Systemic Vasculitis

Yeah, in a way. I mean I think particularly with running a business, you know, I can’t go, I can’t have a day off sick, because the work won’t get done. So, I just sort of say to myself, well, you know, you've got to keep it under control, the Behçet’s under control, you've got to stay on top of it, because you can’t afford to let it interfere with work. And I've always had a, a fairly pragmatic approach to things, you know, when I was in the police as well, I was always fairly down to earth.

And I try not to let things get on top of me and, and bother me too much, but sometimes they do. It’s difficult, it is difficult to really sort of separate the two at times, but no, I do know if I let everything get on top of me too much, I will have a flare up and the flare ups are really unpleasant, and I don’t want that. So, it’s always at the back of my mind to just sort of stay a bit more grounded and not let that happen. And it generally, I can keep on top of it normally and sort of keep things in context.

But, in time, living with vasculitis, you realise that, you know, you need to adjust yourself, you need to, like, for example, I couldn’t go for the job I liked. To, you know, to apply for it, because I was not up for it anymore, I, you know, I couldn’t put in the hours and put in the work. You know? So. And I had to settle for less? But that’s not, you know, this is for now. So, in time, if I want to, I can do more. So, you know, you kind of need to, how to say, you kind of need to see the positives as well. Like for me, for example, it’s very important that right now there’s a possibility to work from home, that my employer is very understanding in this perspective, plus I come from an environment where people know me, know what I can do and know my circumstances as well, so, and they want to keep me there. And they kind of understand how things are right now. So. And with everything that’s happening, like with the pandemic and a lot of people losing their job and, you know? So, I think that’s a plus I have. You know. So, you have to, I don’t know, to try and find the positives as well. And, in time, you know, when things will improve, there will be other jobs, there will be other opportunities. It’s not, you know. This is something that’s for the future.

I couldn’t imagine going to a work in retail trying to pick up a case of beer, or two. I used to be able to pick say two cases of beer up, or two cases of coke in the local [convenience store], you know, to stock the shelves, and what happens if then you start bringing blood up and there’s customers, oh, I just can’t imagine it.

So financially, luckily, it doesn’t matter. I was only working part time and it was just, we can live on what, you know, the wife earns. But support wise it’s very difficult because they see somebody fully, you know, they see me fully, and I look fully fit. How can you explain to somebody that one day you can do this but the following day you can’t?

And they’d sort of said, “But you’ve got two hands.” Well, yeah, could you really sit on a checkout for five hours, you know, just putting stuff through? I don’t know, but then after that are they wanting you to say do three hours on the floor and then is it too much for your body and would they understand?

And I just think right now it’s just better not to try anything rather than try some form of work.

But I’ve just, I’ve attempted to work since I’ve been diagnosed, I attempted to go back to university, couldn’t do it, I was just too unwell, so they gave me more time, and just, just wasn’t well enough, I applied for an internship, which I got and I did about three or four days there and I was just so incredibly unwell after those three or four days from working, that I just couldn’t continue it, it made me, and then I was ill for about a month afterwards as a result, like really unwell, and so I’ve tried on multiple occasions to return to both work and education and it’s one of those things that, now I realise I don’t think I will ever be in a position in which I’m able to work again. I maybe if I somehow become better from these other things that I’ve developed; I don’t know. Maybe potentially a part time job in the future.

So, between us then we decided, you know, it’s not worth, and for me I thought, “No, I can’t go back, go to work at the moment.” And then they, they terminated my contract in October 2005, my work contract.

So at first it was very, very, lonely because, you know, you take for granted that I’m going to be, I’ll be going to work, I’ll meet, meet up with friends I made at work, with colleagues and things like that and, you know, suddenly you’re not going to work and you’re never going back to work and you think, I think, thought to myself, “Well oh, my word, what am I going to, how am I going to keep in touch with all these people that I know?” Luckily, I have still got a few ex-colleagues who, who are friends who keep in touch, but it was, the social aspect of going to work had gone and, because, you know, when you go to work sometimes you have a chat with your colleagues and, about personal things and, you know, you don’t even have that anymore.

