Charlotte

Charlotte got Covid in October 2020 and say she was the “poorliest” she’s ever been with a virus. Charlotte feels that having Long Covid has had a big impact on her relationship with her children. Charlotte describes this as “heart-breaking.” Charlotte was interviewed in November 2021.

Charlotte got Covid in October 2020 and say she was the “poorliest” she’s ever been with a virus. During the first 6 weeks she describes fainting, being really breathless and suffering with chest pains. Around the end of the year, Charlotte was still struggling with breathlessness, lots of nerve pain and describes having been practically bedbound for two months.

Charlotte attended a Long Covid Clinic and was diagnosed with POTS (Postural Orthostatic Tachycardia). She was also diagnosed with Ehlers-Danlos syndrome, which she said she probably already had pre-Covid. Over time Charlotte has seen a number of private health care professionals and has continued to suffer from a range of symptoms (e.g. blood in urine, blisters on her feet) which she was told were probably related to Long Covid.

Charlotte feels that having Long Covid has had a big impact on her relationship with her children. She says before, she used to do everything for them but that now “they don’t rely on me the same.” If they need somebody at night time “they don’t shout mummy anymore, they shout daddy.” Charlotte describes this as “heart-breaking.”

Charlotte’s illness has also prevented her family from doing things together that they used to enjoy like going on camping trips. She feels like her husband has had to take over a lot, and that “he’s had an equally tough year….just in a different way.”

Charlotte has lost touch with a lot of friends like the mums from school, because her symptoms stop her from being able to socialise: “I suppose from their point of view I’ve like disappeared.”

 

Charlotte described lots of worries – whether she would get better, and the impact of her illness on her family life and her job.

Age at interview 29

Gender Female

Yeah, I worry if they get Covid and be like me. Because there has been talk of these like POTS and the things, they’ve told me have been genetic. I think it’s, will I pass that onto them. Will they react badly? I worry that I’m not gonna get better and it’s gonna be some sort of autoimmune condition and I’m not gonna be here for it. And I worry that I’m gonna stay as I am and never be able to be part of their lives. I worry me husband will want somebody else because you know, I’m poorly and not bringing a lot to his life, but stress. So, yeah, lots of worries. Worries financially. What am I gonna do when my pay stops and I worry I’ll lose my nursing qualification if I can’t get back soon that if for years you’ve not worked, you lose it. I’ve done coming up 18 months. So, lots of worries.

 

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Charlotte compared the NHS and private doctors that she had seen. She felt that private consultants had “been more willing to put their neck on the line and say, ‘I think it’s this’”.

Age at interview 29

Gender Female

And so I saw a lot of doctors in hospital. I saw a rheumatologist because I’d got rashes and blisters on my feet and my legs were poor circulation. And she was the one who diagnosed me with Ehlers-Danlos syndrome. And I saw the cardiologist again in hospital and a neurologist and none of them could really give me any help other than other than the wheelchair. And so, when I came out, I were really hopeless. And we, I would Googling it with my husband about the circulation in my legs. Looking at the Ehlers-Danlos syndrome because that’s what I was told it was. And it were coming up saying, POTS. So I thought, ‘Oh that feels more likely ‘cos it feels, to me it just happened after Covid and the POTS was post Covid.’ So, I paid to see a POTS specialist cardiologist about my legs to say they’re blue. Does he think it’s linked to the POTS. And he said, “Certainly is.” Started me on a tablet. And then reviewed me like every six weeks after that.
 
What was it about trying to access care through the NHS that meant that you chose to go private?
 
The specialist knowledge and the, the doctor, the doctor that I was seeing in the NHS was saying and still say, “We don’t have any evidence. We don’t, we’re not authorised to give you treatment. We know this is all very new. There’s nothing we can do.” Whereas the private doctors have been willing to put their neck on the line and say, I think it’s this and I think it’s that. And I’ve had to accept they might be wrong. They might be guessing. But they’re the only ones who’re trying anything or suggesting anyway that I can get better.
 
Lots of the doctors or every doctor that I’ve seen on the NHS have said to me, “You seem like you've got POTS or Ehlers-Danlos syndrome or Long Covid. There’s nothing we can do to help.” The cardiologist gave me some tablets and said she’d review me in six months and then that meant I were left at home for six months, in the wheelchair, poorly. So, we just, just for speed really to be seen and to get options for treatment.

 

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Trigger warning; Suicide: Charlotte was taking strong antidepressants and felt “numb at the minute”. She had some suicidal thoughts.

Age at interview 29

Gender Female

Do you feel kind of isolated from your life?
 
Yeah, massively. I’m on some strong antidepressants. I were, in the summer holidays I were suicidal. I were really and I didn't, I’d never experienced it. I’d worked with people who’ve suffered with their mental health, as a nurse. And thoughts were coming into my head, telling me, there’s no point in me being here anymore. And I thought, I need to tell somebody about this. And I didn't have any control of them. So, I started on antidepressant which helped and then, after a bit, it came, they came back again, and I were like thinking of ways that for it.
 
