A-Z

Sarah

Age at interview: 43
Brief Outline:

Sarah lives with her husband and has two children (aged 12 and 13). She is a Speech and Language therapist. She had four part-time jobs but is currently working one day per week. Sarah describes her ethnicity as white. 

Sarah became unwell over Christmas in 2020. Initially she felt a bit off colour and lost her appetite, but she got tested when she developed a cough a couple of days later. She then felt “quite unwell” and counted thirteen symptoms over that initial period, but she never felt so unwell that she worried about being hospitalised. Sarah used to juggle several part-time jobs but can now only work one day a week because of her ongoing symptoms. Sarah sometimes struggles with not knowing when she will feel better and wonders if she didn’t rest enough in the first stages of her illness. Sarah was interviewed in November 2021.

More about me...

Before Covid, Sarah had a full and busy life. She was juggling several part-time jobs in addition to being an engaged mother. She was also very active and sociable and kept fit by playing tennis, running, and attending fitness classes. She says she is now “a shadow” of what she was before. She feels like she has to hold back from being her usual busy, “bubbly” self. Sarah’s husband, children, parents, and friends have all been very supportive throughout her illness. She feels “privileged” in some ways that she is better than some other people with Long Covid, but her symptoms nonetheless still dominate her daily life. 

Sarah initially felt unwell in the lead up to Christmas 2020. She remembers not feeling like eating her Christmas dinner and got tested when she developed a cough on Boxing Day. She received a positive result the next day and the other members of the family also tested positive. Sarah then felt quite unwell and developed many symptoms along with the ‘classic’ ones (fever, cough, and loss of taste/smell). Her ongoing symptoms include headaches, pain behind her eyes, sore throat, upset stomach, menstrual changes, feeling like the pressure in her head is “wrong,” popping and an “echo” in one ear, extreme fatigue, brain fog, sleep disturbance, low tolerance of movement or sensory stimuli, light-headedness and dizziness, and inability to stand for long periods. Sarah was still experiencing most of these symptoms when she was interviewed, coming up for a year after she first had Covid, and does not feel like she is getting better.

In the early stages of her illness, Sarah would set goals and deadlines for herself, such as when she would be able to work more or walk longer distances again. This led to feelings of disappointment and failure when she couldn’t meet these targets. Sarah wonders if she made her symptoms worse by pushing herself too soon. She kept a record of her ups and downs from early on in her illness and it helped her to understand what a “roller-coaster” her illness was.

Sarah has returned to work one day a week as this is all she can manage alongside her symptoms. She described the way in which any activity now has a knock-on effect for her and how she has to plan every aspect of life very carefully. She has learnt about the importance of ‘pacing’ herself and particularly the positive impact of “aggressive resting” in the form of complete sensory shutdowns after she has done anything that might tire her. This involves lying in a dark room with her eyes closed and earplugs in for at least thirty minutes. She has recently worked out a “model” of trying to think about and rate how much of a social, emotional, cognitive, sensory or physical ‘load’ an activity might place on her and then how much of an “aggressive rest” she will need to recover if she chooses to do it. 

She has also tried to do 'simple' things to help herself feel better, such as drinking plenty of water, taking supplements, eating as healthily as she can, and finding time to do some breathing exercises. She has found it difficult to follow more complicated diets or other therapies that some people have recommended for Long Covid, especially when she is not 100% sure they will work.

A main priority for Sarah, is managing her symptoms and energy levels so she can put her children’s needs first. She doesn’t want them to miss out on activities because of her illness. She thinks her children struggle to understand why she isn’t getting better in a steadier way, as she has in the past after a stomach bug or flu. They don’t understand why she can have fun doing something with them one day but then has to say no to the same thing the next day. She doesn’t like seeing the disappointment on their faces if she has to say she can’t do something.

