Breaking the Silence: David Watts on Autoimmune Diseases, Mental Health, and Self-Care
In short
David Watts gives a health update: CIDP treated with six-weekly IVIG (Polygam), severe cramps that appear to have torn his hiatus hernia to around seven centimetres, stomach cells growing in his oesophagus, suspected polymyositis awaiting a muscle biopsy, plus type 2 diabetes. He also describes seeing a psychiatrist and sets out the topics he wants the podcast to cover.
What has been happening with David's CIDP treatment since December?
His six-weekly Polygam (IVIG) infusions stopped producing the usual improvement. December was miserable, Christmas was spent in bed, and he was told he needed another six months of treatment. In January he told his neurologist that something was clearly not working.
How bad did the cramps get?
Severe enough to feel like torn muscles afterwards. He had cramps in his calves, thighs and back, and one episode in the bathroom brought the worst cramps of his life on both sides of his stomach, leaving him unable to breathe properly for twenty minutes to half an hour with nobody around.
What did the gastroscopy find?
A hiatus hernia of about seven centimetres, which the surgeon thought the cramps had torn larger from a small existing one. Worse, his body's response to the reflux had caused stomach cells to grow in his oesophagus, which the doctor said could be a precursor to cancer.
Was the gastroscopy as unpleasant as he expected?
No. He was not happy about swallowing a camera, but a quick anaesthetic meant he fell asleep and woke up with it done, with no pain or discomfort. The skin biopsy on his hand was another matter: it got infected, needed antibiotics, and the stitches had to be dug out with a scalpel.
What is the suspected new diagnosis?
Polymyositis. A rheumatologist, referred by his neurologist because of the cramps, fatigue and brain fog, questioned and examined him and was almost convinced of it. He believes it attacks muscles and joints, and understands the treatment to be a mild form of chemotherapy. A muscle biopsy was scheduled for later that month.
What other symptoms is he dealing with?
Constantly ice-cold lower legs and feet, which makes all his other pain far worse, even in bed under a duvet wearing socks. A sonar scan of both legs showed blood flow was fine, so the cold remains unexplained. He also breaks out in heavy sweats regardless of temperature.
Why did he decide to see a mental health professional?
Because he had lost all lust for life and had gone from being what his mentor called a "human doing" to a human existing. Asked whether he wanted a psychologist or a psychiatrist, he chose someone who could prescribe, saying he was tired of waiting and wanted something to make him feel better.
Why is he talking publicly about all of this?
Because mental health and how people actually feel is treated like a dirty little secret while social media shows only the bright side. He hopes it prompts people who are well to grab life, and reassures those in similar situations that others are going through it too.
What does he want to cover in future episodes?
Treatments and what they do, vitamins and how buyers can know what they are getting given the lack of control, diet and inflammation, and more esoteric energy-based ideas. He wants to interview doctors, psychiatrists, psychologists, support workers and others with autoimmune diseases, and eventually help people who cannot afford this care.
In their words
I could think of way more dignified ways to go.
Nobody wants to talk about mental health. Nobody wants to talk about how they're feeling. And, on social media and wherever you look, it's always like the bright side, you know, living my best life.
David, you are a human doing because I was always busy in doing stuff, and he said, you know, and not a human being.
We got a laugh, otherwise, we'll cry.
It'll inspire you, if you do not have any of this stuff, to kind of grab life. Just grab it by the horns and and make the most of it because you have no idea when something's gonna change.
Key takeaways
- An IVIG regimen that has been working can stop working, and the fallout can include severe cramping that causes new structural damage.
- Severe cramps tore David's small hiatus hernia to roughly seven centimetres, and the resulting reflux led to stomach cells growing in his oesophagus, a possible precursor to cancer.
- Autoimmune investigation is expensive and cumulative: neurologist, gastroscopy, skin biopsy, rheumatologist, sonar scan, physiotherapy, psychiatry and a pending muscle biopsy.
- Fatigue, brain fog, frozen feet and unexplained sweats can be as disabling as the headline diagnosis, and cold limbs magnify existing pain.
