Fiona B
Fiona works full time as a lecturer. She describes her ethnicity as white.
Fiona caught Covid in mid-November 2021. She had previously had Lyme disease in 2013, which left her with chronic fatigue syndrome. Fiona was interviewed in May 2022.
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Fiona is a lecturer and caught Covid in mid-November 2021. By that stage she had received two vaccines and had been careful to try to avoid Covid because she had been ill over several years with Lyme disease. At first, Fiona experienced extreme dizziness and a bad headache from Covid. She then experienced chest pains, bloodshot eyes, and lost her sense of taste and smell after a few days. She was in bed for 10 days, exhausted to the point she couldn’t get up, and had a high temperature. She also experienced joint swelling and peripheral neuropathy.
Fiona tried going back to work after about three weeks, pushing through her ongoing symptoms of vertigo. After having a booster vaccine in early 2022, things started to get worse and she felt like she had ‘fallen off a cliff’. She was found to have a heart murmur and a leaking heart valve. Her cognitive functioning was affected and the chest pains were what forced her to stop and ask for help. She said she had very conflicting advice about how long to wait after having Covid, before having her booster vaccine.
Prior to catching Covid, even though she had been badly affected over several years after having Lyme disease, Fiona was managing to stay active, pace her activities and had good stamina in her busy job. She has noticed some similarities between her Long Covid symptoms and how she felt after having Lyme disease. She had expected it might take a while to recover from Covid. She is most worried about her cognitive symptoms. Fiona finds people who have had similar experiences are easier to talk to and she hasn’t told everyone about her Long Covid because they may not understand.
She is exercising a little to maintain other aspects of her health but if she overdoes it, her symptoms are worse. She hasn’t fully got her sense of taste and smell back and has times when her coordination isn’t fully there. She has returned to work on reduced hours as a phased return. She is starting to have ‘good pockets’ when she feels more like herself and is able to do more, but she still has to take time out to recover from activities.
Fiona found her GP supportive, but recognised that, like others, she didn’t ask for help as early as she could. Because of her previous condition she was under the care of NHS specialists who diagnosed Long Covid and put a treatment plan in place quickly. She was prescribed painkillers and medication for blood pressure, but a number of weeks after the infection her blood pressure returned to normal and she no longer needs to take these.
Fiona thinks it is important for health professionals to listen to everyone’s different experiences and keep up with the research, and for employers to be patient and kind. She also wonders about government level financial support for people and for smaller businesses affected by people being off with Long Covid.
Fiona B described difficulties she’d had with getting words in the right order. She also felt her short-term memory was worse and hoped these problems were temporary.
Fiona B described difficulties she’d had with getting words in the right order. She also felt her short-term memory was worse and hoped these problems were temporary.
Yeah, and when you said at the end of January you fell off a cliff, can you describe what that was like for you?
Cognitively, that…I’d really deteriorated. I couldn’t get words and I’d been with family at Christmas, so it was before the vaccine, and I wasn’t getting the words right, and words were back to front, like park car instead of car park, short term memory atrocious.
We all have that time, don’t we, at times, where we go into the fridge, and we don’t know why we’re there. But this was going into a room, going into a cupboard, going into this, and just thinking, well, what am I doing here?
And then the other things, and that’s when family started getting a bit frustrated at Christmas time, was that I’d be constantly being told, well, I told you that five minutes ago, and it wasn’t…it wasn’t there. I’d get sent to the shop for three items, and I’d remember one. And I think, good God, but it seemed to get so much worse.
I think the cognitive symptoms have been the ones that have worried…you know, as people have got over the most intense tiredness, you know, the most intense fatigue, I think the cognitive symptoms are the ones that a lot of people have found really quite distressing.
It’s the short-term memory, it’s horrible.
You do…you don’t remember things. I’ve got to write things down, and even when I write things down, I don’t always look at the piece of paper [laughs], but the short-term memory now is still there, and, you know, going into supermarkets, you’ll just go in with…it’s like going in the fridge moment that we all have. It’s like I’ve come in here, what am I here for? It’s like I’ve aged, you know, I feel as though I’ve aged about fifteen years in about five months.