Sarah also struggles with the non-linear nature of her illness and not knowing when she might feel better. She finds it particularly difficult that it is the things which make her feel most like her old self, such as meeting a friend for coffee or going for a run, which lead to her feeling worse. She said, “I think that’s the hardest thing, not being able to feel like I can really be myself.” She finds it difficult when people say she is looking well, when she is still feeling quite unwell. Some days now her symptoms feel manageable, but on other days she still feels very restricted in what she is able to do. She has realised that even the smallest of activities, like drying her hair, take energy that she has to take account of. She finds it difficult to realise that she is coming up to a year since she first had Covid and still isn’t better.

So far she has had relatively few health service contacts about her Long Covid symptoms. She was referred to a Long Covid clinic and had an initial 45-minute consultation with them, but then had no follow-up from them. She has found some of the existing Facebook support groups helpful for raising suggestions about what might help or for making her realise that there are other people who are going through similar things. Sometimes people’s suggestions can lead to false hope and sometimes she steps back from the group to stop herself feeling overwhelmed.

For health care professionals, she stressed the importance of listening to how people are feeling and recognising that not everyone with Long Covid will have the same experience.

 

Because people had “almost taken a step back” when Sarah had said she had Long Covid, she thought the name might carry a bit of stigma.

Because people had “almost taken a step back” when Sarah had said she had Long Covid, she thought the name might carry a bit of stigma.

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Yeah, I’ve thought about it a little bit actually. I think, I don’t know if I’m right in this, I feel like over in the US they tend to call it long-haul Covid a bit more. And here it tends to be Long Covid. But I have also thought about myself calling it post viral Long Covid.
 
Because I think essentially that does, that describes perhaps better for some people how I’m, how I am. It is you know, a post-viral and like I mentioned before, the links with [um] or similarities with chronic fatigue syndrome and ME and things. So, I have thought about that describing it. And, and I again I’ve sort of thought about whether for some people I should call it that and some people I call it Long Covid. But generally, I use the term Long Covid at present. I was aware at one point that I’d said, I’d sort of met people and I’d sort of said oh, I’ve got Long Covid, and they’d almost like [laughingly] taken a step back and pulled their mask higher.
 
As if to think that I was still contagious or something.
 
Which isn’t the case, but it might carry that sort of stigma a little bit, especially if people don’t understand it.
 
So, I sort of, you know, obviously then reassure them that, you know, I’ve, I’ve been testing negative ever since, you know, a week or so after the infection [laughs]; it’s just the after-effect so.

 

 

Sarah had come up with a way of rating the amount and type of ‘load’ which different activities involved. This helped her to plan how much rest she would need after each activity.

Sarah had come up with a way of rating the amount and type of ‘load’ which different activities involved. This helped her to plan how much rest she would need after each activity.

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So, I worked out that my symptoms sort of, my various symptoms generally seem to get worse when I’ve been doing activities that have a high like processing load, like a high cognitive load or a high physical load or a high sensory load or a high emotional load or a high social load. So, I’ve ended up coming up with a bit of a model where I look at a particular activity and sort of rate it as to how much load it’s going to put on me in those areas.
 
So, you know, for example lying on the sofa listening to relaxing music doesn’t really put a big load on me cognitively or physically or emotionally; there’s a little bit of sensory obviously from listening, and no social load because I’m not talking to anyone. Whereas an activity like taking my son to a sports tournament would put a big load on me in many of those areas so…And then there’s obviously lots of activities in between. So, I’ve developed a bit of a spider graph where I kind of rate an activity on those different factors, and then essentially the higher number, the higher load in total that an activity places on me 
 
…and then equally like within a day an activity such as talking to you now, you know, I could rate that on my, on my spider graph in terms of, you know, physical, social, emotional sensory, and so on. And then work out, you know, therefore, you know, what…I will need a rest afterwards. And then that helps to be…that rest will, the sensory shutdown will be restorative. It helps me know that I can’t get away with just going straight onto another activity.
 
Yeah. That’s amazing. And so, do you think, are you, are you conscious of using that then, day to day? Do you think you do that quite frequently thinking about, “Right this is going to be this level of load so therefore I’ll do that afterwards”?
 
