But I desperately at the time wanted to talk to somebody who had it. Okay? And there was nobody out there because, you know, the networks weren’t what they are now. And I did speak to somebody, but when I phoned her, she really didn’t want to talk to me. So, and I found it very, very lonely. And I was desperate to set up some sort of support group.

So, I did try and set up a support group locally, and I think we maybe had a lunch – there was only about five or six of us that came, but that was the start of it. I kind of got on board with a national charity. Because that was the thing I think, you know, somebody local, quite passionate about vasculitis, wanting to make it better, you know, so that nobody would ever go through what I went through.

So, things have improved, and we have in the local group, we have a walking group, some of us meet up and go for walks, so that’s quite good, and a chat.

The kids have helped out. So, I think that’s quite good for them. They’ve done their bit for the charity, raising awareness for mum’s condition.

I just have to get up and keep going, because, because the other option is unthinkable for me: I can’t give in. I want to sometimes give in, but I can’t, I still have kids, husband and a life that I want to try and live as best as I can, under the conditions that I’ve, under the condition I’ve got. So, I still am a bit of a fighter and I still keep going as best as I can, but sometimes I just think, Oc you know? I would like to give in, I would like to run away A lot of the time I would like to give in and would like to run away, and we joke about it.

Even recently I put the tent up in the garden, and my husband says, Are you going to stand there and throw rocks at people if they come too near [Laughs] I said, I might do [Laughs]. And it’s a bit of a joke because we’ve even thinking, maybe we’ll just, the caravan, so I love my caravan. So, I go into the caravan and I, well, I get all excited about going in the caravan because it’s simple living. You know, four knives, four forks, da-da-da-da-da. So [husband] said yesterday, Do you want to bring the caravan in he said, You can clean it and everything You know what’ll happen, I’ll go into the caravan, and I’ll live in it and I won’t be back in the house for a week [laughs]. Because I go in there, I shut the door, I’ve got a book. And it’s funny, because it is the time that I associate with a holiday, and I allow myself to read magazines and books. Maybe I should do that next week, you know, not getting out and doing very much, maybe we should bring the caravan in and pretend I’m on holiday in the caravan [laughs].

it’s not a bad idea [laughs].

it’s not a bad idea, mhm. Psychologically – so I’m very much into sort of psychological things and how they impact you physically, and if you think negatively all the time, it is going to impact you negatively. If you think positively all the time, that hopefully, you know, will help you get through things. And I try to instil that in my family, in my kids, you know? don’t think so negatively because, you know, if you think like that it becomes reality. Think positive, like, you know. So again, I’ve read it all in the books. So, I know what to do; I just don’t always practise it [laughs].

But I desperately at the time wanted to talk to somebody who had it. Okay? And there was nobody out there because, you know, the networks weren’t what they are now. And I did speak to somebody, but when I phoned her, she really didn’t want to talk to me. So, and I found it very, very lonely. And I was desperate to set up some sort of support group.

So, I did try and set up a support group locally, and I think we maybe had a lunch – there was only about five or six of us that came, but that was the start of it. I kind of got on board with a national charity. Because that was the thing I think, you know, somebody local, quite passionate about vasculitis, wanting to make it better, you know, so that nobody would ever go through what I went through.

So, things have improved, and we have in the local group, we have a walking group, some of us meet up and go for walks, so that’s quite good, and a chat.

The kids have helped out. So, I think that’s quite good for them. They’ve done their bit for the charity, raising awareness for mum’s condition.

And I literally, I have, you know, email addresses, it’s a generic email address that goes into the vasculitis specialist nurses there? And they, and also the whole team can see it. So, you know something that I would have sent it off to [name of vasculitis consultant], de-de-de Has anybody replied to Mo? Do we know what we’re doing? Are we bringing her in You know? So, the communication – it’s always, I think, communication – is so good in this team. I really can’t, amongst that, I really can’t fault it. And that’s why – one of the reasons that I couldn’t move elsewhere because I just wouldn’t be sure I’d get the same care anywhere else if something goes wrong. Because they really do pick me up fairly quickly, but that’s because they’ve, they’ve known me for so long. And I’m – and I really am, Avril, I’m really fortunate that, that I have them there. Other people don’t.

