’s not generated by psycho-…you know, it’s the whole business to do with, you know, how you approach and treat ME. It’s the same thing with Long Covid, I think. And I think just taking a CBT and saying, “Well, you know, you have choices about how you feel about this,” well actually no I don’t have a choice about how I feel about this. I actually feel terrible whether I…[laugh]. So, I think... I didn't think that they’d hit the right note on that.
 
Oh, that’s really useful feedback. But I could imagine that must be…yeah, I would have maybe felt quite annoyed if I was having very severe headaches that come on within thirty seconds and…[laugh].
 
Being told I have a choice about how I feel about it…No, I don’t [laugh]. And that’s the thing actually. This is…so I think…while I think that therapy is potentially quite good in order to…well potentially quite good. I think a sort of mindfulness, sort of, session is probably better in terms of helping people cope with the uncertainty and so on, rather than a sort of, traditional CBT approach which is you have choices about what you do here, when in fact you don’t have choices.

 

Anthony had 3 or 4 telephone consultations with a Long Covid clinic. He described these as “really helpful” because they introduced him to ways of coping with the condition by managing his energy levels.

As you say, my GP referred me after I’d had a number of consultations last year about the condition before we understood what it was and concluded that it might well be Long Covid. So, they referred me to the Long Covid clinic who contacted me right at the beginning of this year. And it was a phone call, and it was the people that had been, who were working in the Long Covid clinic were mostly…or the person that contacted me anyway was a respiratory physiologist. And because at the beginning most of the issues with Covid and Long Covid were thought to be centred around respiratory difficulties. And so one of the first…so this person called me up and we had a conversation on the phone and I said, “Well look, I'm…” and, you know, they explained that they were respiratory physiologist that…and I said, “Well look, I haven't, as far as I'm aware, had any specific respiratory illness, you know, kind of, do I qualify?” And you know, “I'm nevertheless sure there is a very long-term condition here, but it, kind of, doesn’t necessarily seem to, kind of, fit in with, I don’t know, where you’re coming from, kind of thing.” Anyway, they were very reassuring about that. They said, “Well actually…,” I think at that stage they’d said, “You know, about fifty per cent of people that have been referred to us haven't had and don’t have severe or indeed any specific respiratory conditions.” So, they were taking us all on, which was great.
 
And it was at that time that the person that I spoke to, very helpfully mentioned ways in which I could actually approach and potentially manage the condition. And…which I hadn’t got, wasn’t aware of before. And they mentioned that, you know, the condition involves a very, very low amount of energy which appears to have lots of similarities with chronic fatigue syndrome and ME. And from that experience, the best way to…one of the best ways of at least dealing with it is to manage your energy levels, so I was introduced to this concept of very, very, very carefully managing my energy levels. So that was really helpful. So, I think that was…so I had about three or four conversations on the phone with them over a period of a couple of weeks.
 

 

Anthony benefitted from taking part in the 6-week English National Opera Breathe programme. It helped him relax and manage his breathing.

It was a group session. Obviously it was online. And it was all centred on breathing and relaxing and it was run by a lady who essentially trains singers how to sing. But the techniques of the, you know, opera singers, professional opera singers how to sing, but the techniques that they use, it seemed to translate very well to helping people who had particularly breathing problems, sort of, breathing relaxation problems, getting themselves in a state, that I think a lot of people with Long Covid do. I mean, as I say, I didn't specifically have those breathing problems, but in terms of the relaxation and managing your breathing to help you relax, I mean, that was really, really good. And the approach was a very novel one and a very interesting one. And the teacher was stunningly good. Really excellent.
 

 

Anthony found even talking on the phone draining and he could be completely exhausted after seeing someone for 10-15 minutes.

Or social interactions, you know, things that you would normally do every day, and take for granted, and not regard them as putting any kind of demands on your energy systems. Just talking on the phone, talking to you now, all of these things, have a, an astonishing, ability, or capacity to just drain you. And, and it takes, and for me, one of the difficulties, it takes a long time to get your head around this, because you think, “Well I'm not ill,” and people say how well I look, and, and you know. And I can, for sort of short interactions, I can, you know, smile, and, and sort of be the relatively normal me. Or that’s how you come across to people, who see you. But actually, then, at the end of a ten- or fifteen-minute interaction, you're absolutely exhausted. And you think, “goodness, what’s happened here.” And it takes a long time to get to, to, to realise that you're not fooling yourself. You know, you know, it’s very odd.
 
Yeah, it sounds, just even, like you say, the amount of effort just to be your normal self, sounds exhausting.
 
It’s an effort. Yeah, it’s an effort, and that’s right. So, and, and, and coming to terms with what’s happening is, is, is very strange. Because normally most people are unwell, and they, they, you know, you, you rest, and you start recovering, and you start doing more things, and you push yourself a little bit. And, and that all works fine. But it doesn’t work in this case.

 

Anthony pointed out that Long Covid affects different people in different ways.

And another point is that it is very variable, and that, you know, it will affect people, different people in different ways. So, because, you know, one person experiences a particular set of symptoms, yours might be somewhat different. But I think the common factor seems to be the tiredness, the fatigue, the malaise, that you feel on any sort of physical or mental exertion. And, and then the things that may or may not affect people are the sort of breathing difficulties, some people have really bad breathing difficulties. And, quite clearly, a whole load of different symptoms, and perhaps internal issues, as well. And the other advice I would say is, just make sure that your family and friends understand how you feel, and, and your colleagues at, you know, people that you work with, and for, understand, too. And you know, just make sure they understand what’s going on.

 

Anthony thought it was hard for doctors to get the right balance between being realistic about the limited options for treating Long Covid, but still “offering hope to people”.

What about advice for health professionals, people working in health services that are dealing with people with Long Covid?
 
Hmm, first of all, take them seriously [laughs]. You know, I think, I think, I think people generally are, now. There’s a difficult balance. I don’t know, kind of, how best to approach it. Because, obviously you’ve got to, you’ve got to strike a balance between being realistic, and offering hope to people.
 
And, so the realism is that, you know, the realistic response, or a realistic response has to include, “well we don’t know what’s causing this, and we don’t really know how best to deal with it, or, or make it go away. But here’s some things you can do to look after yourself.” So, and I think that’s the sort of advice that I've been getting, which is good.
 
It’s frustrating, because it doesn’t sort it out, but it’s nice and sensible, and it’s, I think, you know, absolutely the best that can be done in the current situation. And, you know, I'm very grateful to have received it.