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Welcome back to another intriguing episode of Watts Involved. Today, our host, David Watts, shares a deeply personal account of his recent health challenges, ranging from an inconclusive diagnosis of (SPS) Stiff Person Syndrome to landing a potential diagnosis of myasthenia gravis, alongside experiences with (CIDP) Chronic Inflammatory Demyelinating Polyneuropathy and sleep apnea. In this episode, David delves into the lifestyle adjustments he’s had to make, including starting new medications and using a CPAP machine to improve his sleep quality. Reflecting candidly on the emotional and physical toll of these conditions, David also sparks a broader conversation about living with and managing autoimmune diseases. Join us as David encourages community interaction, inviting listeners to share their stories and coping mechanisms, all while keeping spirits high and fostering understanding and support among those affected. Tune in to hear more about David's journey, learn about the impact of these health issues, and perhaps find camaraderie or comfort in the shared experiences of our listening community.
David Watts [00:00:00]:
Right. Here we go. Another edition of What's Involved? So last time we talked, I told you about just coming out of hospital and wasn't feeling too great, and I've got the gas in my leg, and the polymytosis was inconclusive. I at least now have, a nice scar on my leg, so I can make up all sorts of war stories, which is fairly cool. But but there was a raft of blood tests as well. And, don't ask me what they were. I don't know. I feel like a pincushion.
David Watts [00:00:35]:
But, they did come back, and the, neurologist and the rheumatologist said that, they were thinking, that it could be SPS. Now if you notice the fish tanks in the back, to me, I used to have marine tanks. SPS was a form of hard coral. Little did I know that, SPS actually stands for stiff person syndrome. And I was like, okay. Yeah. I might have that probably in none of the right places. That's a story for another day.
David Watts [00:01:16]:
Anyway, so then they decided, no. No. No. Not not stiff person syndrome. So I was okay, that's a relief. What they said is it is looks like something called myasthenia gravis, which is like, I I I guess, like muscle weakness and wasting, which I've been complaining about, on top of the CODP. Just just just so that we can be clear. Okay? I mean, what is the point of going through all of the suffering if I can't share it with you? And that's just me making light of it.
David Watts [00:01:54]:
Anyway, so they gave me 2 new forms of medication. Also don't know what those names are. Been taking them for about a week now. And I have to say, at this stage, I'm cautiously optimistic. There's the muscle ripping cramps are way down. The pain is down to a pleasant manageable, level 3 out of 10. So so that's okay. The biggest change that that I've had, and I'm trying to figure out if this is because I think logically to me, it should be it should be something that plays an it it plays a role because, sleep, I was just not getting any sort of formal quality of sleep.
David Watts [00:02:47]:
I'm sure I mentioned that, I was diagnosed, with sleep apnea as well. Man, do I rack up the issues. She's like anyway, so, I got the machine. I was very, very fortunate, and, the light of my life helped me out, and we got this sleep apnea machine. It's got a lovely name, CPAP. And, yeah, okay. It just conjures up stuff for me. Anyway, so you strap on the mask and off you go and you breathe, etcetera, etcetera, etcetera.
David Watts [00:03:20]:
And in the beginning, I kept taking it off, in the night, and then if I woke up, I'd put it back on. I seem to be getting a bit bit better than that. They reckon you need to aim to sort of, you know, between 6 8 hours of sleep with the mask on. But I must say, I think it's making a difference. I think the fact that I'm not waking up, like, 47 times an hour and having these, periods where I'm not breathing for almost 90 seconds and blood oxygen levels going down to, I think it was like 72 70, 72, somewhere around there. And I reckon the whole blood oxygen thing is fairly important. Now that that's happening, I think it's making a difference. But, you know, as with everything, there's a downside.
David Watts [00:04:03]:
I guess I'm definitely not the most sexy person you could ever wish to sleep next to at the moment. Can you imagine waking up next to that? Actually, it makes no noise. Unless, of course, it, like, comes unplugged or or there's a a gap around it, okay? Then it sounds like a flipping turbine, but other than that, it's cool. So new myasthenia gravis and new medication, I'm feeling a lot more upbeat and a lot more positive about the world. And I and it's it's strange because I used to be very fit and quite strong and, fairly muscular. I I had what I would I would call, I don't know, not not big body builder muscles, but, martial arts muscles, so fast twitch muscle, that kind of thing. And that's just been going, and I haven't been able to do anything. And over the last while and as I'm talking to you now, I realized that I've just screwed up because I agreed we were gonna go for a walk this morning, and now I'm talking to you.
David Watts [00:05:02]:
So, whoops. Sorry about that. But, I've been able to do some walking, been able to start doing some exercises because I was, you know, doing bed exercises. Not just not those exercises. I actually had physiotherapist approved exercises where I had to, like, press my my knees into the bed, and I had to do this and I had to do that. And I was doing it, and it was okay. But, we've now progressed a little bit. So let's hope let's hope that this is these are good signs.
David Watts [00:05:39]:
Fingers crossed. If you are somebody that's, battling with this, as I understand that these kind of autoimmune things seem to come for a lot of people in batches, and the road to recovery and to understanding and to finding the right medication is a long one. So even though I'm I'm upbeat now, I am aware that it it it might change. So just if you are going through it, hang in there. Hang in there. And I know it's easy to say, and at some stage, I will talk about maybe, if you are somebody that's living with somebody that has autoimmune issues, just the kind of strain you must be under as well. So we can we can talk about that because I've talked about our kind of strain. But if you are living with an autoimmune disease, you're embarrassed about it, and you you haven't, been able to talk about it or anything.
David Watts [00:06:39]:
I wanna talk about it. Okay? I wanna talk about the stuff. I wanna understand the stuff. There's so much. I mean, it like, when I wake up at, like, 3 or 4 o'clock in the morning, my brain's fizzing with ideas. Unfortunately, the fizz is fizzed out by the time I get downstairs most of the time, but I wanna talk about it. I wanna learn. I wanna hear your stories.
David Watts [00:06:58]:
I wanna share stories. I want us to have a community where we can we can talk about this stuff and talk about what works and what doesn't work. I was watching a series where these guys are now injecting nanites into people, and the nanites get programmed. And I'm thinking, I could do with I could do with some nanites for me. Let's be honest. But what works for you? I've heard that there's, like, super foods, that there's the vitamins smart smart this is and that's and the next thing. I don't know. Okay? I I'm I'm a big fan of of vitamins, always have been.
David Watts [00:07:34]:
The doctor told me that all I do is make expensive urine. So, you know, what is your thought? Eat right. What do you do? Let me know. Like, comment, all of those things. And, oh, yeah. Do do do me a favor, please. Just hit that little like and and the little bell thingy, you know, for for all the all the right reasons. And for those of you who have watched and and everything, thank you, man.
David Watts [00:08:00]:
And and and I really I mean it from the bottom of my heart. And those of you who've interacted, thank you. It's a way for us to share and to get this out there and just talk about, you know, this disease and and mindset and how we can be nicer people when we have it, because that's a whole another story. Sometimes I am as grumpy as I'm very grumpy. So let's talk. Okay? Like, share, all of those things. Thank you so much and, take care. Look after yourselves.
David Watts [00:08:35]:
Be kind, and I'll chat to you again soon.
