Family experiences of Long Covid

And I said to him, I said, “I’m supposed to be going back to work in September.” Then, you know, again, the anxiety is building up where how are we going to manage with that because if we don’t have the nursery places, if we don’t, we can’t have him at home day and night, you know, while I’m at work and then I’m too exhausted to do anything else or I’m in too much pain. So, he then has to do the night shift at home as well, it’s like, working fifteen hours a week, I’m going to be, that’s not enough to keep a roof over our head and we’ve already been told by our landlord that we’ve got to look elsewhere. And it was hard enough before the pandemic to find a place that would allow you to rent with children.

And that’s affordable, to be honest, because [city] is not the cheapest but he’s already said, “You guys need to look for somewhere.” And it’s, it hasn’t been easy. It hasn’t been easy to try and find somewhere and I thought, I can’t give up, because even though it’s fifteen hours a week, I can’t give that up because that’s that extra bit of income coming home but we can’t have him off work all the time because he he’ll only earn if he’s working.

So we, we’re actually about to go to Germany for some treatment which is not available in the UK called apheresis so I’m hoping that he will improve with that to the point where actually I can go back to my normal work pattern and hopefully he will be able to do a bit more and even go to sixth form college, which would be really nice, but we, we don’t know what the outcome of that will be. I think we’ll just need to wait and see.

Yes, has that like privately funded as well?

Yes, so I’ll have to pay for that and it’s not cheap. So, you know, flights, accommodation and then each apheresis treatment is £1,100. I don’t know how many he’ll need. So, you know, my options are to, I’ve had to save money for him for university, so I’m using that right now. I may need to re-mortgage the house in order to pay for it. So, I’ll just see.

Well, life now is very I wasn’t stressed before, but it’s very low stress now. I’m lucky enough that I’m, I can financially depend upon my parents. And I haven't been under financial pressures. I know a lot of people with Long Covid have. I’m really grateful and lucky for that. I don’t really have stress in terms of I don’t have any responsibility really. My only responsibility is to myself. So, I recognise the privilege of that. I know a lot of people who have children to look after and kind of marriages that are falling apart as a result of Long Covid. So, in some ways, the fact that it’s happened at this stage of life could be, you know, could be considered a bit lucky. Because I’m not tied down to anything. But the loss of my course and the vision of what life kind of should be like for me; that, that’s the most difficult thing.

I’m just thinking if you’re now working as much as you would like to, how’re you getting on financially?

Yeah, sometimes, because my husband, he’s working eight hours, but he’s a contract one. So, obviously we are surviving on him now.

Has that been difficult?

Very difficult.

What sorts of things, because I know food prices are going up. Petrol prices are going up.

There are food prices going up. Electric, gas, going up. Everything going up. You know, the children, they need everything. So, shopping wise, everything is up. We are struggling. Sometimes hands to mouth.

How’re feeling about that?

It’s like, you know, it’s not easy. Sometimes you get the stress, anxiety and it’s like how we going to manage everything. You don’t want to give any tension to the children.

Right. You try not to let them know that, yeah.

Yeah, yeah, yeah.

So, that’s just you and your husband trying to deal with it.

Yeah, yeah. We just working out as a, as a team.

Obviously to be honest with you on... I don't know what to say, honestly, it’s hard because before, my husband used to handle all the bills, I wouldn't ask for [inaudible] I want my pocket money right [inaudible] my pocket money, but that’s the life you worry about, bills, this and that, tax, whatever, you know it... he used to do everything and then suddenly had this responsibility all the time and then honestly, I think anyone would find it hard, not just me you have to recover and do this, get on with… oh my God… and we should think about this thing, now we have to think... I can remember we used to shop from there, and now we shop from here, here yeah, now a problem, I'm going to have to save some money from here now, I'm going to have use this less now, all right, I'm turning all the lights off now, I don't want no lights on, yeah.

I first of all thought ‘I probably need to apply for some sort of benefit to support us’, and I knew that physically I... I wasn’t in great shape, so I thought the first one... because I’d helped... supported my mum, apply for Personal Independence Payment, a PIP payment, I thought that I would apply for a PIP payment, and so I thought ‘I’ll do that one first’, because I’d had experience of it with my mum, and when I’d done it with her, I’d obviously had... I was in the right frame of mind and I was pretty well and healthy, I’d got all of the supporting evidence and documents and it had been pretty straightforward, I’d felt [laughs]. So, I thought I’d apply for it for myself, and I thought that it would be easy: oh, how wrong was I.

I tried to phone up first of all. Now, trying to do that when you have got a sick two-and-a-half-year-old, I think he was two and a half at the time, around, and I was on hold to try and phone up first of all to get the form was a challenge in itself, so I was put on hold and at first I thought I’d be on hold for 10 minutes, so I’d hold for 10 minutes and when, like, Vinnie would be trying to demand something from me and he would be sick, I’d be sick, I’d wait for 10 minutes and then I’d pink... think, ‘oh they’re busy, they’re not going to answer the phone’, so I’d put the phone down when they didn’t answer it after 10 minutes. So I think that went on for quite a while and it put me off to start off with, so I didn’t apply initially for a while, and then I realised that I couldn't apply online for this payment so I... so I tried to do it online, and I tried to do it at night when he’d go to sleep, but it wasn’t going to be that straightforward; I had to phone up to get this form that I had to fill out.

