Lindsey
Lindsey, her wife and child caught Covid while on a cruise ship in Australia in March 2020. On returning home to the UK, Lindsey experienced fatigue and a burning sensation at the back of her nose for two or three days and lost her taste and sense of smell. She recovered quickly. Lindsey’s wife was very ill and their child had a persistent cough and breathing difficulties. They continue to experience symptoms that affect them 21 months later. Lindsey feels guilty that she is “the one that’s okay” and would like to see a support network for families of people with Long Covid because it’s been “overwhelming,” “draining,” and “isolating.” Lindsey was interviewed in April 2022.
Lindsey was a teacher and lives with her wife and four-year-old son, who was two years old when all three of them had Covid at the start of the pandemic in March 2020. Ethnic background: White British.
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In September 2019, Lindsey, her wife and young son packed up and left England to travel the world permanently. They left their teaching jobs, sold their house and everything they owned, and started on their travels. In March 2020, when Lindsey and her family were on a cruise in Australia, the pandemic started and they flew home immediately. On returning to the UK, they isolated as the news of Covid was starting to appear. All three of them developed Covid, but Lindsey had much milder symptoms than her wife and young son who were very ill.
Three months after he was infected with Covid, Vinnie started having non-epileptic episodes. He was prescribed topiramate for his non-epileptic seizures but he had an adverse reaction after one dose so they stopped it. Vinnie also has a persistent cough. In July, he needed to spend a week in hospital with a lower respiratory tract infection. While in hospital, a consultant referred to him as having post-Covid syndrome for the first time. Between July and October, Vinnie was the best he had been health-wise, but he was still struggling with fatigue. Since October, Vinnie’s persistent cough has returned.
Vinnie has frequent hospital appointments with various specialists which Lindsey takes him to. When they first returned home to England, Lindsey started working in a supermarket, but her employer was unsympathetic when she needed to take time off to look after her wife or son or to take them to medical appointments. She has since started a new job working from home which gives her much more flexibility.
They are waiting for a referral to the Long Covid clinic for children. Currently Vinnie sees lots of different specialists at different clinics. Lindsey would like to see a more encompassing overview of symptoms. The various appointments means that “it’s just constant.” Having to repeat Vinnie’s history, which is complex and long, at each one is “frustrating,” “overwhelming,” and “draining” – especially as during these appointments Lindsey is trying to manage an active pre-schooler as well as support her wife with her brain fog and fatigue. Two years on, she still feels that they are “on a rollercoaster of what we are trying to manage and work through with Michelle’s illness and Vinnie’s illness.”
Lindsey feels there is no support to help the parents or partners of people who have Long Covid. They are just “dealing with it, you know, in the background.” She says she feels guilty that, “I’m the one that’s okay” and doesn’t feel she can say how exhausted she is when her wife is still unable to walk properly, has breathing problems, muscle and joint pain, fatigue, and brain fog. The last two years have been about “surviving” and they live day by day and don’t often plan because things can change so quickly. They are living with the uncertainty of whether Michelle and Vinnie will get better long-term or this is how their lives will be. They are “just trying to muddle through and make it work.” Lindsey still holds hope that they will improve.
Lindsey would like to see a support network created for partners of people with Long Covid because it is “isolating” being a partner of someone with Long Covid. Her advice to other partners of people with Long Covid is to not give up and “the person that you’re caring for or looking after they might not be the same person that they were, but they’re still the person that you love.”
Lindsey and her partner are unable to receive family support because of where they live.
Lindsey and her partner are unable to receive family support because of where they live.
And so for me it’s just, you know, I’ve just been trying to look after them go to work, keep the house, you know, do basically everything in between because of the impact that it’s had on them and for a long time we had very little, we had no support in terms of what we were trying to manage and because of our living situation of where we live we’ve got no family support either.
Lindsey worries her wife forgets to look after herself when she focuses on caring for sick mother.
Lindsey worries her wife forgets to look after herself when she focuses on caring for sick mother.
