Systemic Vasculitis

But the worst thing that happened to us was we thought - goes back to just this loss of vision, you know, single loss of vision - was that I was put on the 60 milligrams of prednisolone, and I was told when I left the hospital, “It’s always possible you could lose vision in your remaining eye.” So, I panicked. I went home and said to [name], my wife, “We’ve got to leave.” We were, we were in a lovely bungalow in [village], but it wasn’t, didn’t have shops readily close to us. And I said, “If I lose vision in both eyes, I don’t want to be here.”

So, we moved to a flat in [town] and we stayed there for seven years, actually, but we didn’t like flat living, it’s not ideal if you, if it’s avoidable. But it was close to the shops. That was the thing. So, if I’d lost my vision completely, I could have done without, I could have managed without the car and there was a Co-op nearby. But eventually we decided flat living wasn’t for us, and anyway, [town] is quite a way from the hospital. So. And my wife missed the garden. So, we’ve now moved into this bungalow, which is only a two-bedroom bungalow, but it’s got a nice garden back and front, we’ve got our own front door, it’s just what we needed and it’s great. And it’s only ten minutes from the hospital, it’s only ten minutes into [city]. Should I have said that? [Laughs]. And very soon we’ll have a bus stopping virtually outside, number 15. All the way down to the beach if we need it, you see? So, I count my blessings [laughs] and you’ve got to do that.

Since Ramadan started in August, July, August time I’ve had to not fast because I just couldn’t manage doing, having like my night-time tablets and having my daytime tablets like only an hour or two between them, because I don’t think that would be very good. So then, you know, I, and also, I asked my renal consultant, “What do you think I should do, do you, what do you recommend that I do?” and he said, “Well I, just to risk getting your kidneys getting dehydrated, it’s not worth it that you fast.” So, for the last, probably five, six years I haven’t been fasting in Ramadan.

Has that had any implications for you?

[Sighs] Well it’s one of the, fasting is one of the Pillars of Islam, so it was, at the beginning I felt really bad because, you know, I just couldn’t take my tablets. At the beginning I was taking, I was trying, do, I did a few then I stopped for a few fasts and then I started again. So, I was stopping and starting, throughout the month.

But now, it, I can’t do that because at that time I was on different medication and it didn’t really matter if there wasn’t a long enough period between them, because I would have to take my breakfast medication, at half one, in the early hours of the night basically. So, it, and then I’d taken if, my night-time tablets previous to that say about 12 o’clock, so I was taking them before I go to bed, so say about 12 o’clock. So, with only an hour and a half between them I was thinking that maybe I’m taking a risk I shouldn’t, I wouldn’t, shouldn’t take basically.

So yeah, I did feel like, I did feel bad at the beginning, because obviously if you can fast in Ramadan it’s so much better, you know, there’s a lot of positiveness coming from that as well. So yeah, I did find that at the beginning it was quite difficult but now I’ve sort of settled into it, and also, if you’re, if for whatever reason, medical reason you’re not able to fast, we need to pay a small amount for each fast, to charity. So, I, for the whole month I would just send some money to charity and that would be covering the fact that I wasn’t able to fast this year sort of thing.

Well in terms of the friends, I mean it’s been very difficult in terms of friends I don’t really have many kind of casual friends as it were, you know, we have like best friends or close friends and then kind of just friends that we sort of see every now and then and all those sort of friends I made at university and those friendships were very much based upon kind of going out socially, as it were, you know, doing things socially like going, going to the pub for a drink or going on a night out, or doing things like that which when I was diagnosed and then I became unwell, I could no longer do.

And so, you know, some friends, some friendships obviously survive that but some don’t because they, they were founded upon being able to do things actively and if you can no longer participate in any of those things in which, you know, all your friends gather together, you, you sort of lose them as it were, unless you make a real effort sort of to keep up with them, which is again also difficult when you’re unwell as maintaining friendships, it sort of, it takes a lot of mental capacity to continually talk to people all the time and keep up with them, which people don’t realise that that actually takes quite a lot of toll on you physically, it makes you physically unwell sometimes to do things which perhaps someone that’s not unwell wouldn’t have a problem with but when you’re physically unwell doing something as simple as having a conversation can actually make you physically unwell too which is difficult to explain to people but it is, it’s what happens.

I think the thing that saddened me most, I guess I’d lived here three years when I started getting ill, yeah, that would be right, three, three years. Yeah, three years. So, I’d moved from a place where I’d lived for 20-odd years. And so, some of those friends, we were meeting up and having a meal, you know, in London, sort of the nearest big city to us all. I can’t do that now very often, and it’s been very difficult for them to make the journey across to me. I live a hundred miles away, and so they’ve been waiting for me to get better [laughs]. And that seems to be quite interesting, this idea that, and I know I’m not going to get better enough to do what we did before, so, you know. And I haven’t got the energy to bring them over, so, you know, that’s a friendship lost, which is sad, very sad.

And likewise, family, some family members it’s like that, but yeah, it, I think that’s the thing about a disease like this, it, that’s how it affects relationships. I try not to be demanding, I get told off about that. But and, you know, to sort of ask for help when I need it, but I’d be, I’m quite good at asking for help because I have so many people that I can ask, so I think some people feel I haven’t asked. Why haven’t I asked for help? And I’m like, well, I’ve got someone else helping me, you know? Sort of, like, without actually telling everybody who, who the network is, my children know but, and I think it’s important they do, but otherwise, I don’t know. And I do believe it’s important to give and take, and I have lots of ways of giving stuff back, you know, I make things and I paint, and I do crochet and stuff, so, and I’ve grown seedlings this year so, you know, half the village are growing stuff that I’ve raised from seeds, so you know, it feels reciprocal, really. Yeah.

