Systemic Vasculitis

It’s no good making cast-iron plans, really, you’ve got to be able to, prepared to cancel at the last minute [laughs] if, you know, if you’ve planned to go, I don’t know, out for a meal, if I’ve planned to go out for a meal and it’s a bad day and I don’t think I’m going to enjoy it, then I’ll cancel it and go another day.

And I think that’s where it’s hard on your family. Because they probably feel fine, [laughs] they were probably looking forward to going. And sometimes they’ll go on their own to a thing if I can’t go, which I don’t mind. It’s better that than struggling to it.

You know, during the time I was pretty unwell before I was diagnosed, one of my daughters got married and I was so worried about what I would be like if I’d had a bad day, [laughs] but I was lucky, I had a good day. But that can be frustrating because there must be people who have a bad day when it was a really important day to them, and that’s never happened to me, but it must be hard when it does.

I do my housework and I cook meals. Obviously, we, being Gujarati we also eat chapattis with our curries and, I, at one time I was finding that very, very difficult to do them because it would just cause my, obviously you’re rolling the dough, so it would just cause my arms and my shoulders and everything to ache so much. So, you know, even though I’m taking the nortriptyline for the fibromyalgia, which is I think a painkiller, and on top of that I, when I need it, I take paracetamol.

But yeah, I, some days I can do nothing more than cook a meal. Other day I can do some hoovering, cook, partially cook a meal or some, you know, something easy. If I’m feeling a bit tired and that I will make something easy instead of, you know, sort of doing something that’s going to take a long time to do basically.

But I have also found recently in the last, probably last year that I’m getting quite slow at doing, it takes me twice as long to now cook a full meal like chapattis, curry, sometimes rice. I find that it, it takes me a lot longer. I mean before we used to have our lunch at lunchtime, now we have a late lunch at 3.30/4 o’clock, so, which is cutting out a whole meal, and also, it’s the only, that’s how long it takes me to get my meal cooked, especially if there’s chapattis to do then it takes me even longer.

I’m, and I find that even in the mornings I’m a lot slower than I used to be. By, by the time I get up, I’ve had breakfast and sometimes I’ll have a shower in the morning before I come down, but if I have a shower then that means if I, if I went in the shower at 8 o’clock, and by the time I’ve, I’m ready to come down it’s probably nearly 10 o’clock, it’d be about quarter to ten, 10 o’clock. Obviously before it didn’t, it was not like that.

I find that no matter how much I try to get a meal cooked by 1 o’clock it just doesn’t happen.

And so, at the turn of the year I just felt, I felt more able to kind of do things. I’ve had the treadmill for a long time, my sister gave me it after this happened, and I have tried to do it on the really low setting and I just couldn’t do it, really sore and tight and pounding and just, just a difficult thing to describe I suppose.

But at the turn of the year I thought, “Right, I’m going to really try and persevere, even although I know it’s uncomfortable, if I could just get through that,” and it, it took a long time to build up to this half hour, and I have got the rails that I can lean on or hold on, in fact I was bruised because [laughs] I was trying to do a bit of this [mimes moving arms on treadmill], you know, and I was really wobbling so I was kind of trying to keep a centre position, but with wobbling I was battering off the sides so I had these bruises right up my arms so I thought maybe that’s not going to work, so I do try and just gently rest on, I hold on to one and I get this arm [laughs] going and I hold on to the other.

But I do 30 minutes now and I’m just so happy, I feel great when I come off it, you know, and I have noticed a real difference in my calves, and I think, I just think, lockdown probably did help with it as well though because I was in all the time, you know, there was lots of different things I was trying to do, I didn’t want to sit about, I did lots to the house as we, I’m sure we all did, clear out things and kept myself busy with, with lots of different things. But I did persevere with the treadmill a bit more than, I just love it now, I really do, I feel so much healthier coming off it.

I am a bit disappointed that the weight’s not coming off, that’s something that I really thought would happen, I just thought well it’s, if you’re doing more exercise, burning more calories, surely the weight would come off and it just isn’t. It hasn’t moved at all, it hasn’t budged, so, that’s the only really downside.

But I just feel much better in myself, feel, I feel back, well more, it’s funny because I do feel more like me again. It’s taken a long time to get back to that, you know, but, and I do feel more like me. Yeah. Yeah. I feel more, it’s funny, I can’t really explain it but, you know, just back to me again.