But they also know I’ll kick up a rumpus if I’m not happy [laughs]. So, there was one time I had terrible – it was an ear infection, but I really couldn’t, I really couldn’t stand or sit, I had to lie flat, and it really was quite nasty. And they said, Oh, we haven’t got a bed for you and I thought, Sod this, I’m going up to A&E and I took myself up to A&E [laughs] and I said, They will find somewhere fo and I will create a rumpus. And fair enough, they did, I said, I really am feeling sick and the antibiotics in me, you know, it’s not working. So, I have kicked up the odd rumpus, every so often. Maybe just to keep them on their toes [laughs].

I mean that – that was what, 2000, February 2003, and I’m still here, and at one point I really thought I would never see my kids grow up, it was that bad. But I won’t say it’s, it’s been easy; it hasn’t. I get, even now I get regular flare ups. I’m not off steroids, I don’t know if I’ll ever get off steroids. I still take methotrexate once a week and I’ve also started another course of rituximab. I know when it’s flaring, I’m very, I’ve kind of got quite good at when it’s flaring because I know the signs and symptoms. it’s ENT, I call fresh blood, pain, I think the exhaust, the tired – the fatigue is, is one of the biggest problems. There were times I just couldn’t get off the sofa but a lot of it I try and manage it now.

Well, yes, but the damage is done, this is the problem. The damage is done, I’ve really looked into that. I mean, I did audios all my days as an occ-health nurse, I knew, I had hearing – no, it’s completely gone in my right ear. All the little hairs that are actually in the inner ear are damaged, they’re never going to come back. Okay? So I hear absolutely nothing in my right ear. But what – I’ve been to actually NHS and it worked for a bit but then it becomes so cumbersome sometimes, the hearing aid. But I went to Boots, and I’m on my second lot, and it did extend to about a thousand pounds a hearing aid, but the technology is quite good. So, I now hear my – when I have my hearing aids in, through Bluetooth, it makes you think and feel that you’re hearing on the right-hand side, when all it’s doing is transferring it via Bluetooth over to my left ear, that I can hear. So, it was quite emotional one time when I came out of Boots and I had my daughter on my right-hand side and she spoke and I burst into tears and said, My god, [name of daughter] I haven’t heard you on that side for years so that was quite a moving moment.

So no, the hearing’s gone, it’s never going to come back. I think they could probably do like a, something into the skull? Is it a cochlear implant? But then you’ve got to watch – I like swimming? So, you know, swimming, showers, it would just open up to infection. So, I said I’d rather, I looked into it myself and thought, No, I’d rather not because when I do go on holiday, I’m always in the water, you know? I love the sea, sea salt. So, I thought, No, I’ll just, you know, deal away with hearing aids And most of the time I wear them. I mean, just now I’ve got it – just one ear, my good ear, and again connected through Bluetooth. So that’s why I’m hearing you so well at the moment, but this ear’s gone. And it’s never going to come back.

And I think it’s very frustrating, I think, for people, is losing the hearing, because you almost, sort of, you know, take yourself out of social situations. I’m not always aware what’s happening in the news and that, the television might be on but I’m not picking up the same sounds as everybody else. A lot of the time I have to watch my own stuff on a screen with a you know, a hearing device in. So yeah, yeah. And even sort of in the family, my [daughter] will go, Mum, did you hear me you know, people say Did you hear that when we’re trying to work together, so it does impact you. But you know, at one point my hearing was the least of my problems, it was really quite low down my list of things that were wrong [laughs]. But as I get well, I think, Oh, I’ll investigate it again you know, maybe five years later I’ll think, Okay, I’m well just now, let’s go and see if anything else new has happened so. At the moment, no, I think I’m dealing as best as I can with it.

