I did have a bit of distortion I’d forgotten about, and I phoned down to the hospital and spoke to the consultant. And she says, “I want to see you –” it was I think a Friday, this was – “Monday morning at nine o’clock.” And she says, “If you could get the optician to have a quick look at your eyes just for – if there was anything else wrong, to clear anything else out, not an eye test.” There you are, I’d forgotten about that. Which I did, my optician. I think twice, I must have had a slight distortion. Now it’s coming back. But then it’s, what, two and a half years since I started with it. And he always gave me a quick appointment too, before I got down too, that was when she always gave me another scan. That’s, sorry, it’s coming back to me. I got the initial scan and the twice where I felt a bit of distortion in my eye, I then got other scans. But that’s quite a while ago.

And you also got – continuing the theme of speedy appointments – your optician, another member of your healthcare team who works in a completely different setting, was also somebody that gave you quick appointments?

Yes. Actually, when I went, the first time it was to get an eye test and I said to him that I had giant cell arteritis, he got his book out and read up on it. He says, [laughs] “I don’t think I’ve had anybody else in that has said that.” So that was when I had a bit of eye distortion, but I haven’t had that for a long, long time.

Oh, I haven’t had any difficulty in coming to terms with it. No, none at all. That, I don’t dwell on it, because I know everything’s under control. That is the main thing. I know it could be a very serious condition if it hadn’t been managed, but I’m not in the least bothered, it doesn’t worry me in the slightest. That, no, I can’t say I worry about it at all.

I could nearly forget I’ve got it if I didn’t take the pills every morning, I would forget I’ve got it. I couldn’t have any better comment than that, on how it has been managed. Or maybe it’s just, maybe it’s just, I was going to say nature and probably the upbringing, where you just coped with everything. You don’t think, “Oh, that could have happened to me,” or that, I just think, “No, it didn’t happen to me, I’m the fortunate one.” My mother wasn’t so fortunate, she lost the sight in her, her eye with it, so things have moved on so much more since then. She didn’t know, they just said it was a mini stroke with her. So no, it hasn’t impacted in my life at all, other than I wish I had enough energy to play 18 holes at golf without a buggy [laughs].

What if something happened? What if, I don’t know, what if you got a terrible headache again? What would you do at that point?

If it was a terrible headache, I would monitor it for a short time to see what it was, and I wouldn’t wait too long. Because, at the beginning, before I got to the hospital, the GP said that if I got anything like that or disturbance in my eye or anything like that, if the surgery was closed, I’d to go to A&E. That bit – I forgot it, that bit, that was way at the beginning. At the beginning, they told me to do that.

So, you were quite clear, even at the beginning, that this had the potential to be a medical emergency.

Yes. I was told headaches, eyesight, jaw, sort of if the, I’ve not really had much bother with that, but I was told if anything like that happened, I’d either to get the doctor or to go to A&E. I’d forgotten all about that, sorry.

Yes, it came out of the blue. I just sort of, I think, wakened up one morning and could hardly get out of bed. That my husband came round and was pulling me sort of up out of bed, and I did manage to go down to the doctor’s, he took me down and I got a quick appointment and I managed to go down there, feeling really quite, wondering what on earth had happened to me [laughs]. But as I say, it was straight on to steroids, which I’m very grateful for.

And, but I really did quite well, I can’t say I was feeling very, very ill or anything like that. I had the usual things when you go on to steroids, falling out with my husband, falling out with my son [laughs]. They couldn’t keep me going in sudoku, I was flying through sudoku, but that quickly, that quickly went down, and I got back to my old nature again [laughs].

Did the steroids make a difference to the headaches?

No, they didn’t. It took, took a wee while before – I think they eventually did, but it took me quite a few months. I can’t remember now whether it was when I got on to the methotrexate or not. I can’t remember, I’m sorry about that. And the headaches – I’m not bothered with the headaches now. Haven’t been for quite some time. The consultant did tell me that it wouldn’t be a quick cure. It would be, she didn’t say how long, but as I say, that was the end of 2018, so it has taken a little time. But, other than fatigue, I don’t find it restricting me at all.

And what about the polymyalgia side of it? Do you still have symptoms of that?

No, no. I don’t. I haven’t had that for quite a long time. That, no, the steroids seemed to take care of that and I’m still clear of that. I occasionally – but very seldom – I’ll maybe get a slight feeling here [touches both temples] and I do take note of it. But it hasn’t happened for fully a month, and it never lasts any time. Very short. But I don’t really have a lot of trouble at all, I’m really very, very pleased with the way everything’s going.

[Laughs] I wondered what on earth had happened to me. Just all of a sudden, my husband had to help me to get out of bed. It was like polymyalgia. And I was really, was very sore, [laughs] so I managed to get a quick appointment at the surgery, and I got a young doctor, I think just starting. And she thought it was that and she said, “I’m going to get the senior doctor to have a look at you.” So, she passed me on to the senior doctor in the practice. And he agreed that steroids, which she had suggested, was the right thing to do.

So, I attended him every week, I had to get blood tests taken and he was watching the inflammation on the computer. And the steroids, oh quickly got rid of the pain, it was very good. But I was left with headaches. Every night, I was sitting up with headaches.

So after, I think it was four, five weeks, he said, “I’m going to get the local hospital, I’m going to refer you down there.” So, I got a quick appointment, that quick I said to him, “I think I’ve got a cancellation [laughs], I’m going in Monday. Nine o’clock.” He says, “No, I asked for the urgent appointment for you.”

So, I saw the consultant and she immediately gave me a scan, so that was done right away, and I had a consultation with her.

Yes, it’s like the baby scan, that’s a, the gel one? And she does from my shoulders, over my head. That, I’ve had three of those.

So, what, are you lying down or?

I’m lying down and she, you know, she puts the gel on me and goes over it and watches her computer. I just see bright colours and everything but she’s watching it. Oh, and the last time I was down, the nurse said to me that that consultant no longer needs to do biopsies, she’s very skilful that she can do without. I don’t know how she does it but, whether it’s all with scans, I don’t, I don’t know.

So, this is like ultrasound scans?

Yes, yes.

Yeah, right, okay. And do you, you said you did have a biopsy?

Yes, I did.

What do you remember of that?

It was two nurses that did it, who were trained to do it. And there again, it was just a, an outpatients’ clinic, and it must have been at least half an hour. It was done down the side of my hairline here, [points to right temple] but afterwards there was nothing, after it healed, there was nothing to see. And I could hear them talking, I could feel them pressing – no pain – but I could feel them pressing as they were trying to get the part they were wanting. It seemed to be very small, what they were trying to get. That, and them discussing it, saying, “That wiggly bit, try and get that wiggly bit,” [laughs] you know? And that’s all I could, you know, I could hear. That, there again, the gel and everything was on, that, you’ve to wipe it all off and get your hair combed [laughs]. But no, it was a nurse, two nurses. One was sort of instructing the other one how to do it. So. That must, whether that confirmed that’s what it was, giant cell arteritis, I don’t, I think so.