Oh, yeah. It was hard, it was. It was [sighs]. At the time, I was feeling [sighs] pretty ill and I wasn’t enjoying the job, so it was easy to walk away from it because I wasn’t enjoying it either. I don’t know how much of that was because I wasn’t really that well or how much of it was just because I just didn’t enjoy that job, and I think a lot of people around that sort of age do make a change because the job that was ideal for you at 25 is not necessarily the job that’s ideal for you at 50.

And I just wanted to do something that was easier as well, but whether that was borne of everything else being such a struggle? Maybe it was. I was still able to do the job but the cost to me was too high. I wasn’t able to do anything else; it was the job and that was it. By that stage, you know, to do the job, to keep doing it full-time, I had a gardener to do my garden, a cleaner to do my cleaning, I was buying ready meals all the time. And not enjoying it and not enjoying my time off because I was so exhausted from having been there. I just thought this is, it’s like being on a treadmill, I don’t want to do this anymore.

And so, I went to work in just a food shop, because I thought, “Well I’ll view that as being paid to exercise.” I get the exercise working in the food shop, I won’t get any of the stress. And I quite enjoyed that. I do think, though, if I hadn’t ever been ill, I’d probably still be working. As a pharmacist. In fact, I’m pretty sure I would be. Because not many people retire at my age from that profession.

So, but it doesn’t upset me really, because I just don’t think there was any other, there was no, it was the best decision for me. I made it, nobody, nobody said to me, “Perhaps you’d be better,” you know, because I was still able to do it perfectly well. I knew that I was going to be better - and I’d always said that I wasn’t going to work until I was very old, I was going to retire and I was going to enjoy it – this was before I was even ill – because my father died at 48 and my mother at 68, so I didn’t see a great deal of point in [laughs] working until I was 67 to have no retirement at all. And having had that experience, I was always very determined that I wouldn’t, wouldn’t work. And I never would probably would have worked beyond 60 anyway.

And I wouldn’t say I miss it. I miss the intellectual side of it more, but I get around that by just reading.

The tiredness and fatigue, yeah, which is both physical and mental. Yes, that’s what made it, when I went back to work in 2012, I was going to say, forget, these other things came along, came and went, and, you know, the, the eyesight and with the vertebrae and blah-blah-blah. But the one thing, and I was working from then until I retired in 2017, so, five, five and a bit years. The one thing that affected me greatly and I understand having spoken to a lot of other people with vasculitis, it affects them, it seems to be a common – if there’s one common thread that seems to run through all the types of vasculitis, and people that have it, however they’ve got it, is tiredness and fatigue, and, both mental and physical. And that was very, very difficult to cope with in that I started to work a 10am until 4pm day, because even by two o’clock in the afternoon, you know, I’d have a lunch break, even by two o’clock in the afternoon on most days, I would physically feel puffed out. I didn’t really want to get up from my desk, and blah-blah-blah. And mentally, because being a creative person, I was constantly taxing my brain for a number of reasons, that made me very tired very quickly anyway, and add vasculitis to the equation [clicking sound], no. So, I found, I didn’t found, I didn’t, when I got very tired with it, I didn’t find I lost my creativity, I just found I couldn’t find it for a while, [laughs] if that sounds, if that doesn’t sound stupid.

So yeah, It’s very strange [laughs]. I’m sorry, I just. It’s. It doesn’t go away, this, this tiredness. It, it maybe manifests itself in slightly different ways, but it’s always there. And it’s very, it is very, very wearing, even though it’s almost unrecognisable sometimes, it’s happening to you, almost without you knowing it, if you know [laughs], if that doesn’t sound stupid. It’s, it can be very, very wearing, and it was for that reason that I eventually decided to retire. If I hadn’t had vasculitis and I wasn’t suffering from this kind of thing, I wouldn’t have retired. Not for a little while, anyway, I probably would have stayed working for a, hopefully another couple of years. But it, it was hard, I mean for nearly five years, suffering that. That was damned hard work. Really, really hard work. And I thought, “No, no, no. I’ve, I’ve done my bit.” [Laughs] I’ve, you know. I think I’ve helped an awful lot of clients over an awful lot of years, now it’s time to help me.

Or, if other people were to think about it in different ways, I suppose you would think about something like a CV and, and, and what you put on a CV, and the longer the time that you’re off on sick leave and unable to do the things that, that, that you would like to do in work, that CV would become more and more empty or missing kind of large gaps.