- Humour is how David keeps the story tellable, from the sonar joke to describing himself as looking like the human version of Gru.
- The psychological toll of autoimmune illness is rarely discussed publicly, and David wants the podcast to open that conversation.
Show notes
In this compelling episode of What's Involved, host David Watts candidly shares his ongoing battle with autoimmune diseases. From the challenges of CIDP and Polygam treatments to unexpected complications like a hiatus hernia, stomach cells in the oesophagus, and potential polymyositis, David recounts his journey with unwavering honesty and humour. He delves into the physical and emotional toll, shedding light on rarely discussed topics such as mental health struggles and the societal stigma surrounding them. Through his journey, he aims to inspire others facing similar adversities and spark candid conversations about holistic treatments, vitamins, and the power of positive energy. Join us as David bravely opens up about his experiences, advocating for greater support and understanding for those navigating the complexities of autoimmune diseases. Stay tuned for an enlightening and heartwarming discussion on resilience, hope, and the importance of sharing our untold stories.
Frequently asked questions
What conditions does David say he has?
Type 2 diabetes, insulin dependent, which he describes as having to be his own pancreas; CIDP, still being treated with Polygam; and suspected polymyositis awaiting a muscle biopsy. He also has a hiatus hernia and stomach cells in his oesophagus.
What does his Polygam treatment involve?
Once every six weeks he goes into hospital for a day and a night to be given Polygam. He goes home feeling terrible for a few days and then generally starts to feel better, though that pattern broke down in December.
What might happen if the oesophagus problem does not resolve?
He has been put on medication, and was told that if it does not clear up, surgeons will need to perform a debriding procedure down into his oesophagus to remove the cells. He compares it to a roto-rooter for the throat.
What does his GP think about vitamins?
His GP reckons the only thing vitamins do is give you very expensive urine. David notes other people swear by them, and wants to look into vitamins, diet, inflammation and other treatments in future episodes.
Transcript
David Watts — Right. Once again, welcome. Another edition episode of, What's Involved. This is where I this watch gets involved in his own life. And if you've been following my journey, I think we got to about December, And so I'll just do a quick recap, okay? Sort of halfway through last year being 2023, I was diagnosed with something called CIDP, which is an autoimmune disease essentially. The treatment for that is something called IVIG, I get polygam. So once every 6 weeks, I have to go into a hospital for a day and a night, and then they pump me full of PolyGAM. I get out, I get home, I feel terrible for a few days, and then, generally, I start to feel better, except that didn't happen in December.
David Watts — So miserable December, Christmas in bed, miserable New Year, went for, then found out I had to have another 6 months of polyam, went, for my treatment in January ish, I guess. And I spoke to my neurologist, and she's I said, tell us something. There's something is wrong here. Something is just not working. Because, during that period of time, I suddenly decided started to develop cramps. Now cramps are something that people get. What I was getting was not fun. I would get cramps in my my calves, in my thighs, and in my back, but so badly that once I'd gotten past the cramping stage of it, it felt like I pulled or torn muscles.
David Watts — The worst part of that was, at one stage, I was, in the bathroom. And in the interest of transparency, I was getting up from the toilet, and suddenly, on either side of my stomach, I had the most incredible terrible cramps I've ever had in my life. And I thought, well, that's gonna be interesting because then I'm gonna be checking out getting up off the toilet. I I could think of way more dignified ways to go. And there was nobody around, and and I could do nothing. And it took, I don't know, 20 minutes, half an hour before I could even breathe properly. As a result of that, okay, I felt something sort of give in my stomach area. So when I was in the hospital the next time, I told the doctor about the whole thing, and I told her what was happening.
David Watts — I told her about the cramps. There were more tests, and trust me, none of this is inexpensive. And, she said I needed to also then go for a gastroscopy. And because of this hand thing I have, you can kind of see it there. It's it's cleared up a bit, but it's starting to flare up again. And then we're gonna do a skin biopsy. So I wasn't happy about this idea of of, swallowing a camera, needless to say, and I went. And, they got a new way of doing it since many, many, many days when, you know, they they try to force a camcorder down your throat.
