Wendy
Wendy has granulomatosis with polyangiitis (GPA), an ANCA associated vasculitis affecting her lungs, eyes, nose, mouth, ears, nerve endings and joints. Her vasculitis is difficult to control, and she has given a lot of thought to living and dying well.
Wendy is medically retired from her career as an occupational therapist, where she worked in clinical practice, teaching and research. Wendy is divorced, with grown up children. Ethnic background: White British.
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Vasculitis has changed Wendy’s life completely. It flits around her body, flares up and dampens down, and relapses (gets worse). A range of powerful drug treatments bring periods of relief in parts of her body but come with serious side effects. She has to take great care to avoid infections, and the instability of her vasculitis means that surgery which might be helpful feels too risky.
To cope, Wendy draws on all her experience as an occupational therapist. She organises her time in a regimented way, breaking down activities into a series of tasks, limiting the number of activities in a day, and building in rest periods. She has a large support network to draw on and conserves her energy further by identifying what could be done by someone else. Wendy feels it is important to give back to her community, which she does through painting, crocheting, and growing seedlings.
Although Wendy looks well, she finds the ongoing activity of vasculitis and hospital visits traumatising. She has experienced suicidal thoughts and benefited from “superb” counselling. Wendy says she didn’t realise how mentally unwell she was, both as a reaction to prednisolone (steroids) and to losing her existing life, work and idea of the future. Drama therapy has helped her use her imagination to understand her reactions and think through situations creatively. She felt “empowered” to make a Living Will (through Compassion in Dying) and arrange to donate her body to medical research.
For Wendy, vasculitis began with a mix of weird and fluctuating problems with exhaustion, her nose and eyes, shoulder pain, pins and needles, a rash, being too cold, and coughing up blood. Early concerns were around cancer, but Wendy also asked for a referral to rheumatology, through which she got her diagnosis of Wegener’s vasculitis (now known as granulomatosis with polyangiitis (GPA)). She suggests that, if someone has this kind of “mixed picture” of symptoms, a rheumatologist should be involved.
Wendy feels that the idea of self-management needs to be explained to patients, so they understand how important it is to tell healthcare professionals about the problems they are having. She says the self-management process would be eased by improvements in pharmacy services and changes to how services are structured and funded, as this is currently “an absolute nightmare for people like me who need more than one service.”
In practical terms, Wendy is grateful for the support of specialist nurses, and appreciates the involvement of allied health professionals. This includes the physiotherapy assistant who helped her explore what was possible with pilates, and the dietician and speech and language therapist who helped with strategies to manage choking and swallowing. She feels that healthcare professionals could learn much from each other about engaging people in their care and making it feel personal rather than a conveyor belt.
To make sense of her vasculitis (“Wegener’s”), Wendy and her consultant liken it to other things.
To make sense of her vasculitis (“Wegener’s”), Wendy and her consultant liken it to other things.
How do you sort of refer to it?
[Laughs] well, I used, when I first got it, I used to write little plays and it would be Wegener’s. I’d call it Wegener’s because, like, I quite like, I mean, Wegener’s is the idea of it being vague, vagueness, but also a dodgy Nazi because Wegener, Doctor Wegener was a Nazi who first named the vasculitis, that’s why they prefer to call it GPA. So yeah, the Wegener’s, but I, the same doctor who talked, I think he said it being a bit of a beast, he comes out with lots of different ones. One of the significant ones, he talked about an oil tanker, it’s like an oil tanker, we’re just steering it, but we’ve not dealt with the big problem. And what I got from that was the volatility of it, that I actually had to be really, really careful to try and get it on track, you know? So, I had an image of a road oil tanker, like a petrol tanker that was a bit out of control. But a friend said, “Well, I see that as a ship, like a ship oil tanker,” so that opened-up a whole other world.
For Wendy, early symptoms of vasculitis were “so minor that it didn’t seem worth bothering the doctor.”
For Wendy, early symptoms of vasculitis were “so minor that it didn’t seem worth bothering the doctor.”
I think the thing to say, I’ve written down some thoughts about it, [laughs] it is very complicated so it is hard to know where to start, but I think the thing to say first is that before I was diagnosed, I had some experiences that I now recognise as being leading up to the vasculitis diagnosis, but none of them were ones that you would really take a lot of notice, I had odd days where I was completely exhausted, and I had, I had days when – oh, I had a sore nose, [holds nose] that’s right. And it was just so minor that it didn’t seem worth bothering the doctor about. And then I did get a really runny nose, and I was at the doctor with something else and I said, you know, “This runny nose is a bit of a problem, and it doesn’t seem to go away. And I haven’t got a cold.” He said, “Oh, well, have some Beconase,” so I had that and that didn’t make any difference.
