Systemic Vasculitis

You never know how you’re going to be. This morning I got up and my ankle was swollen up for no reason at all, just was. Now it’s gone down, but this morning I had my walking stick around the kitchen. And now I don’t need it. But that’s frustrating still.

I don’t expect, I don’t expect a miracle. There’s a limit to what doctors can do and I’m really pleased with how much better I am. Really pleased. But of course, I’d rather be well, I’d rather not have it. Anybody would rather not have to live with it. But I think, well, I’ll do the best I can with it. And I’m happy now, I’m happy with the sort of level of, you know, I wouldn’t, I wouldn’t say, “Oh, I’m not well enough, I need more treatment,” I’m happy with how I am,” you know? When I go and see the doctor now, I tell him, you know, I’m a hundred per cent better than what I was and I think this is good, you know, it’s a good pitch to be at because it’s, it’s not really possible to turn your immunity off so much as you don’t have any symptoms, I don’t think.

I’ve never heard of anybody say, “Oh, right, it’s gone away, I just don’t have it anymore,” you will still have days when it’s not so good? And there is no pattern to it or rhyme or reason to it, or – well, not that we know what it is. It just is. Some days are worse than others. You’ll have spells, I might have a week or so when it’s worse than normal, but it never goes back. And I don’t think it ever will, really. I hope not, anyway. I don’t think I’ll ever be like I was before I was on the treatment. And if I got like that again, I suppose they’d try something else.

Yeah, because there are other things.

Yes. Yeah, there are, yeah. I’ve been lucky, I’ve not really needed the really big guns things that they need. As I say, it’s not gone for my kidneys or anything like that, so, you know, people who have that sort of complication often have to have much stronger drugs, at least at the beginning. So, I’ve been lucky that way. I was lucky that they’d found it before it really, I imagine had it been left, it would have done something. So, I was lucky it didn’t.

I think the consultant said to me when I was first diagnosed in hospital they said if, if they had waited an extra week to diagnose me, I wouldn’t, I would be dead, because I deteriorated so quickly and I was so unwell at the time, but now I’m even more unwell, day to day, which is strange really [laughs].

I guess maybe it’s not the happy outcome which, you know, sometimes you might want to read about of sort of, you know, the, the story, very inspirational story sometimes of someone got this very severe thing, then they started treatment and four or five years down the line they’re now doing, you know, ten kilometre marathons and things like that and that’s not the reality for every single patient, in fact I think that’s probably not the reality for a vast majority of patients that gain a chronic illness is, you know, not every single person recovers fully, not every single person, you know, goes into remission, some people develop further things wrong with them, like I have. Some people develop complications as a result of the medication that they’re on, like I have, its, you know, it’s things like that, it’s very, I’d say being part of a support group of people that have the same thing, the vast majority of us don’t have an easy ride with it. The vast majority of us do develop much more complicated problems, and it’s not always just an easy road of, you know, you get unwell, you get diagnosed, you start treatment and then you’re recovered and then you go back to living maybe a normal life or relatively normal life that’s maybe slightly adapted. It’s never, it’s never this kind of start at the bottom, go up and then wooh, it’s you’re fine again, it’s chronic illness unfortunately and disability is very much a sort of, you know, it’s a wave, it’s a, it’s never just a, can’t remember the term, you know, upwards trajectory, it’s very rarely that.

And you know, sometimes lie awake at night, getting very anxious about it. And what I mean by that is you get worried about how much life you’ve got left, quantity, and you also get rather worried about quality you know, what quality is that life going to be, or you get you know, you even have sort of nightmare visions of ending up in a wheelchair, you do, you inevitably think these things.

And I’ve found it very helpful to talk to my doctors and the nurses about that, and that’s been, that’s been very reassuring. You know, they don’t, they don’t gloss it over, they’re, they’re honest, which I appreciate you know, but at the same time a lot depends on factors that are specific to you, and it’s important to understand that and keep it, keep a grasp on it.

I would also say that, on the upside [laughs], which sounds a strange thing to say, but on the upside there is a benefit, and the benefit, it’s kind of something that you hear a lot, but I think you hear it a lot because it’s true, and that is, it does focus the mind. It does make you think, “Well you know, if I’ve only got a few years left, well I’d better use them well.” It does make, it does kind of wake you up in a sense, and make you feel that, I know this sounds a bit grand, sorry about that, but… other patients have said the same to me, you kind of feel what’s my legacy in the world, what am I going to leave behind, and you want to leave some kind of, yeah, achievement behind you.

You know some people, for a lot of people that’ll be having children and bringing them up, and that’s a wonderful thing. I haven’t done that, I don’t have kids, so you know, for me it’s, it’s doing my research and making a contribution to that field. So that’s become you know, very, very important to me.

