Systemic Vasculitis

And I have to, I find, it’s worth saying I actually find myself putting quite a lot of time and energy into explaining that to people. You know, I have to explain quite a lot, that dealing with the kidneys is not the same thing as dealing with the vasculitis because so few people have heard of vasculitis, so few people are familiar with what an autoimmune disorder is. They ask all sorts of questions, well-intentioned, but they ask all sorts of questions about what causes it, you know, what have you done to deserve this, blah, blah, blah, and you think I’ve got, you, the questions just numb your brain because you’ve got no idea how to respond to them. What causes it? Well medical science doesn’t know what causes it, you’re asking me? Good grief you know, and you get very frustrated because you just want to kind of shout at people sometimes, “Just stop asking all these questions. “No, it’s not down to an infection.” No, it’s not, “I haven’t been drinking bleach,” no, I haven’t you know, oh, whatever it is, “I haven’t been taking crazy drugs” or anything. “No, it’s just a thing that happens to people.”

You know, when I was in hospital, in the next room to me was a teenager with the same condition, and on the other side was an 80-year-old lady with the same condition, and at that point I was in my late 50s, so there you go, it happens to a range of people and there’s very little you can do about it. You’ve either got it or you haven’t and it’s either going to flare up and attack you or it isn’t. And that’s it.

I did feel bad at first. I blamed myself. For not realising I was ill. But I went to work. And it must, the walk must have been just too much. I collapsed right, clutching my chest, just outside the GP surgery. It’s amazing, isn’t it? Everybody was just so shocked.

That is something that quite a few people have told me, is that they didn’t realise how ill they were.

No, it’s the silent killer, isn’t it? It is. And anyway, my auntie and my great-niece have both got rheumatoid arthritis, I think there may be a link to it, is there? Yes. So that, I think that probably what was the cause. And some unknown trigger. Like I did work too hard, they said “Jane does the work of two people.” I did push myself because, well, at school I wasn’t very clever. I know, I’m quite IT literate, but growing up I had to work hard to prove myself.

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.

I think the second-year students were sent to me, at home, I had about four, or maybe five of them, who were learning to talk to patients as part of their medical degree.

So that, obviously we made arrangements to meet up at my house, they would come, they, they would ask me loads of questions and, you know, like how I felt and how I had been treated, all this sort of thing, and then they’d write it down and, while I was talking. There, there was one young lady who came to me and she, all the other students used to write it all down, they’d come with a big notepad and pen and whatever, but this one student didn’t bring anything with her. She just sat there and listened to me and all the while I was thinking, “Is she going to remember any of this?”

And then one time maybe about a year or so later she emailed me to say that, “I was very, very impressed with the way your attitude was, is towards your illness. You never asked why it had happened to you, you never, you just accepted it without any questions. And I was, I was in tears about it afterwards because thinking of everything that you’d done, that you’ve been through really scared me, and I don’t think I’d be able to be as strong as you and you know, think that ‘Oh, well Allah’s done this for a reason and therefore, it is what it is.’”

But yeah, I was, she was very impressed, and she had, I said to her when she, I think she either emailed or telephoned, she said to me that, I said, no, I said to her, I said, “All the other students that came to me were writing everything down and you didn’t write anything down.” So, she said, “No, I remembered every single word you said, so I didn’t need to write it down, I wanted to concentrate on you instead of, sort of being sit there and writing while you’re talking. But yes, I’m, I hope you get a lot better soon and, you know, I will be praying for you.” So, she was a really nice young lady, and it just makes you feel a lot better.

And yes, I do have a lot, a lot of faith in my, you know, religion and in Allah Himself. So, you know, the way I see it, it’s sent to me by Him for whatever reason and it will get, you know, [sighs] I’ll stay as well as I possibly can in the meantime, so, yeah.