And so, when it started really kicking off, I had no idea, you know, what was happening to me.
Wendy felt the doctor who told her she had vasculitis was “lovely” and the first to understand “the whole picture.”
Wendy felt the doctor who told her she had vasculitis was “lovely” and the first to understand “the whole picture.”
And finally, my rheumatology appointment came through, so I had to wait two-and-a-half months for that. And the rheumatologist said that she, after the initial assessment, she was like, “Oh you’ve got some inflammatory arthritis, don’t worry, it’s fine,” you know, “we’ll sort it out.” But they did all the blood tests and then she rang me and said, “You need to come in tomorrow, I have to talk to you.”
And luckily my daughter was staying with me so I said to her, you know, “Can you come, because this sounds like they might actually know what’s happening.” And the doctor’s lovely, I still see her now, she was great. She, she just said, “Look, I’m really sorry but you have got a really nasty, rare disease.” And I thought she said it was called ‘Vagueness’ and [laughs] you know, I was post-menopausal, I thought, “Oh, god, I’ve just got over the menopause and now I’ve got this disease called Vagueness, you know, this is not fair.” [Laughs]. Anyway, she, I said, “Are you sure it’s called Vagueness?” and she said, “Well it’s vay-ge-ner’s, Wegener’s Granulomatosis,” and she gave me a leaflet and, and I, “Oh, okay, oh, all right.”
And then she said, “Don’t Google, don’t Google it because you’ll be scared stiff,” she said, “But I want you to be seen at the vasculitis clinic in the bigger hospital within the week. We have to move very fast, it’s got to your lungs, it’s” you know, “It’s obviously causing big problems with your eyes so, you know, we need to do something.” And she was the first doctor who took the rash seriously, the joint problems, she was just brilliant, you know, she understood the whole picture.
Wendy’s doctor helped her spot the difference between her vasculitis flitting, flaring or relapsing.
Wendy’s doctor helped her spot the difference between her vasculitis flitting, flaring or relapsing.
The same doctor, I talked to him about, “Well what’s the difference between flaring and relapsing? I don’t know what’s happening with me,” and he said, “Well, the relapses are the big, big, big ones where we get all, you know, do things fast. The flares are what we try to control, the flares, so they don’t turn into relapses.” But he said, “But you have flitting as well,” [laughs] and the flitting was this idea that – and that’s how I make sense of it, like a butterfly, almost. It flits from one bit of my body to another. And that has been so useful, so I feel it flitting around, doing different things to me.
And then when it starts flaring, like when my eyes were going red before Christmas, that would be a flare. And then because I started having lung problems as well after Christmas, we are, are we heading towards the relapse, so I got very frightened. But then you think, “No, it’s okay, it was a flare and now we’re probably back to flitting again.” So yeah, [laughs] yeah, it’s really helpful, really, really helpful. But he’s the only doctor I know that talks like that; none of the others do. So, and I think, yeah, he’s a real specialist in vasculitis, I think he, you know, really evolved that language, to be honest, through lots of experience. And maybe – I always think that maybe he knows who he can, you know who needs, who needs, who needs the poetry and who doesn’t, and that can, you know, for me it’s very powerful and helpful, so hmm.
Wendy found high dose steroids were “not good for me mentally.”
Wendy found high dose steroids were “not good for me mentally.”
Anyway, so I had the methylpred, and that was when I got aware that, actually, prednisolone is not good for me mentally, because I found myself, I had a, one cath, catheter thing in the back of my hand, because they were doing it once a day but I was going home in-between, or I went home to pick some more stuff up, and normally I stayed with my friend, and I decided for reasons best known to myself, that I’d play ball with the dog in the garden. And I’d lived in this house, it would have been about four years by that time, four or five years. And I’d thrown the ball over the, into the school playground by mistake [laughs], and I just didn’t think twice, I just went and got a chair and started to climb over the wall. Now, I’ve never ever felt the need to climb over that wall ever before, it really wouldn’t be something I would try and do. You know, I’m not someone who likes climbing walls. But I, I got one leg over and I was sitting on top of the wall, and I thought, “Hang on, this isn’t such a good idea, how did I end up here?” and then I was really worried about my hand and, you know, the whole business, so anyway, I managed to get myself out before I did any damage, but I thought, “Hmm, maybe I shouldn’t be driving?” you know, “Maybe I should be taking it slowly.”
