I see a rheumatologist here, locally, it’s about every four months or so. I have been to the respiratory specialist in [large mainland city] last year, and I had an appointment for last month, I think. So, I’ve got a phone appointment with them next week, but when I was seeing them last time, it’s a, it’s the respiratory clinic of a certain doctor, but it’s not necessarily that doctor I see, it’s another doctor and I don’t know if they’re, you know. It might be different ones I see.

But when I mentioned that all about the Churg-Strauss, you know, and that’s maybe why I had the chest infections, you know, maybe it’s a symptom, and he said, Oh, there’s no connection He said, There’s no connection between them I had, think I had said, There’s a connection with the, you know So anyway, he, they usually have a word with the specialist, so I think he had gone off to check on a couple of things and they were taking blood and stuff anyway, and he came back and he did say, Oh, yeah, there does seem to be a connection between the two so [laughs] I think it’s not commonly, you know, known, obviously, that, how connected they are, how very connected they are.

So, I’m, yeah. I would quite like to see a vasculitis specialist, you know, this is something that I don’t know if there’s many of them around or. I see a rheumatologist who sees a lot – most people she sees, obviously, or he/she sees, are going to be, have rheumatoid arthritis or so, and they might have, you know, specialised a bit in the vasculitis, I’m not sure, but it would be, I think, very, very useful for people like me who have a rare disease. And, you know, that you could talk to and they, you know, know all about your symptoms and your, your side-effects of medications and, you know, just to talk more, more, more information from them about the disease. Or even what’s happening in research and that kind of thing as well. That would be very useful.

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.

Aye, it’s funny, and I think it’s maybe more because I do see a respiratory specialist, you know, and I do feel that the vasculitis is my big, the big problem for me. And I do see a rheumatologist, but the appointments are usually fairly short, and you know, we don’t discuss, we don’t discuss my symptoms. It would be good to talk to somebody about my nerve problem. Should I be carrying on even though I have these, find it difficult? Should I be pushing myself or should I be resting myself more? These kinds of things, you know, I would like somebody to answer questions, but you don’t really get that.

Or is there other things that might help? I suppose that’s where maybe the OT did help, back before with that, you know, [inaudible] exercise. But the problem is still there with, with my arms. And occasionally, when I’m in bed, I have got a, you know, when my leg is still a bit tingly, I have got a – and I’ve had to, I’ve stretched my legs and kind of, you know, stretching, do a few stretches. Because my legs are a bit uncomfortable. And also, they are so cold, as well, this is the other problem I have. Especially in the winter, my legs are really cold. And my hands. If I go into the freezer, I really, I have to sometimes put some warm water in the sink and put my arms into the sink to warm them up.

I think the occupational therapists will, will – they do say, Oh, if there’s anything you know, If you want to talk to us again, get in touch but I think that what they will, you know, obviously say is, This is the exercises you can do to strengthen but I’m, I’m thinking from the Churg-Strauss side of it, really, from the other side of it. And yes, and also [sighs] how does, how can it affect long-term, you know? You know, mentally, or, I mean, I think it can affect your brain or, and it can affect your heart or your kidneys and various parts of your body, and just a talk about these things, you know.

But it’s just so peculiar, out of the blue. But actually, getting a name on it was, was good, you know? Because I realised by then, by the time I’d got to hospital, that I must have something pretty serious, right enough. And my daughter kept saying to me afterwards, she said, You were really ill, you really were ill. You didn’t realise you were, but you were really ill [Laughs]. She had her Kindle with her, and she was sitting beside the bed all night long the first night [laughs]. [Inaudible] hobbling about and the next day or two, she was coming and going all the time. You know, she was brilliant actually. And also, I think she was also asking lots of questions, you know. She was asking lots of questions. My other daughter had just had a baby two weeks, three, oh no, three weeks before that. That’s why we were away in July, because she had just had a baby and I went away to help her, and I ended up in [laughs] A&E overnight [laughs]. I remember hoovering the house for her, you know, she had a c-section, and I was hoovering and I was sweating. And, I don’t know, I felt so weak [laughs]. And I was, because she’d just had a baby and I thought, Oh, I’m here to help her You know.