And I hope, I so hope it just goes back to normal [laughs]. But I’m smiling here, but I…underneath, you know, I kind of worry that some permanent damage there that I’m not…or it’s going to progress, you know, dementia wise or something, I mean…but you don’t want to think about that too much, but it’s there, you’re thinking about it.
Some of Fiona B’s symptoms had mostly improved. Her sense of taste and smell was beginning to come back but duller and she was glad she hadn’t had phantom smells.
Some of Fiona B’s symptoms had mostly improved. Her sense of taste and smell was beginning to come back but duller and she was glad she hadn’t had phantom smells.
How far do you feel like you are down a road to recovery at the moment, would you say? So, it sounds like the chest pains have largely subsided unless you do too much physically.
Mm-hmm.
The headaches have gone, is that right?
They’re subsided, unless you’re overly tired, but I mean we can all have headaches when we’re overly tired, so I’m trying to think that way more than they are like the Covid headaches. The cognitive side is improved, but it’s not when I’m tired. I’ll go backwards again, so that hasn’t gone [coughs]. My taste hasn’t come back properly yet.
So, what’s…can you…
Smell.
Can you describe a little bit where you’re at with the taste and smell? I think you said before you could taste…you could distinguish between sweet and sour, but that things didn’t…so do things taste as they used to?
I have been fortunate, I mean, again, when you talk to friends, I have a friend, close friend, and she had Covid, and after a few weeks, she kept smelling diesel in the house, right, to the point that she had people come out and check the house and all sorts for things, but it was probably one of the phantom things after Covid, that’s what we put it down to [laughs]. But I haven’t had any of that. So, I haven’t had the phantom smells that I’ve heard and I mean, she went on for a while with this, and she still does, I think, and that’s months after. Myself, as I say, I was probably about five or six days into having the Covid illness itself, and that’s when the taste and smell went, and it was just like bam, it just went with me. It wasn’t a subtle degeneration in taste and smell, I was literally eating something in the morning, and then lunchtime I couldn’t taste it. And I had breakfast, and that was a long time of nothing, just literally nothing, taste and smell. Now, we’re looking at from November, what are we looking at now, November, December, January, February, March…four, five months.
I’ve got a taste of minimum, so I can taste sweet things and I can taste spicy things, so anything else though that’s a plainer taste like this Easter, you know, with chocolate, I couldn’t really taste chocolate. It was there and it kind of had a nice texture, but I couldn’t really particularly taste the chocolate per se. Same with things like cheese, I can’t…I love cheese, and I can’t really taste it, so I’m buying blue cheese all the time, or I’m buying the strongest one you possibly can think [laughs]. I was never a great one for oranges, I found them too sharp, for example. Now I like an orange, because I can just about taste it [laughs], which is probably not a bad thing, and when it comes to meals, it’s more spicy things, so I’m trying to eat more…make my own stuff as much as possible, so spicy curry things or adding a chilli in. I definitely can have a higher threshold to like chillies and things like that than I ever, ever had before [laughs]. Because a lot of other things, a bit bland, and smelling, I could smell bits now more than I could, but not much. I can smell perfume now, which I couldn’t.
And does it smell like perfume, if that is not a silly question?
Yeah. Yeah, it does, but it’s more like it’s taken…it’s as if you’ve taken the…you’ve dumbed it down, it’s duller. So, I have to probably be careful if I put it on, because I probably put too much on, but it’s taken the edge of it [laughs]. It’s just a duller sense, so it’s coming through, but it’s smaller, but it’s not everything I can smell, so lots of things you just can’t smell properly yet that you would have done, so…
And again, do you feel there’s a gradual improvement in that, or is it just a little bit hard to say?
It’s hard to say. You think you’ve probably got some of it back, and you think, is this it? I’ve got a bit back, so it’s better than where it was. And I can taste a few things now, which is better than nothing. But is it going to improve any further, I don’t know, I don’t…I hope so.
Fiona B felt she was given conflicting advice about how long she should leave between her Covid infection and her booster vaccine. The staff who vaccinated her said a four-week gap was enough, but A&E staff said she should have waited six months.
