Sophie

Brief Outline:

Sophie is a student and full-time mother of two. She describes her ethnicity as white.

In March 2021 Sophie developed severe breathing problems and she now feels that she is beginning to recovery. She feels her GPs haven’t taken her symptoms seriously. She worries about whether her body has been permanently damaged by Covid and whether striving to regain her fitness may have made things worse. Sophie was interviewed in June 2021.

More about me...

Sophie is a full-time student and lives with her husband and two young children. She describes herself as very active, ‘high energy’ and a keen hill walker and runner before she became ill.

In March 2021 she developed discolouration and a burning sensation on her tongue. She felt more sluggish than usual. When she developed ‘heavy’ tiredness, difficulty breathing and shortness of breath and an overpowering metallic taste in her mouth. Two weeks later she began to wonder whether she might have Covid. After a negative PCR test, her doctor said she thought she might have had Covid sometime earlier. Over the three weeks that followed, Sophie became severely ill with muscle spasms (‘tightenings’ which started over her chest and then moved around her body), a racing heart and difficulty breathing. Her blood pressure went ‘sky high’. She was struggling to walk and needed to stay in bed. She said ‘I thought I was going to die… I’d wake up at night gasping (for air)’. She was ‘completely wiped out’.

Over the subsequent months her symptoms went ‘backwards and forwards’ and she thought she would never get better, but things gradually improved and she now feels she’s over the worst. Her husband and parents have been an important source of support. They have helped with looking after her young children.

Sophie contacted her GP about 2 weeks after her first symptoms. She described feeling shrugged off and confused. She said her doctor ‘thought maybe it was psychological, the shortness of breath and stuff.’ During her illness Sophie arranged appointments with a number of GPs at her local practice, mainly by telephone. She had various blood tests, but these didn’t show anything. She didn’t know what to do when she was feeling really bad and she wished the doctors had suggested following her up rather than leaving her on her own. She worries that the illness may have ‘damaged her in some way’. Now that Sophie is getting a bit more active again, she wishes she could have a ‘body check’ to confirm that she is OK. She now feels like she doesn’t even want to contact the doctors about her ongoing symptoms because she doesn’t want to be shrugged off again. She has considered having further tests done privately but doesn’t think this is affordable on their single wage.

Sophie has found it difficult to find any clear answers, reliable information and treatments for her condition. She briefly joined a Long Covid online group, but she said ‘to be honest it made me feel more anxious’.  She found information on some online sites and forums ‘really quite scary’. She has tried taking multi-vitamins and glucose tablets. She has also taken aspirin and Propranolol which has helped to take her heart rate down. Since her interview, Sophie has started to take cetirizine hydrochloride antihistamines in the evening. She said these have helped her tremendously because they relieve the crushing chest pain and shortness of breath symptoms.

Sophie now feels that she is definitely beginning to get better. Throughout her journey she has never tested positive for Covid and while she’d like to have Long Covid formerly diagnosed, her main concerns are unknowns regarding any lasting damage, and whether pushing herself physically could make things worse. 

She thinks it’s important for GPs to encourage people to get back in touch if they continue to feel unwell and to arrange follow-up appointments. She feels like her own GPs did not understand how bad she felt and how much she has struggled with her symptoms.

 

Sophie found her breathlessness “psychologically demanding”. She felt like she couldn’t breathe, “hour after hour every day for weeks”.

And I then started to get really short of breath, it was just really noticeable, and in the kind of early evenings where I felt like I couldn’t breathe. Like my lungs weren’t inflating properly kind of thing in and out, it was like really shallow breathing, and, I just tried to, ignore that, go for walks and stuff, just probably, you know, it was just tiredness that was bringing it on. It started to get more intense, stronger and then it started to peak earlier, so it was then like earlier in the evening. This went on for a week and it was happening earlier and earlier, when it was then starting in the afternoon, and then, it was like just felt really, really hard to breathe, so I phoned up the doctor, and then she just did a telephone appointment call with me. And she said to me that she thought it sounded very like Covid, and it would just be that the, basically because I said to her, during that time I did actually get a PCR test, which turned out to be negative. And she said that would probably mean, she said it could be that I’ve maybe had Covid, but this is now the aftermath of it. And it’s, affecting the receptors, kind of like how asthma would manifest.

