Systemic Vasculitis

Yes, I can now get out of the bath. I have to get on my knees first, and then I can get, I can pull, pull my legs over. So that was a big thing to do because I couldn’t do it. Yeah. That’s [inaudible] thing to do.

And have you got stairs and things at your flat?

Yes. Four flights of stairs [laughs]. They’re fine, fine, absolutely fine.

So, when you said you had ‘rehab’, you might not remember, I don’t know, but do you remember what the rehab involved, did it, was it physiotherapy or-

Yes. At the gym like swinging my legs and stuff and standing on tiptoes and that and I used to go to the therapy kitchen and cook breakfast and some [inaudible]. So, I could cook a meal when I came home. They were very good.

Sorry, did you say that somebody came with you when, to do a home visit?

No. But apparently they don’t come that far. So [my partner] had to take some photographs. And they gave me a wheelchair which I didn’t need. At all.

Some people have said that actually getting a wheelchair changed their lives because they were able to do things that they couldn’t do before.

Yes.

But you haven’t needed…

No. I sent it back after a few weeks. I think they were amazed at the progress I made because I didn’t walk on my own until the 21st of December when I went to the bathroom with nurses holding both my hands. By the 7th of January, I managed to walk to the meeting to decide when I was coming home.

So with the speech and the swallowing, did you at any point see a speech therapist?

Yes, I did. Well, when it first happened, obviously, I was in the hospital. When I went away, they actually did loads of tests and I actually had to get the, loads of, my meals had to be, what was it called, like liquidised, basically, was, there’s a proper name for it again, the grade five or whatever in the hospital. Again, that department was actually, so they actually tailored it to myself and you can imagine the size of hospital, and they would come and say, “What would you like?” And anything they would basically just liquidise it. But for a while, even water wasn’t going down. But obviously as things improved, as the medication if you like probably kicked in, that went in, because I had all the kind of tests, kind of scans to see, so even water wouldn’t go down so everything was getting fed through a, I believe it’s an NG tube, I think it was called. So that was the stage, but again, as I got out of hospital, I was onto kind of liquidised food and they were happy for me to, and they gave me a plan when I went away, the liquidised food, and then that kind of led me on to obviously the speech side of things.

It was quite croaky because they were saying it was something to do with the vocal cords or whatever. And I did, I was, I was part of their, I was under their – to go and see them as well. But that just naturally, that was probably one of the first things that came back, was the speech. So. They did refer me to there but as it came back, by the time the appointment came, maybe, say maybe four, five months after, like, initial diagnosis, there was good signs of improvement and it just kind of came back as good as it was. So, I haven’t had any more follow ups to that just because I haven’t had any more sign of symptoms of that. But they did, they put me on to them, but it’s kind of, that’s one of the best things that’s came back, to be honest, my voice. Probably much to my wife’s disgust, but you know, that’s [smiles].

They wanted me to go to a gym. I tried to get in at a gym, the gyms, every gym I knew, turned me down. Even though I’ve got specialists saying, “He should be fine, don’t push him, he should be fine, just do light workout.” Me GP, “Light workout.” I went to a gym very close to me and I spoke to one of the instructors and I’ve showed her all the letters from the GP, me specialists and what me doctor thought. Well, I told her what me doctor thought; I didn’t have a letter from me doctor. So, on the same day they rang me back and said, “We don’t want you. We don’t want to take the risk.” Okay, that’s fair enough, you know, but what, what am I supposed to do?

But that afternoon I spoke to me doctor, he rang me up just on the off chance to tell me something about me blood tests. Now my bloods have to be obviously lower than everybody else’s because me immune, me white cell count has to be less, so he, if there’s anything comes up, he rings. So, he rang me, just told me what was going on with me bloods, and I then, I just basically said to him, “This gym doesn’t want me.” And he said, “I’ll ring them.” And you’re thinking, “This is a doctor going sort of above and beyond what he should be.” So, he did and got me in believe it or not, [laughs], it sounds strange, but he got me in.

So, when you got the route to your psychiatry referral, did that come through your GP or the vasculitis clinic or something else?