Fiona B felt she was given conflicting advice about how long she should leave between her Covid infection and her booster vaccine. The staff who vaccinated her said a four-week gap was enough, but A&E staff said she should have waited six months.
But it was interesting when I was, you know, in hospital, because there were so many different people saying different things. I maybe should have left the Moderna for a later period, but because you were going back to teach, you were wanting to have the full protection, and I’d missed my booster because I got Covid in the November. And I was due my booster then from the May.
So the last thing I wanted to do was have Covid and then go back to teaching and not have had my booster, so I left it the four weeks that we’re supposed to, but then…I’ve heard other people say, oh no, you should have left it longer than that now, but I…you did what you thought was best at that time and what was…you know.
And when you went in for the vaccine, did they check all of those things? Did they ask you questions about whether you…
Yeah, but then when I ended up in A&E with the chest pains, I was told at that point in time, oh, I thought it’s supposed to be six months before you have it, and I thought, well, could somebody please tell…tell us what was right or not there, because you’re getting different information there [laughs].
Fiona B said her GP set up a treatment plan immediately and referred her to a Long Covid clinic.
Fiona B said her GP set up a treatment plan immediately and referred her to a Long Covid clinic.
So, did you stop work altogether for a period after the end of January?
[laughs] I ended up phoning my GP at the end of January, about the twenty-fourth of January, somewhere around then, and I was in floods of tears. And I said, I don’t know what’s wrong, but I can’t get back to me, I’ve lost me, and they were amazing [laughs]. I mean, the GP that’s here in…I live in [place in county], and hats off to the GP and everything there, they were immediately…they were amazing…they immediately knew…could see the signs of Long Covid. And they set a treatment plan up there and then, and said don’t worry, they put a treatment plan in place immediately, got me signed up to the Long Covid clinic here in the [region]. And regularly the GP was supportive, so I think I spoke to her probably every week at this point in time, and it was having that support that was crucial. There isn’t a magic pill, and I knew there probably wouldn’t be a magic pill after having Lyme disease, after once treated, this lovely word of take your time, pace yourself, that we all frustrated with, and the setbacks, especially as I say, when you’ve been a fit individual, you think, well, is there light at the end of the tunnel?
And you said that they had been very quick to set up a treatment plan, so…
Yes.
Can you describe what they set out in the treatment plan?
They were very quick to offer any talking support. Any support, talking support, which was really…I only spoke to them a couple of times, but it was good just to say, aah, and just talk to somebody for five minutes…rather than falling off a cliff, so to talk to somebody to say, look, just take it easy for a minute, just look after yourself, never mind them over there or this over there, you need to get well, or else you can’t deal with any of that, and that was really helpful, so that was put in place immediately as well, so I spoke to them the next week.
So, it sounds as if your GP practice were quite knowledgeable about Long Covid, I mean, its existence and what was available.
They seem to be.
Obviously one of the challenges for people who became ill with it in 2020, when it wasn’t a known thing, but it sounds like they both believed exactly what you were saying and were knowledgeable about what might be available, and possibly the limits of that as well.
Yeah, very much so, yeah. Yeah, immediately. I mean, once they went through diagnostic process and they’d looked back at when I’d had it and the dates I’d had it, how long I’d had it, what the symptoms were and things like that, and then naturally picked up with the echocardiogram and seen the heart murmur, so there were things that were in the loop but they just hadn’t been pieced together until I fell off the cliff in January, otherwise they would have probably just thought, well, I’ve just gone on after Covid, but it just didn’t. And so, when you look back, you could see the problems that were there, and probably the one thing that you hadn’t spoken to them about at that point in time were the cognitive. Because predominantly, what made me fall off the cliff was the chest pains. I maybe would have bumbled along with the cognitive, but I couldn’t have with the chest pains, it was just…they were on weeks and weeks. It wasn’t just a couple of weeks it was like sitting down constantly having chest pain.
After an initial triage call with the Long Covid clinic, Fiona B was then referred to a clinic to help her deal with brain fog. At the time of interview, she was waiting for an appointment with them.
After an initial triage call with the Long Covid clinic, Fiona B was then referred to a clinic to help her deal with brain fog. At the time of interview, she was waiting for an appointment with them.