So anyway, yeah, that, that was a hard time.
When fatigue from vasculitis gets “dangerous,” Wendy organises herself so she can rest for several hours.
When fatigue from vasculitis gets “dangerous,” Wendy organises herself so she can rest for several hours.
Well, I guess the mental health that comes with cognitive challenges, the fatigue though, the fatigue is the cognitive, that, you know, that really messes you up. It gets dangerous, the fatigue. It did the other week, I did too much and there were, I, things that I hadn’t anticipated made it more difficult. And I went, well I did more than I should have done and then I just couldn’t function at all. I couldn’t make decisions, I couldn’t do anything, and I’ve been in that situation a lot in the early days, ended up just sitting in a chair, not really knowing what I needed to do.
And I mean now I know if I’m approaching those kinds of fatigued times, and this is if I’d have been aware – I guess I just couldn’t have anticipated last week but it was blooming difficult. But even then, I knew that before I sat down, I needed to get a drink, I needed to get my phone, I needed to make sure I’d gone to the loo and I needed to have something to do with me, so I had my bag of stuff. And if I had that, then I would be okay just to sit for two, three hours. But in the early days, I’d sit there for three hours, doing nothing, watching it get dark. And now I can’t see very well, you know, beyond – I have to have my glasses on, so I have to remember glasses and hearing aids and... [laughs].
Wendy has a network of friends who help her live with vasculitis. She finds “ways of giving stuff back.”
Wendy has a network of friends who help her live with vasculitis. She finds “ways of giving stuff back.”
I think the thing that saddened me most, I guess I’d lived here three years when I started getting ill, yeah, that would be right, three, three years. Yeah, three years. So, I’d moved from a place where I’d lived for 20-odd years. And so, some of those friends, we were meeting up and having a meal, you know, in London, sort of the nearest big city to us all. I can’t do that now very often, and it’s been very difficult for them to make the journey across to me. I live a hundred miles away, and so they’ve been waiting for me to get better [laughs]. And that seems to be quite interesting, this idea that, and I know I’m not going to get better enough to do what we did before, so, you know. And I haven’t got the energy to bring them over, so, you know, that’s a friendship lost, which is sad, very sad.
And likewise, family, some family members it’s like that, but yeah, it, I think that’s the thing about a disease like this, it, that’s how it affects relationships. I try not to be demanding, I get told off about that. But and, you know, to sort of ask for help when I need it, but I’d be, I’m quite good at asking for help because I have so many people that I can ask, so I think some people feel I haven’t asked. Why haven’t I asked for help? And I’m like, well, I’ve got someone else helping me, you know? Sort of, like, without actually telling everybody who, who the network is, my children know but, and I think it’s important they do, but otherwise, I don’t know. And I do believe it’s important to give and take, and I have lots of ways of giving stuff back, you know, I make things and I paint, and I do crochet and stuff, so, and I’ve grown seedlings this year so, you know, half the village are growing stuff that I’ve raised from seeds, so you know, it feels reciprocal, really. Yeah.
It was important to Wendy to talk to her children about the end of her life and make her wishes known.
It was important to Wendy to talk to her children about the end of her life and make her wishes known.
And that was a real focus for counselling, was about taking control of ending my life so that my life ends in a good way, not in a way where I’m consumed with anxiety about people I’m leaving and all the rest of it. So yeah, that’s another thing, you know? [Laughs]. So much you have to switch and deal with. But I do feel, I’ve talked about that with friends, and I’ve talked about it with my children because I think, you know, it’s important they know I’ve thought about it and it’s not some, some horrible unknown horror that’s hanging around, ready to jump on us. You know, to me, it’s much more important to be, you know, talk about it.
Where did you access the stuff about the living will?
