Daisy

Age at interview: 14

Brief Outline:

Daisy caught Covid in September 2021 at school and after a couple of weeks developed severe stomach cramps. Daisy’s stomach pain, which they noticed was made worse after eating, has been helped by a restrictive diet. They have had limited help from health professionals and Daisy has been off school for the last few months. Daisy was interviewed with her mum in March 2022.

Daisy is 14 and lives with her mum, dad and three dogs. Ethnicity: White British.

More about me...

Daisy caught Covid in September 2021. She was ill for a week with bad flu-like symptoms and a high temperature. A couple of weeks after, she started getting bad stomach pains but thought it might be ‘period stuff.’ In December, Daisy was sent home from school with excruciating stomach cramps, thinking it was period related, but after 6 hours they called an ambulance. The paramedics were considering endometriosis but thought she was too young, and she wasn’t taken to hospital. She took some TXA [Tranexamic acid is a medicine that controls bleeding], which they thought would help but it didn’t.

The pain went away eventually but started again in January when her next period started and ‘it was just continuous.’ They called an ambulance again due to Daisy’s level of pain and this time they took her to hospital. She was prescribed with the contraceptive pill, but this made it worse, and a gynaecologist later agreed the pill was not helping and she came off it, “I had no respite from this pain, three times a day I was in agony.” Over this period, she had been on Oramorph, naproxen, codeine, mefenamic acid, TXA and Amitriptyline but nothing seem to be helping and at the hospital “they were either telling me it was in my head or saying, ‘Oh, here’s some morphine, go home, there’s nothing we can do.’” She saw several paediatricians, but they too couldn’t work out the problem – all her blood tests came back normal. At this time, her Mum started to think it might be Long Covid related.

They decided to see if her pain was triggered by diet as it seemed to be worse after eating. Restricting her diet has helped but she has found she then suddenly reacts to food she previously could eat. Her dad organises all her food charts to see what she can eat. Each food she tries is trial and error and she has to wait an hour between each food to see if she reacts. Daisy is vegetarian, but she currently can’t eat gluten, dairy, oil, or sauces – “We haven't had any, sort of, formal help; we’ve never seen a dietician or anything.” They are on the waiting list to see a dietitian.

Daisy’s pain and restricted diet have meant she hasn’t gone to school in two months, but she tries to keep up with some work online. It has affected her friendships, and she misses her friends “because at school you talk to them every day but, like, now I’m at home, like, they all think I’m dead.”

Daisy finds her pain and food intolerances very stressful, but thinks her parents have been more impacted, mentally, financially, and with work. Her Mum says, “Our priority is Daisy, so actually we move heaven and earth to sort out this situation, so we forfeit other things.”

Both her mum and Daisy have praised the paramedics “every time we’ve had an ambulance guy round, it...they’ve always been so lovely,” but the lack of diagnosis and progress in helping her get better is frustrating to Daisy who has been told by health professionals “it could be Long Covid, but I’m not going to investigate it further and you just have to...when you're in pain, just take more morphine.” She thinks this lack of progress is mainly due to her not having any fatigue symptoms. Daisy has tried to get access to Long Covid clinics, but they are not in the catchment area of any clinics and are still waiting for a referral. Daisy says the lack of belief by health professionals “makes you feel paranoid within yourself, it makes you feel like ‘Oh, I’m... I’m just wasting their time because it’s something I’m doing wrong, it...it’s in my head, there’s nothing even wrong with me,’ and I just think for me to be in that amount of pain, no, this can’t just be in my head, it...there must be something going wrong.” Daisy’s mum finds it unhelpful that they have been “passed around from pillar to post. Never seeing the same person again,” and that the lack of communication between services is infuriating. She has tried to do her own research and contact specialists for help, and some have been helpful.

Daisy felt her fatigue was different from other people’s and was due to being in pain all the time.