So yes, my other, my daughter was saying to me, while that, although I’m doing a lot of walking and certain exercise – you know, I move around a lot – I don’t get the heart pumping, so maybe I should do a little more exercise where the heart is pumping. So, I’m going to try that a bit more, because I haven’t, you know.

What do you fancy trying?

[Laughs] I might do a little burst of running and then walking slowly [laughs]. I did that yesterday, and going uphill, I was saying to my husband, Oh, the fastest my heart is going here is one-o-seven, that’s no use because the daughter, who’s super fit, is saying, You have to be up to a hundred and twenty So, the last wee bit getting back to the car, I ran, and it went up to a hundred and forty-seven, so [laughs] maybe I’ll do a bit more of that.

Do you measure – I mean, do you measure things to do with your fitness? I mean, I was just thinking, when you were describing all these exercise sheets and the gardening and the out for an hour every day, I thought, gosh, that must take a huge amount of discipline.

[Sighs] I’m not very disciplined in one way. I’m not the kind of person who does the same thing at the same time every day, you know? Every day, and the same thing. I’ve got a Fitbit so that’s how I was checking my, my heart. But I quite enjoy doing these things. I think that’s the main thing, is that I enjoy doing them. So, I don’t feel that it’s difficult, you know? I like being outside.

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.

I will always have nerve damage to my arms and feet, I think. They did say to me that, when I got the nerve conduction tests, that it might heal completely, but I was surprised at how much damage there was in my arms and legs. At that, when I got these tests done, I think I had been on the steroids probably maybe a week or something, and I actually thought that my left leg was perfectly all right then, but they said, Oh, there’s damage to your left, you know, your left side and maybe it was masked a bit by the steroid, I’m not sure.

But it was quite a bit of damage, and they said it might, you know, with time, that it would completely heal, but that really, that not to expect it. I think what he was really saying is, don’t expect it [laughs] I think, that’s really what, and within, if it’s going to completely disappear, the damage, you know, this feeling, I think it would disappear, you know, within two years, so I think I’m probably going to have this, forevermore.

I don’t know, it, I, find that I can do most things anyway now. I can do nearly everything now, and I’ve got the feeling in my arms, and you know, the pain and the, the feeling and – but it doesn’t actually stop me doing things. So, it’s there, and I think I’ve got so used to it, it’s something I live with. And I think I’ll probably always have to live with it. it’s just yeah.

[Sighs] I’m unsure about the primary healthcare, like your GP service. Because obviously, with hindsight, I can look back. And the amount of visits that I had between 2011, I don’t know the numbers, until I got referred to the nephrology department and the renal department. There was a recurring theme there, you know? Tired all the time, achy joints, slight trace of protein. Headaches, fatigue, just – but very non-descript. So, on one hand, I can understand that the GPs couldn’t pinpoint anything, but on the other hand, that’s also, I now know, classic symptoms of vasculitis.

But I think for a practice our size, we’re quite a small village, and the way that they work out the ratios, the GP would probably only see one vasculitis case every 15 years. So. I can completely understand why that wasn’t their first go-to, but that’s why it’s so important for the work that you’re doing, that it now becomes out there. In the mainstream of what they’re thinking. Because had we caught it – possibly – earlier, then the roller coaster might not have gone on for so long, with all my medical issues.