So, you kind of feel like, though it’s help, helping your health at the moment with this treatment, that in the long-term you are almost being penalised for not being able to maintain what you need on your CV to be able to kind of continue on in the work that you would like to do.

So, I think that is hard for anyone with a condition, and I think the most important thing that, that can go along with that is some levels of compassion or care from people in the organisation or managers, to at least understand those worries and fears, I think, and at least acknowledge them. It’s not necessarily the case, I don’t think, in any real world that people can truly deal with those and truly, completely take away any of these worries for people because that’s just work, that’s, that is life. But I think for people within the organisation to actually be compassionate and to care and to listen and to understand that those worries are there, I think at least halfway allows someone to know that people understand the challenges that they’re going through. Not necessarily that they can change them, but that they understand that they’re there.

But then trying to find a new job was horrendous because I was hit by brain fog, and that’s absolutely horrendous, and I guess unless you experience it? You’re going to struggle to understand what it’s really like. For me it felt like my head was literally clouded, I felt like I needed to open up my skull, take my brain out [gestures] and give it a good scrub clean, like that’s physically how it felt.

I remember I had one job interview and I was just talking about something and then my brain just left me and then I was just so generic all of a sudden in what I was saying, and then I became aware of what just happened and it just made me feel really embarrassed. So, it took quite some time then to actually find a job, and then it’s also a case of finding a job that I can physically do you know.

I was, when I was, just before I was diagnosed, I was working in a supermarket and I’d left that because I was starting uni and I’d had another job, I was work, so I’ve been working two jobs at that, before uni. So obviously I made the decision then to leave one of them. And I wouldn’t be able to do that supermarket job anymore even in that, like leading up to when I was diagnosed when I was working in that supermarket, I was finding it incredibly difficult, just, just doing the job. I would just be exhausted doing some of the most basic things. You know, just standing at sort of self-serve checkouts was painful in my back, just use, [gestures] the repetitive movements of scanning was just too much.

So it was, it was a lot to try and find something that I could physically do? And trying to get a career in something that’s extremely competitive makes it a lot harder when again in an already competitive market you’re limited to sort of a lot less jobs because a lot of the jobs you wouldn’t be able to do, and that’s something I guess I’ve found hard, it’s still something I contend with and now with the coronavirus as well trying to find jobs more in line I guess and having the supervision with people that I need it with to get me where I want, want to be. Is that, do I leave a job where I’m able to work from home safely for something where they might not be able to accommodate my needs? And make those reasonable adjustments, how would that affect everything. So, it’s, so it leaves you in limbo?

But, as normal, everything that happens with me, I had to, I had to fight with them, basically to get working from home. This was before the shielding letters came out and it was made mandatory that you start working from home. So, it was about the second week in, in March and then by sort of two weeks later, even my husband was working from home, you know, every, everybody [laughs] was working from home at that point.

So, I think that’s a positive, and occupational health, I went to see - well, I didn’t go to see them, I had a video conference with them over the summer because they were wanting me to increase my hours from 20 hours a week to 24, but in that consultation, occupational health says that they don’t want me back in the office until COVID is gone, you know. You know, it’s, well, it’s never going to be gone, but it’s under control. And that, in fact, because working from home is working so well with me, for my fatigue, you know, you can manage it better. You know, you can take an hour off in the middle of the day if you need to go down and rest and get back into it. It’s just so much more flexible. He actually suggested that it’s, it’s more permanent for me and that I only go into the office on an occasional basis, so even after COVID, I think this will be good. I think I’ll have to fight to get that because [smiles] nothing happens without you actually fighting for it in my work.

So, I don’t tend to tell people anymore that, that I was a nurse and whatever, because it, that seems like another life. It, I think sometimes with illness what you, and I, maybe it depends on the degree to which your illness has affected you and whatever, and maybe this is because I lost my job and had to medically retire, but in a way my life was pre illness and then it’s been post illness and the post illness life has been very different and in many ways I’ve had to build a new life. For myself, which I’ve done.

Probably some of it, so I, you know, I would have said when I was a nurse that I was patient-centred and that I understand, I understood what it was like to be a patient because I looked after patients every day. And it took becoming a patient to make me understand that I didn’t, that I didn’t have a clue. And to know that patient involvement in either research or services or whatever, are, is so very, very important, just to understanding what people go through on that journey.