Systemic Vasculitis

So, I think it makes it, so when you develop other symptoms, you’re thinking, “Is this something else? Is this another way in which this you know, this disease is just kind of running amok?” And part of me – I think I live every day with this kind of thought at the back of my head: “What’s going to be next? What’s it going to attack next? And if it does it subtly and whatever, how far is that damage going to go before I get symptoms. Or before I realise what’s, what’s happening.” Given that I’ve had ongoing damage and whatever, when on paper, my disease is well-controlled. And that’s, I don’t, and although it’s at the back of my head, I don’t think about it too much because, because you would drive yourself crazy.

Yeah. Well I mean if people are diagnosed with cancer there’s a lot of support for them and, with heart disease there’s a lot of support and money going into that, and there’s lots of money going into various things but then lots of things get missed out and I, for me that, I find that quite infuriating because in my life is being told things like, “Oh, well at least you can still do that, at least you can still walk, and at least you’ve still got your legs, and at least it’s not cancer,” and things like that, and that’s not helpful for people to say either because, yeah, you know, it might not be cancer but I’ve got a disease that could kill me.

I don’t know anything about it, that, to an extent that can make it worse because I don’t know if I will live, I don’t know if I will die. It leaves you with a lot of anxieties around that and there are things that people do say because they think it’s a way to cheer people up and make them feel better or, “There’s always someone worse off than you,” and it’s like of course there’s always someone worse off than us, there’s also people a lot better than us. It doesn’t take away what we’re currently experiencing, and I think a lot of people will try to be helpful but they’ll find that actually it’s not at all helpful, it’s, it’s making things worse. You know we want to feel validated; we want to know that, people just should accept that we’re struggling.

We don’t, we don’t necessarily need people who don’t have the, the expertise to try and fix things for us. Just listen you know, acknowledge when you can’t help.

Well, I think. With the heart condition. Once you become aware you have a problem, and in most cases that is going to be some sort of either chest pains or perhaps severe respiratory problem, getting, you know, very breathless and not being able to do strenuous things that you used to be able to do. Once you become aware of those things, firstly you should seek medical attention immediately because the nature of them is if you don’t seek attention, you are guaranteed the problem will get worse and worse. And the longer you leave it, the greater effect it’s going to have on your lifestyle, the greater the chance that it’ll kill you in short order.

With the vasculitis, or more particularly with the manifestation in my case, the damage, which was to the kidneys, this is symptomless. You don’t know it’s there. Once you do know it’s there... you’ll be told that there is no cure, you will be told that they can try and suppress it, and if you are lucky, it will remain suppressed if you take the right medication, it'll remain suppressed and not cause you any further significant problems. But. You know that it could flare up and start causing serious damage at any stage.

So, there are two lessons there, the, well, with both the vasculitis and, with the heart disease and the vasculitis, the upshot is you’ve got to keep taking medicines and you’ve got to discipline yourself to do that. With the heart disease, you will whilst you can’t guarantee that the problem won’t come back again, you can be reasonably confident that if it does come back again, you will get plenty of early warning signs in time to seek medical advice, and that they will probably be able to find some way of putting you back on an even keel without too much difficulty. With the vasculitis, there is the uncertainty that it could flare up very, very rapidly, possibly with you not even realising it, and then you’re back into a really potentially serious problem.

So, it’s a psychological thing that makes the vasculitis perhaps a much more worrying thing to be living with. The how you deal with that depends on whether you’re a worrier or not [laughs]. I’m not a worrier, my basic philosophy is never to worry about things you can’t control.

I think for me, the main, I think the main thing that I felt with illness was the loss of independence, really, and I think the increased reliance on others, either with my body not being able to function in certain ways or be very unpredictable or being reliant on others for communication, for hearing, for speaking, and having to think so much about my own breathing and all the treatments that have gone with vasculitis. I think, definitely, the impact on yourself and your identity can be very profound, I think, for those periods. And to lose such independence at a young age is very difficult, and I think that could be very hard for a lot of people to, to deal with.