So, she said that would be something that sounded like long Covid at this stage because I was still testing negative, and she suggested it could be long Covid, but they can’t obviously confirm that one hundred per cent, because I’ve not had a positive test for Covid. But she said it did sound very much like it, and she said that it would probably just take time to go away itself, and I was to try and do breathing exercises, I tried that, but it just had no impact on it whatsoever, and she said it would take time, she said that there was no time frame for that, because it’s different for everybody.

I don’t think they understood how bad it felt. I think they just thought, oh, it’s a wee bit shortness of breath, here’s some breathing exercises, and it’ll go away. But it was like, well, for me it was just like I couldn’t breathe, and to have that, like hour after hour every day for weeks is psychologically demanding, because you have to focus your mind out of that dreadful feeling. 

Sophie was trying to build up her stamina by walking a bit more each day but was unsure if this was safe for her to do.

Looking back, do you think there’s anything that sort of slowed rather than helped the recovery, that you know, that you might have done?

I think, I’m a walker, I’m a keen walker and what I did was I started to just walk a little bit. After a month and a half, was it a month and a half or two months, a month and a half, I think I started to walk a little bit more. So I was able to walk ten, fifteen minutes, and then twenty minutes, so I walked, tried to make a small walk every day. And then I tried to build it up, and I think you felt like rubbish after it, and you thought, oh, this is taking me back, but my gut instinct is that it’s actually helped me. Because like it’s like I’ve been able to then walk a wee bit more, like…

Okay, you’ve been able to build in time…

Build, build, yeah, but even though you weren’t sure if this is going to help or not, and it felt like it wasn’t going to help, because you would feel maybe really tired after it, or the kind of shaking would get stronger after it and stuff. And you thought, mm, this isn’t doing me good, but then it was next time you tried to go for a walk, you could maybe go a wee bit further. And then a wee bit further, so I feel like I’ve been able to build myself up. I don’t know if that would have been the same if I’d just been sitting about. So, for me I feel like that’s been a help.

Well, personally I feel like I’ve still got lingering symptoms where, I’ve got like kind of nerve issues throughout my body and stuff, and I’ve still got shortness of breath, so for me that’s concerning, especially because I like to be active, so I want to know if I’m functioning less, so I don’t know if this has, possibly like damaged me in some way. So, for me, I’d like to know, because I’m starting to walk a bit more now, is it okay for me to do that? Can they give me some sort of maybe like a lung test or something like that to make sure that there’s not, you know, or maybe even, I don’t know if this is me just being over-anxious now because I felt so bad, but [inaudible] if there’s maybe been heart inflammation or something. I’d like know that there’s not been anything damaged, really, so I feel like I should actually get a body check, to be honest, but I don’t think you can get that from the NHS, you’d probably need to pay for that private, but I actually feel like I need that, I feel like I want to know that I’m okay.

Sophie said she worried about whether her symptoms were “normal” for people with Covid and whether they needed to be investigated.

What has been the biggest sort of challenges you’ve come across?

Getting clear information, because [coughs], it seems to be, I don’t know, it just seems like there’s so many different kinds of symptoms associated with [coughs], excuse me, Covid, so it’s hard to say, you know, like this symptom I’ve got just not, is that Covid related or is this something else? You know, there’s no sort of clear answers really to say, well, this is going to happen and then that’s going to happen. [coughs] And to expect that, you’re left kind of worried, thinking, oh, is this, this normal to be feeling like this, I need to find out if this is something that’s okay to feel like this if you’ve got or had Covid. So, I know that it’s okay, because it’s expected or has it damaged something, should this be investigated, I don’t know if this is normal, but there’s no real answers, really, for that, I’ve found, really.

 

Sophie liked to keep active before she became ill. She wasn’t able to keep up her activities and her symptoms affected her studying too.

So, I was very…got quite high energy anyway, like I’m not somebody that kind of just sits about, that kind of thing, so when I took ill, that…that impacted that, I had to postpone one of my exams for my studying. It affected the amount of studying that I could do, it just happened to be the time where I would be starting the revision for my exams…so that’s really impacted that and stuff. I don’t know if I’ll, you know, if I would really have been able to do it to the standard that I would have been able to do, so I’ve had to put in special circumstances to my university. And so, say and declare as well, I’ve got a disability, through that, process. I was really active as well, so I was doing a lot of activities, in my free time, like hill walking. I was also, doing maybe running three times a week and also just do exercises daily, it was just something I like to do, keep healthy, and it impacted that because I’m not able to do that anymore.