Because at that point, which was April 2013, even renal were quietly confident that this was damage that could be reversed, that they could get the ANCA under control, and that things were, were looking a lot more positive. But sadly, it wasn’t to be. But then there’s the flipside of that that I’m – the GP might never have referred me to renal, and you could, I could just have been tottered along for the full time, until something catastrophic may have happened.

it’s probably about 25 years ago that I started just all of a sudden, I started getting very, very wheezy and I had never had any of these symptoms in the past, you know, before that. I got very, very wheezy. And it kind of passed and then I went to the doctor’s eventually and I was given inhalers. So, I started using inhalers. And if I took a chest infection it was quite bad sometimes, but in the meantime, if I go back further than that, I actually had, off and on, I had stomach problems, you know, from the age of 20, I suppose. And it was put down as a stomach ulcer. But there were stomach ulcers, that kind of problems in the family, so I don’t know whether that’s got any connection or not. But
I was getting these chest infections, you know, every so often. Not horrendously bad at that point, but anyway, then I got these awful bouts of very, very, very painful joints, and that’s going back about 20, 21 years ago, probably, or slightly more. But anyway, it was I’d have a pain in a joint, it might just be the joint of my thumb, or it could be my knee, my elbow, my wrist, and it would last for a few days, it would get bright red and be extremely painful and then it would just disappear, but it would be somewhere else. It was fleeting all over my body. And I would have it in my jaw here, or, and I was working at this time, and there would be times where I actually had great difficulty changing gears or, you know, I’d be trying to do it with my other hand.

My renal team are fabulous. I cannot praise them highly enough, and their personal support just goes beyond belief. You know, their dedication to you as a person is absolutely wonderful, just, you are, you are treated as the whole person. Their patient list must be huge. You know, when you arrive at clinic, there are 20-odd people, every day, in their clinics, but they have such a retention and such an interest in you all. They remembered the smallest details. You know. Oh, it can only be six wee- six months until your daughter’s wedding now, how are the preparations going along How was your trip to Bucharest They have that knowledge of you, as well as the scrutiny over your medical facts, and they are just so on the ball, they are wonderful. Absolutely wonderful. From everywhere, from your consultant, through the nurses, the auxiliaries, the receptionists, the domestics. They make the best toast in the world, they’re all great. they’re all fabulous.

Where does that come from, do you think?

For the renal team?

How is it that they manage to do that?

That’s a great question. What is that ethos that manages to do that for them all? You would say it was leadership, but then it’s down to individual personalities as well. So, I do believe that they do have good leadership. But they also have such a desire to care for you. They also must be happy in their work because you get that vibe from them. I’m not saying that they don’t have their moments, because I’ve seen them all have a little, you know, hmm at each other. But that’s never the feeling that you leave with. I always feel supported, and I always feel that they have a plan. It changes regularly, [laughs] but they always have a plan. We’re going to do this; this is the way it’s going to be it’s explained to you in whatever detail you want – I like detail, other people just maybe don’t want to know quite as much. But they do that, and they take the time, they explain it again to my husband when he comes in. When my daughters appear four or five hours later, they come back, and they explain it again. They include everybody.

It was hard going for them. I mean, I’m an only child so I think, I can’t imagine, they put all their, all their love into me, and for them to come and to visit and just, to lie in my hospital bed and to see the pain in their faces, is just awful, absolutely awful. Because I couldn’t see what they were seeing, you know? They could see me hooked up to all the machines and the oxygen and things, and I would be very sleepy so I would only have fleeting moments of actually being able to focus and see them. But what I could see just saddened my soul, you know? The, the pain I was putting them through was just, yeah. And then they were just devoted to my recovery. David was still working, the girls were still doing their things, my mum and dad are both retired, so they were there for me 24-7, constant care and attention. Watching my every move, I was scrutinised [smiles]. So, yeah. And friends, you know, and extended family. But my mum and dad, they were just immense.

There’s also the part that you don’t want to be defined by your medical conditions. I remember after one failed transplant, thinking, Oh, I can’t do that, I can’t go to the Co-op when everybody’s giving me the awww’ face You know, What a shame I thought, I went and got my hair dyed bright pink and I thought, That’ll give them something different to talk about when I go in [Laughs]. I’m like, now it’ll be, Oh, that poor lassie never got her transplant, look what she’s done to her hair [Laughs]. Just, it’s people’s perception of you. You are still you.