I think in my case, maybe a little different to some others, in that when, [laughs] forgot to mention this, when I was rushed into intensive care, when I was in there for a few days, on the second – I think my wife said it was the second or the third day, they were extremely concerned about me because I had developed a really bad chest infection in intensive care. And I think they were at the point where they didn’t think I was going to make it.

And, albeit I don’t remember anything about hospital or being there at all, not even a micro, millisecond, the feeling that has been expressed by other people that I know, the feeling that I was fortunate to come out of that and come through it, I think certainly put a new, a new, [laughs] new aspect on the rest of my life. I certainly, as much as I possibly can, make the best of my life. And things that used to concern me are trivia.

And I, that has helped me come to terms with my situation, the things that I have lost or the things that I used to have, or liked to do, like my motorcycling and other things. And maybe more, a more comfortable person with myself, I think, and what I have. I mean, that’s also been helped by the fact that I’m now retired, therefore certain pressures in the past aren’t there. So yeah. It has its good sides [smiles].

So, and I’ve got a wee granddaughter coming on the second of November so, [my other daughter’s] 31 weeks today. So that’s really exciting, you know, and, things like before how would I have managed, how would I have managed having her because obviously I want her to be, I mean my mum was a huge part of my daughters’ life, a massive part of my daughters’ life, and I want to be that person, you know, I want to do that as well, but how do you do that when you have got a disability? But and I think people have thought that, you know.

Who was it said, somebody said to me, “How would you get down the stairs with her?” and I said, “Well I’d carry her [laughs] on my stair lift, you know, when she gets a bit older, I’ll sit her on my knee.” And there is maybe plans for the future to get a bungalow, I’m thinking of maybe selling and buying a bungalow because that would be easier for everybody in the long run.

But things like there’s wee cribs that you can get and you can actually fold them so they, I could carry that down with the wee one, and. So, there’s lots of positives that, I can’t wait to get the pram because, I’m fine if I’m pushing something, see if I’m in a supermarket or anywhere I always get a trolley and I put my stick in the trolley, I’m fine, as long as I’m balanced, you know?

Yeah, so I can’t, and that’s I think what’s, I tried, although it was really painful, but I tried to make me concentrate more on the treadmill to try and build that muscle up in my legs, so that I can go a bit further, you know, walking wise and it’s just so exciting. But, but there’s lots of positives out there and I don’t, we don’t think of it, I don’t think the girls do and their partners don’t, you know, I think we’re all just kind of this is me now, it’s quite...

But the one thing I think people should be aware of is that there’s a lot of research ongoing into vasculitis, that we don’t know about. There’s a lot of real, clever people doing their best to try and, as they have done over the last, you know, ten years, you know, rituximab has been something that, it’s only came to the forefront in about the last ten years in vasculitis.

And you know going back even further, the mortality rate in vasculitis going back 25/30 years ago was pretty poor, and I can remember a consultant saying to me he now enjoys his job tremendously because going back then there was a lot of, there was a lot of sadness and grief. Whereas now because of the advancement in medication caused, you know, due primarily to all these hard-working consultants and research assistants, there’s now a better outlook for vasculitis patients.

It’s a condition that you live with. And that’s it. It’s no worse than some of the other conditions that are prevalent just now. So, there is a, you know, that’s the message that, it can only get better.

But it is incredibly challenging. I would say for those people that have completely lost their voice and got to the point where you cannot make any sound, there really aren’t many options out there. And even now, when we’re thinking about the future, for me, it’s very uncertain about whether I will maintain this voice or completely lose it altogether permanently, for my, for the rest of my life because we’re still uncertain about whether I can actually have procedures on my throat, or whether they’re not, they’re not viable.

And if they’re not, we’ve had to think a lot about things like voice banking and the ability to save thousands of words and once kind of having to say those words, to be able to work with companies to be able to develop a system in which you could type and then it can come up with your original voice, to be able to say these words. And people, like, different people in the US, have been known to be able to use these devices and to be able to communicate in this way, but I think it’s still quite a new thing. But it would always have limits again on having to hand-type out what you want to say and then it, for it to come up.

Apart from that, I’ll be honest, we can’t think of that many other options that, that, that could be done, really, for me, at the point if I completely lose my voice. So, I think it’s quite a, yeah, at the moment we’re, there’s a lot of uncertainty around that and I think that is definitely quite difficult. So, we’ve even tried to do things like increasing doing videos with my daughter or increasing different recordings, or just, just maybe even, just things for our own family, of saving the voice. In, just in case, within a few years I lose it permanently and my daughter never knows the sound of my voice when, when she’s older.

