I wanted to Delete this episode. ADD when you think you are in control
In short
A short, unpolished Sunday-morning update from David Watts, ten days after a muscle biopsy for suspected polymyositis and still waiting for results. He talks about how autoimmune illness creeps up on you, how it shrinks your social life, and why guilt and waiting hurt more than pain. He asks listeners to share their own experiences.
What's the latest on David's biopsy and diagnosis?
Ten days after a muscle biopsy to establish whether he has polymyositis, he still had no result. The bulge in his left thigh, predicted to be about three centimetres, turned out to be just over five. He emailed the neurologist to chase it and had no reply. Dissolving stitches, he notes, don't necessarily dissolve.
How did the new ADD medication work out?
It worked brilliantly for a couple of days, then left him feeling as though he'd had far too many energy drinks — jittery, with a racing heart and pain in his temples. He mentions this while sipping a cup of coffee, aware of the irony.
Does he think sharing all this is brave?
No — he thinks it is simply the right thing to do and the kind of subject that needs talking about. Feedback matters to him, including critical comments, since anyone who watched and found him annoying may still tell someone else about the podcast.
How does autoimmune disease actually change daily life?
Through an insidious slow creep. You stop doing things and do less of others without noticing, until, in his case, you become a recluse — unwilling to go out, afraid of falling down or embarrassing yourself in public. He dates the start of his own journey to about three years ago.
Why does he say a positive attitude isn't always enough?
Because he can wake and tell himself repeatedly how positive he is and how great life will be, and it still sometimes doesn't work. He's tired of people patting his shoulder, telling him to keep his chin up, and asking whether he's tried vitamins or some other remedy.
How has illness affected his friendships?
Friends only invite you to dinner or a braai so many times, and once you keep saying no they stop asking. They also stop phoning to check on you, because there's no comfortable answer when you're not all right. Even surrounded by people, he says, it can be lonely.
What has been the hardest part for him personally?
Feeling far less of a man — unable to lift or carry things, unable to cook with Lillian or help her as he used to. He works less and less, overdoes it on good days and pays for it for four more, and carries immense guilt at feeling he can no longer contribute.
What does he find worse than the medical treatment itself?
The waiting and the not knowing. A friend facing a double mastectomy for cancer said the same. He worries about further tests, whether they can be afforded, and whether medical insurance will cover them — while recognising others cannot afford treatment at all.
Why hasn't he switched to alternative treatment?
His neurologist warned that stopping the current treatment, polygam, means starting over from the beginning if he gets worse — a chance he isn't prepared to take. He met a man in hospital who couldn't afford treatment and turned to an alternative regime, and he's a hippie at heart, curious about those options.
In their words
Health is is wasted on the healthy. Because when you're healthy, you just take stuff for granted, and you and you don't get out there and appreciate it.
I can get up, I can wake up in the morning, and I can tell myself as many times as I want to how positive I am and how life is gonna be great, and it sometimes doesn't work.
And it slowly puts you into a very dark place, and it can be even if you are surrounded with people, sometimes it can be lonely.
It's it's not the actual process. Okay? It's this waiting and this not knowing.
This is this is my story. It's in my heart, my soul. You're either gonna find it and you're gonna like it, or you're not.
Key takeaways
- Autoimmune illness arrives as a slow creep, not an event: you quietly stop doing things until you have become a recluse.
- Being told to keep your chin up or try vitamins misses the point, because a positive attitude does not always work.
- Friends fall away not out of malice but because invitations get declined and there is no easy answer to "are you all right?".
- The guilt of no longer contributing — at home, at work, to family being cared for — can hurt more than the physical pain.
- Waiting for results and not knowing what comes next, including whether treatment can be afforded, is the part that eats away at you.
- Health is wasted on the healthy, because when you are well you take it for granted.
Show notes
Welcome back to another thought-provoking episode of Watts Involved with your host, David Watts. As the title suggests, in this episode, I thought I had a plan and could produce a fairly decent episode. Instead, it seemed like I was jumping around like a Chameleon on a Smartie box. I wanted to delete the whole thing, but this is often a reality for me, so I decided to put it out there. What you are going to listen to is the result of what I thought was a perfectly logical and well-thought-out episode.
Frequently asked questions
When was this recorded?
On a Sunday morning, which David gives as 7 April, roughly ten days after his muscle biopsy. He had taken the dressings off his thigh the previous day.
Who else does he look after?
His mother and sister, both of whom he describes as technically disabled. The responsibility used to be shared, and he feels he has now added himself to that burden.
Is he planning to interview other people with autoimmune conditions?
