Is there any messages, I suppose, that you want to get out there?

Well vasculitis can define you because of the, it’s such an insidious nasty condition, but [sighs] and I know there’s a lot of people who their conditions are dreadful and they never seem to, just seem to drift from one to another and they never seem to be able to come out of it.

But on the flip side of that there are people who have benefited from their medication, and they can go on and lead a more or less normal life, but not everyone. I’m careful what I’m saying here because I know there’s a lot of people who can’t do what I do.

But [sighs] there is life after vasculitis. You know, it’s, [sighs] one of the statements I made recently was that vasculitis is here to stay but so am I. You know, so it’s, still got it, but I’m kind of staying here as well. Who knows what’s round the corner, but you could get knocked down by a bus tomorrow, it’s just that the vasculitis you know there’s something there that’s, it’s niggling away all the time but just got to live with it.

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.

I have an annual appointment at rheumatology, I have six monthly appointments at the ophthalmology because it impacted on my eyes, so the consultant up there just keeps an eye on it, [laughs] ‘keeps an eye on it’, and then nephrology because I’ve, you know, I flared earlier in the year I will be back there next month, so that’ll be a six monthly appointment, and that’s the main players, yeah. Oh, sorry, ear, nose and throat as well, I’ve got a pending appointment at the ear, nose and throat.

So, it sounds a lot but it’s no really, it’s not really, and what’s comforting is that they all know each other, so they all talk to each other. So, the, and they don’t, you know, so, when you go to meet one, they’ll look at the, your last blood tests that were taken by say the rheumatologist. So, they’re, they’re actually, how can I put it, they’re extremely interested in looking at the condition and what it does. You know the, the eye hospital, the lady up there, she looks at my eyes and she then looks at the blood tests to see if that impacting on my eyes. You wouldn’t think as a layman that it, that your kidneys impact on your eyes but it does. So, it’s good that they then talk to the other consultants.

And how do they keep you in the loop, how do you know what they know about your health?

Well, when I see each of them, I then get a letter that describes how the appointment went, so that’s what they tell me. But, because I know them for the same people, particularly nephrologist and the ophthalmologist, because I’ve had them for so long I like to think that I know them, not just as a doctor/patient relationship and they’re always keen to find out how I’m getting on, not just purely in medical terms.

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

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

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

So, there’s fatigue and there’s fatigue, that’s fatigue caused by over-exercising. I know some people struggle with fatigue, getting up in the morning makes them fatigued. Initially I did suffer from fatigue earlier and people would say to me, “How would you describe fatigue?” and I says, “Well if you, if you can imagine getting out of your bed in the morning and putting on a suit of armour, chain mail and try to walk through the house wearing a suit of chain mail and you just collapse on the sofa because everything’s just weighing down your body and you’ve no energy to get back up again,” I said, “That’s how I would quantify fatigue.”

Now being tired after, you know, pottering about in the garden, that’s just tiredness, whereas fatigue is something that’s really, really problematic.

Some people have talked about courses in fatigue management that they’ve been put in touch with, have you ever had anything like that?

[Shakes head] no, because again, fortunately until about, you know, earlier this year I was still going to the gym a couple of times a week. So I was, so I would go at a pace that I could manage, so fatigue has never, apart from the early days when I didn’t quite understand it, now the fatigue for me is manageable and it’s, I can, I can deal with it because what happens now if I over-exercise or something like that, if I do something too much I just stop and sit down and just give myself time to recover. Whereas going way, way back years ago, I would keep pushing through it thinking, “Well I can do this,” whereas now your body tells you, “It’s time to just take it easy.” So, I can deal with it quite, quite easily.

And instead, it becomes something that’s more a warning that things might be …

Yes, yes, and I can go, honestly, I can go for weeks without feeling fatigued because I know how to deal with it, I know how to manage it, I know what the limitations are and, whilst I’m saying to you earlier that it’s, that the only thing just now that manifests itself, it only does that if I ignore it. You know, in other words I know what my limitations are and, you know, I, I can manage, I can manage quite well.

It couldn’t have been any better because, when I was first unwell I was so dependent on my wife, getting me to the hospital, getting me to the doctor, because again, we’re quite a distance from, you know, the, from [large city] city centre and it meant a car ride, a train, you know, to get into [large city] and especially, for instance, the eye hospital, in the eye hospital they would give you drops in your eyes and you couldn’t see, [laughs] and she would need to take me by the arm and walk me back down, you know, to the station.

It’s been a great support. You need that support because, even in the early days I was on quite a lot of medication, and I couldn’t focus or concentrate on sorting out my medication. So wee things like that breaking up the tablets, but then again, I lost a lot of weight because of it, and I had to try and build myself back up, so eating, having to eat three solid, you know, three square meals a day sort of thing, so I was dependent a lot on my wife through that difficult time.

And now, so as I said, I didn’t take very long to come back out the other side and we just make the most of each other’s company, you know, obviously just the two of us but each day is spent, “What are we going to do today? Where are we going to go? Where are we going to go for lunch? Where are we going to go for coffee?” [laughs] It’s, it’s very simple now, it’s, the hard part’s been done, and we’re just making the most of the easy part.

But you need the support, the support was there, when I needed it and I’ve reciprocated since then by paying for the coffees and the teas and the lunches [laughs].

Fortunately at that stage I got a, a quick referral to the rheumatologist at, in [large city] and, the rheumatologist, they had me admitted to hospital within about two days, and for the next four days I received extensive, testing of all my major organs – kidneys, heart, lungs – anything you can think of, it was tested, and they determined at that stage that the vasculitis was confined primarily to my ear, nose and throat, and consequently they medicated me with a medication called methotrexate.

Now at that stage I was actually quite happy because the symptoms had all disappeared and my hearing had improved that I could get hearing aids, so I was leading a normal life apart from this methotrexate. So, this was in the summer of 2012.

After about four months on the methotrexate, I started to feel fatigued again, I felt lethargic, I just felt run down, and I just thought it was just symptomatic of the condition and the medication. Unfortunately, it culminated in me contracting pneumonia, which resulted me getting shipped off to the hospital in the back of an ambulance and straight into intensive care, because what had happened was the vasculitis had attacked my kidneys big style.

So, I was in intensive care at [acute teaching hospital in large city], pretty much I was out of it, didn’t know what was happening. But over the next ten days I received, I was on blood transfusions, I got, plasma transfer, I got kidney biopsy, I got cyclophosphamide, which is a pretty nasty medication, and I was getting kidney dialysis as well. So over that space of ten days I was really ill, but you wouldn’t believe it that after ten days they said, “Well your kidneys have recovered sufficiently and we’re happy with your progress and we can discharge you.”

So initially, when I got the diagnosis of vasculitis – now bear in mind it had all been focused round about my head and my face and my ears, my nose and my throat – now I’d heard of people who had sinusitis, tonsillitis, laryngitis, and when I got this diagnosis of vasculitis, I thought it was something similar.

Now I couldn’t have been further from the truth, because as soon as I Googled it, I realised just how nasty it was, that it was something, it just wasn’t a mild illness.