Yeah, I got access to the counselling because I’m a carer. I was a carer for my brother and mother, what you call a double carer, so I was attached to [a carers’] support group, and I got very quick access to counselling from there. So, I would see them every few weeks, to talk about and come to terms with it basically, and I had to come to terms that I had to look after myself and look after myself especially with this disease because caring probably, obviously came first in my life and I had to start looking after myself otherwise I wouldn’t be around to help anyone anymore. So, yeah, I had to go through about two years of counselling to come to terms with my disease.

It was frustrating because no-one would listen to me. And I kept saying to them, “This isn’t hay fever, this isn’t, this is something that’s happening with my nose,” and, you know, I’m banging my head with pain every night and crying in my bathroom so my kids can’t hear me. In the nighttime, during the day time when you’re busy you kind of ignore all the pain, but during the night obviously when you’re trying to go to sleep you can’t breathe through your nose, you can only breathe through your mouth and the pain is there and none of the strong painkillers are making any difference.

And I could see my facial, like the symptoms and the face was changing my, you know, I looked like I had been punched in the face, my nose was swelling, and my face was swelling. But I just kept being told time and time again that I had severe sinusitis, which is why I had two sinus flushes.

As I say, and it wasn’t until I demanded the biopsy and my nose collapsed that someone listened to me. Which is why I find it so horrific that this is still going on. Doctors are still missing the basic signs. I know most diseases, you know, you have to go through a system, don’t you, of ruling things out, but I do think that doctors should listen to their patients a lot more, and I think, you know, I’ve got a whole list of the two years of every single appointment that I’d been into the doctor’s. They must’ve got sick and tired of me in the end but, as I say, it didn’t really have to take my nose to collapse until somebody would actually, sometimes it’s just finding someone that has seen, somebody who’s seen it before?

Some people are lucky, you know, a nurse or somebody has recognised the symptoms and got it straightway and of course the earlier you catch the disease the better it, you know, the less damage that is done.

There are a few people that I’ve spoken to that have saddle nose deformity like mine, and there’s one very famous lady who has, she has a nose prosthesis is it? Where she actually takes her nose off. It damaged literally took away the whole nose, she just puts her nose on and takes it off.

But I’ve never seen anyone face to face who’s had saddle nose deformity like mine. My nose is now beginning to collapse again, and that’s not due to disease activity that’s just, you know, it just will, they can’t hold it there forever, it will collapse but obviously they won’t do any work on the nose until it’s absolutely necessary. They can only do so much; they can’t keep on repairing it.

But sometimes, like yesterday I looked in a photo and I said to my husband, “My nose is collapsing again,” and he said, “Yeah,” he said, “It’s going back.” It depends on how you look at the photos, you know, if I did a side shot [turns side profile] you know, you can, you can see it, but you know, people are so used to seeing my nose as it now. But it was, the operation that took place, you know, the surgeon did an amazing job with the cartilage from my ear to straighten the bridge of my nose and improve the breathing through one of the nostrils.

You said about doing the sinus washouts, that sounds horrible, what does, [laughs] what does it involve?

Oh, it was, oh, gosh it was, so I have as you may know, I have a bottle called NeilMed, I think it is, which I have to pour sachets into, and yeah, I have to hold my nose and inhale it and then flush everything that comes out, so yeah, it’s not very pleasant and can be quite embarrassing, you know, depending on where you are and things and it’s not something that can be done quietly.

But yeah, without it I’d really suffer if I couldn’t clear my nose from the horrible things that it contains, I’d find it hard to breathe and sleep at night. I think people use different things, people use Vaseline and things and salt or, you know, other remedies that they use to decongest their nose. But no, it’s not the most pleasant of things to use.

And I remember when I had my nose done and it was all impacted with, you know, everything and after that I was really, really scared to blow my nose in case I damaged everything that had been done, I was terrified, but they said, “No, it was fine.” Oh, my god, how am I going to blow my nose with this, this work that’s been done? [laughs].