And she was like, “Oh, well, Long Covid’s usually fatigue symptoms and so we’re not going to investigate it because you're not fatigued.” But from my point of view, fatigue’s different for everybody. For someone that’s, like, always busy and active, like, they could be fatigued every day and just be used to it, or whereas someone who doesn't do anything and all of a sudden just feels really tired, but then that would be more noticeable. But, like, for me, like today for example I have felt really tired and horrible, but it... I do get tired with this but it’s more so because I’m just worn out from being in constant pain, it’s not like fatigue as in chronic fatigue, but I just get other symptoms as well, but.

Daisy experiences stomach pain all time. It is sometimes ten out of ten painful.

Yeah. So, I get a lot of, like, sickness. So, it’s... I’m never actually sick but it just... I feel it in my gut, like, yeah, it’s really gnarly and it’s like you don’t want to eat much, and also, like, I get... so that obviously the stomach pain, the lower abdomen pain, is all... is there most of the time. If it’s not... so I... I’ve sort... we’ve, sort of, worked out a system of how I describe my pain: so we... we go from numbers from, like, one to 10, but sometimes it goes beyond 10, so we have that problem. But so I... so we have, like, an episode where it’s bad, but within that episode there’s peaks and troughs, so where it gets excruciating and where it’s bearable but it’s extremely painful still. And then I’m... I’m sore most of the time, after these episodes I could be sore for two or three days, and it just stagnates it like a two or a three or a four, but then occasionally I get, like, twangs of pain and where it’s like... it could go up to a 10, but it’s only for a few seconds, and sometimes it’s like I get them, like, 10 times in an hour or something and it’s... and just annoying that you just keep get... “Oww,” and then like that, and you just think ‘oh God, is it going to be an episode?’ but then it just goes off.

Daisy was trying quite a restrictive diet to try to manage her stomach pain, and she missed being able to eat whatever she wanted.

So I haven't gone to school for about two months because every time I go in, they send me home and, like, I feel sick and like I can’t eat very many... much stuff, so I have to eat small portions and often, but then sometimes I get an episode, and so I have like... so if we’re trying a new food, we’ll have to try a tiny bit of it, wait an hour before you eat something else, and if you have a whole plate of dinner, well, I wouldn't have a whole plate, but I’d get a tiny bit of dinner, and we have one bit, and then you have to wait an hour before you have the next bit, and it’s just... it’s frustrating me.

Like, we had a... I was trying sushi the other day and my dad was like... so it was a packet of sushi, and it was a small packet, and he was like, “OK, you have to have one and wait an hour,” and I was like, “Can’t I just eat the whole packet?” And it... it’s just... and I couldn't. And cutting... and things like...for my diet I can’t eat anything fried or just basically I’ve... I eat like a rabbit at the moment, but it’s just like I had... my mum made bean burgers, but I can’t have flour with gluten in it, because we’re gluten-free at the moment, I can’t have any sort of dairy, and so the... and a lot of the egg is high calorie, so the egg yolk is high calorie, so I had egg whites mashed with chickpeas, spinach and tomatoes, in, like a burger with rice flour on it that was just cooked in the oven with no oil or no sauces or no nothing because I can’t eat any of that either, and it’s just like... it’s just, ohh, what I would do for a bit of bread. Yeah.

Oh God.

It... it’s...I think my diet is something that’s just bothered me more, because, like, I used to... I know this sounds bad, but I used to be able to just go in the cupboard and grab some... and when I was hungry or something, but it’s just now I can’t and it’s... yeah, it’s frustrating.

Daisy feels her parents’ mental health has been affected by having to witness her in pain.

Sometimes, like, Nan and Grandad come round, but it’s predominantly [my parents], but it’s just... it’s something that has just had a... such a profound impact on their mental health. Obviously their mental health’s been impacting more than me to be honest. Like, yes, I have to go through all this pain, but they... they... they’re always, like, stressing, and you should see my dad’s spreadsheets of just organising all the food I’ve got to eat and stuff, and it’s just them, it’s like I think they... they... they’re going to... they’ve been looking at the morphine in the cupboard enviously and just... yeah, it’s not... it’s not good for their mental health as well as mine, like, but I think I’m, sort of, holding out better, but for them it’s like their kid I guess, so…

Daisy felt like she had ‘disappeared’ and that she was missing out on time with her friends.