Yes. Several people have agreed to come and talk with him, including a man he met in hospital who couldn't afford treatment and sought an alternative approach.
What does he ask of listeners?
To share the episode, comment with their own experiences and knowledge of others affected, and to like and subscribe so more people find it. Above all, to be kinder and more willing to help.
Transcript
David Watts — Well, there we go. Another edition of what's involved. Man, this is well, I'll start off at the very beginning. This is a a Sunday morning. It is, what, the 7th April, and one thing I have come to the conclusion of, if you've been following along, I had a muscle bulge, left thigh. They said to me it was gonna be about 3 centimeters long. It's closer to 5 or just over 5 centimeters long, and I know this because I took the dressings off yesterday. Also, dissolving stitches don't necessarily dissolve.
David Watts — Mhmm. That's something to to bear in mind. And, what else did I wanna say? There's there's a there's a lot, you see, and I've been thinking about a lot of stuff. And sometimes, the thinking of it and the putting it into words doesn't always come as easily as you might think, especially the way I can carry on sometimes, but, you know, there we go. That's just one of those things. So let's try and stop meandering. It's now been, what, similar 10 days or so, since, I had the muscle biopsy to find out if I have this polymyositis. Still haven't heard back.
David Watts — Grote an email off to the neurologist and said, hey, listen, hi, me, what's happening? And, haven't heard back from her as well. I told you that I was prescribed something new for my ADD, which worked brilliantly for a couple of days, and then kind of made me feel like I had way too many energy drinks, he says, sipping on a cup of coffee. But seriously, it was like how do you describe it? Too many energy drinks, chittery and, you know, and felt like my heart was acing, pain in my temples. It was just there. But, one of the things I've seen in in some of the feedback and let me let me start right here by saying this, is feedback is so important. Okay? If you like this, share it to it. But also comment. There's been so many people that have commented, and, as with anything, and as as you know, I've been here earlier for a while.
David Watts — So, you know, there's no such thing really as bad publicity. So even the ones that have gone so far, so what, don't really mind because they they watched it, and they might tell somebody about how annoying I am. Either way, you know, it's gonna it's gonna be good for us getting the word out. But a lot of people have come back and said, thank you for sharing, and then it's incredibly brave, etcetera, etcetera. I don't think it's necessarily brave. I think it's the right thing to do, and I think it's the kind of stuff we need to talk about. And, you know, yes, this is primarily about autoimmune diseases. What do we do about them? Those of us, who are currently afflicted with autoimmune diseases, I don't think suffering is is the right word.
David Watts — It's just yes, there's a lot of pain and stuff, but suffering I don't know. So afflicted with with autoimmune diseases. We go through we go through a lot, and sometimes, we go through a lot by ourselves, and sometimes we have some people with us. But I think unless you actually have something, similar to what what, I have or what other people have, you really don't understand how it affects you and how it changes your life. And I've been looking back at that, and I was thinking because I think this whole sort of journey of mine started about 3 years ago, and I was thinking, what I was able to do then and and the stuff that I take for granted, I've I've said it before. I'm probably gonna say it again. You know, health is is wasted on the healthy. Because when you're healthy, you just take stuff for granted, and you and you don't get out there and appreciate it.
David Watts — And with autoimmune disease, at least with mine, the the the sort of onset that it's this insidious slow creep, and you just stop doing things and you do less of certain things. And, this is where the mental health aspect comes in because before I knew it, I was I was literally a recluse. Didn't wanna go anywhere, didn't wanna go out, didn't wanna do anything, was, you know, worried that if I if I go out, I'm gonna fall down or do something silly and and, you know, embarrass myself. And, I mean, that's the worst part. You know, we sit, and I'm worried about embarrassing myself. Okay? And I was worried about that, And now with this polymyelitis, it looked like the the human walking version of Gru from the minions, and I thought, why was I why was I embarrassed and worried then? Look at me now. So now I've just given up. You know, I can if I make it out, check me out.
David Watts — But it's this mental aspect that I'm talking about, and the problem is is that it it just it creeps up on you, and it's there constantly. And I cannot tell you how many people have went and gone, and they've sort of patted me on the shoulder and gone, chin up, man. It can't be that bad. And, have you tried taking vitamins, or have you tried this, and have you tried that? And I'm like, yeah, I have, and I understand the whole thing about a positive attitude, but sometimes positive attitude does not work. I can get up, I can wake up in the morning, and I can tell myself as many times as I want to how positive I am and how life is gonna be great, and it sometimes doesn't work. And the the the the sort of emotional mental fallback on that is terrible because one of the things that has happened to me, and I know it's happened to many many other people, I'm not alone in this, is this you start to lose friends because, you know, friends will only invite you over to to come over for dinner or for a braai if you're in South Africa, a barbecue if you're anywhere else, so many times. And if you say no, you know, eventually they stop asking you. And also they'll stop phoning and asking if you're alright, because what do you say? No.