Like we’re here in the [place] because Michelle needed to be near her mum because her mum suffers from Rheumatoid Arthritis and she’s then also caring for her mum, so then I, we have issues where I struggle with the balance in terms of like okay but you need to look after yourself, like you’re looking after your mum I know you’re looking after your mum but there are times when you need to look after yourself and you need to put yourself first and I don’t know whether I personally feel like sometimes I’m picking up all of the pieces when actually if you dropped that little bit over there just for a minute you might feel a bit better, but then she says that sometimes going out with her mum makes her feel normal and I don’t, I don’t want her to feel bad about it but then that causes arguments it causes upset because, you know, she’s doing what she needs to do for her mum and I get that, but then I just think she needs to be looking after herself.
But because of that I have no family here, I don't have, all my family are in Essex and all my friends are in Essex I don’t, now I’m working from home I obviously don’t go out to see people like sometimes working at the supermarket it was at least I was around other people, made me feel a bit human but now I, there is none of that, but I need to be here for them as well so. It just feels like a catch-22 all the time but there is yeah there is no, there’s no support there’s no, no-one to talk to, there’s no-one to air your concerns, there’s no-one to share your experience, there’s no-one to go oh yeah we’re having the same problems, you know, or just to make you feel a little bit more, you’re not going insane. Like Michelle sees a psychotherapist now she said it’s really helped her and stuff like, she says oh you need someone to talk to, it’s like who.
Lindsey got a supermarket job to help family finances. Her wife who had Long Covid was left alone caring for their toddler who also had Long Covid.
Lindsey got a supermarket job to help family finances. Her wife who had Long Covid was left alone caring for their toddler who also had Long Covid.
I’ve had to go, I had to get a job so we needed some money just to sort of help tie us over and tick things over and things like that so I had to go out to work, which is fine but then that put stress on the family unit because then I have to leave Michelle with Vinnie to look after Vinnie so although Vinnie’s got Long Covid, Vinnie is still a toddler, he’s now four and that puts pressure on her in terms of her fatigue and then how that makes her feel and then, you know, everything has a knock on effect.
Yeah so originally when we got back I just got a job in a supermarket I just, anything I didn’t care what it was just a bit of money, I mean we weren’t desperate for money but just to, you know, help with things to tie over because obviously when you’re, we were living in a caravan and tent so we could live quite cheaply and we were living at my dad’s but that wasn’t ideal so we needed to rent somewhere because Vinnie was into everything and as much as we could stay, so I just got a job, just get some money.
Lindsey’s supermarket employers docked her pay for absence while her son was hospitalised. She was happy to find a job working from home with better conditions.
Lindsey’s supermarket employers docked her pay for absence while her son was hospitalised. She was happy to find a job working from home with better conditions.
So I got a job in a supermarket initially and when, they were quite good in regards to I had to have conversations with them, like Vinnie’s got an appointment I’ve gotta go and come back they were fine or if I had to change a day or stuff like that but in the end, so Vinnie went into hospital didn’t he for a week and he got admitted for a week and it meant that I had two days off work and I told work the situation said look Vinnie’s been admitted to hospital I’m not going to be able to come into work and my manager messaged me and said no problem I’ll put it down as compassionate leave, I said really brilliant, thanks for that really appreciate it.
Payslip rolled round, hadn’t been paid for it I absolutely lost it basically, I just went into work and said like “is this a joke”, you know what I mean? I’ve been here every day throughout the pandemic I’ve never had a day off, you know I’m hard working I, you know, I give everything I, even, you know, even when I, you know, people were having days off because of isolation and all those, I said you know, that I’ve never had a day off for isolation I said, you know, I’ve kept positive I’ve, even when I hurt my, hurt myself because it was quite a physical, demanding job I was doing, I was lifting stuff off top shelves, so when I physically hurt myself I still didn’t have a day off, still come in because I thought there’s something I can do and I said “you’re not going to pay me because my son was in hospital?” And he said “oh I can’t”, I said “yes, you can I said you can choose to pay me, I’ve all the policies” he said “oh no” and I think he was being led by the Personnel manager when I kept throwing the policies back at him he didn’t, he didn’t budge even though I know he could have done and in the end I just, I just gave them my notice, I just said I’ve got my envelope here I’m leaving I’m not, I don’t want to stay working for a company like this, do you know what I mean, I said it’s shameful.