And you’ve said it’s the unpredictability that’s really hard to deal with because, presumably – from what you’ve said – when it flares, there’s nothing that you can say has led to it flaring, it just happens.

Well, a lot of the time, infection can lead to it, okay? And that’s why I have the antibiotics, okay? So, if somebody’s had something in the house, they’re not feeling too well, they’ve been infective, you think Oh, that might be it So, a lot of the time, it’s an infection. And that’s why I try, I try the antibiotics, try the steroids up. If that doesn’t work, well it definitely is a flare, but it’s often – it can be triggered by an infection, this is the problem. And we get [inaudible] immune system. So bad, like last September I was away, I got bitten by horseflies, oh, it was multiple, it was awful. Ended up, we were out in Braemar in the caravan, I had to come back in on Saturday and end up in A&E, massive cellulitis, I mean massive. They said to me Double your dose of amoxicillin. Ten days. If it doesn’t settle down and it’s not feeling better in about three or four days, you’ll have to come and get IV antibiotics It was really, really nasty cellulitis. So again, that was from a bite, an insect bite, and it just [makes phew sound] massive.

So infection is often a trigger and that’s why I have antibiotics handy, because that’s one of my first lines, Okay, just try an antibiotic see if it knocks it on the head. If it doesn’t, steroids, okay, doesn’t, okay, we need more. So, there’s a certain sort of, I don’t know, line of action I would take. So, a lot of the time it, it is infection, and that’s why, it sounds awful, maybe I do stay away from people. Because I don’t want infections [laughs]. You know, subconsciously? You know, people carry bugs, I’m very, and people around me are very wary and the family are very wary, my in-laws, you know? don’t, mm. I think it’s caused a bit of isolation, [laughs] to tell you the truth. People don’t want to come near me. For fear of giving me something if they’ve got something. A lot of that goes on. Yeah. Mhm. Yeah.

If you’re meeting somebody for the first time and they were to say to you, I’ve never heard of vasculitis what would – how would you even begin to tell them [laughs] what
Well, I do, I’ve got it all in my head, I’ve got a little recording [laughs] and I say to them, Well, it’s actually, it’s an inflammatory disease of the small to middle-sized blood vessels, and basically it gets so inflamed because the body attacks itself. And the vessels become so sort of narrow that the blood doesn’t get through, and basically the organ just dies off, and if it dies off it won’t come back again. So, it really can, you know, be gone forever, whatever part of the body it affects.

However, if you’re caught in time, you know, there’s hope and there’s treatment there. You’ll never be cured but you know, given the right treatment, you can live with it and keep what I call the monster’ at bay and I do call it a monster because it can rise out of, come out the blue at any time, but you can put the monster at bay and keep it in remission, for a while, but it needs treatment. And it needs the correct treatment, which is medication. And that in itself can have side effects.

But the drugs that – well, the drugs are still the same as they used when I was diagnosed, but they’ve tried, I think, to cut the steroid doses down a bit. I think the starting dose might be about [amount] now? And again, they very quickly taper – I mean, I was on a long time, for three or four months, and it was high. Whereas now they taper them quite quickly. So, treatment has changed over the years and they’re getting better at, dare I say it, the cellular activity and what the cells are doing, so that’s still going on.

And I was angry. I was very angry, and to this day, it was one of the chest physicians and he came into my workplace one day and I really was about to walk up and say, You misdiagnosed me I was so angry with him. I didn’t, and I thought, No, just don’t, don’t go down there But I was angry with the ones that just misdiagnosed, they were so much into their own, specialities? [smiles] That they wouldn’t think about looking outside their own box. You know, the chest hardly talked to eye, eye never talked to the ENT. You know? It was, it was – and then I thought, we’re all sitting in the same hospital But I do think that’s a flaw within – I hope it’s changed with the younger generation, but I sometimes think that, maybe just living in their own speciality, not looking outside it. And I think that’s sometimes just medicine at times, they don’t see past their own box.