Ellen

Age at interview: 58

Brief Outline:

Ellen lives with her husband and their dog. Her son recently moved out and she has a daughter with a disability who she cares for, and a granddaughter. Ellen is a health service worker and looking to return to work. She describes her ethnicity as white. 

Ellen had cold or flu-like symptoms before developing chest pain which lasted for months. Before having Covid she was very active, running daily, and on the go all the time. The biggest challenge she still experiences is extreme tiredness. Ellen was interviewed in February 2022.

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Ellen first experienced symptoms in early September 2021. It felt initially like a head cold and she did a lateral flow test as a precaution and was very surprised when it was positive. She then began to feel much worse and developed flu-like symptoms, fatigue, dizziness and chest tightness. After about two weeks she started to feel slightly better but then developed chest pain. The GP referred her to the hospital. She was admitted for three days and had a series of tests which showed inflammation around her heart. By the time she was discharged she felt she was a ‘completely different person.’ She had no energy and spent her time lying on the sofa, too exhausted to do anything. 

Ellen has experienced a range of ongoing symptoms over the months since, including chest pain and chest tightness which made it difficult to breath, extreme mental and physical fatigue, dizziness, difficulty sleeping, feeling the cold, brain fog, and tremors and trembling in her hands. She has gradually come off the medications she was given to treat the pain and inflammation. She is finding her symptoms are now starting to ease to be ‘at least bearable,’ but she still experiences extreme tiredness after physical or mental activity. She has kept a diary of her symptoms to help her try to make sense of her experience and it has helped her see that she has improved. She has been able to build up the amount of walking she can do. She said when her symptoms were at their worst, you can feel like you’re ‘going mad.’

Ellen is trying to negotiate a phased return to work but is finding that current policies and practices don’t seem to meet the needs of people with Long Covid. She’s unsure how she will cope with the demands of the job when she returns, particularly because she can feel better or worse on any given day. The change in her ability to perform her caregiving roles outside work has also been difficult to adapt to, and she sometimes feels guilty that she can’t do all that she used to and hasn’t been able to be ‘there for’ the family members who need her. Having Long Covid has made her rethink her work-life balance and her family roles are something she would like to prioritise more going forward. 

Ellen found her usual GP quite supportive but has tended to ‘just get on with things’ and only asked to see the GP at the time she had chest pain. Otherwise, she has managed appointments and prescriptions by phone. When it wasn’t possible to see her usual family doctor, she didn’t feel as supported. Ellen is still on the waiting list for a Long Covid clinic, but she has been able to get support from another organisation which provided links to helpful reading from physiotherapists and other health professionals about how to pace her activities.

Overall, she takes what she can from Facebook, but doesn’t get too involved to avoid the aspects that she finds unhelpful. Being able to relate to other people’s experiences on Facebook has been useful. It has helped her to learn about new developments and she has been able to share these with her HR department and her family.  She thinks it’s useful for her family to read about other people’s experiences of Long Covid, to help them to understand what it is like for her.

Her advice to others is to accept that it will take time to recover and to be kind to yourself and listen to your body. She thinks it is helpful to keep a diary of symptoms. She doesn’t yet see much improvement in people’s understanding of Long Covid. She thinks it’s important for health professionals to listen and have empathy for their patients.  

Ellen was admitted to hospital and diagnosed with inflammation around her heart. She was prescribed anti-inflammatories, painkillers and a tablet to protect her stomach. She was relieved when she no longer had to take any tablets.

Now I’m not on any for any of it, but what I was on was…I was on…when I first came out of hospital I was on, a long term three month of Colchicine, which is an anti-inflammatory, and I was on a strong dose of ibuprofen which I was only to be on for two weeks, and I was on omeprazole to protect my tummy from the ibuprofen. I was on paracetamol and I was on codeine, and I’m not a tablet taker at all [laughs].
 
So that was quite an issue for me, but anyway, I got used to taking them. I stopped the ibuprofen, as I was told to do, but I was getting quite a lot of pain still, so the GP put me back on it, and the Colchicine I was on for three months, so that finished in December sometime, so, that stopped, the brufen stopped but again I was still getting a lot of the pain so she put me back on the stronger dose Ibuprofen and the omeprazole again, so I’d gone from being off them to back on them again.
 
I stopped the Ibuprofen just two weeks ago, because it was starting to…even with the omeprazole, it was starting to affect my tummy. I was getting a really sore stomach, so I stopped it.
 