How do you explain it to other people?

I don’t. If anybody ever asks, I just say I’m fine and that is the stock answer to everybody. People – to give them their due – there’s a percentage of people who are interested and would like to know more. But mainly when people ask how you are, they, they don’t want details, you know, they’re quite happy with I’m fin and move it on. I’ve got close-close friends who’ll dig deeper than the What does, what does fine’ mean today you know? We have different acronyms for the F, the I, the N and the E, depending on [laughs] where we’re at. So yeah, but for the majority of people, I don’t, I don’t even try to. I think it would be too complex, too time-consuming, and it’s not something I really want to dwell on.

And I think David and I had decided by that point that careers weren’t high up on our list. If we could get by, if we could get by financially with, you know, part-time or supply or something, that would be fine. We were more concerned about living our lives rather than working the nine til five previously. So, I resigned. At that point. Asking to go on supply, to give me that option for a little bit of money coming in, every month. But I did that because my personal reason, because I felt it was unfair on my colleagues, really. And I didn’t have the, I didn’t have the energy or the desire to go back and fight [my employer] anymore, because we’d already been through all that with occupational health and applying for medical retirement and all those types of things.

Because I had lots – I have, I’ve got quite a few letters from various occupational health assessment people to say that I have two life-limiting conditions that will cause uncertainty in the future and going forward, but that’s not a good enough classification for early release of your pension. So, and having sort of fought that battle, taken advice from MPs, MSPs, union representatives. Again, David and I, we just made the decision that we’ll just walk away from that one, we can concentrate our energies on keeping fit, keeping well and enjoying life. With restricted finance. It was a decision that we made.

And you mentioned earlier about driving the minibus. Are you restricted for driving now, or is that okay?

No, I can, I mean, I still have my licence and so I’ve declared – well, I’ve not had to declare to DVLA because there, there’s not a box to be ticked on that, but I do limit it. I am the passenger unless everybody else has been to an event and I’m the only person – because I don’t drink, so I’m then the nominated driver, but it’s few and far between. And, and some days that could be absolutely grand, or even, I might think, Oh, I’ll nip to the shop and get the shopping or whatever, to do the supermarket. And I can drive there, I can push the trolley, and I’ll be halfway around the shop, and then trying to pick up the next carton of milk and it’s just, it’s a step too far, you know? By that point, the joints have gone or the fatigue’s set in, or the whatever. And then, then it’s an issue to, to continue with the shop and drive home, so my family have now got to the point where it’s, Just don’t bother, mum. it’s more hassle than it’s worth [laughs]. We’ll just do it Which is not pleasant because you want to be independent. But. it’s probably less of an intrusion in their lives to pop and get some shopping, than to say, for me to phone from the town and say, Can somebody come and get me

I think the only part that I’ve got which was my last thoughts that I’ve popped down there, was that you’re, you’re continually adapting to whatever the next day brings and planning and processing is, is probably the key to that, which is what makes things work. it’s one of the sorts of cogs in the wheel. The negative of that is that sometimes your brain can’t switch off because you know that you have to plan things really quite specifically, but also knowing that whatever plan you’ve made, something’s going to crash into it and that plan’s going to go haywire, so you’re going to have to go plan B and then C and then D, and then just keep working your way through? So even though you’ve planned it so well in your head to prepare for the event, you have to also have to have flexibility to know that it might not well go to plan, you know, so.

So, you’re constantly adapting, all the time, which, depending on your levels of fatigue, can sometimes just seem more effort than it’s worth. You think, Hmm. Do I really want to go to my niece’s birthday barbeque because there’s have to be this whole chain of events to get to that. But you really want to go to your niece’s barbeque, because she’s your niece and you love her to bits. But what will come along in between you starting your planning, your preparation – which could be the week before – and the actual day of the event. So, you can have that conflict in your brain sometimes. To get to that point.

