Systemic Vasculitis

And then the actual amount of money that you get is sort of not a lot. It’s really not a lot to live on, it’s sort of, I mean housing benefit, for example, I don’t have to access housing benefit now because I live with my mother of course, but when I did access housing benefit it’s capped at a certain level which they say they do the capped rates on what the local rent prices are, which is not in my opinion, is not the case. I think the amount that it was capped while I was short £80 every month, or something like that, from the actual rent, it’s like well how am I supposed to make up that extra £80 when my only other income is then disability benefits, well I’m then eating into the disability benefits that I’m getting, so then how do I pay for food? How do I pay for bills? How do I pay for all these things?

If you had to pay for your rent and your food and your bills, out of just the money that they gave you on housing benefit and disability benefits, you would be left with basically nothing at all every week or every month, to spend on yourself. Which just because you can’t work shouldn’t mean that every month you can’t buy yourself, I don’t know, say a new book to read, just something really simple, something that’s not even that expensive, you know, but when, when you’re running low on money in that way, and you physically cannot work, there’s nothing else you can do to earn money and the only income that you get is from the government, it’s very, very difficult to sort of sit there and not be able to buy anything for yourself, other than very basic food, we’re talking, you know, I had a very, very tight budget on food, I spent, when I was living with my partner, £25 a week on food for two people.

Which is a really, it’s a tight budget, it’s, you know, it’s about £12 each a week on food which is not a lot of money, so you know, and my treat when I was low on money would be buying myself something nice to eat, which is for a lot of people, that’s not really a treat. That’s not really buying something for yourself, you know buying a nice tub of ice cream, you know, a fancy tub of ice cream, that’s all, when that’s all you can afford and for what, because you became unwell. It’s, yeah, it’s been very difficult the financial side of things.

What it resulted in was I couldn’t return to my housing job, the one that was paying the mortgage. I did do part-time singing teaching but the one that paid the mortgage, I was there on a temporary basis and the income then dried up very, very quickly and then I was on no, no salary at all.

So, I was really impacted financially, couldn’t get any support from the state, had to kind of fight that through courts etcetera to try and get some fairness and some help with the income. And as a result, I had to lose my house. So, I lost my job. I lost my house [laughs]. And I had to return to live with my mum.

And of course, there is the other thing was, I did speak to her about, I have no idea what’s going to happen financially in the future because this is my mum’s house. She’s 90. She’s quite, you know, kind of not well just now. Eventually she’s going to have, she will pass away. She’ll have to sell the house because, obviously, there’s siblings. And I will never get a mortgage again because of the financial situation I found myself in. So, I’ll never get a mortgage again, so where am I going to live? Could I go and rent a property? Well, no, because I got into a sticky situation financially when I had debts and things like that, no I won’t, because I don’t have references.

You know, and so my future in terms of housing, I mean, I have people that say to me, “I don’t know how you’re not stressed out of your box,” because where am I, where am I going to go, you know, if, when that, the inevitable happens. And that’s why the campervan is a solution for that at the moment, because at least when I finish that, maybe in six months’ time, I will have somewhere to live. And a lot of people say, “Oh my goodness, living in a van?”

At this point in time, my views of the important things in life have totally changed. I’m selling all of my stuff, getting rid of all my stuff.

And I think David and I had decided by that point that careers weren’t high up on our list. If we could get by, if we could get by financially with, you know, part-time or supply or something, that would be fine. We were more concerned about living our lives rather than working the nine ‘til five previously. So, I resigned. At that point. Asking to go on supply, to give me that option for a little bit of money coming in, every month. But I did that because my personal reason, because I felt it was unfair on my colleagues, really. And I didn’t have the, I didn’t have the energy or the desire to go back and fight [my employer] anymore, because we’d already been through all that with occupational health and applying for medical retirement and all those types of things.

Because I had lots – I have, I’ve got quite a few letters from various occupational health assessment people to say that I have two life-limiting conditions that will cause uncertainty in the future and going forward, but that’s not a good enough classification for early release of your pension. So, and having sort of fought that battle, taken advice from MPs, MSPs, union representatives. Again, David and I, we just made the decision that we’ll just walk away from that one, we can concentrate our energies on keeping fit, keeping well and enjoying life. With restricted finance. It was a decision that we made.