So, that was hard, it’s the thing about [sighs] it’s like, the thing about diseases that often we don’t talk about, is the other silly stuff. It’s not silly, it’s big, but it almost feels like, you know, you’re concentrating on getting these kidneys working and you’re really poorly, but actually my face and me changing was one of the most challenging parts of the experience.

Because [sighs] so I’d you know as I touched on, I lost a baby 11 years ago, and I always would still wash my hair and put my make-up on. It’s just part of me, it’s not for anybody else, it’s for me. And it’s, I guess it’s part of my identity, it’s something that I enjoy, it’s almost like in the morning I enjoy doing it. For some people it’s a total chore, but I am really passionate about, you know, my make-up and getting new things. And so even, I remember in the darkest of times, like my friends would know me really well, they might like drop me or send me a parcel of like a lip gloss or something, knowing that these things – and weirdly they became things because you could kind of go, “I am just going to,” it’s like that warrior paint, you’d be like, “Okay, I’m all right, you know, I feel broken inside but here I am and I can present to the world how I want to present to the world, so for this day I, I’m feeling okay actually, and I’m going to go out there.”

And you know, I had a son at the time and so, he was just a baby, I’d go out with a toddler, and go out places. But this felt different, so what had happened was not only had my identity been knocked as in I was no longer a, like a healthy person, and I mean at the time, I was 44 so I mean it’s, you know, I like to think that’s not very old to be ill, and I’d never obviously experienced it, neither had, you know, my parents had always lived a really healthy life and they were, had a healthy lifestyle. So, I think I just put myself into that bracket that nothing happens to me because I’m invincible, like you know I eat well, I exercise, I’m not overweight [laughs]. I’m a bit more overweight now than I was, but I was, I was really slim. And so yeah, I didn’t ever think about my health?

And so overnight, I mean really, I kind of became somebody that was ill and needed treatment and knew that my life wouldn’t go back to what it was. So that was a huge adjustment in my head, but actually I couldn’t even look at myself and see me anymore, so I’d then look at myself and I would be reminded of how ill I was because I didn’t actually look like me.

So, yes, that’s, I thanked everyone and sent them a present. Because I feel it is important to know. Who saved my life. It really is emotional.

Yeah. And you have met him now, haven’t you?

I have, yes. I met him for coffee. He’s lovely. Yeah. Yeah [emotional].

I imagine it’s emotional for him too.

Yes it was, yes. He said, because of the paramedic said he looked in deep shock. By the time they’d put the lines in the ambulance, he’d gone, obviously gone to catch his train. Yes, she said he looked very shocked indeed. I’m not surprised. In fact, he said, he told her that he’d seen me walking to the station - the funny thing is, I’ve never seen him. I don’t recognise him. Either walking to the station or at the station [laughs]. Which is very odd indeed, isn’t it? It is, yeah.

So, both of you – he had seen you before this incident

Yes, he’d seen me stumble on the bridge. The other strange thing is, I was very anti-religious, because my sister, my twin, took her own life five years ago. And I sort of had a bit of a, it may seem a bit convenient somehow, I had a bit of a religious experience. And I felt this warmth coming over me. And I believe God sent [name of bystander who gave CPR]. To save me. And I’ve bought a cross, which I wear, and am thinking about going to church. That’s a bit convenient, but I’ve just got this feeling that I’ve got a guardian angel over me, watching me all the time. I expect that’s quite normal, don’t you?

As long as it’s monitored, you know? I get these blood tests every few months to check everything and I’m on the right treatment and I don’t really see any difference, you know? I’ve learnt to live with it so that’s just what, what I’ll do. I think it’s very difficult at the start and, you know, it is, it is annoying, sometimes when it does come up, you know, you’re like [sighs], “Oh, why did you want to come today?” or if you’ve got something on and it comes. But I think you just learn to live with it, I think that’s the same as everything, like you learn to live with it. And if you don’t, then it’s only going to get you down. I feel anyway. I, that’s what I look in life, I think. I’ve got to change, I’ve got to do it for myself.