We got to talking about transplants and things because the vasculitis stayed in remission, which was fabulous. So that meant that I was then a candidate for a transplant, and they do this paired pooling for donations, that’s couples can go forward. You don’t have to be a couple; could be brother, sister – friends, whatever, but you go into a database and if a couple are looking for a match with somebody else, so the way ours worked was, David volunteered to donate a kidney to somebody, and there would be somebody somewhere else in the UK that would donate to me. So, we signed up for that. Every three months they would run the database to see if you got a match. Nothing was happening. So, we did that for over a year, but we never got a match, so. But we stayed on the database.

But by that point, my mum decided that she would donate a kidney to me. She’d previously ruled herself out, she thought she was too old, but she was fit and healthy, passed all the tests, all the screening, because there’s, it’s very intrusive to make sure that you’re fit enough to donate a kidney. So, we went through, did all that, she was a perfect match, which is not always the case with your parents, but she was, so that was fab. So, we got the go-ahead for a transplant. Yeah.

It was just, like, the excitement levels, you know, this is going to be good. Obviously, there were risks, but, okay, we’ll go for it. So we went to the hospital, mum and I, they took her down for surgery and when they tried to remove the kidney, they found a tumour, a gland? On her adrenal, adrenal gland, so it was too risky to remove her kidney, so she had to come back up to ward and the transplant was, was cancelled. We were all devastated, obviously, and the focus was then on mum. Did she have a health issue? What, what had they discovered? So that all went under investigation, but she’s grand, [smiles] she’s good. But it took a wee while to suss all that out.

The consultants then spoke to me about possibly a deceased donor would be a good option, considering where we’d got to, so one night we got a phone call at three or four in the morning to say that there was a kidney. We went through, we waited, they decided after looking at the kidney a bit closer that they thought there possibly could be a cancer contamination, so they didn’t want to, to give me that one. Again, we’re devastated and come home.

A month later, we get another phone call, we go back to hospital, this one’s looking fabulous. Yeah, there’s been two kidneys, the surgeon’s already removed one to a patient in another room, it’s working perfectly, You’ll be next, go down in two hours So, I go down to surgery, go in to get your, you know, put to sleep with the anaesthetic, and they decide that there is actually a problem with that kidney, so. It was cancelled at the very last second. We’re back up to the ward, home again, more devastation. The emotions are just everywhere for everyone.

We then get back to – well, a month later, they do the paired pooling match, David comes home from work, and we’re all sitting around the dinner table, and he announces that he’s had a phone call from the transplant coordinator to say that they have found us a match. At which point I am furious. I just do not have the energy to go through that again, which is not the reaction that [laughs], that I thought I would have. But. But we went. We did it. David donated his kidney. It went off in an ambulance down the M6 somewhere, mine was on route to me, and that was the 22nd, 21stof February 2017. And I’m doing just grand. [smiles and nods]

So that was – I’ll say that was the start of it. But the symptoms were so vague that it was, it’s difficult to pinpoint. You were tired, which was fair enough. The joints were very achy, very sore. But I thought, Well, maybe, you know, I’ve turned 40, maybe, maybe what happens when you get older [Laughs]. You get a bit slower; you get a bit achy, and things weren’t, you know, coming as naturally as before you would think, I used to cycle to work and I noticed that my time was getting slower and slower. You were thinking, Hmm, that’s not quite you know, but you did a day’s work, and you came home. And you were so tired, you just thought, [shakes head] och, dinner and bed, I’ll be better by the weekend.

And because of Early Years and school terms, it’s never too long to the next holiday? So, you thought, Get to the end of the term, have a break and I’ll go back, and I’ll feel more like myself but it didn’t, it just kept on accumulating.

Crustiness around the nose, that was one of the signs which I now know, and that went on for ages, it was just like, you just had this constant nasal drip and redness and soreness. I have an ear irritation, which I can only describe as a hot poker goes in and out your ear. it’s most annoying. And then a sensation down your jaw into your gums and your teeth.