That came, well, initially from my GP because I went to see her and said that I was having a bad time. And since she said that at the GP practice here, they have a lady who comes in once a week, can’t remember her name now. And she’s specifically there to talk about people’s psychological problems. And, I mean, it was very fortunate in that I, so I went to start, start to see this lady and, after a couple of sessions, I felt quite comfortable about talking to her. Because I felt a little bit nervous, originally. And I saw her on, ooh, I was only supposed to see her once a week for 12 weeks, but I think I saw her once a week for about six months.

And I, at that point in time, I was going through a very, very dark period of, well, most of my thoughts were suicidal. So, I was going through a very dark period, and she took me, she walked me through this up to a, up to a point, and then she, you know, after those meetings, she said, “Look, I think you really need to be speaking to somebody else now.” And she spoke to my doctor, my doctor referred me to [the psychiatric hospital]. And I went to see a, a psychiatrist there, discussed that with them. I was, I have to take medication for it, I take sertraline. I don’t know what it does, but [laughs] I’ll take it.

And, up to a point, my suicidal problems, or tendencies, which were very scary once upon a time, are pretty much gone, to be frank. And the talking and the consultations helped me through a few issues that I had, and I came to terms with those. And that pretty much, I wouldn’t say put a lid on it, it manoeuvred the worst out of my head, I think, and I knew how to come to terms with some of these things, and how to see them when they presented themselves to me. How to deal with them.

[Laughs] and almost to the point where, almost to the point where I was being a little more accepting of the fact that I couldn’t remember what had happened to me in hospital. But that’s [laughs], as my psychiatrist says, that’s the one big obstacle that they don’t think they can ever get out of my head. It’s there, it’s too deeply rooted, because it’s in me, personally. It’s a personality trait, if that’s the way you want to put it, rather than something that very often happens with people with this kind of problem, you know, psychiatric problems or whatever. It’s down to me as an individual, how I think about it.

So, it’s, otherwise, yeah, I’m glad I went to see somebody. Because I wouldn’t be here, sitting here talking to you Avril if I hadn’t, it’s as simple as that. And it wasn’t a good time but, yeah, again, I was helped. I was helped an awful lot. Very nice people.

Yeah, I got access to the counselling because I’m a carer. I was a carer for my brother and mother, what you call a double carer, so I was attached to [a carers’] support group, and I got very quick access to counselling from there. So, I would see them every few weeks, to talk about and come to terms with it basically, and I had to come to terms that I had to look after myself and look after myself especially with this disease because caring probably, obviously came first in my life and I had to start looking after myself otherwise I wouldn’t be around to help anyone anymore. So, yeah, I had to go through about two years of counselling to come to terms with my disease.

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.

So, it kind of affects your outlook there, what you can do just now, and so in the future you hope that you will get, it’s the stamina is the main thing actually that’s, I feel I’m missing.

And I’m assuming, I might be wrong, but I’m assuming there’s not at any point been anything through the NHS that has been like a programme to think about things like stamina, there’s not, you’ve not heard of anything or been referred to anything like that?

No, I haven’t. No, the, the only involvement with other NHS services has been physiotherapy, if, I had a kind of frozen shoulder at one point and just before the first COVID lockdown, I was getting some help with something to do with my legs. I can’t remember which specific thing, because actually I was the very last appointment the physio was seeing before he’d been banned, the clinic was closed down and he was being reassigned to intensive care or something.

But no, I haven’t had anything on the kind of, health side, mental health or what, I don’t know, occupational type things. I haven’t felt any great need for it. Yeah, so actually, yeah, I don’t have a problem that I haven’t.

So, if, even if it had been offered it’s not necessarily something that you, that you’ve felt is a gap?

No, no, I don’t think of it as a gap.

Definitely, because obviously I was put in touch with the audiologist, up at [nearest general hospital] and, I remember at the time she says, “We can do something with your right ear, but your other ear,” this is the one that was getting a grommet fitted.

So initially I had one hearing aid in my right ear. It was amazing because you’re in this soundproofed booth and she fits the hearing aid in, and bear in mind that for the previous three or four months my hearing was deteriorated, and honest to god I couldn’t hear any, somebody sitting next to me, I couldn’t hear them speaking, and you live in this wee world of your own, and the day that she says, “Right, we’ll just fit this in and I’ll switch,” you know, she’s saying this, you know, I could bare, hardly hear what she was saying, and she switched it on and I couldn’t believe it, that all of a sudden I could hear again. It was a fantastic feeling, it was a better feeling than when the doctor said, “You’re discharged from the hospital,” because all of a sudden, I could communicate again. I felt a real person.

