Long Covid in Adults

And the other major problem I've had is with the benefits. You know, the benefits side of things. So obviously I'm now unemployed. I am in receipt of my service pension which negates a lot of the basic benefit. You know, because its income related, but obviously you get your National Insurance paid. So, I went to the Citizens Advice Bureau to get—bear in mind, you know, I don’t know anything about this. You know, this is…I’ve worked all my life, you know, forty-two years I’ve worked this…you know, this…well not now, but, you know, forty-two years, you know, I always say that, you know, when I left school…you know, we left school on the Thursday and I started at the local cement works on the Monday, as you did.
 
And so, the benefit system is just…I don’t, you know, I don’t understand it. So anyway…so I went to the Citizens Advice Bureau who helped me complete the forms. Sent them off obviously to DWP. So DWP obviously actioned that and sent some electronic message to the Inland Revenue. The Inland Revenue assessed that I was going to get paid nearly six thousand pound in benefit and taxed my pension. So, I lost a hundred and fourteen pounds that month without receiving any benefit. So, it was crazy. So obviously, you know, in this brain fog, kind of, tired, so I'm on… and this is right in the middle of Covid as you might imagine, so you’re waiting fifty minutes on the phone to get an answer. You know, more than fifty minutes. And as I say, at the time when I needed it most, I lost a hundred and fourteen pounds.
 
You know, it’s bizarre, isn't it. You know, off my service pension. You know, that obviously gives me quite a nice standard…you know, if you imagine when I'm working at [pharmacy], you know, and I'm doing a bit of [business type] and I’ve got my service pension, I’ve got a really nice wee life. You know, I'm buying a new truck, you know, I'm going to Lanzarote, you know, I'm having weekends away, you know, going away to the rugby, all that kind of stuff. And then, you know, to lose that and then to lose the hundred and fourteen pound that tax on a benefit that I wasn’t getting was crazy. So eventually I phoned them up, you know, so the passageway through DWP was torturous. Absolutely torturous. Not so bad with the Revenue because…
 
So, I know what to say to them. But…so basically they say that…obviously the…the Inland Revenue said, right, we’ve worked it out, we’ll repay you your money back. But then I fill in another form for the additional bit of the benefits. So again, I do that through the Citizens Advice Bureau. So that then goes through. So, the same thing happens again the next month. And but because it’s a month down the line, it’s not a hundred and fourteen pounds. They take a hundred and eight pounds off me. So, you know, it was just…and that went on for four months. So, I ended up, you know, losing nearly five hundred and fifty pounds on the tax that they were saying that I was…when I…you know, and that’s a lot of money. That’s a lot of money when I’ve got reduced income and that sort of stuff.
 
And then eventually, I get the additional benefit, you know, extra…canna mind what it is, but I'm a special case, so I basically get thirty pounds a week. So, I’ve lost five hundred and fifty pounds and I'm getting thirty, nearly thirty-one pounds a week, which is taxed, you know, off my pension, but I’ve not made…I mean, I have had the five hundred and fifty pound back, if you like. You know, the Revenue have paid that back. But if you look at the loss that that caused when I when I needed it, to get thirty pound a week. You know, it’s… I’ve not had five hundred and fifty pounds in benefits yet. You know, it’s crazy [laughs]. Absolutely…absolutely crazy. Absolutely crazy.
 

But for me it was the January to the mid-February was the worst thing because it was scary and it was debilitating, and it really affected my day-to-day functioning. And it really frightened me as to what my future was going to look like, and would I ever get better? Would I ever be able to be the mum I wanted to be? Would I, you know, have to leave my job and just…I don’t know, like just get a little job in the supermarket or something that I could handle and what did that mean for us as a family financially? There was stuff going on with my husband’s business at the time as well because of the past year, he’d ended up shutting his business. Now actually in hindsight it’s the best thing that could have ever happened and he’s far less stressed and earning the same amount of money that he used to. But in that period at the beginning of the year when he was shutting his business and had very little income, the thought of me then not being able to perform and having to leave my job, that was even scarier because what does that look like? We’ve just got, you know, our house and, you know, nothing huge but we couldn’t have kept our house. I mean, it’s just…it’s a four-bed house, you know, which is lovely, but we would have lost that. So that was the worst period for me, and it really did scare me. So, I think there was I guess a mental impact of that period just as much as the symptoms because of my fear going forwards.