We’ve got a swing set in the garden that’s got ropes and stuff and I were imagining thinking, when they all go, I’m gonna strap myself up on there. I couldn't have done it anyway because I couldn't’ve even got there you know, I wouldn't have had the strength, but I knew that both feelings were not normal and so then they upped my antidepressants. And at the minute, I would just say, I’m numb. I’m numb. Until I talk about it like this, I don’t think about it.

 

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Charlotte was willing to try off licence drugs which her private specialist had prescribed.

Age at interview 29

Gender Female

It’s interesting that you had a different experience with the more private doctors.
 
I think they’re much more willing to listen and take a chance on medication. Nearly every medication I’ve got is prescribed off licence. All from private doctors.
 
I have, I’ve seen improvements with them like I’m not I’ve not fainted since I’ve been on the tablets. I’ve not, my legs aren’t blue anymore. I can move them again.
 
Yeah. Was your family supportive of you kind of trying those more, I guess, experimental treatments?
 
Yeah. I think because my mum had MS and went on a clinical trial and it was amazing for her, my parents were always, you know, of the opinion try things. You know, try it. I felt like I couldn't get much worse. What did I have to lose? To be honest, I just want to try anything to get better.

 

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Charlotte views her empathy as a gift.

Age at interview 29

Gender Female

There's so much that you can use from it that's positive. So, you get so much more empathy for what people go through. You've experienced something, so you have so much, I’m trying to be so eloquent. How can I say it? I think, yeah, so it's having the empathy which is it's been a massive gift for me to actually be able to know and pick up on later. You can see when other people are upset or when other people are suffering, and I’ve definitely become more aware of that as an adult with what I’ve been through. But also, to have that understanding of how it can feel to be different is actually really good. It's actually really nice as an adult when you're actually having to connect with all different people. You can actually connect with so much more, you know. It's another depth. You have got more depth when you get older from having that experience that you can draw off. You know, just what you're capable of as well for having got through that you've got so much more. Like, you know what you can get through to it.

There's not much more that you can go through in life. That's going to be worse than that, and so once you're past that point, it's like, you know, life's going to be easy once you feel-, and it doesn't matter. Like nobody's perfect, and physical appearance is just so unimportant really because, you know, what's beautiful is actually what's inside as well. And it doesn't have to change anything. It doesn't have to be such a negative for your life. It actually can be once you're through the worst bit, it can actually be such a growth thing for you.

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Charlotte used Facebook to chat to another person who had sustained a burn injury.

Age at interview 29

Gender Female

The person I’ve been talking to quite regularly, never met her, different ages, but yes. You know, I probably will at some stage, and I hope I’ve been helpful to her, and I know it's been helpful to me.

But I suppose there's still that… the connection there is very much around the burns, so they'll probably be… I don't know if… it's probably always going to be in its separate little box because the rest of my life, I try and get… keep it more, not in its place because that's the wrong thing, but it's when you come up., when you still talk about it even though I’m a lot more detached from it still takes emotional, it's emotional toll, you know, and it's still nice to be able to just be normal.

Burn survivors don't often talk to other burn survivors.  and I think the first person I talked about it too was, I don't know, in New Zealand, there was a volcano eruption here, White Island and there was quite a few people that were burnt quite badly on that. And then I ended up sort of getting in touch with one of the people from there, just because I think they put a picture up of their legs. And I’m like that is the same as my legs but seeing it again and I remember getting in touch then and just starting to talk about stuff then was really cathartic.

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Charlotte experienced post-traumatic stress disorder (PTSD) after being burnt.

Age at interview 29

Gender Female

And then I got put through and then got help for the PTSD. And then they explained it to me, you know, this is post-traumatic. This is everything and then they started going through everything, and you realise how significant it was. I honestly didn't realise how significant the burns was at that stage. I mean, I knew it's a big thing, you know. I've been burned, but I still couldn't talk about it at that stage.

So, if I had that conversation with someone and they'd say, “Oh, have you been burned?” I’d try and talk about it and I’d end up, my hands would just be shaking. I couldn't talk about it, and I didn't realise then that this was not, this isn’t good. You know, this is all stuff that needed to be dealt with. So, on the other side of all that, a couple of years later, it's almost like I can just talk about it now, and I can think about it, but it's the images are flat. It's like looking at a book, and we can look at the pictures together. When I used to talk about it before, it was like going back there. And I could still smell things and feel things and it was like a-, you could, you'd go back to actually being in that thing and all that anxiety would come up, and it would be-, whereas now I’ve separated them all.

So, it's not to say I’m not going to get anxious. If, you know, I’m still anxious with fire. You know, I’m always going to be. That's like, you'll be unreasonable to think that, you know, it's not going to affect me. But I can understand it, so I can actually say oh, I’m feeling a bit anxious because of this or because of that. Whereas before it would just be overwhelming feelings of anxiety and I need to be safe and I need everyone around me to be safe, whereas now I’ve got a little bit more understanding, and can reason with myself about what's going on.