Yeah. But it’s very recent. I’ve only recently…it’s taken me ten and a half months to kind of come to this [laughs]. I’m now finding it helpful. And I’ve also, I mean I’ve done a little diagram, spider graph to help actually explain to my family and my friends. And I’ve just tried it out on a couple of friends to help explain it a bit. And I think they’ve said it’s helped them understand as well, so…So it’s obviously I wish I didn’t have to do it. I wish that I didn’t have to think what load is this activity putting on me, but I am finding it helpful to help me manage my time.
 

 

 

Sarah kept symptom diary to track her “up and down journey.” She had felt hopeful over the summer, but recently thought that she wasn’t improving.

Sarah kept symptom diary to track her “up and down journey.” She had felt hopeful over the summer, but recently thought that she wasn’t improving.

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So, I think over the ten months I’ve tried a few different things as the journey’s gone on, and yeah, some things have been sort of less and more effective [laughs]. One thing that’s been sort of helpful I think has been keeping a bit of a diary. So, I sort of started quite early on keeping and giving myself a mark out of ten for each day and keeping a record of that and just to sort of be able to monitor, you know, the ups and downs. And that was what I think that’s what helped me realise quite quickly that it really was a very up and down journey, a real rollercoaster [laughs]. So, I might have, you know, a day that I thought oh, that wasn’t too bad, my symptoms weren’t too bad, I feel okay, and give it a seven or eight out of ten, and then the next day could be a two, and then go back up to a six. And so yeah, so that was a bit of a crude measure but keeping a little bit of a diary of my symptoms and how I was feeling that’s been quite helpful. Less helpful definitely was me trying early on and realising that I couldn’t set myself targets or goals in the same way as I might do or might have done previously.
 
Do you think you’re better just now or are you somewhat the same? 
 
Yeah I don’t…I haven’t recently felt like I’m improving, which has been quite hard. So, I think over the summer I did feel a bit more hopeful that I was having a few more better days and things but it’s hard because obviously over the summer our timetable was different over the school summer holidays to normal so there wasn’t as much racing around as a taxi service for my children and so on. It was just like this, and obviously summer’s a bit nicer and warmer and lighter and, you know, cheerier generally. So, I’d say then that I’ve found it a bit more discouraging recently that I don’t feel I’ve really had more better days than I was having. And in fact, if anything I feel sort of more down about, about the fact of not getting better. As I say, I’m not sure how much of that is to do with the fact that it’s winter and darker nights and yeah, the fact we’re approaching obviously December. Next month will be the anniversary if you like, corona-versary as people call it [laughs]. And the fact that I’m approaching a year has made me feel a bit more despondent. It’s sometimes hard to separate out what is sort of me feeling emotionally better versus physically better sort of thing. But I wouldn’t say recently I feel like I’m on an uphill trajectory at the moment. So, yeah.

 

 

Sarah described her first telephone consultation with the Long Covid clinic specialist nurse as cathartic. However, there was no follow-up appointment or referrals and her GP suggested that chasing this up wouldn’t be worthwhile.

Sarah described her first telephone consultation with the Long Covid clinic specialist nurse as cathartic. However, there was no follow-up appointment or referrals and her GP suggested that chasing this up wouldn’t be worthwhile.

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Yeah, I mean with the Long Covid clinic I wasn’t really sure what to expect from that, but it turned out to be I’ve just literally had one forty-five-minute phone call from I think it was a specialist nurse at the Long Covid clinic and the phone call was quite cathartic I suppose, I sort of talked through obviously my own list of symptoms and limitations on my life that I was experiencing. But there wasn’t from that anything further, so I think actually the nurse did say she’d follow up with another phone call four to six weeks later and I’ve never heard back and that was, you know, several months ago now. So, there wasn’t particularly anything from that.
 
And do you feel like you would want to go back to that to kind of try and chase that up or how do you feel about that?
 
So, on my last phone call with the GP I did say, I did mention that I hadn’t had any sort of follow-up from the Long Covid clinic and the GP’s advice was just to leave it, that he didn’t feel that it would necessarily be particularly useful [laughs]. I don’t know in our area, I know it’s different in different areas, isn’t it, I think, these Long Covid clinics, but I think he was indicating that perhaps in our area it wasn’t necessarily worth following it up that they, you know, with what I’m experiencing, there isn’t particularly anything else that they would be able to give me or suggest or do other than what I’m doing already.