And at that point he then turned and said oh I can do this, I can do this and I was like no it’s too late you, you know, my son is my priority I’m not prepared to sacrifice that and if you’re not going to look after me as an employee in that regard then I’m just not interested like you’ve made me feel worthless I’m going. So with that I walked out of that in August last year, it might have been a bit earlier and I didn’t, I applied for lots of things working from home to try and make it easier but obviously everybody was working from home and everybody wanted a working from home job and it was really difficult but then I managed to get something with a company I used to work with before I was a teacher, so like 20 years ago and so now I work at home which is fantastic because it just gives me the flexibility to help out with getting Vinnie ready or helping Michelle.
But they also give me three days off a year for appointments, so I can book like a half day, so when we went to the [Hospital] I can book a half day and they honour that and, you know, they said that, you know, you get three days a year if you need to do this for parental consideration, I was just like fantastic, like I feel relieved that I haven’t got to stress so much about asking for time off all the time that it’s actually allocated and it’s sitting there if I need it.
Lindsey says the pressure of caring for a child and partner with Long Covid is “just constant” and “the support network for me just doesn’t exist.”
Lindsey says the pressure of caring for a child and partner with Long Covid is “just constant” and “the support network for me just doesn’t exist.”
So, it’s been really hard it’s been quite challenging at times and it’s really tested our relationship to the absolute limit and it continues to do that. We, I still feel like we are on a rollercoaster of, of what we’re trying to manage and work through with, with Michelle’s illness and Vinnie’s illness, so if it’s not Michelle we’re dealing with in terms of how she’s feeling and the fact that she can’t walk or she’s extremely fatigued, it’s dealing with Vinnie and his endless appointments for neurology and asthma clinics and things like that so it, it’s just constant. And although they’re now getting support which in terms of diagnosis or treatment, as a person on the outside of that who is trying to help manage all of that there’s really nothing for me and I’ve said this to Michelle several times and said like for someone as a, as a partner of someone who has got Long Covid or as a parent of a child who’s got Long Covid there’s nothing, there’s nothing for them to help them cope with what they’re going through like and I feel, I often feel guilty because, you know, sometimes I’m tired, like I’m really exhausted but I don’t feel like I can say that or complain about that based on what they’re going through.
So yeah it has been really challenging like, you know, she, Michelle’s obviously in lots of Facebook groups and Long Covid groups and things like that and she often says oh, you know, this, this person just said that their partner’s walked out on them after a year of dealing with this and stuff like that and, you know, that’s the reality of this that it is that hard for that person and I, I feel that sometimes, I’ll, I would never do that I still, you know, that’s not part of my remit I’m here to support my family and my wife and get through this but there are times where it is horrific, it really is horrific. And the support network for, for me is, it just doesn’t exist, there’s just no acknowledgment of that at all really and that’s quite challenging at times.
Lindsey, whose partner and child both have Long Covid, wonders if a support group for family members is needed.
Lindsey, whose partner and child both have Long Covid, wonders if a support group for family members is needed.
For someone as a partner of someone who has got Long Covid, or as a parent of a child who’s got Long Covid, there’s nothing, there’s nothing for them to help them cope with what they’re going through like and I feel, I often feel guilty because, you know, sometimes I’m tired, like I’m really exhausted but I don’t feel like I can say that or complain about that based on what they’re going through. So yeah it has been really challenging like, you know, she, Michelle’s obviously in lots of Facebook groups and Long Covid groups and things like that and she often says ‘Oh,’ you know, ‘This person just said that their partner’s walked out on them after a year of dealing with this’ and stuff like that and, you know, that’s the reality of this, that it is that hard for that person and I feel that sometimes. I would never do that, I still, you know, that’s not part of my remit. I’m here to support my family and my wife and get through this but there are times where it is horrific, it really is horrific. And the support network for me is, it just doesn’t exist, there’s just no acknowledgment of that at all really and that’s quite challenging at times.
And that’s where I think that we fall way down the list, I think we fall further down the list because, because we’re not suffering with medical problems because I’m not badgering my doctor every five minutes because I can’t walk or I’ve got a migraine or I’ve got a cough I can’t shift, I’m not, I’m not a priority. I’m not a problem, I’m just dealing with it. I’m just, you know, in the background in that regard. But yeah, the other people, the Covid is, the Long Covid, you know, often Michelle will go look this person, another person has committed suicide because of Long Covid, like a 27-year-old person that should, and I just think people are suffering and not a lot is happening and, you know, that’s awful.
