Living with CIDP: David Watts' Struggle with Autoimmune Disease and Treatment

Well, what can I say? Good morning, hello, it's good afternoon, good evening, depends entirely on whether you're watching and listening and at what time and where. So welcome to another edition of What's Involved. As I said, this is where this what's gets involved with his own life. So I've been sharing my story with you and it's not, my story hasn't ended yet,

but we might be approaching the end of the beginning. So the last time that I chatted to you, I brought you up to date, which basically brings us up to, I think, April, May, last year, that being 2023, I'd just been diagnosed with something called CIDP, chronic inflammatory demyelinating polyneuropathy. It is a mouthful, that's probably why they call it CIDP. Also told that I have, what do they call it? Idiopathic necrosis in my left hip. So in other words, no blood supply there. I think they call it idiopathic because they don't know what causes it so they're idiots. Anyway, just my opinion. So that's where I left off. So the treatment at that stage, I was told that I would need to have something called polygam and to start off with, I'd have to go into hospital for a period of five days when they would pump me full of polygam and monitor me the whole time and see how everything went. And look, the neurologist was upfront with me, okay? She said to me, there is no cure. The best we can hope for is to slow it down or to get you to go into remission. Obviously, I'm a fan of remission at this stage.

So what happened is I duly went into hospital, did five days of polygam. Again, can you imagine somebody with ADD having to lie in a hospital bed? No, didn't do so well. I quickly found a sort of sneaky exit where I could get out of the ward, lugging my drip stand along with me and go and sit outside and have a cigarette, have a smoke. Yes, I know, I know. All the naysayers, oh, smoking kills. Well, at this stage, smoking is gonna have to take a number and get in line, okay? And I used to call that my office. So I told everybody in the ward that that's my office. If they needed me, I'd be in my office. This is where one of my first great learnings came in as well, though. Because if you ever, ever are sitting around thinking how much your life sucks and how bad it is, spend one night in an oncology ward with people who are in end stage cancer, whatever the case may be, just one night. And I promise you, you will have an absolute newfound gratitude for where you are. And that's something that I'm gonna be discussing as we go along. - Your Nedbank online banking session will time out in two minutes, 50 seconds. - Oh, I don't know if that came through, but just told me that my online banking, well, let's see, let's see what happens.

(laughing) Oh, it's sod's law. Just when you think nothing will go wrong, it does go wrong. It's a bit like laugh. Anyway, so where was I? Oh, yes. I was saying to you that that's one of the learnings, okay? Is this whole idea of nothing is as bad as you think it is. And there's always people that have it way worse than you. So, you know, and the way I look at it, in terms of what I've learned with the CIDP so far,

I'm better than most, worse than some. It doesn't seem to keep score okay. You know, and it doesn't matter where you come from or who you are. You know, I tried having a chat with it and saying to them I was a very important person and just didn't work. Anyway, so did the five days and came out of that and I was told that the initial treatment phase would be six months. And I came out of that and suddenly I started to experience some really weird things. Like some of the side effects, okay? The general ones is you can feel nauseous and you can get headaches. I've got that. I get that when I go in. And the best way to describe the headache is if you've ever had tick bite fever, it's that kind of a headache, okay? It feels like somebody's trying to peel the top of your skull off. But then other weird stuff started to happen. And the weird stuff that started to happen was inside my ears, all the skin got dried and itchy and everything. And then my hands got all these tiny little bubbles on them. And those bubbles then sort of, I don't know, concept popped really, but those bubbles, yeah, broke open or whatever. And I literally started with the skin coming off, but not like when you get sunburned.

Okay, this was like two layers at least. We'll get to this, but if you can see, can you? I don't know.

Oh, there you go. Maybe you can see that. So that's where it is. And this is about as good as it gets now. So I phoned the neurologist or a male do. We don't do phone calls with her. And she said to me, "That's very interesting. "I've never seen that before." So I promptly took a photo of my hand, sent them back to her and said, "Now you have."

And then every six weeks from that first five days, every six weeks, I was supposed to go for a polygame treatment, which I duly did. But in that time, my hand kept getting worse and worse and worse, and I said to her, "This is not good." Incredible fatigue. I don't know, there's days when I can hardly drag my ass out of bed. Some days I don't even get it right. Some days the concept of showering is just too much for me. The pain was still there. And I need to discuss my experience of neuropathic pain. Because these nerves are short-circuiting or whatever, the best that I can come up with is nerve short-circuiting. But my feet and legs send me pain signals, 24/7. Although because of this disease now, I've lost all sort of feeling in my feet. So if you say to me, if you pressure off it and say, "Is this hot or cold?" I have no idea. However, the nerves are continually sending these pain signals to my brain. So it can be anything from like mild pins and needles to electric shocks that literally cause my legs to jump, to the feeling that my skin is like four sizes too small for me, to the fact that if I walk, it feels like I'm walking on chunks of broken glass or hot lava. What else? Oh, a very interesting one is sometimes it feels like somebody's grabbing my feet with a pair of pliers and squeezing.

