Living with Chronic Pain
In short
A short, unvarnished update recorded after a sleepless night: David's muscle twitching, cramps and pain have returned within weeks of his polygam infusion, which he had hoped would settle things. He talks through what he can still control — structure, fitness, vitamins, beliefs — his resistance to being told what to do, and where responsibility for his body actually sits.
What happened after the polygam treatment David had in hospital?
The symptoms came back. Late one afternoon the muscle twitching returned — described as looking like worms under the skin, in his calves — and by that night the pain and cramps were back with a vengeance. He says that shouldn't happen, because polygam should sort that out and leave him feeling good for a while.
Why is it hard to think about healing when the pain is constant?
Because the pain takes up all the available attention. He says when it is consuming him and shouting for attention at all times, the concepts he usually talks about — healing, the plans, the fancy sayings — go straight out the window, and the only thing he is focused on is how bad he feels.
What does he make of advice to ignore the pain or work with it?
He doubts it applies to pain that never stops. If it weren't continuous almost 24 hours a day, he thinks he might manage it, and he concedes he may just be a big baby — but he is honest that he doesn't fancy the idea of pain, or of doing anything while in it.
How is the weight going?
It has gone the wrong way. He stood on the scale again and had picked up a kilogram, from around 115 to 116, rounding it off. Nothing has changed in what he is doing — still attempting the very low carb approach — and he calls the result not brilliant and not good.
Why does he struggle to put a plan in place?
He needs structure but rebels against it. As he puts it, tell him to do something and he'll tell you he won't; if he knows he has to do something, he doesn't do it. He also wonders whether the problem is thinking too much — something he often calls other people out for.
Does he think he has accepted his autoimmune diseases?
He isn't sure he has. He raises the question of acceptance directly and admits he may not be there yet, and that not having answers bugs him because he needs things to have a beginning, a middle and an end. He also says he doesn't think he has slowed down.
What is he reading or thinking about on the mental side?
Bruce Lipton's The Biology of Belief, which got him asking what his beliefs are around his illness and in general, and what he stands for. It ties back to his line about integrity — that say should equal do — and his admission that thinking and saying come easier than doing.
Was he going to complain to his neurologist, and did he send it?
He had started a strongly worded email saying she had told him it would be better and different, and that on four-weekly treatment he still feels like crap — but he stopped to ask what difference it would make. He may still send it, but concludes more of the responsibility is his.
What does he think of the alternative remedies friends keep suggesting?
He reports them without endorsing them. Friends tell him not to do that but to do this instead — including an auntie down the road who injects a cocktail, and ozone injections. He rules hydrogen peroxide out as probably not a good idea, and notes the endless "have you tried this" suggestions.
In their words
I'm not just going to put my hands up in the air, roll over and play dead. That's the one thing I know I'm not going to do. But what can I do?
the only thing that consumes me and that I'm like totally focused on is how bad I feel
I need some kind of structure, and yet inherently, I rebel against any kind of structure. Tell me to do something, and I'll tell you that I won't.
I'm very good at the thinking part, saying, saying part. Fairly good, too. The doing part is where I get tripped up sometime.
I believe I have more responsibility because I'm kind of resident in this body. And as to how I fix it, I don't know yet.
Key takeaways
- The polygam infusion did not hold: twitching, cramps and pain returned despite treatment every four weeks.
- Constant pain crowds out the mindset work he normally talks about, leaving only the awareness of feeling bad.
- Advice to work through pain reads differently when the pain is almost continuous.
- He needs structure to build a plan around his least painful hours, but instinctively rebels against being told what to do.
- He places more responsibility for his body on himself than on the medical field, while admitting he doesn't yet know how to fix it.
- He intends to share the bad days as well as the good, and asks for conversation rather than sympathy.
Show notes
In today's episode, David provides a raw and honest update on his ongoing health journey, particularly his struggle with pain and muscle cramps that have intensified despite medical treatments. He shares his latest thoughts on managing chronic pain, exploring both mental and physical strategies, and the frustration that comes with not seeing desired improvements. David also reflects on the concept of acceptance and responsibility in dealing with autoimmune diseases, and the ongoing quest for solutions. Tune in as David navigates this challenging chapter of his life, offering insights and opening up about the complexities of living with chronic illness. As always, he invites listeners to connect, share their own experiences, and join in the conversation.
Frequently asked questions
What does the muscle twitching feel like?
He compares it to the involuntary twitch you get in an arm muscle for no reason, or an eye jumping — but in his calves, and it has been described as looking like worms moving under the skin.
Does he plan to slow down?
No. He says he doesn't think he has slowed down and that he needs to try to speed up — getting a plan into action, working on getting his body fitter and looking at the vitamin side of things.
What is he asking of listeners?
To get in touch and talk, not to feel sorry for him. He suggests listeners may have solutions, or that together they might find some, and he asks people to like and subscribe on YouTube or the audio podcast.
How does he sign off?
With the one thing he says he'll never stop believing: that the world needs more love, kindness and empathy. He tells listeners to look after themselves and be kind to one another, and promises another update.
Transcript
Well, once again, good day, good evening, good afternoon.
Another edition of what's involved.
Just an update, really.
The last time we chatted, I gave you.
I was, I told you, in hospital, just got the polygam, looking forward to everything being hunky dory and all of those good things.
And I was, and I was trying to figure out, you know, as I said in one of the previous episodes, this whole thing about being the human guinea pig and yesterday, sort of later, afternoon ish, suddenly the feeling, and it's been described as looking at like worms under your skin, but of the, I don't know, muscles twitching in places on my calves and, you know, you can, you know, like when you get twitch in your arm muscle or whatever muscle just for no reason or your eye just jumps.