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.

I really it would be nice to…in fact the guy who’s coming on Wednesday, my physio guy, he’s supposed, he said the last time we physically spoke to each face-to-face, he said he would let me have a list of all the government departments that he felt we should be in a position to apply to. But he hasn’t sent that yet. But that would be very helpful if somebody could actually just…you need to be able…you can contact these people, blah, blah, blah, blah, telephone number, email and so on. But nobody does. So, it’s very difficult to know who you can apply to. I mean, the one thing you asked, this PIP thing, not heard of it. Well, I had heard of it but nobody’s mentioned it lately. I didn’t know that we could apply for it.

I get disability allowance as well which tops it up a bit. So—that’s good. 
 
Did you have any problems getting those kinds of allowances or benefits?
 
The disability one is a nightmare. But I had help from a volunteer from a charity who was with me on the phone call where 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 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 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.

So, but I was unemployed for yeah, just over a year and during that time I applied for Universal Credit and also Personal Independence Payment as well which is a big whiplash. That is a massive culture shock is going from, you know, like being in the professional as an engineer and then like, and everything about that and like I’m very conscious of, I’ve worked with a lot of people who are on benefits and on that side of life. And, you know like, I was always very aware of well like if ever I was in that position I would you know, take that money. I would ask for that money because it’s owed to me, like it for my support for the situation. But it’s still very strange to find yourself in that position and especially while sick. Especially while unwell.
 
With Universal Credit and that I signed up for Universal Credit side of things was almost fine. It was almost, you know, like it’s, it’s built for people who are unemployed. It’s very straightforward. You fill out a form online and you just get it and it’s fine. But everything that’s tacked on to help people with disabilities or with long-term illnesses is so arduous and I’m still in the process of fighting my PIP claim and I’m now taking it to tribunal because I was one point short previously of getting the award and the entire process of PIP has been so dehumanising and horrible to the point where I feel like over and over again I have to prove and articulate and specify specifically how my illness, my disability makes my life worse, and makes it difficult and, you know, open my entire life and existence wide open for them to say no. To specifically denigrate and to give frankly insulting means of rebuttal of me, you know, saying x, y, and z. Explaining in great depth and detail and then they just say, no or, you know. It is one of the worst things I’ve like, I say one of the worst things I’ve had to do, in the, in the sense of it’s just grinding. It’s dehumanising. It’s a sense of not trying to find out your needs and your disability, but as if it’s like a lie detector test from someone who you know, is just reading a check list. It is very, very difficult to like and it like I think that and, you know, that’s something which like everything really affects people with Long Covid because the condition is so intermittent. You know, you trying to prove to people that your fatigue affects you enough of the time that it would stop you from being able to do x, y, and z. And or that your brain fog or your cognition is so bad that like or that your mental health is so bad that it stops you from doing blah, blah, blah. Like the overall the fact it feels so box ticky and the fact that you can like a very nuanced and very specific account of your own life, but it doesn't fit their criteria.

I done all the assessment and because there’s, “Oh we don’t focus on your illness, we focus on how it affects you.” “And you are.” When she asked me, she was like, “Oh, so are you still having Long Covid symptoms?” And I said, “It’s like waves, you know.” She said, “Tell me about a good day compared to a bad day.” And they based the entire decision on my good day. I mean I was set up with some of the questions where she was like, you know, “Or how else have you been having your appointments?” And I was like, you know, Teams, Zoom whatever and so she was like, “Oh so do you have Wi-Fi, are you able to use Zoom?” I was like, “Yeah.” And then the notes she put like well, you know, she complains about brain fog, she seems to be able to have consultations and she’s clearly telling them something and for, when you read that and you think, I just went through answering your questions, honestly, it’s difficult because I have had to do this a million times for a million different people. I live this day in and day out, to read that basically she’s kind of written there, yeah, well, you know, she uses the internet. She’s able to do Zoom meetings so she’s not that doolally, kind of thing.
 
It’s just, it must be demoralising, you put so much effort in.
 
And she put in there, she put, well, you seem to have been, you seem to be able to answer all my questions.