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Charlotte described lots of worries – whether she would get better, and the impact of her illness on her family life and her job.

Age at interview 29

Gender Female

Yeah, I worry if they get Covid and be like me. Because there has been talk of these like POTS and the things, they’ve told me have been genetic. I think it’s, will I pass that onto them. Will they react badly? I worry that I’m not gonna get better and it’s gonna be some sort of autoimmune condition and I’m not gonna be here for it. And I worry that I’m gonna stay as I am and never be able to be part of their lives. I worry me husband will want somebody else because you know, I’m poorly and not bringing a lot to his life, but stress. So, yeah, lots of worries. Worries financially. What am I gonna do when my pay stops and I worry I’ll lose my nursing qualification if I can’t get back soon that if for years you’ve not worked, you lose it. I’ve done coming up 18 months. So, lots of worries.

 

Embed Print Transcript

Charlotte compared the NHS and private doctors that she had seen. She felt that private consultants had “been more willing to put their neck on the line and say, ‘I think it’s this’”.

Age at interview 29

Gender Female

And so I saw a lot of doctors in hospital. I saw a rheumatologist because I’d got rashes and blisters on my feet and my legs were poor circulation. And she was the one who diagnosed me with Ehlers-Danlos syndrome. And I saw the cardiologist again in hospital and a neurologist and none of them could really give me any help other than other than the wheelchair. And so, when I came out, I were really hopeless. And we, I would Googling it with my husband about the circulation in my legs. Looking at the Ehlers-Danlos syndrome because that’s what I was told it was. And it were coming up saying, POTS. So I thought, ‘Oh that feels more likely ‘cos it feels, to me it just happened after Covid and the POTS was post Covid.’ So, I paid to see a POTS specialist cardiologist about my legs to say they’re blue. Does he think it’s linked to the POTS. And he said, “Certainly is.” Started me on a tablet. And then reviewed me like every six weeks after that.
 
What was it about trying to access care through the NHS that meant that you chose to go private?
 
The specialist knowledge and the, the doctor, the doctor that I was seeing in the NHS was saying and still say, “We don’t have any evidence. We don’t, we’re not authorised to give you treatment. We know this is all very new. There’s nothing we can do.” Whereas the private doctors have been willing to put their neck on the line and say, I think it’s this and I think it’s that. And I’ve had to accept they might be wrong. They might be guessing. But they’re the only ones who’re trying anything or suggesting anyway that I can get better.
 
Lots of the doctors or every doctor that I’ve seen on the NHS have said to me, “You seem like you've got POTS or Ehlers-Danlos syndrome or Long Covid. There’s nothing we can do to help.” The cardiologist gave me some tablets and said she’d review me in six months and then that meant I were left at home for six months, in the wheelchair, poorly. So, we just, just for speed really to be seen and to get options for treatment.

 

Embed Print Transcript

Charlotte was willing to try off licence drugs which her private specialist had prescribed.

Age at interview 29

Gender Female

It’s interesting that you had a different experience with the more private doctors.
 
I think they’re much more willing to listen and take a chance on medication. Nearly every medication I’ve got is prescribed off licence. All from private doctors.
 
I have, I’ve seen improvements with them like I’m not I’ve not fainted since I’ve been on the tablets. I’ve not, my legs aren’t blue anymore. I can move them again.
 
Yeah. Was your family supportive of you kind of trying those more, I guess, experimental treatments?
 
Yeah. I think because my mum had MS and went on a clinical trial and it was amazing for her, my parents were always, you know, of the opinion try things. You know, try it. I felt like I couldn't get much worse. What did I have to lose? To be honest, I just want to try anything to get better.

 

Embed Print Transcript

Trigger warning; Suicide: Charlotte was taking strong antidepressants and felt “numb at the minute”. She had some suicidal thoughts.

Age at interview 29

Gender Female

Do you feel kind of isolated from your life?
 
Yeah, massively. I’m on some strong antidepressants. I were, in the summer holidays I were suicidal. I were really and I didn't, I’d never experienced it. I’d worked with people who’ve suffered with their mental health, as a nurse. And thoughts were coming into my head, telling me, there’s no point in me being here anymore. And I thought, I need to tell somebody about this. And I didn't have any control of them. So, I started on antidepressant which helped and then, after a bit, it came, they came back again, and I were like thinking of ways that for it.
 
We’ve got a swing set in the garden that’s got ropes and stuff and I were imagining thinking, when they all go, I’m gonna strap myself up on there. I couldn't have done it anyway because I couldn't’ve even got there you know, I wouldn't have had the strength, but I knew that both feelings were not normal and so then they upped my antidepressants. And at the minute, I would just say, I’m numb. I’m numb. Until I talk about it like this, I don’t think about it.

 

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