I can’t think of anything I have, one thing I have said to Michelle several times, so she’s part of all of these Long Covid Facebook groups and I said to her, I said I wonder if there’s a group outside of that for people like me. So, people, and there isn’t, I keep saying oh maybe I should, maybe I should just start one.
Lindsey talks about the nightmares her son suffered after being prescribed topiramate, a prescription drug.
Lindsey talks about the nightmares her son suffered after being prescribed topiramate, a prescription drug.
She prescribed him a drug topiramate quite recently and it’s another thing that has come from Covid, so Michelle has, has allergic reactions now that she didn’t have before to things and we’re also not sure if Vinnie is having allergic reactions. We tried to push that with the paediatrician to get a test but he was prescribed topiramate which was actually a drug that Michelle had been prescribed as well which was to do with your brain and things like that but Vinnie had such an adverse reaction to it with one dose, he literally slept through the night and was calling, like literally living his day through the night out loud, like vividly in his dream shouting, calling, talking and Vinnie doesn’t sleep anyway at the best of times so I was like I’m not giving that, I’m not giving that again and I just, I said no way, this is evidently not agreeing with him.
And when we looked at the…because the doctor didn’t go through side effects with us at all, when we looked through the side effects it did state that 0.03% of people have this reaction where they vividly live their dreams and can sleepwalk and sleep talk and things like that and I was just like, no I’m not, I’m not prepared to put him through that.
Lindsey believes that her son’s immune system is low because of Long Covid. She says the thought of him catching it again is ‘scary.’
Lindsey believes that her son’s immune system is low because of Long Covid. She says the thought of him catching it again is ‘scary.’
So yeah there’s just that a lot of people dipping in and out of his needs and what’s going on with him and within that we have to keep the school informed And, I mean the last week before Easter we took him out of school because they had Covid in school and the teacher went down with Covid and we just said “No, you know, you’ve got to keep us informed of what’s going on.” We understand that we can’t keep him protected from everything but because his immune system is so low the fear of him catching it again is scary.
Lindsey wondered whether her son and partner would get better from Long Covid. She asked herself “is this our lives” and whether any damage was permanent.
Lindsey wondered whether her son and partner would get better from Long Covid. She asked herself “is this our lives” and whether any damage was permanent.
Can they, can they? Because it’s so new, because it’s so…are you going to get better? Is this going to get better? Is Vinnie going to get better or is this our lives? Like because we don’t really know, I suppose we’re just trying to muddle through and make it work. In the last sort of three months Michelle has started to say things like ‘Oh, you know, this is my life now and this is, I’ve got to deal with this, and this is how I’ve got to live the rest of my life.’ I’m not there yet. I’m not ready to accept that yet, I still think there is hope that people could get better. Do you know what I mean? It’s a virus that has damaged this, you know, people recover from viruses, viruses are not permanent things, it’s not like a disease or something like that, it’s a virus. But because they don’t know whether the damage is permanent, I suppose, and because we don’t have any answers, I don’t know it’s like a loop, we’re on a loop.
Lindsey thought medical professionals had been ‘a bit blinkered’ about Long Covid and needed to be more open and join patients in raising awareness about this new illness.
Lindsey thought medical professionals had been ‘a bit blinkered’ about Long Covid and needed to be more open and join patients in raising awareness about this new illness.
So, I think in terms of questions for the future that’s something that needs to be addressed, people need to be more aware of what this looks like and how it can be similar to other conditions and symptoms but not be those because people could be getting diagnosed incorrectly and suffering in silence I suppose. I think that’s quite important and I don’t know how that would ever happen, I don’t know what conversations happen about Long Covid with clinical people but there still seems to be quite a restriction on what people will tell you and what people are dealing with, like it’s not on the news, occasionally it gets flashed up about, you know, the Long Covid kids have handed a thing into Number 10 but where’s all they medical people, where are the medical people saying that this is what happens and this is what people are suffering and this is a problem.