Well say for a health or – I can’t dictate – for doctors, what I would say, based on the fact I went, I had ongoing issues with the sinuses, which seemed to – looking back now, I think it was relevant – what I was getting done was getting the sinuses drained, which, that turned out, that was a symptom of – or my symptom, if you like – one of my symptoms of the vasculitis.

What I would say is if it could have been diagnosed sooner, as in, the way it kind of was in 2018, potentially I could have maybe missed out on getting – well, I’d gladly have missed out on getting so many operations and exposure to, because I’ve now, I think, it doesn’t really bother me, but obviously I’ve got [points to nose area] you maybe can’t see too much now, but like my nose, because they’ve had to do bits of drilling, it’s kind of out of place and things like that, it’s just cosmetic things. But things like that, some people might get affected by that because it’s – I genuinely aren’t – but if they’d got on top of it sooner, which I believe is done from a blood test, although I’m not sure how readily available a blood test is for that, it’s, is it cost-effective? Is it as simple as just doing it? But I suppose if you blood test everybody it’s maybe, I don’t know how it could be done, but things like that, I would say, if they could get it – and I dare say obviously awareness and they’re learning sort of every day with the symptoms, you know?

But I would say if, for anyone, if you’ve got any sort of, any, well, for me, obviously they say ear, nose and throat symptoms and breathlessness, which I think is quite a, they’re common things which you could think, “Well, I’ve just got the cold, I’ve just got the flu, I’m just,” – I’m saying “just” – “just got a cough,” and it could just be – you hear people saying, “Oh I’ve, oh I’ve always had that cough,” but surely it’s not right to have, always have a cough, you know what I mean? Like there’s got to be something underlying and the sooner you can kind of get it looked at, or.

And there probably was for me, a bit of reluctance to go like to the doctor’s now, but it’s definitely opened up my eyes in saying, “Well.” And I look at now, I’ve got my two daughters, I think if anything, you know, I wouldn’t say quite the least wee thing, but I’m thinking to myself, should this happen, anything like that at all I would be, I wouldn’t hesitate now, on what I’ve done, of what I’ve kind of learned or, from my own experience, hesitate for to go and really try to get to the bottom of things sooner, to try and get things kind of resolved, that’s all I would say, so.

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].

But what I would say is just speaking on the elderly people who I – [smiles] I’m saying elderly, I don’t mean, they’re not too elderly, I’m just, I’m saying older than me. I mean, some of the people may just be in their 60s, or I think there has been a few older people, maybe 70 onwards but, so I’m not meaning elderly, I’m just meaning like older than me. But what I would say is that a couple of them – and this is why I like and I don’t like speaking to people because sometimes, because it’s what you get from it, you kind of take the positives or the negatives, but.

If you, some of the people have says, “Oh,” and they say, “Oh I don’t, I don’t wish,” like if they’ve had a symptom for maybe – or had their problems for 20 years or more – I’m thinking, “Have I got all this, have I got 50 years to deal with this or have I…” you know what I mean? So, I’m thinking to myself, I try – I listen to them, it’s nae nice – I listen to them and I’m thinking, I’m kind of ignoring that because I don’t want to think, “oh, it’s going to be doom and gloom for the next,” or anything like that, then it’s not going to be good.

But. You think, they’ll say, “Oh I hope you, I hope you’re not going to be like me for the last, for the next so often,” so you’re thinking, you’ve, now you’ve been diagnosed, have you got longer to suffer with it, so to speak? So that’s, that’s, you kind of weigh up – and also, going on that note, when you do hear – it’s good to hear other people – some things have been quite similar to mines, although they’ve had kind of involvement lower down. And I would say, it’s good sometimes, again, you know, on that social media things, some people will post, like, what they’ve, what they’ve got, which is good to hear. But then you think same times, it, it puts a little thing in your head, thinking – and my wife shows me, thinking of, [touches side of neck] “Is that, is that, is that kind of, maybe I’ve got that now,” or, “Are you looking out for that?” Once you read something, are you looking out for that? So, as much as I like, you kind of, it’s good to discuss and see whatever everybody’s having, you think to yourself, if something crops up, you think oh, this can happen and you’re thinking, “Oh, is that going to happen to me?” So, it’s seeing both sides of the story with that.

Other things to note, I would say, on the, the whole situation. I would say, like I say, that what I’ve found is that, and my experience is – and I dare say a lot of people are the same, if their partner or whatever –the one person who probably does get affected, apart from the person their-self who is actually okay going through it – is probably the closest person. Obviously in my case, it would be, it would be my wife now.