Then my next ENT appointment arrived with ENT at [name of local large university hospital] and they said that the results of my biopsy had come through and the nas-, because my nose bridge had collapsed, they said it confirmed the diagnosis of limited vasculitis. It was very devastating because I’d never heard of it before. I was told quite bluntly that I’d be on steroids for the rest of my life and possibly on a kidney machine. No apology was given, for misdiagnosis over the past two years.

I was sent straightaway to see the rheumatologist within that hospital. He gave me a thorough, body search, he was looking for rashes, looking at my feet, looking for different things for I suppose the vasculitis, but he also confirmed it was, it was limited, vasculitis and put me on 40 milligrams of steroids, and I was put on a drug called mycophenolate, cetirizine, diclofenac, co-codamol, Calcichew, alendronic acid, so I came out with quite a load of tablets and a shock diagnosis and a leaflet and sent home.

I was absolutely devastated. I had no-one with me at the appointment, and just come home absolutely traumatised because I had no knowledge of what this disease was about but was told it was a pretty, very rare disease. So yeah, that’s how my journey started.

I tried this, various other drugs, they were mycophenolate, cyclophosphamide, methotrexate, so I had been through a lot of them which none of them were working and by then my disease was still causing destruction and damaging cartilage around my body. I had scleritis in the back of my eyes, posterior scleritis. I had, by then I had 40 per cent hearing, tinnitus, saddle nose deformity, achy bones, joints, I had been having a lot of scans.

During July I became unwell and was admitted into [the tertiary referral hospital] with sepsis, I was allergic to azathioprine, which was the latest drug that I was on, so they took me off of that and put me on the next one.

[The tertiary referral hospital] was eventually given permission to administer rituximab in 2011, so for two years they were fighting for me to go on this drug, and during this time the damage was continuing. I was finally given rituximab in 2011 to 2013, which did bring my disease into remission.

But they don’t know how long I will be in remission. Rituximab is a new, is a new drug. They don’t know. Obviously, it affects people differently; some people have to have further treatments. But yes, it’s now, what 2013, is, was my last infusion, so that’s seven years, and off the drugs for two, so it’s obviously the right, doing well for me.

Well, I was interested when you were earlier, speaking about it and quite often it sounded as if you had to be quite assertive? You know, you said, “It was only after I demanded a certain thing,” you know, whether it was a biopsy or a second opinion.

Yeah, yeah. Well, I knew nobody was listening to me, and I knew I, I was deteriorating. Yeah, if I hadn’t demanded this biopsy – although my nose had collapsed by then so maybe they would’ve eventually have come to a diagnosis. Because it is a process of elimination, isn’t it, with all these diseases and they have to get, do these first before they make that decision.

So, it’s very hard. You know I was annoyed with my doctors, furious with my doctors, that they’d misdiagnosed me for two years. And it was only that I asked to be put through to the ENT department as well. You know, after two years of being ill. So yeah, I had to demand everything all the way through really.

And I think, you know, when you go now you have to take notes and you have to research what it is, you know, I think you’ve got to be pretty clued up now, but I think that’s the same for anyone now when they go for a hospital appointment, that they know what they want to say and what they want to ask and go for a second opinion if you’re not happy with that.

I find it very hard to trust doctors now, which is why I acted so quickly when my daughter started to develop ENT symptoms. And I find it very hard to let my kids go to doctors appointments on their own. “Did you ask this? Did you ask that?” you know [laughs]. Very hard.

The other thing, and I did – that I didn’t mention – is that I did wonder where this disease come from, how, where did I get it, I’d always been a healthy person. I’d always had a very stressful life, I’ve been, my brother had learning difficulties, and I, he was seven years younger than me and I did effectively really bring him up and deal with a lot of his health and welfare, and two years before I became ill in 2015, we had some very challenging times with him you know, things like he was even taken to court and I had to fight for his rights in court. So, I believe that I had two years of severe stress and that’s what made me ill.

In 2017 I became ill and so did my mother, my mother was diagnosed with dementia, and she had never been ill. So, I do believe that stress is the factor and the trigger because I think my, I think when you’re stressed you have cortisol levels, and if you have too much cortisol in your body, it depletes your immune system, and I do believe that’s what caused all this, my immune system was so low, that that’s where, where I got this from, so.

I try and live as stress free as I can although, you know, life is life.