And the paracetamol…the codeine, I started weaning myself off it and down, probably in Jan…it was in January I think I’d finished it, and I’ve only just been weaning myself down off paracetamol. I don’t take anything, I haven’t taken anything for, since Sunday [laughs]. That’s quite fresh, so I must admit…
 
How do you feel about it?
 
I’m glad, but through the night I thought, I’m going to have to go and get something, but it has settled again. Because I’m not a tablet taker [laughs].
 
And were you on any other treatments for any of the other symptoms that you were experiencing?
 
No, I just persevered and just got on with it.

 

Ellen’s GP suspected she had a clot on her lung and sent her to hospital. She was an inpatient for three days. After having some tests, she was diagnosed with myocarditis and pericarditis.

I started to feel slightly better [coughs] after two weeks [coughs], but I got signed off work obviously, because I wasn’t well enough to go back after the, ten days…no, it was fourteen days at that time of isolation. I still wasn’t ready to go back, so I did, on the Monday, sorry, I have to think about the days in some ways, I actually…for the first time I felt able to go out and went to visit my son, and I wasn’t right. As the day went on, I don’t know whether I’d just done too much and not realised, because I thought it…you know, it was like getting over a normal cold, but by the time I was coming home, I just didn’t feel well at all, and then the Monday, I had really bad left-sided chest…well, I thought lung pain, and it was just this chest infection that I thought in my head was brewing, because I have had pneumonia previously.
 
And as the day went on, I got worse and worse, couldn’t do anything, the pain was horrendous, so I did go…I spoke to a GP, and they asked me to go down and see them, to listen to my chest, because I said I was just getting worse. So, I did go down, and I was there for quite some time, and then she sent me through to hospital thinking it was a blood clot, because I was desaturating, I was so, so dizzy, I just wasn’t able to function very well. So, my husband took me through, and I was admitted, and I was there for three days, had a series of tests and they discovered it wasn’t a chest infection, it was actually my heart, and so they diagnosed me with…there was two diagnoses. One was myocarditis and one was pericarditis, both are inflammation around the heart. I was then sent home. By this time I was absolutely…I was a completely different person, and I normally run every single day, prior to this, I’ve run all the time.
 
Fit and healthy, I’ve got a busy life, and I was basically from then onwards on my sofa, which I’m still on now with my pillow [laughs].

 

After having symptoms for 12 weeks, Ellen was able to self-refer to a Long Covid clinic in her area. It had a very long waiting list and she wondered whether she would ever get an appointment.

I had to pace myself. Now, that was very, very hard, and that was another question that I did put at one of my HR meetings was, the GP had suggested I self-refer to…there was a clinic in…not my local hospital, but one just a bit further away, that they do some sort of Covid clinic, and in [area] it’s called [name of service]. So, I did try and investigate all that, and she also said…oh no, she gave me the number for that, it was a self-referral, but you couldn’t actually put your name down for it until you were twelve weeks into it. So, I did raise it with my HR department, because I said, look, the pacing side of things is really difficult, and they couldn’t chase up the referral either, you know, you still had to wait ‘til the twelve weeks. So once that came, I put myself on the waiting list, and I’m still on the waiting list. And I’ve raised that again with HR and they can’t chase it any further. They said, yeah, there is a big waiting list and they’re trying to work on that, but still nothing. Since heard somebody else on the Facebook group that I’m on, they’ve been waiting, same area in…since June last year. There’s no chance I’ll get seen, hopefully I’ll be, you know, well, but that was another sort of cry for help in a way, because I’m not used to being still and not used to doing nothing, what little bits of energy I had, I wanted to be able to do something.
 

 

One of the big messages from Ellen was to be kind to yourself and your body.

But unfortunately, it is time is the biggie, and it’s being kind to yourself and kind to your body, and listening to your body, and not to feel guilty, because I did try, I did try to work through, because I’m just that sort of person, I’m old school, and I had to give in. So, I think if people…yeah, are thinking they’re heading that way, because it’s really hard, because Long Covid label doesn’t kick in ‘til a certain time, and I didn’t think I was going to get to that time. But I did, but I think it’s just…it’s just listen to your body, and if you are knackered and don’t feel like doing anything, don’t feel guilty.

You just have to…you just have to go with it. It’s still going to take time to recover, but if you…if you don’t listen to your body, it’s going to take even longer.