 

 

Sarah’s GP referred her to a neurology specialist “just to check there’s nothing else going on”. Although her GP was reassuring, Sarah said she was concerned by them checking if anything is wrong with her brain.

Sarah’s GP referred her to a neurology specialist “just to check there’s nothing else going on”. Although her GP was reassuring, Sarah said she was concerned by them checking if anything is wrong with her brain.

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I had a referral to ENT because of my ongoing ear issues and they did also refer me to a Long Covid clinic which I’ve just had one phone call from that. And then just very recently I’ve been referred as well to neurology which I, I’ve gotten, I’ve just received an appointment for February through the post, so that’s obviously a little bit of a wait…I don’t necessarily expect that to show anything up, but it’s just to check that there’s nothing, nothing else going on I think.
 
I guess it concerns me a little bit when the doctor wanted to refer me to neurology [laughs]. Just because that obviously sounds sort of like they want to see if there’s anything going on in the brain, you know, obviously in the brain. So, but the doctor was quite reassuring that that was just, you know, just to check really, rule anything else out; and they did tell me they didn’t anticipate that showing anything up particularly. but probably out of everything that’s the thing that sort of I suppose scared me a little bit the most.

 

 

Sarah said it was hard for her children to understand why she wasn’t getting better in a more “linear” way. She found it hard to see their disappointment on days when she wasn’t well enough to do activities with them.

Sarah said it was hard for her children to understand why she wasn’t getting better in a more “linear” way. She found it hard to see their disappointment on days when she wasn’t well enough to do activities with them.

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I think I am definitely trying to protect them a bit. I also try to be honest. I think it’s harder, you know, although they are teenagers my children, I think it’s still really hard for them to understand because it’s hard for me to understand, you know. Previously with illnesses, you know, when you have a stomach bug or even the flu actually or something like that generally once you start feeling better than the next day’s better and the next day’s better, isn’t it. So, progress does tend to be linear with most of the other things that they’ve experienced. And I suppose with this not being, I think that’s really hard for them to cope with; you know, the fact that one day I can play table tennis with them and have a good time and then the next day I have to say no, I really can’t. I don’t like seeing the disappointment in their faces when I have to say no. So, I try to protect them from that a bit. But yeah, it’s…I do better at that some days than others.

 

Sarah found it “tricky” when her friends reminded her what she was like before she had Covid. She didn’t want to be “someone that moans”

Sarah found it “tricky” when her friends reminded her what she was like before she had Covid. She didn’t want to be “someone that moans”

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Exactly yeah, yeah. And I, I think another thing that’s quite, quite tricky is people – you know, as I said, I’ve got some brilliant friends and family and great support – but still not feeling like…I’m hearing so many people saying, you know, you’re the least person that we thought would, would suffer from this. And, you know, you’re such a, you know, always such an active person and a busy person. And it feels quite like I suppose I feel like I shouldn’t, I shouldn’t be the one suffering. And I feel like yeah, what, what am I doing wrong, like why, why is it, why am I still struggling. Maybe I’m not doing things right. And yeah, it’s quite hard finding that when I see friends, I find that I’m sort of…I feel like I’m moaning a lot, whereas previously I was quite an optimistic positive person.
 
I don’t really want to be someone that, that moans [laughs]. But equally I want to be honest. So, yeah trying to be honest and open. But, but it…I wish I wasn’t having to yeah…talk about this stuff so much. And yeah, just like the progress is, you know, as I’ve mentioned, not linear so, you know, emotionally it’s hard, that you sort of think oh that’s great, I’ve had a better day.
 

 

 

Sarah thought understanding of Long Covid was improving, but without personal experience the general public’s understanding was limited.

Sarah thought understanding of Long Covid was improving, but without personal experience the general public’s understanding was limited.

