Susan

Brief Outline:

Susan lives with her husband and has two children, one of whom also has Long Covid. Susan is a teacher. She describes her ethnicity as white. 
 
Susan contracted Covid in September 2021. She had asthma as a child and in adulthood has occasionally used inhalers after a cold. Since having Covid she has not been able to go back to work. She is currently taking part in a Long Covid rehabilitation programme. Susan was interviewed in May 2022.

 

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Susan caught Covid in September 2021, and initially experienced flu-like symptoms (muscle aches, temperature, and fatigue, feeling generally unwell) but no cough. After about 10 days, her breathing got worse. She checked her lung capacity on a device at home and contacted 111 because the reading was very low. After a long wait, she got a call asking her to go into a clinic, where they checked her blood pressure which was very high. She then got immediately sent to Accident and Emergency where she had a range of hospital investigations. She was discharged and asked her doctor to monitor her blood pressure. 
 
After a few months, her blood pressure returned to within the normal range. In the meantime she had an appointment with an occupational health. She initially tried a phased return to work from December, but this was too soon. After she did her first morning’s work, she felt really unwell the next day. The following week she tried doing a morning’s work again, but again felt totally ‘wiped out’. During this time she also had to care for her mother who was dying. She said she had a ‘big crash’ in January, experiencing extreme fatigue, and developed ‘unbearable’ insomnia that only improved with medication, which she still takes. 
 
After five months she developed tinnitus (ringing in her ears) that gets worse on days when she is tired or does too much. She has not fully regained her sense of taste and smell and she still has post-exertional malaise which makes it difficult to do her job.
 
Before catching Covid, Susan was working as a teacher. It had been a stressful and busy time with the challenges of teaching during the Covid restrictions earlier in 2021, but she and her family were enjoying the return to more normal, busy, family life. Because of her ongoing symptoms, she now  feels like she is ‘just existing’. She feels tired out by small things. Her son also has Long Covid which has reduced the activities she used to do with him. 
 
Partly through advice from the Long Covid clinic, she has realised that she needs to take very regular breaks to pace her activities. She now tries to only do ‘the essentials’ and has cut ‘right back’ on how much she does each day to manage her post-exertional malaise (which for her is extreme fatigue after doing too much, that sometimes arrives days after the activity). This feels like a total weariness and aching all over and heavy muscles.  Even short conversations (e.g. chatting with her neighbour) are exhausting. She has also learnt that pushing herself and just ‘carrying on’, as she normally would, makes her worse.
 
Susan has seen an occupational therapist, has had regular contact with her GP and occupational health services at her workplace, and has been referred to a Long Covid clinic. She has been proactive in finding information, especially through Facebook groups for herself and her son. She has shared information with her employers to help them to support her. As well as the insomnia medication, she takes Vitamins C and D and magnesium.

She had to wait a long time to join a Long Covid rehabilitation programme that she is hopeful will give her more strategies to manage her symptoms, and in the end a phased return to work when she is ready. Through doing this programme, she has realised that she may not recover completely to where she was before and she may need to consider changes to her career.
 
Susan thinks Long Covid is not well understood in society in general because it is ‘so new’. She finds that keeping a note of her symptoms is useful, and can help when speaking to the doctors, especially because doctors are still learning themselves about Long Covid.

Looking back, she wouldn’t have pushed herself to keep going as much if she had known that could slow down her recovery. She emphasises that people should be proactive in finding information because it is new to everyone. She also recommends trying different things to see what works. Her advice to health professionals is to be empathetic and understanding, to see the problems as real, and remember that people’s symptoms vary so much. 

 

Susan realised that to have a chance of recovering she needed “to stop doing everything other than the absolute essentials.”

But yeah, I just exist. I just, I go out for a little dog walk. I try to do that most days. When I had my big crash in January, I wasn’t able to walk him very much really. But I try to get out with him most days. If I know I’m doing something else, say if I had an appointment or something, I wouldn’t walk him very much because I’d know that I couldn’t manage sort of both those things. Or if I’ve sort of, if I’m catching up with a friend, I’ll know that might tire me out, so I’ll be careful with what I’m doing the rest of the day.
 
And now I’m sort of part of this Long Covid clinic and I – and also the advice my son’s been given – I’ve realised that I’ve just got to, I’ve just got to take it right back. My activity levels have just got to be so minimal in order to give me the chance of recovery. And I think before, I would sort of potter about and try and do things. I’d, you know, sit down and sort out a drawer or do things like that. And I’ve just stopped doing everything other than the absolute essentials. And I’m only really sort of getting round the house for cleaning over the space of two weeks rather than I’d normally try and do all those things every week.