Back to the PIP application: on hold for an hour, eventually got through and they sent me a 44-page document, yeah. That sat in the cupboard for about, I don’t know, eight weeks, because every time I opened it, I then couldn't actually answer the questions when it had been really easy to fill out my mum’s form, I just kept looking at it and thinking ‘how the hell am I ever meant to answer that?’ So I think I had a deadline to answer it and I... as the days ticked by, I think the deadline probably was coming up and they text me, and I’d put it to one side and I just couldn't deal with it, then they kept texting and saying, “Your deadline’s approaching and you haven't filled... return this form,” so eventually I, kind of like, filled it out to the best of my ability at that point and then returned it, 44 pages. And then they wrote back and said, “We’re going to arrange an interview with somebody who will phone you.” So, they arranged an interview, and I think this is about... it... it had taken me about... the... we got back in March, I think I had the interview around about December, so it had taken me that long to deal with it.

He had also got his own challenges, so, you know, there was a possibility that maybe, just maybe, he was entitled to some sort of support, and I just thought ‘well, I’m not going to fall down the same traps that I had fell down’, so I thought ‘I’m going apply for him’, so I decided to apply for the child’s version of what I was getting, Disability Living Allowance, and did my background homework and didn’t focus too heavily on the Long Covid stuff because obviously when the world outside is saying Long Covid in children doesn't exist, it’s very, very difficult to try to convince other people that it really does exist, you know, it was hard enough to convince the adults of the world that it exists in adults, so to try and convince the adults that it didn’t exist in children is even harder.

But because Vinnie has got those developmental delays as well going on, which we don’t even know yet if they’ve been caused by Covid or not, you know, and they’re... you know, there is a strong, strong possibility that Covid has played a large part in the developmental delay that Vinnie’s got, you know, he’s got those so I listed those as part of his challenges, but we applied for that and that was awarded.

The disability one is a nightmare. But I had help from a volunteer from a charity who was with me on the phone call were they said you can do it on the phone now and not in real life because of Covid. And when they turned me down ‘cos they’d made so many mistakes, she wrote a very strongly worded letter to them saying exactly what they’d, they’d made the mistakes. Like one of the lines said, ‘I think she could walk 200 metres.’ I don’t know where she got that from, but there’s no way I could walk 200 metres. So, they gave it to me after, after she sent the letters in [laughs].

How did you come across the woman from the charity who was able to help out?

I think I was, I was watching a lecture on Long Covid from—it was an ME charity, but they were talking about Long Covid. I think I was watching a lecture and then got involved with them that way. Found out they’d got a department at this charity that helps people apply.

Yeah, that’s lucky

That was really lucky, yeah. Probably wouldn't’ve got it without that, definitely.

But again, as I go back to it, there isn’t any... ‘nough research out there, you know it’s only we... what... we’re in the third year, right, of Covid, so you know I think... I can’t remember in America or somewhere, the Long Covid is now recognised as a disability, but in NHS they don’t recognise that and I think that, again, it’s down to the research, that maybe it’s going to take many years before it is recognised as a disability, and again, because it affects different people differently with different you know parts of the body, you know how do you differentiate you know the condition either as a normal condition like a normal, let’s say, just a muscular pain rather than Long Covid? So maybe it’s hard for... for them to do that yet, but I think going forward, the NHS will have to recognise that, because if they don’t recognise it, then I kint... I think it can affect people differently. You know, for example, if you take sick leave, what are you going to write? You know or... or if you're trying to claim disability benefits... you know because if you just say muscle pain they might not take seriously, if you say Long Covid they might do, I... you know... you know it’s just my opinion on that.

But I think people out there, you know whether it’s an employer, you know a medical professional, or anybody, they need to take this seriously that the Long Covid does exist and you know you’re just not making it up. You know why would you make it up? You could just say, ‘oh, I just have muscle pain.’ OK, you know but then if you have one thing and then the thing is when you have Covid, just after a Covid... like, you know you contract the Covid, these things started so it’s just not coincidence everything happens right after, or it’s because of your age you know, and that’s what I believe, it’s happened and then it’s just happened after, you know it hasn’t happened after a year or two years. You know so definitely Long Covid, but for me it’s Long Covid you know?

And then also, I suppose the amount of time that we spend on it, because I was having to take her to the hospital once a week. Thankfully, I work freelance, so I was able to do that but that still had a knock-on effect because I either then had to work in the evenings or I just miss out on jobs, which means it has a financial impact. So yeah, it's been adapting to it, but just kind of I think post-2020, everything's just been like, ah we don't know what's gonna happen or we’d kind of go with the flow so at least we were kind of in that frame of mind anyway. If it had happened pre-2020, I think it would have been even more of a shock to adapt to.

He’s very much got that I will get better and he’s paid for, he’s wanted to pay for everything he could possibly pay for. So, I’ve seen private doctors and private physio and a private occupational therapist to try and help me around the house and find ways and his attitude is, you can’t stay like this. You’ve got to get better. And I don’t think he accepts that this might be a long, long time.

It’s been a big stress. I’m really fortunate we’d got savings and so we’ve used a lot of savings and I only went to half pay from August. So, I was on full pay, but just the stress of the upcoming, you know, knowing I’m gonna lose my wage has been a worry. And we’ve, we’ve paid a lot out in private healthcare. We’ve paid for private physios as well which were £80 an hour and I had, I were having ‘em several times a week. I paid for some antibiotics which were £400 just an example of the cost. Tests were like two, two and half thousand pounds. We spent a fortune on tests. And financially now I’m onto statutory sick pay and half pay for my work and then after Christmas and my pay will stop. I’m applying for like the government disability like don’t know what it is, benefit.

Yeah so, it’s just full of change really, we’ve gone from, it’s changed in a lot of ways so financially like obviously before we was going out a lot more, we’d go out for tea as a family and enjoy company that way now we use spare money to pay for like reflexology or some complimentary therapy for Freya, a lot more financial visits to hospital even our local hospitals like over 20 miles away. The Long Covid clinic we went to was like over 40 miles away so just you, you know, financially it’s different.