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].

Like the mornings are a nightmare. I feel as if I’m in a coma. Now that’s the bit that people don’t understand, they’re saying, “For goodness sake, do you have to spend like half the day in your bed?” I made sure the interview was at two o’clock today because it takes me so long to come to. Physically and mentally. And I can hear things going on but it’s like I’m imprisoned, and I can’t rise out of that depth of exhaustion. So, it is like being almost in a coma. So, I’m not moving but I can hear what’s going on. And if somebody comes in to talk to me, I can barely speak. So, it takes me quite a long time to actually wake up.

And the other thing is sometimes I do too much, and it means that then there’s – hell’s coming, yeah? And I know after I’ve done it, I’ve done too many things, I’ve said, “I think I’ve done too much I’m going to suffer for this.” And sure enough, [laughs] the following day you’re walking about like a washed-out rag or sometimes you don’t get out of your bed at all.

So, there’s fatigue and there’s fatigue, that’s fatigue caused by over-exercising. I know some people struggle with fatigue, getting up in the morning makes them fatigued. Initially I did suffer from fatigue earlier and people would say to me, “How would you describe fatigue?” and I says, “Well if you, if you can imagine getting out of your bed in the morning and putting on a suit of armour, chain mail and try to walk through the house wearing a suit of chain mail and you just collapse on the sofa because everything’s just weighing down your body and you’ve no energy to get back up again,” I said, “That’s how I would quantify fatigue.”

Now being tired after, you know, pottering about in the garden, that’s just tiredness, whereas fatigue is something that’s really, really problematic.

Some people have talked about courses in fatigue management that they’ve been put in touch with, have you ever had anything like that?

[Shakes head] no, because again, fortunately until about, you know, earlier this year I was still going to the gym a couple of times a week. So I was, so I would go at a pace that I could manage, so fatigue has never, apart from the early days when I didn’t quite understand it, now the fatigue for me is manageable and it’s, I can, I can deal with it because what happens now if I over-exercise or something like that, if I do something too much I just stop and sit down and just give myself time to recover. Whereas going way, way back years ago, I would keep pushing through it thinking, “Well I can do this,” whereas now your body tells you, “It’s time to just take it easy.” So, I can deal with it quite, quite easily.

And instead, it becomes something that’s more a warning that things might be …

Yes, yes, and I can go, honestly, I can go for weeks without feeling fatigued because I know how to deal with it, I know how to manage it, I know what the limitations are and, whilst I’m saying to you earlier that it’s, that the only thing just now that manifests itself, it only does that if I ignore it. You know, in other words I know what my limitations are and, you know, I, I can manage, I can manage quite well.

Well, I guess the mental health that comes with cognitive challenges, the fatigue though, the fatigue is the cognitive, that, you know, that really messes you up. It gets dangerous, the fatigue. It did the other week, I did too much and there were, I, things that I hadn’t anticipated made it more difficult. And I went, well I did more than I should have done and then I just couldn’t function at all. I couldn’t make decisions, I couldn’t do anything, and I’ve been in that situation a lot in the early days, ended up just sitting in a chair, not really knowing what I needed to do.

And I mean now I know if I’m approaching those kinds of fatigued times, and this is if I’d have been aware – I guess I just couldn’t have anticipated last week but it was blooming difficult. But even then, I knew that before I sat down, I needed to get a drink, I needed to get my phone, I needed to make sure I’d gone to the loo and I needed to have something to do with me, so I had my bag of stuff. And if I had that, then I would be okay just to sit for two, three hours. But in the early days, I’d sit there for three hours, doing nothing, watching it get dark. And now I can’t see very well, you know, beyond – I have to have my glasses on, so I have to remember glasses and hearing aids and... [laughs].

You mentioned earlier about this, you don’t want people to treat you like a porcelain doll, I just thought that was such an interesting phrase. Have you felt or do you feel like a porcelain doll?

I’ve certainly felt that way in myself, particularly before I’d started the immunosuppressants and sort of the slightest thing could trigger a flare up and sort of the things that I would attribute it to, which are probably more like a build-up of things moving towards that sort of single final straw, but when it happens it feels like it’s that final straw that’s the whole thing. Things like not having a nap on a particular day when I should have and doing something like trying to go out with friends instead and then having this huge flare up and thinking, “Oh, if I just hadn’t done that maybe it wouldn’t have happened.”