It has, like, affected me being able to talk my friends. Because at school you talk to them every day but now I’m at home, they all think I’m dead, although they’re like... they don’t... they don’t know what’s happened to me and like I... I message some of them, I’ve got their numbers up and stuff and I message them, but I’ve just disappeared, you know, and I haven't come back, and just for me that’s the most frustrating thing is not being able to go into school, and I think that’s what’s... more than the pain, I think that’s what’s impacted me the most.

And do you feel like they try to stay in touch?

Yeah, yeah, yeah. So, my friends tried to talk me and I... I do text them a lot and stuff, but I just feel like I’m missing out on being able to see them every day and like, oh, they go... have non-school uniform days and stuff like that, and it’s just like... and what, I’m just sat at home suffering, you know, and it’s just not nice.

Daisy says her Long Covid is having a profound impact on her parents’ mental health. She thinks their mental health has been impacted more than hers.

Is it your mum and dad who are caring for you?

Yeah. There’s sometimes, like, Nan and Grandad come round, but it’s predominantly them, but it’s just... it’s something that has just had a... such a profound impact on their mental health. Obviously their mental health’s been impacting more than me to be honest. Like, yes, I have to go through all this pain, but they... they... they’re always, like, stressing, and you should see my dad’s spreadsheets of just organising all the food I’ve got to eat and stuff, and it’s just them, it’s like I think they... they... they’re going to... they’ve been looking at the morphine in the cupboard enviously and just... yeah, it’s not... it’s not good for their mental health as well as mine, like, but I think I’m, sort of, holding out better, but for them it’s like their kid I guess, so.

Daisy said that her parents were online every day looking for information about Long Covid.

My parents, every day, are on the internet, researching...and I know you're not...Google isn’t a very viable resource, but when you’ve got doctors that say, “It could be, but we don’t know,” that’s what we have to do, and we would…and it even went down to the point where they had to find their own private, like, Yorktest [allergy test], and then we wouldn't have ever thought about the allergies, and my mum’s friend is also a paediatric dietician, and she’s got other clients, but we’ve had to be asking her, and she works in [city] and it’s nowhere round here, but we’ve still asked her because there are so many failings in this the system around here. We just asked numerous people, but they basically we just get told the answer. Even when we were on a 111 call the other day, it was like, “Oh yes, you should have a health plan, you should be...have a set plan.” Because of all this stuff that’s promised on the NHS website, there’s a set plan for what should happen with Covid.

Daisy was surprised that the GP just kept ordering more blood tests, which appeared wasteful.

Well, we haven't, well, I’ve seen a few different GPs, but the answer we basically got: “I don’t know, we’re going to do more blood tests.” And so we’re at the point where I’ve done all of the blood tests from what...on the screen that I saw at the...paediatrician lady, she...like, she’ll just say, “Okay, we’re going to do all the remaining ones, the ones you haven't done, just to see if we can find anything,” and so the GP was then, “Okay, well, you haven't got any results from this, or there’s only slightly raised on here, so we’re going to just do some more blood tests.” And I love going up to see the blood ladies at the hospital because they’re lovely, but it’s just, they just keep doing more blood tests and, like, we’ve done so many of them now and I don’t think that’s...I think it’s, sort of, wasting resources to just keep doing blood tests and maybe we need to do something more in the form of, like, referring to people that could actually know, because like...I don’t know, if I had a problem at school I didn’t know, I would ask somebody about it or do a little bit of research or something, but, like, they just seem to keep saying, “Okay, I don’t know.” And I know they can’t know everything but at least maybe refer it to someone else that might know and just...because especially since we were seen about the Covid links, because my doctor didn’t pick up...he didn’t say anything about Covid, it was my mum that actually mentioned it in the first place, and for them, they were just, like, toss a coin, it could be, but we don’t think...well, they want to get an actual plausible thing that...well, condition, that they know lots about, and Covid is just, like, something you shove back in the back of the corner because that’s not really investigated, so they’re not really thinking about it. But when we went up to, like, the blood test the other day, asked...the lady said that’s all they were seeing is blood....is Long Covid people, and I think doctors really need to start thinking as Long Covid as a prevalent disease that is happening, especially with all the new Covid infections, and I think they don’t think about it enough in terms of infections.