But at that stage, that’s probably all the tiny little bits and pieces that, that I was trying to explain to the GPs.

And I think for doctors, on the whole, patients maybe, doctors think patients overplay their symptoms? But patients who have got a chronic thing that’s come on slowly actually underplay their symptoms because they’ve learnt to live with them?

So, you adjust your life, you know, over the period when I was ill, first of all I got somebody to clean the house. I gave up doing things, I cut my hours at work twice and then I gave up the highly pressured job to do one where I didn’t have to think, because I just didn’t want the pressure of it anymore. You let things go, you just don’t do things, you never go out at night, or do anything like that because you just haven’t got the energy. But then when the doctor says, How are you you sit there and go, Well, I’m all right because maybe that day you don’t feel too bad? Or just because you’ve just got used to living that way and you think, you’ve forgotten what living normally is.

I think that that would be the thing I would say to doctors. don’t think your patient is making it up or exaggerating it; they’re most likely not telling you the whole of it. They mean to, but they’ve learnt to live with it and therefore they don’t. they’re not able to explain it.

And I mean, obviously, that’s a problem for doctors because if you say to them, Oh, well, it comes and goes and I’m all right between you know? During the periods they were looking to see what I’d got, they thought maybe I’d got gout and then they thought a periodic fever, there are these conditions called Mediterranean fevers? Obviously, it was neither of those. The worst misdiagnosis I had was once when I had a very bad attack, it was right at the beginning when I didn’t really know that it was something that was repeating itself and being unable to walk and having to be carried to the car, I got taken to the out-hours doctor who diagnosed me with a chest infection [laughs]. He said he could hear a rub on the lungs, which was probably the vasculitis. But. You don’t get many people with a chest infection who go from okay to not being able to walk over the space of a couple of hours.

Yeah. I think [sighs] the one, the one GP visit that sticks in my head was when I developed a vasculitis rash, which was really quite extreme. That was in the October, I wasn’t diagnosed until the April. And this rash was like nothing I’ve never, ever experienced, from the tips of my toes up to about my midriff, and so fiery, so hot, so raised. And try as you might, you couldn’t not scratch it, so I had, you know, the scratch marks everywhere. And the GP that I saw that day thought, possibly, allergic to the washing machine powder, you know? And if it doesn’t settle, come, come back and see me Which, which I obviously accepted, because I came away and waited a week to see if it, if it did settle. It took longer than the week but I mean, it did settle eventually, but I just wonder with that flare-up was the first extreme flare, that there was anything, everything else was so vague, whereas the rash I thought, Hmm again, with hindsight, now I know exactly what it looks like and if only the GP knew exactly what it looked like, would that six months have made a huge difference? Would that have been a point where my kidneys were saveable? it’s something that we’ll never know, so in that respect, there’s no point in dwelling on it because it’s been, and it’s gone. But again, that’s why raising the awareness is so important.

And don’t be frightened of the drugs, the drugs that they give you are strong drugs and obviously not everybody will be suited by them, but if they were, they’re transformative.

I had, like, feeling sick at first with mine, which was solved by having more for breakfast, and it settled down, and it’s made an enormous difference to what I can do. I could [sighs], I could do less than 10 per cent of what I can do now. I mean, I’m limited now because of this coronavirus lockdown, of course, I have to shield. But if it wasn’t for that, I could go out, I could do a couple of things in the day. Before, I would only do one thing, one day, and I might not do anything then for the next three.

You know, I would, I would have one – and that might be a very small job as well, I mean, the job might be: dust your living room. And that would be it. I would start to make meals and get too tired halfway through to finish them? So, I’d say Oh I’m going to do roast dinne and then we’d end up with a meat sandwich. Because I’d have to change part way through. But now I could, you know, I can do what I want. it’s so much better. it’s well worth getting it sorted if you can.

And it’s been good for me, I’m glad we moved.