 

As part of a Long Covid rehabilitation programme, Susan was in contact with an occupational therapist. She hoped that they would help her to arrange her return to work with her employers.

I’m doing a Long Covid clinic rehabilitation programme. So, it’s seven weeks of the course followed by a one-to-one session. And if at the one-to-one session they feel that I’m well enough to try going back to work, they can give me an employer letter sort of tuned to exactly what I might need, any reasonable adjustments or anything like that. So, then I can then have a conversation with work, and we can then discuss what their recommendations are, what adjustments I might need, how a phased return might look. I think that’s good and so it, each week is looking at slightly different things. So, the first week was an introduction, this week we were looking at fatigue and managing fatigue and that carries on next week. And then there’s other things to look at. And then strategies given and sort of homework, in a way, so that we can try and build those strategies and techniques into our life and see how we can improve. And then when I have the review then we’ll see.
 
And who is it that’s running that rehab programme?
 
So that’s a Long Covid clinic assessment from an occupational health practitioner and she assessed as to where I was. So that was about an hour-long appointment. And then she said that I wasn’t bad enough to be referred to a fatigue clinic because that was literally for people who couldn’t get out of bed and struggled to have a shower. But I definitely needed some help. So, then she referred me on to this programme, which I had to wait a few weeks for that to start. And that’s run by an occupational health specialist in ME and chronic fatigue. And now, Long Covid.

 

When Susan called NHS111 due to breathlessness, they called her back advising her to attend a “hot clinic” for assessment. She was then sent straight to Accident and Emergency because her blood pressure was worryingly high.

And then sort it got to round about day nine, ten and I felt that my breathing wasn’t sort of at its full capacity. I didn’t really have sort of strength behind my breathing. So, I did I had one of the old asthma peak flow devices so I did that and my peak flow was really quite low, it was equivalent of an eighty year old or something when I looked it up on the chart. And I thought, well that’s not right.
 
So, I rang the I rang the, I think I rang one, one, one yeah and then they said to that they would be someone to call me back. And I waited for hours and hours for someone to call me back [laughs]. And I ended up, I was getting ready for bed, I took my contact lenses out, I did the whole getting ready for bed, it was about eleven o’clock at night [laughs].
 
And some…they phoned me back and, and they decided they wanted to see me. And they got a hot clinic set up that I could go down to. So, I went down to that so I was there about half past eleven at night and was sat in the car waiting. And they…eventually got called in because they’d had some sort of emergency, so I was just sat there for ages in the car in this cold carpark.
 
And they called me through and, and he checked my blood pressure and he just kept repeating checking my blood pressure. and then asked me to do a urine sample and various other things. And he said he was really concerned about my blood pressure because it was super high. And he printed out a letter for me and said he wanted me to go straight to A and E because it was so high. So, I went off to A and E [laughs]. So, I was there just after midnight and they then did a whole set of checks, chest x-ray, blood tests, ECG and that all came back okay.
 
My blood pressure came down slightly while I was there. And they said oh, I think what you should do is I think you’ll be okay I want you to go back and then see your doctor or, or have it checked at your doctors in about a week and a half to two weeks’ time.
 

 

Susan described how keeping a record of symptoms was really helpful when talking to her GP.

So based on your experiences, do you have any messages for others affected by the condition?
 
I think if it’s starting to go on, I think keeping a record of what’s going on is really useful. And keep having conversations with your GP. And that’s quite hard, because it’s hard to get appointments. But I think being quite firm that you need an appointment and talking it through with them. Because it’s vital really that they can track back your symptoms to your Covid infection. Because they have to rule everything out before they can say oh, it’s Long Covid that you’ve got.
 
So, I think that was really useful that because I had a conversation with my GP about whether something like HRT would help because there’s been a little bit of research on that helping some women sort of my age. And he was saying that that wasn’t really relevant to me because you could track back all my problems to that initial infection. So, and I think, you know, it’s going to be difficult for people when people aren’t testing. And they might not even realise they’ve had Covid, and I think that’s going to be very difficult, moving forward in the future. So, I think, you know, if you think you have, just keeping a note of it really and that bank of evidence and knowledge. And there’s lots of different things to try and I think different things help different people. So, I think it’s, you know, you have to be proactive yourself of finding out information and trying stuff. Some people have found antihistamines help, you know, things like that. Because everybody’s learning. The medical profession are still learning so much about it, so they don’t have the answers.