As understanding as she was, and she still is, really, it probably took her a bit of, a bit of time and a wee while just to, because it is, it’s almost like you’re a bit of [inaudible], she, some people might think, “Oh, you’re just being lazy, you’re just being this,” and it, it genuinely isn’t, because I wouldn’t say I’m a lazy person, I’m quite normally kind of up and at it or trying to do what I try and do. But it looked like maybe I was selective, say about the, I don’t know, what was the basic of things, and this might sound silly but the basic things like maybe the washing or tidying up the house, there’s, actually I’d go, “I just need to lie down.” Things like that, so.

As much as she was understanding, it was obviously frustrating and quite of an impact on her because basically I’m, so to speak, she’d be working like a man down when, because I should be and I did, when I came home, I took it upon myself that it is up to me to give her a break, but when I’m home, I’m actually off work, if you like, from when I’m offshore. So, it should be – or should have been – up to me to kind of basically deal with things as in the school run, the, even shopping and just general housework, but I felt, again, it’s selfish. But not on purpose, if that makes sense, I was just, I was just doing that because I couldn’t, I couldn’t really, I couldn’t give any more, basically. I said, “I’ve done my work,” and that was it, so.

What I’m trying to say is that the person who’s probably closest to you on a day to day basis, they realise but at the same time they get the brunt of all the, if there’s any kind of – and it wasn’t, it was nothing serious as in like real fallouts, but there was, anything maybe voices get raised, you just think to yourself so as understanding as they are, it’s the only person I would probably speak to about it. Even – I’d touch with my mum and dad, how things – but it probably just is a security thing. I don’t like to say too much to my mum and dad because I don’t like other people worrying, if that makes sense. So, it’s, my mum doesn’t keep in the best of health so I don’t like to kind of put more problems on to her so I just kind of say, “Aye, aye I’m fine.” And as a rule, I’m fine, I mean it’s not life-threatening, I am fine, but I don’t like to put my problems on to somebody else, anyway, so.

But, but the wife, so the, when any kind of, any kind of frustrations would boil over between the two of us, but at the same time she is the only one who was, who would get me, she would still do everything. Almost like acting with three kids, because she had to look after my own two, and then me as well so. And aye, just things like that, that was probably the hardest bit.

Yeah, so that’s it, basically, for, on the impact, if you like, that it’s had on me, however, at the time of diagnosis as well, it kind of all came at once. I’d not long started working for myself, so to speak, via a limited company, which was almost like a double whammy because there’s then the insecurity of obviously getting work, obviously you’re not under – like for example, once you’re not with a company, you’re not entitled to maybe sick pay, things like that. So, on top of that, that was always kind of playing away at the back of your head. You’re thinking, “Maybe if I was a little bit more secure and with a company,” or even another line of work. Maybe it wouldn’t have been as financially, financially as rewarding, but just knowing that you were getting a constant monthly salary probably would have kind of helped, like just psychologically in your head, thinking, “Okay, at least, at least the bills are paid,” at least the things like that. But the, the fact that any time work came up, I was like, you kind of have to go. You, go to just go and do what you need to do, get the work done and get home, basically.

So, like I say, that happened, I actually started the limited company of self-employment for myself, in around the April 2018. And then four or five months later, that’s when I actually got diagnosed. So, it was like, it all kind of came at once, which wasn’t obviously the best of timings, but it’s just one of those things, sort of thing.

Yeah, so you, you were saying that when you were first diagnosed, the consultant spoke to your wife because you were going to be getting cyclophosphamide.

Yeah. Yeah, it was, I’m sure it was the cyclophosphamide that they were saying, it’s quite a, quite a harsh drug, if you like or, to give the initial kickstart of the recovery, if you like. And one thing he said, “Oh, we’ll maybe…” he said, “I’d either speak with your wife, or she kind of,” he wanted my wife to be in there, to actually say, speak about family, whether I had kids, whether I was planning to have any more.

And luckily, the age, our kids were kind of up, so we was, genuinely wasn’t looking for any more, but then – and that was me at maybe 30, like I said, I’d have been 31 say, maybe, 31, aye, 31, 32, so. I mean, and I dare say there may be younger patients. So to get told that maybe five year prior to that, maybe 20, when you maybe did look to have a family, again, that could be a, and in the very time, I actually had a friend, or a kind of friend, he was, him and his wife were struggling and a similar kind of age to me, to kind of have kids, so I’m just thinking, that kind of, that would be a shock to the system if you’re maybe planning to have children at a later stage in life and then this kind of comes about, and because of that, it kind of could potentially make you, you more, less likely to have kids, so that was a bit of a, although it didn’t impact me directly, it’s a way I kind of thought of anyone or other people who might have been in the same boat, who didn’t, who wasn’t lucky enough to kind of have kids, it could have been a, it wouldn’t have been a nice situation, really, if you were planning that, so.

That was a kind of little bit of a, again, shock to the system, just hearing it and how, how serious it potentially, the medication was going to be or what needed to be. Although it didn’t directly impact me, it was something worth mentioning, really, to think, you know what I mean? To, not to scare people as such, but just to kind of, to stress how, how kind of life changing it potentially could have been.