I was worried about my doctors, [laughs] but I was able to keep the rheumatologist, so that’s been, I wouldn’t have wanted to, I couldn’t, I said to my husband when we moved, If I can’t keep this rheumatologist, I’ll have to find one, even if I have to go privately. I can’t go back to square one, I can’t start again with one that doesn’t listen [Laughs]. I wasn’t bothered about the liver doctor, I thought Well that’s fairly clear-cut, they know what that is, that’s straightforward But rheumatologists, I think it’s so much more complicated. And you get differences of opinions between them. So.

But I was able to keep the one I have. So now I travel, and I stay overnight in a hotel. Takes me four hours to get there, to stay overnight in a hotel, four hours to come back. And I’d travel further to keep this particular rheumatologist [laughs] because once you’ve found one you trust, it just makes so much difference to your life. Once you’ve found the right one.

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.

Oh, yeah. It was hard, it was. It was [sighs]. At the time, I was feeling [sighs] pretty ill and I wasn’t enjoying the job, so it was easy to walk away from it because I wasn’t enjoying it either. I don’t know how much of that was because I wasn’t really that well or how much of it was just because I just didn’t enjoy that job, and I think a lot of people around that sort of age do make a change because the job that was ideal for you at 25 is not necessarily the job that’s ideal for you at 50.

And I just wanted to do something that was easier as well, but whether that was borne of everything else being such a struggle? Maybe it was. I was still able to do the job but the cost to me was too high. I wasn’t able to do anything else; it was the job and that was it. By that stage, you know, to do the job, to keep doing it full-time, I had a gardener to do my garden, a cleaner to do my cleaning, I was buying ready meals all the time. And not enjoying it and not enjoying my time off because I was so exhausted from having been there. I just thought this is, it’s like being on a treadmill, I don’t want to do this anymore.

And so, I went to work in just a food shop, because I thought, Well I’ll view that as being paid to exercise I get the exercise working in the food shop, I won’t get any of the stress. And I quite enjoyed that. I do think, though, if I hadn’t ever been ill, I’d probably still be working. As a pharmacist. In fact, I’m pretty sure I would be. Because not many people retire at my age from that profession.

So, but it doesn’t upset me really, because I just don’t think there was any other, there was no, it was the best decision for me. I made it, nobody, nobody said to me, Perhaps you’d be better you know, because I was still able to do it perfectly well. I knew that I was going to be better – and I’d always said that I wasn’t going to work until I was very old, I was going to retire and I was going to enjoy it – this was before I was even ill – because my father died at 48 and my mother at 68, so I didn’t see a great deal of point in [laughs] working until I was 67 to have no retirement at all. And having had that experience, I was always very determined that I wouldn’t, wouldn’t work. And I never would probably would have worked beyond 60 anyway.

And I wouldn’t say I miss it. I miss the intellectual side of it more, but I get around that by just reading.

And I think there’s more important things in life than money, I suppose, provided you’ve got enough, and you don’t need more than that. But I was quite lucky, I suppose, when it happened. It must be quite a blow if you – because a lot of patients with vasculitis are younger, much younger than me, and it must, if you get that sort of felling you down in the middle or the beginning of your career and you lose all your career, that must be, that must be terrible.

Because they, you know, are probably not in a position where they can say, Right, enough’s enough, I’ve had enough of this And it’s going to condemn them to probably living in poverty, most likely. And I think, I think that’s a shame. Because I don’t think that – it’s political, really, but I don’t think that the benefits system understands these sorts of illnesses. I’ve never tried to apply for benefits because I read the questionnaires and think, Well, I can make my dinner now, and I can do this and I can do that but. Am I ill? Has it affected my life? Most definitely. Fortunately, I made enough pension contributions and I’ve got enough years National Insurance that I will get a pension, but if you’re 20-odd then it’s, it must be terrible. And I suppose it’s that very big decision at that sort of age, just what do you do?