Daisy (14 years old) was frustrated that she was unable to get an appointment because of where she lives.

Because I understand that there’s restrictions on things, and I understand that people...and there’s limited stuff they can do with the current situations and with all of the underfunding that’s been going on, but for me to see on the news and say, ‘Oh, there’s all this funding going into Long Covid stuff,’ and to be denied access to a Long Covid clinic because we share our Long Covid clinic with numerous other areas and we have to go to [city].

But when are we going to get there, especially since we don’t have access to transport, and, like, we don’t have a car, so it’s...we have to, like, get a lift or something or go on a train, it’s just very difficult for me just to be recognised as well as being...like, people not knowing what they...or what condition I have, so...or they’re just saying, “Or it could be Long Covid, but I’m not going to investigate it further and you just have to...when you're in pain, just take more morphine,” and I don’t think that’s really a problem...an answer to the problem to be honest. So yeah, that’s, sort of, my story.

Daisy thinks it is important to remember that ‘it’s not forever’ and that ‘there will be better times.’

Oh, just...right, I say just remember, it’s not forever. Like, yes, we don’t know, but it could get better at...well it will get better at some point and there will be better times. Like, it’s not...you're not going to be like this forever, someone will find an answer.

Daisy praised the way that the ambulance staff treated her, but she was frustrated because she felt some paediatricians thought her pain was caused by anxiety.

Daisy: For maybe this...for, like, them to acknowledge that there’s something wrong. Because I think that’s been another sticking point, they’re just...like, a lot of the paediatricians, they don’t know and they’re just saying, “OK, so I can’t...,” like, I don’t know what the exact word is but it’s like—

Mum: Psychosomatic.

Daisy: Yeah, psychosomatic, and they’re just...and they just bring up that, and that’s why we’re going to [city] just to, like...what...do the pain management clinic, and I just think that ‘Yes, all right, that could help,’ but I just don’t really that’s the alley we should be going down, because it strings our anxiety, and admittedly, yes, I do get anxiety, but I get anxiety about school and sometimes when I’m out on a walk.

I get pain a lot or...well, not any more than usual but I get pain out on a walk, and what would there be a reason for me to get stressed when I was out there, you know? And I know when I’m stressed, like, I can work that out, and I just don’t think it...why would I be getting pain there if it was something to do with anxiety?

And I just think ‘Mmm, is this really the right route we should be exploring?’ and I, sort of, feel like it’s sort of...although it’s not like the drugs, I feel it a little bit like the drugs, it’s just masking the symptoms. So, like, yes, breathe and we can do that and stuff because that’s what a lot of them just say just to work out how to breathe and stuff. But I don’t think…I think that’s a genuine problem that just needs to be investigated and just takes, like, the right people to connect the dots and thing, but, yeah, it’s a little bit frustrating.

I sort of feel that the...more so the ambulance people and the blood ladies, they sort of...well, maybe not the blood ladies so much in this case scenario, but I think the ambulance people have more time and they’re more open to different suggestions, where I think the GPs and the paediatricians people are more focused on, ‘Oh yes, it could be a diagnosis,’ but I think they’re always more...or like, welcoming, and just, like, every time we’ve had an ambulance guy round, they’ve always been so lovely, and I feel like they’re the sort of people that...you know, like, they represent the face of the NHS, but I think that doctors and nurses, and stuff, should just aspire to be like them and as open-minded as them, and to also just...I feel like they’re always more chirpy and stuff and they’re more welcoming, because I guess they’re coming into your home, but just, like, although they’re always really nice and reassuring. Because I remember I had this guy, and I was in a lot of pain, but he just, like, kept reassuring and saying, like, “It’ll be alright,” and because I was just cautious because I knew they were busy up there and stuff, and he was like, “Look, there’s other people up there that, like, addicted to drugs or I’ve had other problems like that and they don’t want to get help, and when they go home they’ll just keep taking stuff like that, but with people that genuinely want to get help, we can help them.” And I think they were really good at just, like, quelling fears and stuff.