Systemic Vasculitis

And then after that, I continued to have, my breathing was better, but I was starting to get a loss of my voice. What that meant was that on some days I would have a voice, on other days I would have no voice, I would often have to mouth or lipread and my wife would tend to have to speak for me. And at some points, in January, I ended up really just being mute and not able to speak at all.

And I was, just after that point, my daughter was, was born and during that whole period in hospital and everything around that, I couldn’t speak. And my wife had to speak for me, even through all those points, or I had to try to gesture.

And this was a, kind of an effect of this subglottic stenosis, and stopping any air kind of going above the tracheostomy.

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?”

Physical things like motorcycling, bowling, swimming, I was quite a, an active person, physically active, and it’s pretty much, it’s pretty much put a stop to all of those things. I did try, two years ago, in fact, to maybe see if I could do some of these things again, and I even went to the point of buying another motorcycle. And, because I wanted to prove a point to myself after 40-odd years of riding, and I think I was right to do it because I took it out one day and I brought it back, and I didn’t ride it again. Because I knew that when I put it in the garage, I was doing the wrong thing.

So that kind of thing is painful, the one thing that is now restricted which is very painful, is the fact that I can’t travel as much as I like to. My wife and I, for many years, have enjoyed travel.

As I was saying, we were in China for three weeks the year that I got vasculitis. And we’ve been to quite a few other places and we like to travel and see the rest of the world. Now, that, in a lot of cases, means long-distance, and I’m advised now that that’s maybe not such a good idea. For various reasons. Where the vasculitis is concerned, if I lose my medications or whatever, they’re going to be difficult to get hold of in maybe foreign countries. And if I had chest problems, it might be difficult to get that treated if I’m in far-off countries. So, there’s some places that I would have liked to have gone to that I can’t now, so.

Ibiza was like the first time I went away on my own, but not, not my own, with a friend, but the first holiday I sort of went on since, from being diagnosed and it was, I guess a nerve-racking experience because obviously when you travel you’ve got to factor in, “Well where are the hospitals in relation to where I’m staying?” Obviously, the travel insurance, there’s a lot of things to sort of factor in, “Is, was the hotel, like is it on a hill, what’s the immediate surroundings like?” You know there’s a lot of things that I need to consider before I can agree to sort of go, go somewhere. We decided that we wanted to go on holiday somewhere and it took a long time to sort to settle and agree on a place to go.

I went away to Australia, for a couple of weeks, which was I guess the big test, and that you know, that did require a lot of planning, staying in places where, that was accessible. I stayed in hostels, I tried to make it as cheap as possible. I requested, because obviously you’ve to share in hostels, I requested bottom bunks. Most places did do that.

One place didn’t and the top bunk was the only one available and that was incredibly difficult, and I hurt myself trying to get up and down that, but the following day one of the people on the bottom bunks left so I took her bunk as soon as soon as I could, just threw everything off the top of mine [laughs] and just so I could, because otherwise I don’t know how I would have sort of managed that.

And again, in terms of Australia, where I went was quite flat? I went to Perth, that’s relatively easy to navigate, and because I was on my own, I could take my time. I wasn’t constrained to anyone else’s schedules, I didn’t have to do things that I didn’t want to do, it was all at my own pace and I think that’s what really helped me enjoy it a bit more because, after a couple of days with my friend in Ibiza I think we wanted to murder each other, because it was how we sort of are.

So yeah, I think one of the things I found difficult was I’d requested sort of, assistance with the airlines. So, I flew with the same airline throughout the whole trip so, because I went to different sort of cities and at Heathrow, you know, when I first left it was great, there was no issues. When I got to Perth, I, it was just a case of, that judgement of “Oh, right,” like, they look at you, see you’re young and be like, “Oh, why do you need help?”

But it’s the effects it has on your lifestyle, the field of vision is reduced, I have parallax. I was incredibly lucky – well, I say lucky because I know I’ve been lucky - because I passed the independent test for driving. And I, I know of other people – in a club I’m in - the same age who have been told you can no longer drive. Anyway, they were a long time making the assessment, it was a board of doctors, and they said, “Yes, you can drive. You must notify us if there’s any impairment to your remaining vision and you must have a test every year.”

And the optician does the test now and the last one was 20-20 vision in my remaining, my remaining vision. I do have to be careful because the field of, of vision is reduced, I have to move my head around, use mirrors, don’t drive as fast, and live with it, you know?