And I think there’s more important things in life than money, I suppose, provided you’ve got enough, and you don’t need more than that. But I was quite lucky, I suppose, when it happened. It must be quite a blow if you – because a lot of patients with vasculitis are younger, much younger than me, and it must, if you get that sort of felling you down in the middle or the beginning of your career and you lose all your career, that must be, that must be terrible.

Because they, you know, are probably not in a position where they can say, “Right, enough’s enough, I’ve had enough of this.” And it’s going to condemn them to probably living in poverty, most likely. And I think, I think that’s a shame. Because I don’t think that – it’s political, really, but I don’t think that the benefits system understands these sorts of illnesses. I’ve never tried to apply for benefits because I read the questionnaires and think, “Well, I can make my dinner now, and I can do this and I can do that,” but. Am I ill? Has it affected my life? Most definitely. Fortunately, I made enough pension contributions and I’ve got enough years National Insurance that I will get a pension, but if you’re 20-odd then it’s, it must be terrible. And I suppose it’s that very big decision at that sort of age, just what do you do?

So, I think they should go by: how serious is the illness? What does the doctor say about the illness? Not, “Can you cook your dinner?” Because in fact, you might think you can. I look back on the couple of years when I was really ill and realise that actually, probably, I was ill enough at that point to have, but I didn’t, I didn’t do it. I didn’t. Because you don’t really, it’s only when I look back, I think, “Well, no, I couldn’t cook a dinner, really, because I’d start a dinner and then I’d not finish it.” Or and sometimes I couldn’t have walked 200 metres, now, or I could only have done it in pain. But because it’s a fluctuating condition and you’re not always the same, it’s not quite the same. It’s not, you can’t definitively say, “I can’t do this, I can’t do that,” because some days you might be able to. Now I’m lucky that that doesn’t, doesn’t matter to me, but I think it’s very unfair for younger people.

Yeah, so that’s it, basically, for, on the impact, if you like, that it’s had on me, however, at the time of diagnosis as well, it kind of all came at once. I’d not long started working for myself, so to speak, via a limited company, which was almost like a double whammy because there’s then the insecurity of obviously getting work, obviously you’re not under – like for example, once you’re not with a company, you’re not entitled to maybe sick pay, things like that. So, on top of that, that was always kind of playing away at the back of your head. You’re thinking, “Maybe if I was a little bit more secure and with a company,” or even another line of work. Maybe it wouldn’t have been as financially, financially as rewarding, but just knowing that you were getting a constant monthly salary probably would have kind of helped, like just psychologically in your head, thinking, “Okay, at least, at least the bills are paid,” at least the things like that. But the, the fact that any time work came up, I was like, you kind of have to go. You, go to just go and do what you need to do, get the work done and get home, basically.

So, like I say, that happened, I actually started the limited company of self-employment for myself, in around the April 2018. And then four or five months later, that’s when I actually got diagnosed. So, it was like, it all kind of came at once, which wasn’t obviously the best of timings, but it’s just one of those things, sort of thing.

And also, the impact on my family of these things, because when I was, when my work let me go, they wouldn’t support me for ill-health retirement? They said because I was still undergoing treatment and whatever, that they couldn’t say what was going to happen. So then, luckily, within a year, I kind of looked at this again and I thought, you know, “This is going to be me, I’m not going to be able to get back to work,” so I got in touch with the pensions people and found out that because my work hadn’t supported me at the time, that the only ill-health retirement I could get was tier two, which was, which was the higher tier. So, I got in contact with occupational health and they said because I’d been away from work for six months, that they couldn’t, they couldn’t help me.