But no, it makes you feel really fragile, and you feel like all these other people around you can manipulate their bodies in certain ways, if they’ve got like a, a big deadline coming up with work or study they can sort of push themselves, but sort of that, that one push too much with me and I crack, and everything goes wrong and then I can’t do anything.

And sort of, the metaphor of being a porcelain doll sort of sums it up really well, yeah. And then even more so after the infections started, knowing that I just needed to do one little thing like go swimming or, not being close enough to a toilet at a particular time and sort of think, “Oh, I’ll wait to go home to go to the toilet,” and then getting an infection, and it’s all these just silly little, little things that then have huge impact. Well yeah, I’m not sure if it is the little things, it’s probably more like a build-up of things, but it always feels like something is the final straw.

You spoke, a few times you used the word I ‘soldiered’ on.

Yes. [Laughs] yes. Yeah, probably in the early days when vasculitis keeps, seemed to keep coming back to me and biting me, you know, with the osteoporosis and the shingles and the this and that and the eyesight and everything else, it was almost like it was a daily fight. Get up in the morning and put your gloves on [laughs]. Right, so, how’s it going to get at me today and how am I going to fight it off? So ‘soldiering on’ I think really comes from that.

You know, when I was like that, you know, consult the clinicians and the medical people, they’d say, “Right, do this, that and the rest of it,” so I’d go, “Right, okay.” You know, so if they told me to do it, I’ll do it, and I’ll do it to the best of my ability. So yeah, they were, there were a lot of times, even now, but certainly more so maybe back then, that I would soldier on, you know, I’m going to fight this. I’m not going to let it beat me. And I think that’s where that sort of expression comes from.

Again, there was a very nice – I like metaphors in general, and there was a very nice metaphor. There was one person who is saying, you know the theory of spoons, imagine that your energy is a number of spoons, yeah? So, I only have ten spoons, yeah? Each day. Now, I, if I use all of those ten spoons, and people, some people might use all of those ten spoons by just taking a shower, or by just cooking something, or by just taking a short walk. If I borrow a spoon from tomorrow and I use 11 spoons on the day, then I’m going to have two days with three spoons each day. So, my, I need to make sure I sit in those ten spoons, I need to make sure I don’t push myself because if I use more than those ten spoons… If you, a healthy person, if he uses more than ten spoons, he’ll be fine, you know? The next day he’s going to be on nine spoons, he’ll be fine with nine. But a sick person, no. 

So that’s the thing they don’t understand, and they don’t… It’s, until you live it, I think it’s very, very hard to… And at the same time is very scary to… When I came home, like, not being able to cook, you know? I cut the vegetables and that’s it, I need to sit down. And sometimes I just sit down, lay down and I fall asleep. In the middle of the day. That was after, in 2019, when I just got out of hospital. So, it’s, it’s frustrating, it’s really, really frustrating in this perspective [sighs]. But hey, you know? Yeah. That’s, I don’t know, that’s pretty much it [laughs].

I think the only part that I’ve got which was my last thoughts that I’ve popped down there, was that you’re, you’re continually adapting to whatever the next day brings and planning and processing is, is probably the key to that, which is what makes things work. It’s one of the sorts of cogs in the wheel. The negative of that is that sometimes your brain can’t switch off because you know that you have to plan things really quite specifically, but also knowing that whatever plan you’ve made, something’s going to crash into it and that plan’s going to go haywire, so you’re going to have to go plan B and then C and then D, and then just keep working your way through? So even though you’ve planned it so well in your head to prepare for the event, you have to, also have to have flexibility to know that it might not well go to plan, you know, so.

So, you’re constantly adapting, all the time, which, depending on your levels of fatigue, can sometimes just seem more effort than it’s worth. You think, “Hmm. Do I really want to go to my niece’s birthday barbeque?” because there’s have to be this whole chain of events to get to that. But you really want to go to your niece’s barbeque, because she’s your niece and you love her to bits. But what will come along in between you starting your planning, your preparation - which could be the week before – and the actual day of the event. So, you can have that conflict in your brain sometimes. To get to that point.