Sort of two of the antibiotics that treat it were IV antibiotics but one was an oral antibiotic, admittedly quite an obscure one, so it comes in a sachet that you mix into water, and that sort of wherever I went from that point I would need to carry this list of antibiotics that would treat the infection I had, and carry this oral antibiotic as well to take straightaway as soon as I got an infection, but equally that I should avoid taking this antibiotic for as long as possible because I should go through as many antibiotics as I can first and then take it because, if I become resistant to this, then it’s kind of the end of the line.

And yeah, for someone who has sort of experienced health problems a lot before, I think I would’ve expected myself to deal a lot better with sort of that fear. But it was, it was a different kind of fear, it was not fear of, “Oh, I’m going to end up in hospital with an infection at an inconvenient time and not be able to do something,” it was a fear that was, “I’m scared I’m going to end up resistant to all of the antibiotics and that’s going to be the end”, which was something very palpable.

And I don’t think it’s something that I’ve fully come to terms with yet. It’s just over a year ago it happened. And, since then, I think I’ve always felt vulnerable in terms of my health, but I’ve, it’s never been sort of to the point that I have nightmares about it, and that sort of before I, when I wasn’t having a flare, when I didn’t have an infection, I sort of found a new normal? [Laughs]. Which is a phrase that’s being used a lot now in a very different way, that maybe, maybe this will become normal one day, but since then I’ve been quite afraid. It’s something I think about a lot.

I think I touched on it with my husband when I came out the hospital, I do remember saying to him, “I could die now early, I might not have a full life.”

And I think that’s still around for me, I think I still, whether it’s accurate or not, and I don’t suppose anybody could give you a definite anyway, could they? Well, nobody can. They couldn’t give you a definite that you’re going to live for like, nobody can say, you know, even if you were well, like I couldn’t give a friend who’s got nothing a definite that she’s going to live for life so, I kind of just choose to live like that, it’s sort of around the - would this take a toll on other organs? Would this mean that when I am a certain age, I might need a transplant? Would that work? [sighs] Would I get poorly again? I don’t like thinking about that, but I choose just to think about now and I choose to live now because I’ve only got today and that’s it. I mean, I’m only, as much as anyone’s ever got is today. So, if it’s a good day today, that’s where I live in the day, and I very much live like that anyway. And I’m really good at perspective-taking over what’s important, what’s not important, and I live completely a life of abundance of gratitude and really acknowledge my blessings because I’ve had difficult times? So.

I think I can park things quite quickly and see through foggy bits to get to clarity of, “This is okay.” And, and yeah, I mean, if that should come then it will come, I just, it’s then that always leads back to my children, that’s the bit that, that’s the biggest worry, isn’t it? It’s always about your children. Although my mum felt like that when she was dying, and I was 45. And she didn’t want to leave me because I was 45, [laughs] I mean she was still; you know I was still her child, her baby, and that was the bit. She wasn’t afraid of dying because she wanted to meet my dad again, and they both always talked about being with Theo, so that gives everybody, it’s almost like he gives the comfort of dying to everybody, but yeah, she didn’t want to leave us. It’s, I think that’s just in us all as in, as parents. Mm.

You’ve mentioned a few times about occasions that were really scary. How do you deal with that in terms of looking towards the future, how, is that something that you think about?

To be quite honest I sort of leave that to God, to Allah because I have very strong faith, I certainly have a lot of faith in my religion, and I just think to myself, “Well, Allah wanted me to have this disease, to be ill, whatever, and, so, you know, if he wants to take it, make me better he can do, but if he doesn’t then, you know, I’ll just muddle on the way I am doing for, until, you know, things either get worse or I die.”

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].

So, there’s one thing you may wish to include or not to include. But I was having a conversation, as you often do with friends. Especially my age they’ve got parents that, you know, are on their last legs or whatever, and you end up having that conversation about, “Oh, well, you know, if I was that ill, I’d rather go to Switzerland.”

And I was having that conversation a few weeks ago with a friend of mine who’s got a very ill father and we were chatting, and I said, “Well I haven’t really got to worry about that because if I was very ill, and I wanted to end it all I’d just have to stop taking my drugs.” And they looked at me with complete and utter shock and I said, “Yes, I’ve thought about it.” But it would be something I could do. Now I wouldn’t do it lightly, obviously. But if very later on in life I did want to do that I could. And I see that as an advantage. But I don’t know that it’s something that automatically crosses a lot of people’s minds [laughs].

It’s interesting that you say that because it, it was one of the things that I was going to ask you about but I just, I got the feeling you didn’t really want to go there.

No, no, it’s something I had thought about. And especially, I mean I haven’t got any dependents, I’ve got no kids, so that’s something very often later on in life, I’m not saying that you ask your kids to do something, but it’s a conversation you might have with them. And, you know it is a quite a recurrent theme I think in families, you know, when you have parents that are very ill or very bad Alzheimer’s or something like that, how you manage that. And I think I’m quite fortunate that I can, it’s something I can manage myself. If I wish to.