Systemic Vasculitis

But what I would say is just speaking on the elderly people who I – [smiles] I’m saying elderly, I don’t mean, they’re not too elderly, I’m just, I’m saying older than me. I mean, some of the people may just be in their 60s, or I think there has been a few older people, maybe 70 onwards but, so I’m not meaning elderly, I’m just meaning like older than me. But what I would say is that a couple of them – and this is why I like and I don’t like speaking to people because sometimes, because it’s what you get from it, you kind of take the positives or the negatives, but.

If you, some of the people have says, “Oh,” and they say, “Oh I don’t, I don’t wish,” like if they’ve had a symptom for maybe - or had their problems for 20 years or more - I’m thinking, “Have I got all this, have I got 50 years to deal with this or have I…” you know what I mean? So, I’m thinking to myself, I try - I listen to them, it’s nae nice – I listen to them and I’m thinking, I’m kind of ignoring that because I don’t want to think, “oh, it’s going to be doom and gloom for the next,” or anything like that, then it’s not going to be good.

But. You think, they’ll say, “Oh I hope you, I hope you’re not going to be like me for the last, for the next so often,” so you’re thinking, you’ve, now you’ve been diagnosed, have you got longer to suffer with it, so to speak? So that’s, that’s, you kind of weigh up – and also, going on that note, when you do hear - it’s good to hear other people - some things have been quite similar to mines, although they’ve had kind of involvement lower down. And I would say, it’s good sometimes, again, you know, on that social media things, some people will post, like, what they’ve, what they’ve got, which is good to hear. But then you think same times, it, it puts a little thing in your head, thinking - and my wife shows me, thinking of, [touches side of neck] “Is that, is that, is that kind of, maybe I’ve got that now,” or, “Are you looking out for that?” Once you read something, are you looking out for that? So, as much as I like, you kind of, it’s good to discuss and see whatever everybody’s having, you think to yourself, if something crops up, you think oh, this can happen and you’re thinking, “Oh, is that going to happen to me?” So, it’s seeing both sides of the story with that.

I did, think, go on to the internet and get in touch with her, and then she got in touch with a lady who lives in my local area who came to see me. And it was fantastic because she, she had lived in Italy and she said to me, “I’m going to Italy next week,” and I thought, “How could you go to Italy? I can’t get out of the chair.” You know, “How can you be as bad as I was and get better?” And she was the first one made me think, you know, “Maybe I can get better.” Maybe, you know - she was the first one ever said to me, gave me any hope.

And then I got in touch with someone else – I play bridge - and I got in touch with somebody else who said, “I think I know somebody that’s got something like you.” And I phoned them, and he said, “I’m back running again.” He said, “That’s five years ago, but I’m back running again.” And I thought, “Yes, I can do this now.” You know, if I just really, really am determined. Really determined. You know and I used to walk with a walking frame until I was exhausted, and just, I, people say to me, “You were so determined,” but I had no choice. You know, if I wanted to get better, I had to really, really push it. But you have to push yourself. Really, really. All you want to do is curl up in a ball and just do nothing.

I went to one [support group] but I was sitting - and then we had a meal afterwards - and we were sitting at two large tables. And every bit of the conversation was about their illness. And I thought, “I don’t want to be in this company.” I know, I know it was very useful at the beginning, talking to someone, but when I started to feel better, I just thought, “I don’t need to be in this sort of company,” you know? And a two-day conference of people telling me, you know, about pain and about - because at that stage I felt I had managed the pain, I’d managed how to cope with the tiredness, I’d managed how to do this. And I thought, “No, I don’t want to sit for two days listening to this, really.”

I’d say if I had to give a piece of advice for anyone that’s like newly diagnosed with anything, especially something rare, you know, vasculitis is a rare disease is, if there’s any Facebook support groups or some sort of online community of people with the same thing with you, wrong with you, is it’s really, really useful. Because sometimes you get really strange advice, obviously, but most of the time it’s really, really useful for, you know,

someone’s been like, “Oh yeah, no, that’s, I get the same thing happen to me, I went to the GPs about it and they, they suggested this treatment for it” and I’ve actually gone to consultants and GPs before and gone, “Oh you know, I’ve got this thing happening and I am a member of a support group for the thing I’ve got wrong with me, and someone else mentioned that they had the same problem and this is the treatment that they were given for it, is that, is that something I, is that what’s going on with me? Is that something that I could have, you know, have or whatever” and actually it’s actually like worked in that you know, I’ve gone “Oh I’ve heard like I think for example, ranitidine for example, recently has been recalled, it’s just a stomach acid medication and so I just asked on the support group, I was like, “Oh what alternatives have you guys been given to the ranitidine because my pharmacist has been having trouble getting hold of it” and so they gave me suggestions and then when the GP called me to ask me about it they said, “Oh we want to move you onto something else, have you thought about, do you know which one you want to move onto?” and I’ve gone, “Oh actually I’ve heard this one is probably the best pharmaceutically similar to ranitidine, can I have this one?” and then, you know, it’s been like that you know?

