Jake

Jake developed Covid symptoms in late November 2020 at the same time as five of his classmates but didn’t have a positive Covid test. He felt that NHS doctors have tried their best but don’t know what’s going on, so he went to a private doctor. Jake was interviewed in November 2021.

Jake developed Covid symptoms around the same time as five of his classmates in late November 2020, and his whole year group was sent home from school. He didn’t get a positive Covid test, but his symptoms – including Covid toe – made him sure he had Covid. Over the next couple of months, Jake started to get spells of a spinning head and they happened more and more. In mid-January, Jake’s left arm went numb and he was sent to hospital.

After a couple of months, Jake’s arm slowly got better. In February, he was given medicine for a fever and rash he had, which he felt also helped with his spinning head. Although his head wasn’t spinning as much, he felt that he was still getting light headed and thought that he might faint. This feeling gradually got worse and Jake ended up fainting almost every other day. At this time, he would spend all day in bed or on the sofa, and sometimes wouldn’t shower for a couple of weeks.

As Jake didn’t have a positive Covid test, he felt it made consultations with his doctors more difficult. A number of doctors dropped Jake’s appointments because they felt he was “outside [their]… expertise”, and he found that his age meant he was bounced between paediatrics and adult care. Jake felt that his hospital appointments were really helpful because the tests were quick and his results came back fast.

At one point, Jake’s family decided to go through private healthcare to see if they could get some help. One private doctor used a tilt-table test and was able to diagnose Jake with PoTS (postural tachycardia syndrome – an abnormal increase in heart rate that occurs after sitting up or standing), which was a relief. Before going private, he had been told that his symptoms might have been “just mental” and so his PoTS diagnosis reassured him he wasn’t “going crazy”. Jake felt that NHS doctors had done what they thought was right but didn’t really know what was going on.

After getting his PoTS diagnosis, Jake felt that consultations became much easier – especially after he also got his Long Covid diagnosis in March 2021. Jake had been referred to a Long Covid clinic but felt that it wasn’t very good because it wasn’t in-person and he didn’t know what he wanted from the service. However, Jake felt the fatigue therapist he saw after getting a cold and relapsing for around three months was much better. Jake had been struggling to sleep and was given melatonin for this, as well as working on energy plans with the therapist to get back to doing what he loved before Long Covid.

Jake had recently joined a group therapy session for other 16–17-year-olds with Long Covid. Jake felt that this group has been “helpful to see that [he’s] not alone” but would warn people not to compare themselves and their recovery with others.

Jake says that melatonin has helped him to sleep and group therapy with other teenagers his age has helped him feel that he’s not alone.

Age at interview 16

But I wasn’t fatigued because I wasn’t actually feeling tired. I just wasn’t sleeping. But that really happened to me and I got melatonin now, which helps a lot with my sleep. It’s so nice to be able to sleep again.
 
So, yeah that kind of all happened kind of up to speed and now I’m in group therapy with some other sixteen, seventeen-year-olds, which was helpful I have to say. It’s been… I don’t know at the moment, we’ve only gone over stuff went over with sleep therapists. But it’s still really helpful to see that I’m not alone and there’s other people with it as well.

 

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Jake was feeling better over the summer, but his symptoms relapsed after he caught a cold.

Age at interview 16

But in the summer, it seemed to get a bit better, which was weird, but then I had a then I had a cold [laughs]. I actually went, we went on holiday because I seemed to be doing quite well after that, I felt quite rough afterwards again for several weeks. And then, after that, I got a cold and I relapsed for about three months, not really being able to do much at all.

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Jake really likes his fatigue specialist and has had a very positive experience with her.

Age at interview 16

I really, really liked the fatigue therapist. She was really good. Even though I didn't have fatigue, she didn't drop me and helped me work through my sleep and then gave me just some energy plans to help manage my energy and get back to doing the things I love. Cycling, which I admittedly haven't done yet. But hopefully I’m on the path. She was amazing. She was really good. Yes, so and I did five or six sessions with her and I felt so much better being able to get to sleep. Sleep handling tips and so on, melatonin, it was just amazing.

Because she was, she explained everything and she did her and [specialist]– actually [specialist]was really good with that – they both explained it and they tried and understood what was going on. That was just really good. And also, they both gave really good advice that actually helped me when I followed it through. And they were just patient and actually talked it through and didn't drop us, basically. It was just a combination of all of the…that they were patient and kind and talked it through and they actually knew what they were talking about.

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Jake’s symptoms changed across several months. These included discoloured toes, head spinning, numbness in his left arm, fever, rashes, and fainting.

Age at interview 16

So, in, it was the end of November, beginning of December in 2020. And there were five or six of my classmates got Covid and my year got sent home because of it. I ended up catching Covid from that. I never got able positive test results, but I had some symptoms which were very specific to Covid, such as Covid toes and it was, it seemed to be alright afterwards that I seemed to have, start having my head was spinning spells, gradually increasing over the next couple of months. And then in the middle of January, I had a really weird thing my left arm suddenly went a bit numb and lost sensation in it. I was sent to hospital, and it was just interesting experience. And then it felt after hospital that it gradually got better over the next couple of months. It took a while, so it kind of settled down.

In the February, I came down with a massive fever and some rashes and ended up getting admitted again. Got some fluids and so on that medicines and then I had a low fever from then on. And it’s been really interesting. But yeah, so after that I started feeling not as though my head was spinning as much, but my head was getting quite light and I felt like I was fainting, about to faint. That gradually got worse. Till it got to the point where I was fainting almost every other day and I couldn't really do much. I’d either stay in bed all day or I’d stay on the sofa all day and wouldn't shower for a couple of weeks. That, that was really not a good time.

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