Eleanor

Age at interview: 13
Brief Outline:

Eleanor caught Covid in November 2021, not long after getting her first vaccine. Initially her symptoms were mild, but then gradually got worse until she had to spend weeks in bed. When Eleanor was interviewed she felt her health was getting better, and she was slowly starting to get back to dancing and other things that she loves doing. Eleanor was interviewed in June 2022.

Eleanor lives with her mum and her older sister, who is away at university. Eleanor is homeschooled and is currently managing about a day and a half, balancing this with other activities. She describes her ethnicity as White.

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Eleanor caught Covid in November 2021, not long after having her first vaccine. Initially her symptoms were mild but gradually got worse with Eleanor experiencing constant headaches, feeling tired and achy all the time, and brain fog. Paracetamol and ibuprofen help a little with her headaches, but don’t get rid of them. Eleanor had eight weeks when she couldn’t do anything. Her mum took unpaid time off work to care for her, as she even needed help to have a shower. Eleanor lost a lot of weight because she stopped eating as she normally would due to having lost her sense of taste and smell and having no appetite. Her sense of taste and smell has not returned to normal.

Before catching Covid, Eleanor was being home educated. She used to do a lot of ballet and other types of dancing. She finds not being able to dance as much as she used to the hardest part of her Long Covid and it makes her sad, as she hopes to dance professionally in the future. Eleanor misses seeing her friends, but they have been supportive, and she is trying to see them for a few hours of low energy activity. Eleanor feels she is improving a lot and wishes she could get rid of her headache, which gets worse when she is concentrating on something difficult. She is managing a day and a half of home school and slowly getting back into dancing. Her dance teachers are understanding, but after lessons she is really tired. She has to be careful she doesn’t overdo it because that sets her back to needing to spend days in bed. She is still working out how to get the balance right. Eleanor finds that sometimes people don’t realise how Long Covid affects her because she no longer looks as ill as she did at first. She is terrified of getting Covid again, especially as most people aren’t wearing masks anymore. She thinks people don’t realise how serious Long Covid can be.

Eleanor’s mum contacted the GP about her symptoms but they didn’t find the GP particularly helpful. Eleanor was referred to a Long Covid clinic and is waiting to receive an appointment. The family knew a doctor personally who specialised in Long Covid and Chronic Fatigue Syndrome, so Eleanor started seeing him. He recommended vitamins and she gets acupuncture every two weeks which helps her headaches. Eleanor takes antihistamines and has a mainly gluten-free diet, as she started reacting to foods, including gluten, orange juice, and Ribena. She has tried ginseng, takes medication to help her sleep as she was waking a lot during the night, and has just started a course of oxygen therapy. Because her body seems to be reacting badly to many things, Eleanor is waiting for that to settle before having her second vaccine.

Eleanor has mainly found out about Long Covid from the doctor she sees. Through a Long Covid charity, they have come to know about other teenagers affected, which has been really helpful. Eleanor would like research to focus on how to help people recover faster, and to let others her age affected know that it gets better.  

Since the time of the interview, Eleanor's health became worse again and she has had extreme tiredness and an ongoing headache. Her GP had not referred her to a Long Covid clinic, but rather a general paediatrician instead. She awaits that appointment. At the time of writing, it has been a year since diagnosis and Eleanor is downhearted. For the first time, Long Covid is affecting her mental health as she is frustrated at the physical symptoms continuing.

 

Eleanor found that taking painkillers made the headaches hurt less, but they are always still there.

Eleanor found that taking painkillers made the headaches hurt less, but they are always still there.

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It’s a constant thing that hasn’t like gone away, and... and it’s been like this since November, and I've like tried taking like paracetamol or ibuprofen and it... it’ll take a while for it to like kick in but then it’ll work for a little bit but it’s still there and I can... but it hurts less.

 

Eleanor’s taste and smell are ‘completely off’. She has no appetite and has lost weight.

Eleanor’s taste and smell are ‘completely off’. She has no appetite and has lost weight.

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I... so I lost my taste like after now, but it... my smell and taste are kind of like... I can still smell and taste, but it’s just off, like completely, but before, I just had no appetite to eat, and I just couldn't so then I just lost lots of weight...

 

Eleanor had a difficult time at Christmas but now was ‘really feeling a lot better’.

Eleanor had a difficult time at Christmas but now was ‘really feeling a lot better’.

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Yeah, it... it was hard, and it was hard at Christmas, and it was not fun, and you know there was like a lot of like other like side-effects like going up and things, but like I'm really feeling a lot better and hope it stays that way, so...

 

Her GP was not very helpful but Eleanor managed to see a doctor who specialised in Long Covid via a contact in her church.

Her GP was not very helpful but Eleanor managed to see a doctor who specialised in Long Covid via a contact in her church.

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Mum: I had a phone consultation with the GP—

Eleanor: Yeah.

Mum: —who wasn't particularly helpful, at all. But then coincidentally we actually knew somebody from a long time ago actually, from our church in [city], who had also moved to a different area and he was working as a doctor specialising in Long Covid and chronic fatigue syndrome, so we started seeing him.

Interviewer: Okay, and can you tell a wee bit about what that’s been like, you know, what’s it like being seen by him?

Eleanor: It’s been good and he’s like recommended like all like vitamins and tablets that I've been taking, and things like acupuncture. So, I've been...I've gone to lots of...I've been doing lots of that, so I've had them in like my arms and my legs and my head one time. And I feel like that kind of helped a bit with the headache but it’s still there, and I'm still now still working on to trying to get rid of it.

 

Louise had to provide information to the doctor so they would know where her 13-year-old daughter Eleanor needed to be referred.

Louise had to provide information to the doctor so they would know where her 13-year-old daughter Eleanor needed to be referred.

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So they didn't really know what they were doing anyway with referring a teenager, they didn't know if they could, they didn't know what the...I had to send them all of the links to show where we needed to be referred, and it’s kind of gone beyond the stage now where that would be really useful, we needed in December or January, we don't really need it now, but that’s only because we've been lucky to see this Covid specialist doctor who suggested all of these things.