So again, I went to my GP, and I said, you know, “I need to, applying for ill-health retirement, could you fill out the forms for me?” And I also said to him, “Would it, would it be helpful if I did you a couple of pages on the practical impact of my disease? The symptoms that I have on a day-to-day basis, what it impacts on what I can and can’t do,” and whatever. And he said, “Yeah, Lynn, you know what, that would be really helpful.” So then, and I said, and obviously I said, you know, “I am more than prepared to pay your fee to do this,” because I knew it would be a lot of work for him. So, I put the forms in, he got them back to me quickly, and you know what? He had photocopied about a hundred pages of clinical letters, had read and understood what I said and had, about what I could and couldn’t do, and used that to, in the points that he was, in the way he’d answered the question, and he’d also numbered the clinical letters to say, “Well, yep, you know, this letter is evidence for the point I’m making here,” and whatever.

So, within two weeks of me submitting that, I had got tier two ill-health retirement, and I just couldn’t have - and again, the fact that he was willing to do that and had done that, just meant – so I bought him a very nice bottle of red wine to say, to say thank you, which I think he was quite touched at as well. But it just, I think for me to go from someone who had, who had earned a wage, who had felt that she was contributing, to nothing, because I knew there was no point in applying for Personal Independence Payment because I wouldn’t, because, because I didn’t meet their criteria. So, to have felt that I was contributing to some form of financial stability for the family going forward, was just so, was so important to me, and for him to do that, to, you know?

I have tried to go to see, you know, the Citizens Advice, but they just said, “Try this PIP,” and then you just hit a brick wall, you know, and you don’t know where to turn. I’m still at that situation, I’d love to know is there anymore, you know, money I could be claiming, should me wife claim in some ways that she’s me carer, because I don’t really go out without her anywhere, so in some ways she’s me carer. But I think when I, we had a quick look into that, she had to give up part time work, she had to be only in part time work. I think. That’s what we read, that was so many years ago, maybe that’s changed. But there’s no way of finding out easy. I don’t think there’s, you know, I’ve looked on websites to try and, and nothing seems to be a straightforward, “You can do this, and you’re entitled to this.”

I mean I’ve, you know, you’ve got a house, you’ve got critical, you know, illness cover. Yeah, if you’ve got cancers, they’ll, they’ll pay, pay out. If you’re one in 50 people in the world, they won’t pay out. So, you still have to pay your mortgage, you know. You just, you just have to tighten your belts and get on with it as best you can. It’s very tricky.

I was very fortunate because I haven’t had to worry financially about anything. So, in the year I recovered, you know, I didn’t have to worry about earning a living or holding down a job, and consequently as well going back to things like going to the gym and having a personal trainer, I’ve had the finances to do that. But I should imagine that, for a lot of people, especially if they’ve got families that they’ve got this type of illness, it’s much more difficult because they’ve got to earn a living and they’ve got to look after a family, I’m very fortunate that it’s sort of at a time in my life where I don’t have to worry financially about anything.

Yeah, so I knew what wheelchair I would ideally like to have. Sort of you, you don’t think wheelchairs cost a lot of money, they do [laughs], they definitely do, and sort of my initial thought and my, my parents’ thought was that I would use some of my savings, to go towards buying this wheelchair, and that my parents would top up if there was any sort of deficit.

So the particular wheelchair I wanted, and that I felt was right for my needs in terms of it was lightweight, would fold down easily to get in the back of a car, so I could still get out and about with my friends that had small cars and things like that, we contacted the company that makes them, and they came and measured me up for one, brought one along for me to try. He even just [laughs], we have a lovely video of me on our driveway the first time I sat in this chair, and it’s got a little electric motor on the back, and this lovely video of me whizzing around and I have the biggest smile on my face, and I don’t think that’s the kind of thing a lot of people associate with someone becoming a wheelchair user, they think it’s this terrible, tragic thing. But no, it was liberating.

Yeah, and we got advice and [laughs], but I’d fallen in love with this wheelchair, and it made my parents so happy to see me feel that free and feel that I was able to move around that easily and sort of, I felt on top of the world, it was brilliant.

And yeah, I was really reluctant to accept money from my parents because it was, it was a lot of money. So basically, that entire summer that I was home from university I spent writing letters to charities, and yeah, by the end of the summer, I had enough money to put in the deposit on this wheelchair, and in the October, I bought the wheelchair outright not borrowing any money from my parents but solely fundraising.