That particular friend I guess didn’t realise how bad things were until we went on holidays together, a couple of years after I was diagnosed. It wasn’t, we weren’t doing anything too much, it was more just like laying in the sun type holiday, and one we could just having a wander round, but it was in Ibiza, Ibiza’s relatively flat so it was quite, easy to manage, we weren’t there, for the party sort of scene.

But I think that’s when she perhaps realised how much it affected me, because that’s when she got to see it every day, because obviously when you’re around friends they only see a certain amount.

One of my other friends was really helpful because she was going through her own issues with regards to her mental health, and even though what we were both going through was different, we both had similar experiences to some extent? With people not listening and just not knowing what’s going to happen next. That friend had to stop working because, she had a, has OCD and it got to a point where it was affecting her work you know, so having those worries about, “Am I going to be able to work?” you know, we both shared a lot of the same concerns about different aspects of our life even though it was about completely different things.

And I guess having to an extent a shared experience you know, was really helpful you know, I’d go to the house and we’d just sort of hang out with each other. We wouldn’t really talk, we wouldn’t really do very much, but it’s just sort of that company, as well, and again, with her I didn’t realise how bad her OCD was until I saw things getting really bad, I knew it was there but I, until you sort of see how, how these things manifest, it’s easy to sort of play down other people’s symptoms and what’s wrong with people.

It’s helped I guess reconnect with some other friends. So, one of my school friends has an autoimmune condition and I think, we never not, stopped talking as such but obviously, as things, as we grow up, we get sort of distanced but I guess it’s helped us reconnect a bit. And that’s helped as well having someone who knows what it’s like with like treatments, especially someone close to you and that even though family have sort of got rheumatology conditions, it’s not the same and I find that some family members will often just try and compare and you know, and it’s like, “Oh, this person’s worse than this person,” and it’s like I can’t be dealing with that sort of politics.

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.

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.

And so now, I try my very best to not worry too much, to try and sort of just keep things on a level keel because it does definitely – for me anyway – too much stress and worry. I mean when, when I moved here, I sold the house and because I don’t have children I thought bugger it, I'm going to sell the house, bank the money, rent somewhere because I've got nobody to leave anything to, and have lovely holidays and enjoy the money, and be selfish.

But when I was selling the house, my dad was very, very ill, he had dementia and cancer and everything else and my brother and I were sort of looking after him, so I had the whole house, the sale to do myself, I had to pack the whole house up and move. And I had to move into a temporary house whilst this was being renovated and the stress was enormous and worrying about dad. And then dad died two days after I moved house, so I hadn’t even been able to see him for a couple of weeks. And that caused a massive flare up, because, you know, I had a whole load of work that was piling up whilst I was doing the move, the move itself, worrying about dad then dad dying and me knowing I hadn’t been able to see him. And I had a huge flare up then and, and it was just caused by just all the stress of it all. So, I try very hard not to get stressed, [laughs] which is easier said than done. But, but yeah, it does cause problems.

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.

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].

Certainly, when I first went to university and I had my first proper relationship, sort of the sexual side of things, managing doing that and not getting infections, not getting ulcers, I feel like it was a very much trial and error thing on my own part and that maybe I wasn’t comfortable asking about it. Maybe if someone else had started that discussion it might have been easier?

I think you said you were about 16 and you started getting genital ulcers, and I’m sort of thinking back and think, how would I have even known that that’s what I had. You know, it’s not like looking in your mouth where…

It took me a while to have a look, mainly because I think I wanted to ignore it and pretend it wasn’t happening. But the pain of going to the toilet and it just, I couldn’t deal with it anymore, when I’d go to the toilet and come out of the toilet crying and that wasn’t something I could hide from my mum. I sort of, in the end I sort of took a torch and a mirror and thought, “That’s not right” [shakes head and laughs], and I showed my mum. I’m quite close to my mum and my mum said, “No, [shakes head and laughs] definitely not right.”

Yeah, then we went to the GP and then I was subjected to all of this STI testing. Which was entirely unnecessary, and was a painful process. Things were very, very inflamed and having someone put a speculum inside me was horrendously painful and I cried and the nurse that did it said to me, “I barely touched you,” sort of, it was really dismissive and there was no empathy at all in the process.

Then, I suppose, related to that, there’s the fertility, fertility side of things. We were married in 2009, September 2009, then my sister got married the following year, so we were trying not to get pregnant [laughs] in that year. And then after that, we were obviously trying very hard. Now obviously whatever was going on with the vasculitis probably didn’t help things, but then after that, after the heart operation, we had to wait sort of a good 12 months, then I started to flare up, then I went on to methotrexate. You have, you can’t conceive while, while you’re on methotrexate.

Then I had to decide, you know, do we, we need to get some help? We went down the fertility treatment side of things and that was all put on the backburner because then I had to go back on to the methotrexate again. So that causes a lot of, lot of issues with relationships and stuff. And it’s, it’s not just the relationship with your husband; it’s the relationship you have with your sisters that, that are having children; it’s the relationship that you have with your friends. So, the first time one of my friends fell pregnant, instead of feeling happy for them, you were feeling sad about yourself. And I suppose I had to come to terms with that.

And now, I mean, I’ve sort of, I’m approaching 40, I’ll be 40 in July this year. I know that it mightn’t happen, and I know that at the moment, obviously, I can’t because I’m on methotrexate, but I don’t think I would have the energy. I don’t have the energy to look after myself some days never mind, you know, a baby. But [sighs], who knows? People have children in their 40s now, you know, it’s not uncommon. But that, obviously, is a major, major impact.