So, I think they should go by: how serious is the illness? What does the doctor say about the illness? Not, Can you cook your dinner Because in fact, you might think you can. I look back on the couple of years when I was really ill and realise that actually, probably, I was ill enough at that point to have, but I didn’t, I didn’t do it. I didn’t. Because you don’t really, it’s only when I look back, I think, Well, no, I couldn’t cook a dinner, really, because I’d start a dinner and then I’d not finish it Or and sometimes I couldn’t have walked 200 metres, now, or I could only have done it in pain. But because it’s a fluctuating condition and you’re not always the same, it’s not quite the same. it’s not, you can’t definitively say, I can’t do this, I can’t do that because some days you might be able to. Now I’m lucky that that doesn’t, doesn’t matter to me, but I think it’s very unfair for younger people.

it’s no good making cast-iron plans, really, you’ve got to be able to, prepared to cancel at the last minute [laughs] if, you know, if you’ve planned to go, I don’t know, out for a meal, if I’ve planned to go out for a meal and it’s a bad day and I don’t think I’m going to enjoy it, then I’ll cancel it and go another day.

And I think that’s where it’s hard on your family. Because they probably feel fine, [laughs] they were probably looking forward to going. And sometimes they’ll go on their own to a thing if I can’t go, which I don’t mind. it’s better that than struggling to it.

You know, during the time I was pretty unwell before I was diagnosed, one of my daughters got married and I was so worried about what I would be like if I’d had a bad day, [laughs] but I was lucky, I had a good day. But that can be frustrating because there must be people who have a bad day when it was a really important day to them, and that’s never happened to me, but it must be hard when it does.

But I can’t fault them at the end, when it was bad, the efforts they made to find out what it was, in the last sort of few months before I got diagnosed, once this person had seen the sores on my hand, they referred me to dermatology to look at the rashes, they referred me to ear, nose and throat to biopsy my nose, they referred me to ophthalmology to look at my red eye, I had a CT scan. And then I had to go to the lymphoma doctors because I had enlarged lymph nodes, so they had to rule out lymphoma. So, you can see by the time I actually got diagnosed, I was quite ill. Fortunately, I didn’t have lymphoma, they thought it was all connected to the problem. So, they really did, once they got going, they really did work hard to get an answer.

And then it was a couple of years later in October 2017? I had my first of what I would call an attack. So, my symptoms would flare up very suddenly from a baseline of being somewhat in pain and uncomfortable, over a matter of hours, always in the evening, to go from like I’m all right, sat here like this, to not being able to move, to my husband and my son having to carry me upstairs because I just couldn’t move and being in absolute agony.

And then it would go off over the next 48 hours or so, and then I’d be back to where I was again. And initially that happened fairly wide-spaced apart, so there was one attack in October, there was one I remember very particularly in the December of that year because it was the day before my birthday [laughs]. And I sat there, I had a friend for tea, and I thought, I’m not going to be able to get up and let her out the door because over the evening, while I’d been sat with her, it had just kicked off again.

And then I thought, Right, I’m going to go back to rheumatology [Laughs]. I had a further attack in the Easter that was very bad, and it was starting to be more frequent. So, I got, went in touch with my GP who was very good. She knew me very well and she always listened. Because she’d known me for years, she knew that I didn’t go in just for nothing and she could see by then that there was something wrong. So, she sent me back.

So, I didn’t get to see them for six months or so? It wasn’t obviously – because they’d seen me twice already, I think, [laughs] and it wasn’t considered an urgent issue. And then I saw a very nice rheumatologist and she took all the details and what I was saying about how I felt. And, by this stage, I’d turned into a bit of a detective, and I was writing down all my symptoms and taking photographs of things, so I would get rashes, whole fingers would just swell up out of nowhere, one swollen finger. Or a bright red eye. And I must admit I was quite glad of those things because it was something I could see.

Because when something comes and goes like that and you’re sort of completely incapacitated and then the next day you’re just in pain but you’re all right, it makes you feel like you’re going a bit mad.