David Watts — Literally, they do this quick anesthetic thing, and you fall asleep, you wake up, it's done. There was no pain. There was no discomfort. It was amazing. I cannot say the same for the skin biopsy on my hand. Anyway, then off we went with instructions on what to do. My hand immediately got infected, had to get, antibiotics for that, went back to see, the surgeon who'd done this whole gastros gastroscopy thing, and he said to me, well, there's bad news and worse news. So I said to him, well, first and foremost, let's discuss my hand that still has stitches in it.
David Watts — So he goes, oh. Now at this stage, nobody told me that whether they were dissolving stitches or what. He told me to come back in 7 days. I did. Anyway, so I fiddled around in my hand, with a scalpel that was not pleasant, and then said to me, I have now got a 7 odd centimeter hiatus hernia. In all likelihood, and I know I had a small one before, part of my misspent youth, but those creams had actually torn it bigger, so to speak. So I said, well, that's great. He said to me, yep.
David Watts — That's the bad news. The worst news is that, because of this and the gastric reflux that I've been having, which is waking me up, choking, and all sorts of things. I know it's a terrible story. When I listen to myself talking about it, I'm like, yeah, David, what a drama queen. But it's real, and I'm not the only one going through this, and that's why I wanna talk about this stuff because I know of people just in my life, my circle, that have also got various autoimmune diseases and the absolute hell that they go through and and the psychological effect. So that's the kind of stuff I wanna talk to, but I thought I'd get you up to date, just in terms of my health, where I am. So back to the, results of the gastroscopy, some of the high the hiatus hernia. However, apparently, in with my body trying to deal with this, I started growing, stomach cells in my esophagus, which he said is not a good thing, and that he's put me on medication, and he said, because that could be a precursor to cancer.
David Watts — And I was like, okay. What else? And he said, if it doesn't clear up and go away, they're gonna have to sort of do a operation where they put like a what's it they call it debriding, I think, sort of thing down into my esophagus and chop away all those things. It's a bit like roto rooter, but for your throat. And, I said, okay, and then off I went. As a result of all the cramps and the other, that's incredible fatigue, brain fog, I mean, I I'm just I have just been absolutely wasted and flat. The neurologist suggested I go and see a rheumatologist. So if I toddled to go and see the rheumatologist, and, she asked me all sorts of questions, prodded prodded and poked and then did some more tests, and she said she is quite almost convinced that I also have something called polymyositis. I know very little about what it does.
David Watts — I believe it can attack your muscles and your joints. Seems to be doing that with me. Like, my muscles are just I wasn't like the Incredible Hulk. I've been called the Incredible Sulk, but never the Incredible Hulk before. So but I I I wasn't bad. Now I look like the human version of GRU, fat stomach and stick legs and stick arms. We got a laugh, otherwise, we'll cry. And she said, right.
David Watts — Just to to finalize this, we need to do a muscle biopsy. That led to another comedy of errors, and I went in for another polygame treatment last week. So where are we today? Today is 13th March, so last Thursday Friday. And, there, I had to see physio again, and she gave me exercises to do, more exercises, bedside really because, I've I've just not been able to do anything. It's been horrible. And then I had to have, a sonar of my legs because the other thing that's happened is I my lower legs and my feet are ice cold all the time, which makes all the other pain 10 times worse. And even if I'm lying in bed under a duvet with socks on, my feet are still frozen. So off I then got wheeled to go and do a sonar scan and, got into the the sonar room, and the lady there took one look at me and said, take off your pants, lie on the bed, and gave me this little piece of cloth to throw over the the pink bits.
David Watts — And I looked at her and said, you're not even gonna buy me dinner first. She didn't have as much of a sense of humor as I did, and I think that's why I got punished with cold gel on the shona. Anyway, the shona was duly jabbed up into my groin, and I had the shona on both legs. Came back, still got blood flow, So that doesn't answer the cold thing. The other thing that happens, and initially, I thought this was like manopause because for no reason, I'll just break out into absolute sweats. I mean, I'm I sweat horribly. It's just it's horrible, and it doesn't matter what the temperature is. I can lie in an air conditioned room, and I will still sweat, but my feet will still be frozen.