And I can remember, my wife and I went from there up to the local shops, the shopping centre, and I went in, and I had to come back out again because it was too noisy, and I’d never experienced noise for months and months. And what made it better was a couple of months later, as the effects of the grommet in the other ear took effect they fitted another hearing aid, which was fantastic, because when you’ve only got one hearing aid, your hearing goes into one ear, so if someone, you end up turning round trying to see who’s speaking because you’re no getting it in stereo, and when you get the second hearing aid fitted all of a sudden you can hear things properly.

And the nicest things was, when I came home and I could hear the birds whistling. That, to me, that just made it for me, sitting outside and hearing the birds whistling. And just a wee simple thing. Whereas now I’ve got the two hearing aids and there’s, they fluctuate, the thing with vasculitis is, it doesn’t stop at a level.

I’m a regular visitor to the audiologists who have been fantastic with me in adjusting them to suit the condition, because believe it or not I had a spell a couple of years back where I didn’t need them. My hearing improved so much that I didn’t need them. Of course, they do give you a slight electronic sound to them, very slight, so it’s not a natural sound, so to be able to go back out again, without them was fantastic. But then a few months later my hearing started to deteriorate again so to me I just put them back in again.

As long as I can hear I’m happy, you know, it’s, you know, it wouldn’t matter if it was one of these big bell horns, I would still wear it if it made me capable of hearing, and it’s a small price to pay to be able to communicate with people.

Do you feel – you’ve described a lot of things, how your left eye changed and the things that you had to do to adapt. Did you have any support with that at all, or any information to help you do that?

Yes, I had one chap from the clinic at our local hospital - which is yours as well, presumably - who had this, he was retired and he had this job, nice job he had, of checking up with patients and checking, “Well, are you still keeping active? What are you doing? Have you had to give up anything?” And I said - he phoned me - and I said, “Yes, I’ve had to give up my golf because of the parallax and the depth of vision. I can’t just swing the club properly and I’m not sure whether it’s doing my eye any good.” So, he said, “Leave it with me, I’ll check up with the specialist.”

So he went, he had a word with one of the consultants and the consultant said, “Keep up with the golf, keep persevering, we have encountered people with single vision who still actually do play golf. Your eye does adjust.” But I did try, but at the time I was doing other things, hillwalking and bowling, so I don’t, and so I thought, “Somewhere I’ve got to draw the line,” so I gave up the golf. But I’ve heard since, one or two people say, “Ah yes, so and so plays golf, he’s single vision,” but it can’t be easy. It’s just this parallax, it gets to you after a while. And maybe if you persevere, it can improve, but I didn’t really follow it up any further. But this, this chap did help, he did at least follow it through. In fact, I got more help from him than anybody else in the eye clinic.

I did have a bit of distortion I’d forgotten about, and I phoned down to the hospital and spoke to the consultant. And she says, “I want to see you –” it was I think a Friday, this was – “Monday morning at nine o’clock.” And she says, “If you could get the optician to have a quick look at your eyes just for - if there was anything else wrong, to clear anything else out, not an eye test.” There you are, I’d forgotten about that. Which I did, my optician. I think twice, I must have had a slight distortion. Now it’s coming back. But then it’s, what, two and a half years since I started with it. And he always gave me a quick appointment too, before I got down too, that was when she always gave me another scan. That’s, sorry, it’s coming back to me. I got the initial scan and the twice where I felt a bit of distortion in my eye, I then got other scans. But that’s quite a while ago.

And you also got - continuing the theme of speedy appointments - your optician, another member of your healthcare team who works in a completely different setting, was also somebody that gave you quick appointments?

Yes. Actually, when I went, the first time it was to get an eye test and I said to him that I had giant cell arteritis, he got his book out and read up on it. He says, [laughs] “I don’t think I’ve had anybody else in that has said that.” So that was when I had a bit of eye distortion, but I haven’t had that for a long, long time.