Systemic Vasculitis

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.

If somebody was to be experiencing these kinds of things, what would you advise them to do?

Hmm. Go to their GP as soon as it happens. I don’t really know [laughs]. Just like, keep pushing for - if you don’t think what they’re telling you is right, just keep pushing for it. Whereas, you know, I got there in the end, but it took five years. You know, it didn’t just take one doctor or – I think if you don’t think it’s right what they’re saying, then get a second opinion or keep trying. Until you get what you want.

So, there’s something in what you’re saying there about speedier action when you first raise something like this, for it to be recognised that it’s…

There’s something wrong. And it’s not what they say it is. So, I would just keep trying and tell them exactly how you feel. Maybe be a bit more determined. Because I was quite blasé. I was a bit like, “Oh, okay.” Like, I knew it wasn’t eczema because I knew it was different, but if a doctor is telling you that, you don’t really fight, you don’t really not disagree with them as such. But seeing a totally different doctor and him saying it’s something completely different was good, because I knew it was something.

Is there anything that you have as a message if you like to other people who may be getting diagnosed with vasculitis now?

Mhm. Yeah, I would say to people listen to your body, that is the most important thing; you have to listen to your body. If it’s telling you it can’t do this anymore then don’t do it. If, if you’re not able to go back to work it will, obviously it’s going to change your whole life in that sense, but at the end of the day your health is number one. That is the very, most important thing to remember for any new patients who develop vasculitis, and that is a very important thing, yeah, they must.

Yeah, so yeah, I think the most important thing is accept it and try and look for the positives in it and listen to your body. And talk to your doctors. They’re not, they will help you if you know, they don’t intimidate anybody as far as I know. I know some people can be quite scared of professional, doctors and that, but they’re human beings and they will help, if you need to know something they will help you. They’ll explain everything from A to Z.

And nowadays the letters that are sent out from clinics, they are sent, well from our renal unit, they write the letter to me and copy in the GP. Before they used to write to the GP and copy in the patient. So certainly, you know, things are changing for the better for the patient and you have to take advantage of whatever that is, and if you need to know more information just ask for it and they will give it you.

And don’t be frightened of the drugs, the drugs that they give you are strong drugs and obviously not everybody will be suited by them, but if they were, they’re transformative.

I had, like, feeling sick at first with mine, which was solved by having more for breakfast, and it settled down, and it’s made an enormous difference to what I can do. I could [sighs], I could do less than 10 per cent of what I can do now. I mean, I’m limited now because of this coronavirus lockdown, of course, I have to shield. But if it wasn’t for that, I could go out, I could do a couple of things in the day. Before, I would only do one thing, one day, and I might not do anything then for the next three.

You know, I would, I would have one – and that might be a very small job as well, I mean, the job might be: dust your living room. And that would be it. I would start to make meals and get too tired halfway through to finish them? So, I’d say “Oh I’m going to do roast dinner” and then we’d end up with a meat sandwich. Because I’d have to change part way through. But now I could, you know, I can do what I want. It’s so much better. It’s well worth getting it sorted if you can.

So no, no, I think we’ve covered, the main things and kind of the main things I would want to pass on to patients, you know, on looking at a website. I think the support groups are important.

I think people have to be wary of things like the [internet forum] website where you’ve got a mixture of people talking and some are knowledgeable, some aren’t. You see any number of posts, kind of saying, “I think my PMR was caused by…” and there was one at the weekend, “Oh, I think it was caused by my statins you know, I started them and then got PMR.” Now it might be right, but equally, I’ve been on statins for 30 years and, you know, it didn’t cause it, so, but, but you read things, and it could just mislead a patient. But I do also understand where these people are coming from, you’re desperate to find a reason for, “Why me?” and as I say, I, there is a possible tenuous link for where I’ve got it from, but it’s tenuous and it could be total rubbish, it could be stress, it could be anything, luck of the draw.

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.

But for me and maybe for others that, that are, in this, in a similar situation, I think it’s really positive just to, or really important just to know, to stay positive, to get back to whatever your normality is, you know. You won’t ever forget who you were but you, you kind of start to like who you are because you kind of move forward and you do get better and even if it’s not, I mean they can be, it can be tiny improvements, but they matter you know, it can be tiny achievements that you think, “God, I never did that before,” and it can be small things but they all matter because they obviously are putting you going in the right direction. And if you’re not going in the right direction then that’s when, you know, you’d have to sort of say to [my vasculitis consultant] or whoever, and they’re the ones that help you out, but.

No, I think that’s the two main things for me, is that, is for the person going through the condition to realise that it’s not the end of the world and that yes, it’s a horrible thing that we’ve, you know, a horrible hand we’ve been dealt but, there are people worse off and we just need to get on with it and that’s, you know, we’re alive and, if you can move on then move on.

And I really am fully convinced that by trying to motivate myself to do forms of exercise that you can improve your wellbeing. Now whether that’s just individually or whether that’s across a certain disease, I wouldn’t know, and certainly I think that’s been repeated through lockdown? As I was shielding, you know, I would know by my watch that if I was out gardening all day and walking about or decorating that I was still burning off the calories. But then there were days obviously in lockdown where it’s a bit dull and damp and you stay indoors, and you don’t walk about so much.

So, at the end of lockdown, I’d put on three kilos. I’m now working to get that off and doing some cycling, and how much better that makes you feel when you lose that bit of weight or when you’re doing that exercise.

So, I think that’s one of the major things I’ve learnt, which I think really in many ways I wish I’d learnt earlier in life that, you know, to do a lot of exercise and to motivate yourself not only makes you feel good, but it also helps you to combat all sorts of illness [nods]. So, I think that sums up sort of where I’ve come from.