David Watts — I'm not. Okay. Well, have a good day, and, you know, you can go, well, okay. Good day is relevant, but I'll I'll do my best. And it slowly puts you into a very dark place, and it can be even if you are surrounded with people, sometimes it can be lonely. And this is the kind of stuff that I wanna talk about, and I can only really share my experience up until and and when you share yours, and a couple of people have agreed to come and and have a chat to me about this. I'm gonna be getting those guys on soon. But, for me, the worst part has been feeling less of a man, way, way less of a man, not being able to lift things up, not being able to carry things and do things.
David Watts — One of my favorite things that I used to do with with Lillian is, you know, either I would I would make dinner in the evenings or I would I would help her. I can't do that anymore, and and you get this immense feeling of guilt. And then the work thing came along and I've been able to work less and less and less. And then the days I do feel good, I try and do too much work to catch up, and then for the next 4 days, I'm wasted. And these are things that I've had to deal with and I am still dealing with is this the incredible amount of guilt and and feeling like a failure, like I'm I'm I'm not good enough anymore. I haven't I can't contribute. We're we're looking after my mom and sister, both who are are technically disabled as well. That's a burden, and it was a burden that was shared, and now what I've done is I've added myself to that that burden, to that responsibility.
David Watts — And it's how do we how do we navigate around that? And, you know, I was talking, a a friend sent me a message, and I'm sure I've spoken about it, where she was diagnosed with cancer and has to have a double mastectomy. And she also said the same thing as I have. It's it's not the actual process. Okay? It's this waiting and this not knowing. How does that make you feel? Because for me, that's the stuff that eats me up is this waiting. It's like, what are they gonna say? Are they gonna have to be more tests? Will we be able to afford it if they're tests? Will our our medical aid, medical insurance, will it pay for whatever needs to be done? And then I sit and think to myself, this is what I'm worried about, which is very much like a first world kind of problem, trust me. But what about those people that can't afford any of that? I have a friend, we've become friends, I met him in hospital, hopefully, I'll get him on here to have a chat about it as well. He simply couldn't afford the treatment, so he's gone and looked for an alternative sort of, regime to see if that'll help.
David Watts — Now I've always been a bit of a hippie at heart, so there's a part of me that's very keen on finding out about the alternative things and yet to have a neurologist who goes, if you stop taking the treatment, which is the polygam at this stage, we're gonna have to start it all over again if you get worse. And I'm like, that's not a chance that that I'm prepared to take. So it's how do we go on from there? And and this is where I need I need your help, and I need your input. Share with me. What do you think? What's happened? Do you know people that have got it? And I guess the general message that I'm trying to get across, particularly in in our country, South Africa, is we need to be kinder, we need to understand, we need to look at other people and realize that maybe we don't have it all, we don't know it all. And we also need to be able to help more. You know, it costs nothing to be nice, costs nothing to help. And and this is the thing, I'm I'm trying to help by by sharing this.
David Watts — There's a couple of other things that I wanna do. I always try and try and help. Don't always get it right, but just get out there. I mean, you know, and it's one of the things when I was doing my podcast, I always used to say I'm a rabid, sort of, what do you call it? A rabid patriot. I love South Africa. Love my country. Don't love what's happening in it. I don't love what certain people are doing, but I love my country, and I love the people.
David Watts — And I I believe that, you know, all of us, if we are together and take care of each other and we just show more love, I believe we can achieve amazing things. And, you know, if anything, this journey has told me is that and and taught me rather is that no man is an island. So if you are watching and you've watched this for, thank you so much. I really do appreciate it. Hopefully, we can we can make a difference. Don't know if we're gonna necessarily change the world overnight, but hell, why not try? Maybe not overnight, but take a bit longer. So do me a favor. Share this amongst your your friends, your family.
David Watts — You know, the old algorithm thing, which I don't understand. I tried to watch a series on how you're supposed to do YouTube properly, and I thought, you know what? Stuff it. This is this is my story. It's in my heart, my soul. You're either gonna find it and you're gonna like it, or you're not. But if you do find it and you have found it and you like it, just like and subscribe because apparently, that'll help other people find it as well. And, whatever you do, look after yourselves, take care, and be kind to each other. And, for me, until next time, thank you so much for your time.
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