It’s a very simple thing like that which can actually improve your health care and it means that, you know, you are a better patient to your doctors as well, you know, it’s all useful to have all that knowledge because you can be a better patient, you can help your consultants to help you, as it were, so you can get the best health care possible so yeah, online support groups are amazing, especially for people that are disabled and chronically ill that you can’t just go out into the world potentially, so the online world of health care is incredibly important I think and has been really beneficial to me, yeah.

Yes. I joined that not terribly long after I was diagnosed because I was looking at lots of different sites that had information about Churg-Strauss and vasculitis. And I read loads and loads of stories from people who had vasculitis and some of them were horror stories. I think after I came home from hospital and reading some of them, it was quite depressing. But then I joined the group, and although I don’t contribute to the group really, on Facebook, I’ve found it really useful because, you know, you read about other people’s experiences and advice they get there. And it was really wonderful to have a bit of a lifeline, I think.

And it was local, you know, more local as well. And also, I went to an event that was on last year, and it was a two-day event, and met a lot of other people who suffered from vasculitis. And that was very, very heartening and uplifting, and some people, you know, that have been through an awful lot in it. A whole variety of different people and talked to a lot of people and it was lovely, actually. You realise – I realised that, you know, some people, you know, have a near normal life and, you know, and you can live with it quite, you know, quite happily. But also, yes. It was gosh, I’m not very good at explaining things [laughs].

It’s great.

[Laughs] Yes, we did lots of different things. We did tai, did we do tai chi? We did tai chi and different talks about sleep problems and, yeah, there was different talks and exercises, and the food was lovely, and it was a beautiful area. And it was all very nice.

I don’t know what made me go and look online. I’m not someone who Googles endlessly, you know, and spends time. But I came across the website for the, for me it’s the Scottish charity, and it talked about the support groups, and I thought, “Oh, right, oh, I’ll go along out of interest.” And I went along and it’s, it was only, oh, five people, six people, sitting round a table.

And I enjoy it. The people there are a mixture of generally kind of relatively newly diagnosed people and longer-term patients and indeed survivors. So, there are three categories, and it’s a useful forum. I enjoyed just hearing folk chatting, I picked up some knowledge, you get the comfort of, right, there are other people going through this. Over the years I’ve been particularly struck with some of the new patients coming in who love the fact that they’re meeting folk who understand what they’re saying.

Quite a few occasions I’ve heard people saying, “Och, you know, my family are good, you know, they do, they listen to what I say and so on and so forth, but they don’t really understand.” And some of them get quite moved by, I don’t know, I think it’s just being able to relax, or have a release of information, you know, “I, oh, I can sound off about this. you know, if I do this at home the folk will think I’m moaning, they’re, you know, they’re good but they think I’m moaning whereas you guys understand, it’s just great to get it off my chest.” And the patients can be quite weepy about it, but it, but because everyone understands actually it’s, you know, it’s embarrassment free. That’s quite good.

I’m no fan of touchy-feely stuff and so on, but quite understand it and, and it’s nice that they feel that, that they can, och, there’s no embarrassment in getting that off their chest.

Also, it provides a chance, some people come in and rant a bit, they’re angry with their treatment or whatever and sometimes we can give suggestions about what to try or, you know, tell them, “Well look, try a different GP within the practice if you’re getting nowhere with that one.” And it might be giving them ideas they didn’t have before, or it might be that someone’s saying that “Yeah, I’ve been thinking about that, you’re right, I’ll do it,” and that brings some success as well. They sometimes come back to the next meeting, “Oh, it’s great, I did that and now I’m getting this, I’m feeling better about things.” So that’s useful.

I post things, so like when I had my oesophageal motility test, I posted, “Has anyone had one of these?” When family members were winding me up, I’d say, you know, “This is driving me mad, I can’t stand it,” you know? And people say, “Hang on in there.” So, you know, and then of course there’s the endless questions associated with vasculitis and trying to make sense of what’s going on, and then supporting each other, I do respond quite a bit actually. I only respond to things when they’re about, generally, and yeah, it’s important to encourage people and to share information with them, share thoughts.