David Watts — So there was there was the case with that, so they did that. What else did they do? Oh, I got to see a shrink. So when I was telling you how I was feeling and the fact that, you know, no more lustful life. I was not, I always my my mentor always used to say to me, David, you are a human doing because I was always busy in doing stuff, and he said, you know, and not a human being. Now up until, you know, when I went to the hospital, I was a human existing, probably still am. So she said to me, Uksha, what kind of a of a mental health professional would you like to talk to, a psychologist or a psychiatrist? So I said, I wanna talk to somebody who can give me drugs because I'm tired of waiting around. I want something new, something that'll make me feel better. So that was done, and, I'm recording this on Wednesday, 13th, and I'm going for a follow-up, discussion with the psychiatrist.
David Watts — I swear, I think this guy charges by the word. It is a stupidly expensive. I miss my calling in life, clearly. So we'll see what's happening there. And finally, after much comedy of errors, I am going, I think I said on the 2020 something of this month for the muscle biopsy. So that kind of brings me up to date as to where we are now. So autoimmune diseases, well, I've got diabetes, type 2, insulin dependence. I have to be my own pancreas.
David Watts — I have got CIDP, which we're continuing treatment with and waiting to hear about polymyositis, for which I believe the treatment is a mild form of chemo. So there now you're up to date. Thank goodness I didn't decide to tell you my life story because that is interesting or taken a long time. So now that we're here, I can kind of move on to why I'm I'm wanting to do this. And I keep saying, I'm doing this because I know of people, and it's like a dirty little secret. Nobody wants to talk about mental health. Nobody wants to talk about how they're feeling. And, on social media and wherever you look, it's always like the bright side, you know, living my best life.
David Watts — And a lot of us aren't, and a lot of us aren't okay, and it's just not cool to talk about this. And the fact that we had COVID thrown in has made things worse for a lot of us. So my hope is that by sharing this, talking about my my my feelings and what I'm going through, It'll inspire you, if you do not have any of this stuff, to kind of grab life. Just grab it by the horns and and make the most of it because you have no idea when something's gonna change. If you are going through something similar, maybe just knowing that there's other people out there, will also help you. Going forward, I wanna talk about what these various treatments are, what they can do. I wanna find out about vitamins because, you know, my GP reckons vitamins, the only thing they do is give you very expensive urine. Other people swear by them, or the other kind of treatments.
David Watts — You know, a lot of people, I've seen talking about diet. How does your does it does your diet impact this? I believe, yes, it does. Lot of people say it's inflammation in the body. You need to get rid of the inflammation. Some people go and do different kinds of mess. There's a whole bunch of things, and then there's some more esoteric things. So I'm gonna prepare you for this because I do believe that everything is energy. Okay? You know, Einstein, I think, knew a little bit about what he was talking about.
David Watts — So energy, electricity, frequency, waves, those kind of things, I believe in that. But can it help a disease like this? Is something like this just in my head? That's on my list to ask the the shrink today. So those are the kind of things, and then I wanna get hold of some of the doctors, some of the psychiatrists, psychologists, some of the support guys, and I wanna talk about the to some of the vitamin people. How do you know what you're buying? How do you know? There's no control over the vitamins. Perhaps even, talk to people who are going through similar or different autoimmune diseases, and, let's start a movement. Let's start talking, and ultimately, I think my dream is that, can find some way to also help those people who are not as fortunate as I am that can get access to this kind of stuff because it is not cheap. Anyway, that's my lot from me as I gently hack up a lung. Please do me a favor.
David Watts — You know, if you're watching this, like and share, and and and, you know, hit the bell and do all those things that that the YouTube algorithm likes. If you're listening to the podcast, please share it. Please leave reviews. Visit my website. If you're up to it on the left of the website when you get on to whatsinvolveddot com, watsinvolved.com, you'll see a little little coffee cup there that says buy me a coffee. Anything like that will be appreciated. It just help with the cost of putting this together. Until then, be kind.
David Watts — Look after yourselves. Take care. Thank you so much, whether you've been watching or listening. Until next time. Cheers.
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