There’s like the Long Covid clinic, interestingly, they were great, they came on the phone, but the system’s slow, and they mean well [laughs]. These systems that are in place mean well, but I haven’t seen anybody yet [laughs]. It’s been January [laughs]. And so that’s…
So, three months on, you’ve had some contact with them by phone, but not actually been able to attend the clinic yet, is that right?
Oh yeah. I mean, where I’ve been put through to now is a cognitive support clinic. Which is tied up here in [city], and I think it’s [name]. There’s something like that, and they got in touch and said…I got a letter, but there’s a waiting…I’m just waiting.
I think it was three or four weeks before they phoned, and it was a phone call, and that was a bit like a…I think it’s like classed as a triage. So they go through your symptoms, how long you’ve had them, and then they again will tell you whether you’ve got Long Covid, so you get about three diagnoses by this point [laughs]. And then they work out what’s the best treatment plan for you, so it’s what is your worst symptom, so very much was the cognitive. The worry about that as well, so they put that in place for that to be done, but as I say, nothing as yet has come through, although I have had a letter to say that I’m in the system.
Fiona B, who had help from her GP practice in January 2021, said their supportive and proactive response was crucial to her at that time. They recognised the signs of Long Covid immediately.
Fiona B, who had help from her GP practice in January 2021, said their supportive and proactive response was crucial to her at that time. They recognised the signs of Long Covid immediately.
I ended up phoning my GP at the end of January, about the twenty fourth of January, somewhere around then, and I was in floods of tears [Laughs].
And I said, I don’t know what’s wrong, but I can’t get back to me, I’ve lost me [laughs]. And they [laughs]…they were amazing. I mean, the GP that’s here in…I live in [place in county], and hats off to the GP and everything there, they were immediately…they were amazing.
They immediately knew…could see the signs of Long Covid. And they set a treatment plan up there and then and said don’t worry.
They put a treatment plan in place immediately got me signed up to the Long Covid clinic here in the [region]. And regularly the GP was supportive, so I think I spoke to her probably every week at this point in time and it was having that support that was crucial.
Fiona B said people’s Long Covid symptoms are “not one size fits all” so GPs “need to listen” and remember that “lots of people take a long time to go and see somebody”.
Fiona B said people’s Long Covid symptoms are “not one size fits all” so GPs “need to listen” and remember that “lots of people take a long time to go and see somebody”.
If we take the healthcare profession…first of all, I was fortunate…that I was already in a system, and I was fortunate with the GP, who was a young GP, whether that’s any relation to it, I don’t know, but they listened. And I think just listen. It’s quite obvious when you talk to somebody what they’re feeling and what the symptoms are, and I think a lot of people will have…were different, probably. I mean, the symptoms for Long Covid, as I say, I mean, I never had the shortness of breath or the cough, fortunately, or the lung problems that seem to be with so many people, I was fortunate, but I had other symptoms that were, just the chest pains and the head, so I think everyone’s individual, but everyone’s probably, as well we’re under the same banner, and if you don’t just tick a box, think that it’s…it probably has been related. It’s not one size fits all, but I think, just be aware that Long Covid is out there with lots of people, and I think lots of people take a long time to go and see somebody.
And why do you think that is? Why do you think we do that?
I think a lot of us are professionally as well, we’re probably quite stoical and we kind of just think it’ll go away, it’ll be okay, and probably we’ve been in society with Covid, that some people have been okay and some people haven’t, and you kind of think, oh, I don’t want to make a fuss, maybe it’ll go, but then when you get so poorly, you have no choice.
You’ve got to go and get the help, because there is help there, it’s just getting the right GP to talk and help and support you as well, but I think…and I think the GPs need to listen just to, you know, if you don’t have one that does, or the healthcare professions themselves should be reading the research out there, they should be looking at the research everywhere and being up to date, ‘cause things are changing all the time.
I mean, I can just say that our profession academically, keep looking around and what’s happening and be up to date with it, because there’s probably lots of people out there that don’t want to go in and say it, and by the time they build up the courage to say it, like I did, and be in tears, which is not me…then you…come on, we’re not saying it for nothing, listen to them.