And this is the thing. And I was actually chatting to somebody yesterday and shout out to an incredible artist, Diane. If you'd like to check her out, I suggest you do. She's also got now multiple of these autoimmune diseases and it's affecting her vision, et cetera, et cetera. But we were chatting and I said to her, "The worst thing is people look at you. I mean, you can see me now." And you'll go, "Well, you look okay. Doesn't look like anything's wrong with you." And that's the worst part, I think, because you don't, it's not like you're wearing a big plaster cast and you've got scars and stitches and all sorts of things like that, because for the most part, you haven't. So what happened with me is after, going back now, after going through the first five days, I felt terrible for about two days, three days afterwards. And then I start to feel better and better, get to a sort of plateau, and then I start to feel worse and worse. And then we do the polygame again. However, and this was the thing I spoke to the neurologist, new neurologist about is I was feeling worse and worse. So the pain was getting worse. The brain fog, I can sit in front of this computer and not have an idea of what I want to say, which is why I'm recording this now.

It's a Saturday morning, because I'm feeling okay right now. But I can't ever make any commitment to say, "Yeah, I'll make a plan. I'll do it for you on Thursday." 'Cause Thursday might come and I am man down. So what's happened is she started to give me medication to deal with the pain. I am now on currently three different kinds of medication.

I'm on something called tripline or tripline. I don't know how you pronounce it. What else am I on? Lyrica. And somvolta, that's the three of them. And all three of them are fairly large doses. In fact, people that I've spoken to, you reckon that that much pain medication should put me flat on my back. But obviously I didn't get that memo. But that's a lot, okay? And I know it affects me. I know it affects my sort of desire to do things. So it's a trade-off now. So I've gotten to the stage where I've kind of gotten the pain stuff down to where I can function a little bit and the pain is manageable. But as I get to the end of it, it's not any better. So I brought up until December last year, I kept saying to these guys, I'm feeling worse and worse and I'm not getting any better. So they redid the tests and put me on the bed again with the, what is it? It's not shock therapy, I always say it is. But that nerve test thing that they do, the other thing that you get with this is, I've told you, brain fog, quandromember stuff. I call it CRAFT disease. Normally pregnant women get it. Stands for quandromember thing. So CRAFT disease is what I have now as well. I did start to call this illness mad car disease, but nobody saw the funny side of it except me.

So I'm not gonna do that anymore. So did all the tests again and there was like minimal improvements in nothing in my feet and legs, no improvement there and minimal in my arms and fingers. So I went for my technically the last poly game.

Treatment that I was supposed to get the last of those in December, this past December. And I went to bed earlier because I thought, let's at least try and have a good Christmas.

Needless to say, that didn't happen. Things just got worse and worse and worse. There was no bounce back. I didn't feel better. I just felt awful all the time and pain 24/7. You gotta remember anybody that's suffering with neuropathic pain, it is quite possible that they have pain 24/7. And unless you've experienced it, don't ever judge. Let me tell you, don't ever judge somebody that has got neuropathic pain or any autoimmune disease in fact, 'cause you've got no idea the kind of battle that they're fighting. And this is the hope with me changing my focus and what I wanna do now is that I can get people to start talking about this. There are so many people, I was one of them. You get diagnosed with this and it's almost like a dirty little secret. And you can't really talk to other people. You don't know how to address this. So that's what this is about, okay? The podcast, the videos. I'm thinking of doing a Facebook group. I'm thinking of that. Don't know how well that works, but I'm thinking of that old person here. So I battle with these things. But I wanna create a place where we can talk about this and with people that are suffering. And I do mean suffering, okay? With this disease or these autoimmune diseases and family and friends, that we can come together, bring it out into the light and talk about it.

Because I know, one thing I know is how hellishly expensive treatment is. And that's something that I worry about as well. But we'll get onto that. So for now, if you have made it this far, thank you. Thank you, I really appreciate it. Don't forget, you can go and leave a review on my website, which is www.watts. That's W-A-T-T-S, wattsinvolved.com. You can leave me a message there. You can leave me a voice note. And if you're feeling particularly generous, there's a little button on the left-hand side that says, "Buy me a coffee." Hopefully it'll go some way to alleviating some of the sort of financial implications of doing something like this. So if you find it of value, I'd really appreciate it. If you could pop out there, buy me a coffee. Check out the website. If you're watching this on YouTube, please like and subscribe. That brings us up to almost, as I said, the end of the beginning. Next episode, I'll chat about the latest developments, and then we'll sort of take it from there. But to each and every one of you, be kind, take care, look after yourselves, and thank you for listening or for watching.