Episode 258 | Living with Illness: Updates on PolyGAM, CIDP, and Daily Struggles |

David Watts [00:00:00]:
What do we say? Once again, welcome. What's involved? It is what is today? I always get myself confused. Look up at computer. It's, 12th, so it's a Wednesday. Wednesday, it is now. I went, into hospital, and I posted the big Facebook post about, all the things that were going to be happening to me whilst I was in hospital. One of the things was that, there was this sort of mix up with my polyam, and one of the earlier things that, happened was I thought there were 6 treatments, within a period, and there were only 5. And then we suddenly got a letter from them saying no further authorization for PolyGAM, which is the thing that, that kinda helps me.

David Watts [00:00:53]:
So there was a big panic and a scramble for that. Eventually, we got it, we got it approved, and it's now every 4 weeks. However, things were getting quite bad, which is why I haven't managed to record for a bit. And I was feeling like the proverbial bucket of squished snails and not really wanting or able to do anything. Unless you've got something like this, it's very hard to describe. I keep I keep saying to to to Lena and, again, it it kinda feels like I'm just dying slowly. Like, everything just doesn't wanna work. It's horrible.

David Watts [00:01:37]:
Anyway, Friday, you know, I went, and there was the usual hospital fun. And you can't go into hospital and not have hospital fun. So I ended up, in a room with, it was in another ward, not the oncology ward. I think it was a surgical ward with, 3 other gentlemen who had had surgeries, and they spent a lot of time talking about religion and about the the the takes on religion and what, what what sort of, you know, the the the they had, like, a verse for everything that happened and why? Because of this that this happened, and why? Because they'd been bad people. He now one now had to have a a growth removed from his liver. And it did get me thinking, and and and one of the thoughts was, if this is true that you get punished for that, yeah, and number 1, I should have been dead long time ago. But, number 2, why have this malicious being that wants to punish you? So I didn't necessarily agree with the the discussion, so I didn't really join in because my views are slightly different. I don't see the universe, call it what you will, as this vengeful vengeful entity.

David Watts [00:03:17]:
Anyway, so during the day, and you may have noticed the long sleeves. Winter's here. We went from summer to winter. I went in for an MRI. I went in for a CT scan, and I went in for a what is the other thing called? See, the brain's still not back together again. Ultrasound ultrasound to see if they could find out what was what else was wrong. And then they also took I think I counted probably about 15 vials of blood. I'm sure they got a side hustle supplying vampires or something.

David Watts [00:04:09]:
But, anyway, so all of that was done, and, that took a lot of time. And to mess with my OCD again, instead of going on in on a Thursday like I like to do, I went in on a Friday. So that's why I had to check earlier what day it was because I had no clue. I still have no clue. Anyway, all of that was done, and, my neurologist was very kind. I don't know if it was because I was just a bit shouty or what, but, she actually, unless there's an emergency, doesn't work weekends, she came in on Saturday to see me and say that, you know, they are 1 or 2 areas of concern, but for the most part, things are looking good. The irony is my heart's fantastic. My lungs are, for the most part, fantastic.

David Watts [00:05:05]:
I have, on the on the on the, MRI, there's some white spots on my brain, which you said could be caused by the CIDP, old age, or diabetes. So there we go. Effectively, I have block on my brain. I'm gonna have to do some mental flossing, I reckon. Anyway, so that's enough of that. Got home on Saturday. Still felt okay because I was pumped full of all the medication, and, they give you something called Perfelgene, which which just helps in coming from nausea. So I thought I'm doing okay, but I expected Sunday to be bad because the 2nd day is generally bad.

David Watts [00:05:52]:
Surprisingly, it wasn't. So in my internal optimism, I went, I'm gonna be okay. And then yesterday came around, and all of those symptoms came back to me with a rate of knots, and I felt terrible. Why am I telling you all of this? Well, because it feels good to share so that if you've been going through something similar, then you know what the story is all about. But, also, I figure and, oh, and there's a whole thing in the medical aid where they might be revising PolyGAM for, in terms of treatment for CIDP. So I don't know what they're gonna give me after that if if that thing goes through. But, anyway, so far, very grateful to the medical aid because they've they've paid for quite a lot of stuff. Oh, and then yesterday, on top of feeling crap, yes.

David Watts [00:06:50]:
That's it. I had to go for a gastroscopy and, another skin biopsy, this time on my lower leg. The duxicum growing colonies of beans there. And, the nice part about that, he says, I think nice for me, maybe not so nice for other people, the nice part of that for me is gastrostropies these days get done under anaesthetic, but it's like sort of deep anaesthetic. It's a light sleep anaesthetic. So the anaesthetist is there. She says, keep your eyes open for as long as you can. My competitive goes, watch how long I can keep my eyes open for.

David Watts [00:07:36]:
And the the next second, they're going, mister Watts, you can sit up now, and, as soon as you feel better, go to the, the little recovery chair. And and my fiance was waiting for me. And when I'm in an ins like anything medical like that, my instinct is to get out, okay, is to leave because those places are for sick people. So I managed to fumble into my shoes and stand up in, in in what, to my mind, at that stage was I was perfectly fine. And, I went to go and find Helena, and we came home. The funny thing is the aftereffects of that particular, what do you call it, anesthetic, is that you think you've woken up and everything's cool, but actually, you haven't. I can't remember how many times I asked what day it was, if they were finished, where we were going, what's happened. I think I showed the poor woman the dressing on my leg about 6 times, and each time, it was the first time for me.