Some of us go to the same hospital so we share, you know, information about where the neuro clinic, something that’s really, once you know where it is, it’s brilliant, but you know, before that it’s like, “Where is this clinic?” [Laughs]. So, you know, information like that’s really good. Where to get a cup of coffee and how long do you have to wait for different clinics, that’s really useful. So yeah, it’s really, really practical. We’ve got loads of discussion about shielding and, you know, the pandemic, and now sort of emerging from that, you know, awful situation with people who are working, you know, they’re going back to work and, you know, it’s wide-ranging.

And basically, there’s no obligation to respond, you know, you can just be a lurker and just read stuff, or you can respond. And some of the people, so there’s one person locally who I met through the forum, so we have met up occasionally, but she is really housebound so it’s really quite difficult now to meet up. Other people, you know, I’ve had contact with, so yeah, it’s great, you know? It’s sort of formed quite useful, supportive relationships, really.

And there’s a local support group to here, so you meet people in person from the forums, really nice, it brings them alive and become real.

And it’s, for example, now we want to have a baby. And I can’t tolerate azathioprine - I can’t pronounce that, sorry [laughs]. Anyway, I can’t tolerate the medicine that is safe for pregnancy, and they said that the safer option would be rituximab. There’s not a lot of studies. I found one, I tried reading it, I gave up pretty fast. I actually asked around and I had some four ladies answering and they said, one of them said, “Yeah, for me it was okay, I did the rituximab before trying to get pregnant, then from the pregnancy it wasn’t needed.” So, it was fine. Another person said, “Yeah, I did rituximab, I got pregnant, but I needed it when I was in my seventh month of pregnancy. And my, as a result, the baby was born with less white blood cells.” But this is something that, in time, it wasn’t a health issue, so it’s something that he developed, so things, the baby was normal overall, so the result was positive. Out of those four people, four positive results. So that’s the thing, you know? But there is no guarantee, there is no medical research, there is no, because, again, it’s something new, it’s something, you know, again, trial and error, you don’t know [laughs]. That’s the thing.

And I didn’t want to go to support groups because I run support groups, [laughs] and I was like, “Not a chance.” Honestly, it was like I, I couldn’t think of anything worse than speaking to everybody else who is ill at the same time and who has their stories. So, it’s a really odd thing that I totally believe in it [laughs] and I totally would be, like, telling people to do it, but it’s not for me.

But yeah, interesting, the groups for me aren’t somewhere I’d go because, again, I don’t want to be defined by it. That’s really how I feel about it. I don’t, I don’t need to speak to others to gain anything for me. If I was going, I’d probably want to be giving others hope, to be honest. It wouldn’t be, for me, I don’t need to speak to people that have got the same thing as me for me to feel better. That’s not to say if I was to get a transplant or something, I might want to, I could imagine me really wanting to do that and speak to people who have been through that experience. But yeah, that’s, I think that’s how I feel about the groups.

Parts or examples within that were things like, a lot of the stories that you would find on these websites would be very much based around people that you would really call success stories. But quite extreme in terms of success, so someone who would have a condition and get vasculitis, they would end up in ICU, they would have all these treatments, then afterwards they would become a marathon runner and they would do runs in seven, eight different countries. Or you have someone else that once they had finished their treatment, they had started their own business and now they were running something in the UK. Or someone else that was doing, doing something kind of, almost something that you couldn’t really relate with because it was so extreme in terms of having a condition and achieving something so kind of far out there. And with those stories not really acknowledging all the bits in-between, but also not really finding something that was that relatable.

And then the other part I think as well that I think I found quite difficult was that, within these newsletters and within the information for these charities, there would often be an obituaries section. And I will never forget, when I was first diagnosed, I received my first newsletter, I was going through, finding bits of information. And then on the obituaries section there was someone who had been diagnosed the same age as me, she seemed to have the same background as me, and started with the same condition as me, and the same, the same symptoms that had come up and then she had died ten years later. And they said she had just been, she had been battling vasculitis for a long time and kind of, yeah, that she’d passed away from it. And I think, [smiles] I think things like that are pretty horrific to read, I mean, at points where you trying to get a newsletter that, I don’t know, you find you’re in a community or you connect with different things and there were parts like that in it that personally, I just found horrific to see.

And then the other part that was then really difficult was all these research kind of parts that they add in to the newsletters and other bits, that are so impersonal and clinical and talk about very scary complications and things within it that, yes, for a research standpoint where you can be objective, it’s so important to know these things, but the way it was presented in these newsletters was, I think, in a way that was, firstly, it was on a very clinical standpoint so not that easy to read from a non-clinical point of view and secondly would then include things that can be quite hard to read if you’re seeing written down specific risks or different things that can happen to people.

So, I think I got a lot of mixed messages, and although there was a lot of information that was helpful within it, I think there was a lot of things that were unhelpful as well.