Do you talk to it? It almost sounds like you talk to it [laughs].

Yeah [laughs] Nah, I just - I think, it’s ‘the rash’, it’s always called ‘the rash’ and you know, “Oh, there’s ‘the rash’.” I think because it’s always annoyed me, I get angry at it because I’m like, “Och, why, why today?” Like, it’s just always there and I know it will be, it’s never going to disappear. So. I think I probably get angry for five minutes and then I’m over it. Like. I get on with it, get on with my day.

Yeah, it’s kind of brought it all back. It’s, because, even when I think back to that time, especially when nobody believed me, it still upsets me. So, when I was going to do the interview, I’d went up and got all my letters [holds up to the camera] and reading through them and, and then I’ve written little notes down [shows to camera] so I could condense it. And I did get quite upset again because I’d, you know, it was just because I was, I was so desperate, and I didn’t know who to turn to because it had come back as a negative biopsy.

So, my GP, I couldn’t turn to them, the hospital sent me home, the consultants had decided that it wasn’t, and I just, I’ve never felt so alone and frightened in my life as that night. My husband went to bed, in fact my son was through that weekend as well and he’d came in and went to bed and none of them even knew that I’d been out. I just got a taxi, and I got a taxi home again, came in and they, I don’t think he even knows to this day that I’ve actually done it, that I’ve actually been up to the hospital and that was, yeah, it has brought it back.

You know, because I feel as if, once it was finally diagnosed, I’m trying to move on now, trying to get off, the, the next step, you know, getting off the steroids. But I know that, from what I’ve heard it doesn’t, it’s not really curable but it’s manageable. And from speaking to the, the group on Saturday, you know, that one of them was saying that, you know, it does rear its ugly head every now and then and you sometimes have to go back up on the, on the, the drugs, so that was a bit depressing because I thought, you know, they said it sometimes, you know, lasts for a couple of years and then you’re better. But yeah, I've found out different that you know, it doesn’t really go away, it’s just what they say, you’re in remission, but it can come back.

So, I feel as if I’m always on edge thinking, “Is this, is this it coming back? You know, do I need to increase my steroids or is it something else?” So, I’m always quite on edge. But like yeah, what you were saying about this, this did bring it back, it has upset me and made me a bit angry that that particular period, you know, between the negative and the positive biopsy [laughs] was just horrendous. It was awful.

And then your mental health, so all of this sort of affects your mental health. You have the fear of it happening again. In the early days, I, because I was misdiagnosed and I went home and I was on my own, like, if my family had of realised how serious, what was going on, they would never have left me alone. But I was on my own and just, just the fear of being left alone was unbelievable. My husband had to take about three months off work because I was afraid to be left [laughs] on my own, and then thankfully my sister-in-law was breeding dogs at the time, and he got me a wee puppy.

And I got that for my, for Christmas, so it was September my illness and my heart surgery, and then I got her on Christmas night, Trixie. And it just focussed my attention away from me on to somebody else. I call her my therapy dog because [laughs] she is my therapy dog. And she, it’s so funny, because she comes up to you and she kind of sniffs, sniffs, sniffs your breath. If you’re not feeling well, or you’ve forgotten to take your tablets, or, you know, she’s really, really sensitive. So, I, honestly, I do call her my therapy dog [laughs].

So, she came along and obviously, because we don’t have children, you know, then I was going back to work and I thought, “I can’t leave Trixie on her own.” So, then we got another miniature schnauzer six months later, Ruby. So, we’ve the two of them and Ruby was there to keep Trixie company, but really Trixie keeps Ruby company. Because Trixie was on her own so she was used to being the only dog, and Ruby now can’t do without her but.

So, we’ve two dogs and they, yes, they focus my attention, you don’t feel alone if you’re in the house on your own, because you’ve got them. They get you out for walks, you have to walk them. You know, you have to look after them.