David Watts [00:09:05]:
And I lost I lost today in there as well. I almost get hurt to describe what it is like one day, living a day in the life of Helena living with David, who also gets, like, word salad and can't remember how to word or how to brain. That's quite interesting. But what we have decided and, Elaine has been brilliant so far in helping me out with this, is, obviously, I've mentioned before, I'm a I'm a diabetic as well. And since December, I, for love nor money, have I been able to control my diabetes. It's been up and down like a yoyo, and that doesn't help. Okay? That also complicates everything. Excuse me.

David Watts [00:09:53]:
It's coffee. Damn fine cup of coffee. So and this is a lot harder than it than it than it than it sounds, okay? Cutting out carbs, all carbs. We we were told also maybe gluten free. Maybe I haven't looked hard enough, but I haven't found anything that is carb free, gluten free together. So that could be a challenge. Anyway, all carbs, all all forms of, sugar, and I must say the guys have been amazing. I've had some really good, really good food, and, that is what I wanna stick to.

David Watts [00:10:46]:
So part of this is what's happening. I've now got 6 months, and in those 6 months, I'm gonna get a treatment every 4 weeks, but I've got to I've got to transfer it, figuring this stuff out as well. So the diet is the first thing that's going. So mornings look like this, a, a a no carb protein shake, which is quite lekker. Afternoon lunch is a salad, and then dinner is something that involves a protein and, possibly a salad or a vegetable 2 vegetables with no carbs at all. What happened, and I've joked about this before, is, they made me stand on the scale when, I went into hospital. Now when this whole thing started, I was just just over 100 100 kilograms Okay? I know I don't look it. I always tell people I'm big boned, but, it then moved on during the course of last year to a 110 kilograms.

David Watts [00:12:04]:
I could still justify that in in my mind. The weird part is is that with the stick arms and the stick legs, there's only one place those kilograms are going. Okay? So maybe I can audition to be the Michelin there. But I weighed a 118 kilograms. Okay. Now if you think of the size of a 500 gram block of butter. Okay? So 2 of those. Okay? Now you work out what size 18 kilograms of those are gonna look like.

David Watts [00:12:46]:
That's on me, So we gotta sort that out. So, as soon as I'm up to it, we're we're going back to walking. I've been looking at this chair yoga thing to see if chair yoga is a thing. I'm assuming you need to use a chair without casters on. How do I know this? Well, I may have experimented one day when nobody was around and fell on my ass, but, that's that's what I'm I'm thinking. Meditation. Meditation, I believe, is, is key to this whole thing. So at the moment, I meditate twice a day.

David Watts [00:13:35]:
I was gonna say 3 times a day, but most so normally it was, like, morning, in the afternoon, and then at before bed at night. But, before bed at night, I just pass out, so that one doesn't count anymore. And I'm I'm I'm at about 20 minutes now, and it's a mission, okay, to keep this little monkey mind of mine quiet and not thinking about things and focusing on, my my body healing and feeling better and all of those things. So the plan going forward is obviously the mindset, the the the way I eat, the meditation, and the exercise. And I also think it becomes too easy to to sort of succumb to the the disease or the diseases, and and you don't want to do anything. Okay? I've never been a particularly sociable person. You know, don't don't think that I was, you know, one that loved to go out and stuff like that. But when I do, I was the life and soul of the party.

David Watts [00:14:49]:
Again, now the crowd gets here, and I generally go to bed. So I wanna work on changing that, and I think that's a mental thing because I think interaction with people is good. So that's my plan going forward, and I'm and I'm figuring out and thinking about how I'm gonna share this with you and tell you and tell you what works and, what doesn't work. As I said, they're still checking for other, possible, what do you call it, Diseases like CIDP. Autoimmune disease is my my prompt from the from the left there. Autoimmune diseases. It it seems like they've settled on on myasthenia gravis. This could change, but there's definitely something else going on.

David Watts [00:15:53]:
So, essentially, I get stitches removed from my leg next week, Tuesday, and the the the the doctor, the surgeon will talk to me about those results. Hopefully, before then, I'll get more results. But I'm just I'm thinking about how am I gonna share this kind of stuff with you because I can't promise you daily updates. And, I'm certainly not going to stand up and show you fat belly and then show you how fat belly becomes less. But, yeah, just wanted to give you an update today. I feel a whole lot better. I feel more positive. I managed to get a good night's sleep.

David Watts [00:16:36]:
Didn't rip my sleep apnea mask off, so that means I got some decent oxygen. I also wanna explore some other the other therapies during these 6 months and see, you know, is there a benefit? What is the benefit? Effectively, I'm turning myself into a human guinea pig. Some people would say that would be an improvement over me just being a pig, but, you know, each to his own. So I'll let you know about that, and, please do me a favor. If you are watching, if you have watched, it's awesome. I think I passed I passed 10,000 10,000 subscribers. Surely, there's a little thing we should do, but thank you so much for those of you, who have subscribed. Hit the subscribe.

David Watts [00:17:27]:
Hit the like. To me, it means that this is something that needs to be talked about. It resonates, and we need to come together as a group of people, that are either living with these kind of diseases or family of people like that. You know, I've got I've got firsthand experience of what a grumpy old fart I can be, so I'd be quite happy to share those and and and, you know, a little bit of support, a little bit of, hey there, tiger. You can do it. All of those things can help a whole lot. So please like, subscribe, leave your comments, positive or negative. I've been in radio for many years.

David Watts [00:18:10]:
Okay? Negative comments, also, I can I can deal with those? But, from a very chilly morning here in Pretoria East, I wanna say thank you to each and every one of you. It means so much to me that, you listen to this sometimes almost incomprehensible waffle and, that you are downloading and watching the videos. Look after yourselves. Take care. Be kind. Okay? This this world needs more human beings and less human doings. We need to be. Okay? Be understanding.

David Watts [00:18:54]:
Be kind. Be loving. So until then, take care. I'll chat to you again soon.