Sophie said she felt frustrated and angry because she got no support or follow-up from the GPs at her practice.

I know you mentioned that the doctor had said, try some breathing exercises, and those didn’t work for you. Did they give you any other sort of practical, suggestions for things that you could do to sort of manage your symptoms or not?

No, nothing else.

Where did that leave you?

Well, it left me frustrated, angry, because I just felt like, there was no support from the GPs at all. They never even said, you know, we’d like to see how you’re getting on, give us…make an appointment for like two- or three-weeks’ time or something, there was nothing like that. It was just basically, how long is a piece of string [coughs], is what one of them said to me, for getting help, and they just said that I would just…it would take its time, so for me, it just felt scary, because, I just didn’t know what to do, really.

I still have…it’s like pins and needles in my left foot, my left side, and sometimes like my lip twitches on the left hand side and it’s like if I’m tapping something with my left fingers, I can feel a vibration going through, like so the nerves, and the tingling like comes and goes like in different like intensity, and I feel like that for me isn’t right, and I’ve already mentioned it to them and they said it’s maybe my adrenal system.

But I feel like I don’t even want to bother phoning them back to say I’ve still got this, because I feel like I’ll just be shrugged off again.

[inaudible] I just feel like…I’m actually like a hypochondriac or something, that I feel like I’ll be phoning up and just be coming across as, because my blood tests are fine. As far as they’re concerned, my blood tests are fine, so there’s nothing they can do.

Sophie joined a Long Covid support group on Facebook but only looked at it briefly now and again because some of the content made her more worried.

Some people with, …have got information from social media, so there’s quite a lot of, sort of Covid support groups.

Yes.

Have you had any experience of those and kind of what do you think about it?

Yeah, I’ve joined one of the Long Covid support groups, to be honest, I only look at it very briefly now and again, because I find it actually makes you more anxious, because there’s a lot of people in it saying that they’ve been ill for like over a year, you know, started to feel better, then got worse, now they’ve been referred to like, you know, get brain scans and all this kind of stuff, and it just makes you feel like…like really more worried, to be honest. I actually tend not to look at it.

Is there any positives that you’ve found from those groups or has it mostly, made you feel more anxious?

It’s hard, because I don’t know how…I don’t…I’m not really good with Facebook, I don’t really use it normally, so I don’t know if you filter it to find out, oh, I maybe want to look at something that could help this symptom, so if you could maybe…if you can do it that way, I’ve had a look about, I just can’t work it out, so I just seems to be [coughs].

So, it’s…

…for me, it’s too dangerous, because you don’t know if you’re going to read something positive or something negative, because I only want to read something that’s supportive, like going to say, “Oh, if you’ve maybe got really shortness of breath, I’ve found this and that works” or something, but it’s not a case of, I can find that, it’s more a case of, you need to trawl through everything, and you’re reading stuff, it’s like really quite scary as well, so I just don’t know that, really.

Sophie wanted a “body check” to investigate her lingering symptoms and reassure her that it is safe to increase her activity levels. She doubted that this would be available through the NHS.

Well, personally I…I feel like I’ve still got lingering symptoms where, I’ve got like kind of nerve issues throughout my body and stuff, and I’ve still got shortness of breath, so for me that’s concerning, especially because I like to be active, so I want to know if my…I’m functioning less, so I don’t know if this has, possibly like damaged me in some way. So for me, I’d like to know, because I’m starting to walk a bit more now, is it okay for me to do that? Can they give me some sort of maybe like a lung test or something like that to make sure that there’s not…there’s like, you know, or maybe even…I don’t know if this is me just being over-anxious now because I felt so bad, but to know if there’s maybe been heart inflammation or something, I’d like know that there’s not been anything damaged, really, so I feel like I should actually get a body check, to be honest, but I don’t think you can get that from the NHS, you’d probably need to pay for that private, but I actually feel like I need that, I feel like I want to know…that I’m okay.