If there’s going to be one lasting effect that I don’t think I’m ever going to be able to diminish completely, it’s my depression, because I can’t, there are certain things I can’t let go of. I can put them to the back of my mind, I can, and they are, without vasculitis, they wouldn’t be there. And I won’t say they’re caused entirely by vasculitis, what I’m saying is if I hadn’t contracted vasculitis, I, my mind wouldn’t be at that point. It would be no. So, it is a difficult one. I don’t, it’s not something I’ve discussed, I mean, my consultant knows I get treated for it, but it’s not something, I would be very surprised that if he even raised it, to be honest, because of, because he knows how it affects me and it may affect his own treatment [laughs]. So, I think it, it goes unsaid. And that’s probably the way it should be.

But mhm. I think the other key reason for my, well, one of the key reasons for my vasculitis – for my depression here you go – was the fact that I I didn’t remember anything when I was in hospital. And as much as people tell me I should let it go, almost be happy about it, [laughs] it’s something that will live with me for the rest of my days.

Because that is, and I think that’s really, really personal in that I think an awful lot of people would not be of that mind. I think they would, they would be glad that they didn’t, because there wouldn’t be a great deal of good to be remembering.

But I’m, you probably, you can probably tell already that I am a person that likes to paint a full picture of me and my life, and I can, I do that because I need to do it for other people as well. And if I’m lacking in any knowledge, I feel that I am then not able to either help myself or others. And, as I said to you right upfront in this conversation, if there, if there was one thing that hurt me more than anything else that I cannot let go of, is the fact that I don’t remember anything. I feel that was unfair on everybody else [laughs]. That’s my depression talking.

Oh, I also want to mention one thing. I remember asking, so before being discharged and having a chat with that lady that was checking, you know, if my mental faculties are fine, I remember asking her, “But look, I don’t remember, you know? I don’t remember what happened, I don’t remember, you know, I’m…” And I really remember, and I really liked what she said, she was like, you know, “Your, your body was in such a distress that he actually had to fight for its life, and probably he didn’t deem necessary to make memories, so all the resources focused on something else.” That, I don’t know, that line really helped me a lot because I was like, “Okay, that’s enough, I don’t need to know what happened.” You know what I mean? Because you don’t… If I read the transcript of like our medical records, like my medical records, if I read all of that and, you know, what happened and what I went through, and I, it’s disturbing for me, and I, because first of all, I don’t remember, and what you read over there, it’s unthinkable. And I choose not to, you know? So, I think, like, maybe there’s a reason, maybe I’m not supposed to remember that, that’s it. You know, it’s, in a sense, it’s better I don’t remember. 

The downside is that my husband was there through all that experience and that created the trauma for him, which is, you know, I don’t know. Hopefully, slowly, slowly. But that, that created pretty much a trauma for him, and I don’t know, it’s… That’s why you can say that this illness affects everyone around you, especially your loved ones. So, it’s terrible in this way.

I think for me, the thing that kept me going was I, it would have been very, very easy to sit back, I think, and, you know, have the vasculitis and the Churg-Strauss get the better of me, but I think from the start I was determined that I would still have a, as good a life as I could possibly have, and get as much strength back as I possibly could. Because all the things I enjoyed doing were outdoor things and yoga and things like that, and I didn’t want to give up that life that I had before.

One of the, you know, one of the most valuable things, and it kind of… I’ve been moved to tears at times by this, one of the most valuable things is just spending time with people and not talking about the bloody disease. Just not talking about it. Not thinking about it. Just a few hours of relief because, when you’re on your own, you know, you, you’re constantly thinking about it, it’s the major fact of your life. If you’re not doing that you’re thinking about your next prescription renewal, and how you’re going to order it and how you’re going to get it collected you know, or you’re thinking about this little extra symptom that’s suddenly popped up, or you’re looking at your results online and thinking, “Oh, that’s gone up and that’s gone down and what does that mean and should I be calling the doctor about that?” and, you know, or, it’s constantly there all the time.

So, it’s, you know, pre-coronavirus, pre-lockdown, it was wonderful just to be able to go round to someone’s house for an evening and just have a nice evening of not talking about it.

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, “Och” 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].