That kind of thing.
Yeah, like that.
And that came back sort of yesterday afternoon ish.
And by last night, the sort of pain and the cramps and all of that were back with a vengeance, which in an ideal world shouldn't happen because polygam should sort that stuff out and should feel good for a bit, but I'm not.
So what are we going to do about this?
And this got me to thinking.
Had a lot of time to think last night.
How am I going to manage this going forward?
Because I'm not just going to put my hands up in the air, roll over and play dead.
That's the one thing I know I'm not going to do.
But what can I do?
Because when I'm feeling like that, when I'm in that kind of space and the pain is consuming me and shouting for attention at all times, just the concept of some of the things I talk about, like healing, how am I going to heal?
What am I going to do?
You know, trying all of these things and coming up with fancy sayings and stuff, that all goes right out the window.
Because the only thing that consumes me and that I'm like totally focused on is how bad I feel.
Now, I know there are those of you who are going to say, well, you know, ignore the pain, work with the pain, let the pain work through you, etc.
Etc.
Etcetera.
And I think if this was something that sort of, you know, wasn't continuous, 24 hours a day, almost, maybe I would get that right.
Maybe I just am a big baby and, you know, but let's be honest, I don't fancy the idea of pain or doing anything when I am in pain.
So while I was lying awake, I was thinking, what can I do?
I mean, you know, how do I make a plan to spend the times of day that I am most sort of.
I have the least pain, but what can I do there?
And how can I do those things that will then contribute to my overall weight?
Oh, talking about that, also stood on the scale again, and nothing different stood on the scale last night.
I picked up a kilogram, so, you know, down to 115 and 115.7.
I don't know.
Let's call it 115.
Back up to 116.
Just rounding it off.
So that's not brilliant.
Nothing's changed out while still doing the same thing there.
Trying to do the very low carb kind of thing.
So that's not good.
But what can I do in terms of, you know, I need some kind of structure, and yet inherently, I rebel against any kind of structure.
Tell me to do something, and I'll tell you that I won't.
That simple.
If I know that I've got to do something, don't do it.
Okay, so this is what I've been resting with.
And as I said last night, I had a lot of time to think about all of these kind of things, and maybe that's it.
Maybe it's the thinking, you know, maybe I think too much.
I often call people out for that, you know, and the yes buts and everything, and I'm guilty as well, so.
But, yeah, am I not at the place where I've come to accept these autoimmune diseases and go, okay, that's.
That's, you know, the whole acceptance, maybe I'm not there.
Maybe I just haven't accepted it in my life.
I don't know.
I don't have answers at the moment.
And that bugs me as well, you know, because I need to know something has a beginning, a middle, and an end, and.
Yeah.
Do I?
I don't think I slowed down.
I think I need to try and speed up.
I think I'd need to get this.
This.
This plan in action, you know, try and get my body fitter and look at the vitamin side of it.
I've been doing a lot of sort of reading about the mental aspects of it.
I don't know if I've mentioned that Bruce Lipton, the biology of belief, which got to me, got me to thinking, what are my beliefs around this?
What are my beliefs in general?
What do I stand for?
I know I often say being in integrity with yourself and the world outside things should equal say, should equal do.
I'm very good at the thinking part, saying, saying part.
Fairly good, too.
The doing part is where I get tripped.
Up sometime.
So now, not all sort of sunshine and roses on this side at the moment.
Again, you know, it feels ironic for me to remind you to please like or subscribe.
Or subscribe if you're listening to the podcast, the audio version, because you would want to listen to me ranting and raving.
Well, hopefully you.
Hopefully I can touch a nerve and you kind of go, okay, yeah, and you can use what I'm talking about and at least have the freedom to acknowledge that.
Yay, you're grateful you don't have any.
Amah, I nearly said words I don't know.
I'm allowed to say, don't have any of my issues.
Or you can say, yeah, I'm in a similar position, and life just seems sucky.
And I also don't know what to do.
And then, you know, as I said, like, subscribe, subscribe to the YouTube channel.
There's many ways of getting in, getting hold of me.
Let's have a chat.
Maybe you got solutions.
Maybe together we can find solutions.
You know, when I came down, as I said, I literally haven't had a whole lot of sleep.
You can probably tell it in the eyes this morning, but when I came down to the office this morning, I might still do it.
I was in the process of writing a strongly worded email to my neurologist saying, you said this would be better and different.
And now that it's every four weeks and I still feel like crap, how much of it is sort of the medical field's responsibility?
How much is my responsibility?
Yes, I know many of my friends have said, oh, don't do that.
Rather do this.
There's this auntie down the road, she can inject this wonderful cocktail into you, which includes, was it hydrogen.
Hydrogen peroxide?
No.
O three.
Ozone.
Ozone.
Okay, hydrogen peroxide, probably not a good idea, but ozone.
So they inject you with ozone.
It can do this or this, or have you tried this or have you tried it?
That.
The other drawback to this is, of course, the brain goes brain fart.
But anyway, so I was talking about coming down here early for some reason, rather, and writing a strongly worded, oh, yes.
What difference will that make?
How much of her responsibility?
How much is mine?
And I believe I have more responsibility because I'm kind of resident in this body.
And as to how I fix it, I don't know yet.
I don't know yet.
But listen, I'll share the good days, but I will also share days like this.
So thank you for listening.
Wherever you are, look after yourselves.
Take care.
Be kind to one another.
That's one thing I'll never stop believing.
This world needs more.
More love and more kindness and more empathy.
So, you know, I'm not.
I'm not asking for you to feel sorry for me.
But let's get to understand each other.
enough waffle from.
From me.
Until next time.
You know, we'll chat again soon.
I'll give you another update.
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