Some people often say, “Why do you drive so slowly?” If I was out on hill walks and my turn to drive, they’d say, “Why didn’t you overtake that car? Why did you stay behind that lorry?” I’d say simply, “I’ve only got single vision and it’s, I don’t, I’m not so confident.” Age aside, aside, you know?

Well, I couldn’t drive for two years because my feet couldn’t feel the pedals. I had no sensation in my feet so I couldn’t drive, that was another ‘trapped’ [laughs], I couldn’t get out. And then when I started to feel a bit better, I have some more feeling in my feet now even though they’re numb - it’s hard to describe - I have feeling in them. So, then I started to go out for little drives to see how I would manage, and I’m fine now driving, absolutely fine. So, I’ve no – no, I don’t need any adjustment, but I did buy, because of my hands go numb and sometimes go into a bit of a spasm, I did buy an automatic a couple of months ago. So, I thought, you know, long-term and also because my left foot is my worst foot. My left foot and my left hand are the two, you know, worst parts, so it means I don’t need my left hand for the gearstick, and I don’t need my left foot. So that’s why I decided to buy an automatic, so, you know, it makes life a lot easier.

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 did do, was it six-week or eight-week cardiac rehab course? Now, my consultant had said, “Look, this is more for people that are maybe a wee bit older, that have had, you know, bypass surgery. But, you know, if you think it’s going to help you, by all means do it.” Now I did it and I was obviously one of the youngest ones there, [laughs]. The next person was maybe in his… I was sort of in my 30s, he was maybe in his early 40s and then everybody else was sort of 60, 70-plus.

But it was, it was good because I was afraid of exercising. Because I didn’t know my limit. So, they had physios there, they had occupational therapists there to help you, they done like a wee mini fitness circuit and they let you, monitor, monitored your heart rate and took your blood pressure before and after, and they made sure that you didn’t go past your limit. And so, you could almost… it allowed you to gauge how much you could do, and, and know your limit. So that made, that made things an awful lot easier because you weren’t afraid to go out for a walk anymore, you weren’t afraid to, you know, go, go to the gym and maybe do the, the treadmill or the, I love the, I loved the cross-trainer whenever I was at the gym, so there were all of those.

And then after your six-to-eight-week cardiac rehab, then there was a scheme called the Fit and Well Scheme that you could go and do. So, there was about six or seven of us from… because we all formed, you know, a friendship. And then we went, and we done the Fit and Well Scheme and then it kind of ended and then you were kind of left, “Oh dear, what do I do now? I’m on my own.” So, I maybe… then, at that point I think I was going back to work, so I didn’t really probably follow it up and continue, you know, as, as much as I probably should have.

But it sounds like it gave you what you needed at the time.

It gave me confidence, yeah. Yeah, definitely. And it also, you know, you had talks from dietitians and pharmacists and, you know, you picked up a lot of information from the cardiac rehab. And I have known a few people with cardiac – that have had cardiac surgery since and I’ve recommended that they go to it. So yeah.

Yes, yes, I play the oboe. And that was certainly something that was very badly affected because with the oboe, it’s a double reed instrument so you have a, a small reed and you have to sort of put your lips over your teeth to play it. Now, if you’ve got ulcers on the inside of your lips, as I often did, couldn’t do it. Or on the end of your tongue because you know, sometimes you’d have to – if you had to tongue a note, you had to sort of put your tongue right on the, and there were, I couldn’t, I physically couldn’t do it because it was too painful.

So yes, that was, that was very badly affected. Although I have to say, really between, I didn’t really – when I was working in the police, I didn’t play a lot anyway, but then when we came up here, which was in 1998, after George died, our son, my husband ran off and bought me an oboe because he thought it would be good for me to learn again, which was fantastic. And it was just what I needed. But and that was in 1999, so it was another 10, 12 years before I got the diagnosis – is that right? Yes. I’m very bad at maths, 1999 – 2012, anyway, a lot of years. And I did really struggle, you know, I was having lessons because I’d forgotten most of how to play, [laughs] and I, quite often I had to cancel my lessons because I physically couldn’t blow the instrument, so yes, it did affect that quite badly. Fortunately, touch wood, it’s, it’s again, it’s not an issue now and I can pick it up and play it any day of the week, which is wonderful. Because I really do enjoy it.