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I don’t know. I mean, I think probably increasingly it is being better understood. Most people now at least have heard of it and know what it is. But I think it’s a bit like anything; they might have read one particular article and if it’s not particularly relevant for them and their life they might then think that that one article they read is sort of all that there is to it. So, you know, for example if they read an article, for example, on someone that’s got a particular set of symptoms and they’ve found doing a particular diet helpful they might think that’s what Long Covid is. So, I found with my own friends and family – and obviously, you know, I’m lucky, I’ve said before that, you know, people are willing to listen to me and I am quite open and do share a lot about things I’m trying and how I’m feeling and that sort of thing. But yeah, it’s a bit like anything that I think people, the general public only understand as much as they – if they haven’t actually got personal experience of it – as much as they…what they have heard or read about it which is probably less than someone that is going through it [laughs].

 

Some people took a step back and “pulled their mask higher,” when Sarah told them she had Long Covid, as if she was still infectious.

Some people took a step back and “pulled their mask higher,” when Sarah told them she had Long Covid, as if she was still infectious.

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But generally, I use the term Long Covid at present. I was aware at one point that I’d said, I’d sort of met people and I’d sort of said “Oh, I’ve got Long Covid,” and they’d almost like taken a step back and pulled their mask higher [laughs]. As if to think that I was still contagious or something. Which isn’t the case, but it might carry that sort of stigma a little bit, especially if people don’t understand it. So, I sort of, you know, obviously then reassure them that, you know, I’ve been testing negative ever since, you know, a week or so after the infection [laughs]; it’s just the after-effect so.

 

Sarah sometimes felt more unwell after looking at a screen to read information about Long Covid. She had to weigh up the benefits of spending time on screen against whether the information she was reading was relevant or helpful to her.

Sarah sometimes felt more unwell after looking at a screen to read information about Long Covid. She had to weigh up the benefits of spending time on screen against whether the information she was reading was relevant or helpful to her.

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Yeah, yeah I think so. It’s quite hard to discern. And, you know, I could spend, you know, an hour sitting reading everything and then at the end of it I think yeah, what from that am I taking away. And certainly, in the early stages it was a bit ironic because being on a screen, I think I, I mentioned last time, is, is, you know, difficult for me [laughingly]. And I was spending, you know, an hour, it’s quite ironic really, I was spending an hour reading…all about Long Covid stuff on a screen and then I’d…you know, to try and help myself. But then because I’d been on a screen for an hour, I’d then feel worse after so…it’s always sort of constantly weighing up, yeah.
 
I’ve also attended a couple of like webinars and Zoom chats and things. But I know a couple of organisations, aren’t there, like Zoe, are sort of sharing information. So, I think it’s good to try and keep informed but also sometimes to be able to step back [laughs]. And like I say I think I’m aware you know, I heard, I heard one stat that there are sort of two hundred symptoms being experienced by Long Covid sufferers, and I, I might have yeah twelve or thirteen of those, but I haven’t got all the other ones. So, it’s hard to know with what’s being recommended which thing for me personally is going to be the way for me to improve [laughs].

 

 

Sarah told her friends with Covid to “please rest, rest, rest, rest otherwise you might end up like me”.

Sarah told her friends with Covid to “please rest, rest, rest, rest otherwise you might end up like me”.

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What about messages for other people affected by the condition? What would be your main advice?
 
Yeah, so I’ve actually had a few friends that have had Covid quite recently in the next… the last couple of months in this latest sort of spike as it were, and like ladies maybe similar to me and have just, I just keep texting to them saying, please rest, rest, rest, rest [laughingly].
 
And when you think you’re ready to go back to work don’t go back. When you think you’re ready to go for a run don’t go for a run. I don’t know. And, you know, I do say, otherwise you might end up like me. But I don’t know whether that is why I ended up like this or not. But so yeah, just to…I mean, people said to me at the time, just, just take your time and, you know, but it’s you don’t always listen to it, do you? You think you know best. You think you’re ready to start again. So yeah, just really, really taking it slowly.
 
And then just in terms of managing it I don’t know, I suppose, I suppose I would say about, you know, becoming part of some of the support groups and things like that and finding people that you are able to talk to and be honest with and, you know. Some, some of the things I’ve done like, you know, keeping a diary and things like that that I feel are useful I guess I would share some of the things.
 

 

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