Compassion in Dying. Yeah, via Twitter. I think it was Celia Kitzinger or someone like that who originally picked up on my Tweet, and then, yeah, Compassion in Dying people are just, yeah, the form is dead easy. Well, dead easy, ha. Sorry [laughs]. The form is clear, the form is it’s, you know, straightforward. I guess it helps that I’ve, I’ve worked with people who are dying, I know how, I know how the kind of set-up works. But you know, it’s very clear for thinking through different possibilities. And then there’s a really nice bit at the end of the form where you can put about what you would like to happen when you are actually dying, you know, what are the important things to you that staff should know, you know I think this is brilliant, I really want to be able to say these things.
And then you nominate the people that they keep in touch with. You also, I also listed the people I talked about it with, so again, you know, if there’s any question over my capacity to make that document, they could go to it and say, “Oh, yeah, you know Wendy knew what she was talking about,” so, so that was, you know, again, to me it was an incredibly positive thing and I haven’t worried about it since, you know? I think out of the counselling, there were two things I really wanted to do apart from get more therapy, and one was to do body donation because I thought, you know, that would be a good thing to do, and the other was the living will. So, I’ve done both of them now, so I think “Oh yeah, I can get on with my crochet and my painting and growing mange tout and stuff like that.” [Laughs].
Wendy asks and answers questions in an online vasculitis group but says you can “just be a lurker.”
Wendy asks and answers questions in an online vasculitis group but says you can “just be a lurker.”
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.
Drama therapy was “extraordinarily powerful” in helping Wendy make sense of her life with vasculitis.
Drama therapy was “extraordinarily powerful” in helping Wendy make sense of her life with vasculitis.
So, one of the things that very early came out was I would pick particular colours, and one of the first sessions we had was using a sand tray, so you create a landscape in the sand tray with little figures and things, and that was very interesting. But one of the things that happened was, you know, I was very interested in this figure in the scene that was wearing blue, and to me, the colour blue was kind of ambivalent, it was good and bad, there was, you know. And that interested me. And then we did an exercise, we did a session where we got the scarves out and, oh again, I was very absorbed by all the colours. And this is me personally, this isn’t anything the drama therapist told me to do, this was just like, “Oh, here comes the blue again,” you know? And I was playing with this blue, huge blue piece of material, you know, I was drowning in the blue, I was surfacing from the blue, I was, there was a blue thing that I didn’t want to go in, like a whirlpool, and then I dipped my toe in. So there seemed to be a huge amount of ambivalence about the blue. I went for my infusion that I had in the middle of the drama therapy, and I noticed that all the hospital is blue, you know, the walls are blue, the chairs are blue, the panelling’s blue, so I’m surrounded by all this blue.
And I thought, well this is very interesting because when I first had chemotherapy, the cyclophosphamide, people were sending me pictures of green. I really needed pictures of the outside because I couldn’t see any trees or anything, and so I thought, “Oh this is fascinating.” So why I feel ambivalent about the blue is because it’s a good thing to be here and to be treated, this is keeping me alive because I would die without rituximab, but you know, it’s also, does me so much damage, you know? I come here and associate it with so much, so many problems. So, it was really helpful to kind of acknowledge that.
But I think what helped for me was trusting the drama therapist, knowing that this would work. I can imagine for some people it would be quite hard to think, “Really?” you know? I’m going to waft a few scarves around and, you know, do stuff like that, but for me, it was extraordinarily powerful. And because I can talk [laughs] I can talk, you know, this wasn’t talking, you know, it was doing, it was moving, it was it was different, it was great. Yeah.
Wendy was an occupational therapist (OT). Now that she has vasculitis, she thinks healthcare professionals should read up on a rare condition rather than expecting the patient to tell them about it.
Wendy was an occupational therapist (OT). Now that she has vasculitis, she thinks healthcare professionals should read up on a rare condition rather than expecting the patient to tell them about it.
But the other thing that interested me was the OT didn’t read the information about what my condition was or anything, and I used to do that. I used to just rock up and do an assessment, and if it was someone with – I used to, you know, check what was wrong with the person, but if it was something I had never heard of, I used to think, “Well, they can tell me their experience, I’ll go with that.” But what I hadn’t realised was the professional – of course, you know, when you’ve got something like vasculitis, you’re having to explain it all the time, so actually it’s really, really tedious to have to say again, you know, “Well this is what it does to you, this is how it works.” So, I knew this OT hadn’t read up on it, whereas others had read up, you know, they made it very clear to me, “Oh, yeah, we’ve, you know, we’ve been, I’ve been reading about it, do some Googling.” The physio I’d sent information too and they read it, you know, so it was an interesting thing [laughs].