I should note as well, I’m speaking about involvement, sorry, involvement but obviously down below – again, this isn’t directly linked, or so we don’t think it was – just I forgot to say that at the turn of the year, I actually had a, a catheter fitted due to a urine problem, but it was more to do with a stricture in the urethra, if you, obviously, the urine tube, if you like.

But again, I don’t think they were, they couldn’t confirm or deny if it was directly linked with that because, again, for a good few years, I’ve had a slow flow of urine. For some reason, and again, I thought it was normal, but it came to a point where it was, nothing was coming out, and actually I had to get a catheter. But that’s resolved now – sorry, I actually forgot about mentioning that, so I’ve mentioned it now. But, again, they don’t know if it’s directly – they said it could be or it might not be, you know what I mean? But it’s been resolved, I’ve had an operation to kind of, kind of open up the tubing or cleaned it out, or whatever it was, so that’s kind of resolved as well. But that was just, but it wasn’t anything to do with like the liver or the kidney, it was nothing like that, it was more just a stricture. So it was, it wasn’t as bad. So, I don’t think it was quite related, but I just thought I’d mention that as well, in case it’s any relevance.

Well, basically, it started, I would say, around 2014. When I was getting symptoms, more so of head pain, kind of in the right side but, which, turned up it was, it was sinusitis. And there was kind of ongoing ear problems, I had grommets and T-tubes fitted just to try and, it was all kind of linked with the ear, nose and throat, so.

I was back and fore a few times to a private hospital. And, and to deal with the sinusitis side of things. Which, they were draining the sinuses, I believe, and it was helping, kind of temporarily, maybe for, maybe four to six weeks. But then there was always a reoccurrence, reoccurrence. And this went on, like I say, for probably three to four years if not longer, but we’ll say about three to four years.

And, then from there, things kind of, in-between then, I was up still constantly going to work but it was quite it was, I would say it was genuinely quite hard but I was doing my work, but I, I did feel –in-between this, I just kind of felt lifeless, just quite fatigue.

So, so trying to get on with it was quite, was quite annoying. It wouldn’t just happen, as in, it was constantly there. And it wasn’t just something that came on, like, when I wasn’t doing something I enjoyed. Because I remember being on family holidays even, things like that, and even, maybe things like at a water park and I said, “I have to go home,” to try and just, to get, like, I thought about daylight, I went through loads of different scenarios in my head, thinking, “Is, is it daylight? Is it things that were just triggering my sore head?” but we couldn’t get to the bottom of it, really, so. But then it moved on, and in 2018 when I got diagnosed, it actually came from my right eye was, was closing over, which prompted me to go to my local GP.

And then from there I got taken into the hospital in [city], obviously, and they kind of, they picked it up from there, I believe, just from a blood test.

So it went, it basically went like that, and from there the, I was in hospital for around, I think it was just shy of three weeks, they were doing loads of different tests and things like that, but, and then obviously they confirmed it was vasculitis.

Because you talked earlier about it “grumbling”.

Yeah. Yeah, that’s the best way I would say it, to describe things and, again, I’ve kind of even been on, like, I’m saying family holidays, just to kind of give the aspect that it’s not like it comes on like a light switch, you know what I mean, it’s always there, I’m always kind of wary of it but when I say the “grumbling”, that’s when I feel things are getting that little bit, and at times, even if it’s in-between kind of doses of rituximabs, within the [inaudible], I’ll speak with them, they’ll say, “Maybe up your steroids a little bit,” and that, nine times out of ten, seems to just, well, like kind of, well, what’s the word I’m looking for? Like kind of, not mask it, that does just kind of give you a little bit of just, what’s the actual word, like, it does help kind of temporarily, but again, I don’t think they like you being on, as a rule, too much steroid. So, they just say, “Go up them until maybe hopefully just…” Nine times out of then, it is around about the time when I’m due. It’s almost like your body knows now, I’ve only had it a few times, knows your needing a rituximab.

Whether – I don’t think it is all just in your head, literally, but I, I do actually believe it’s like, not when you’re getting it, it’s, you do feel like – well I certainly do – thinking it’s almost like your body’s telling you you’re needing it now, you know what I mean? The rituximab, so. You ken maybe a few weeks prior to the, that’s when the kind of grumbling comes on, it’s like, “Well, okay, I’m feeling it,” and that’s when they maybe say, “Go up the steroids just to kind of give you a little bit of release until that,” basically, that’s, that’s what they do. But, but “grumbling” is the best way to describe it, because –

But again, it’s never been as bad as it was pre, pre, apart from maybe that last couple of, last month or so, just because it was delayed. That was as close as it has been. But again, never as bad as it has been prior to getting diagnosed.