Hey y’all—I’m Stu. And we need to talk—so let’s talk.
But this ain’t no pity party, so let’s get the bad stuff off the table first, and then we can talk about the good stuff.
How can I live my best life—despite this constant reminder?
Yes, I have Myositis—Statin-induced Necrotizing Myopathy.
Yes, I’ve had a quadruple bypass.
Yes, I’ve fractured my back.
Yes, I’ve had two stents.
Yes, I have Tinnitus.
Yes, I’ve lived my whole life with ADHD and dyslexia.
Yes, my body hurts every day! Most mornings, I feel like the Tin Man—creaking and moaning like I’m overdue for oil.
And yes, I’ve relapsed more times than I can count. But what’s the point in keeping count? That’s just a battle scar—and thinking about past battles is a waste of time and energy.
Is the who, what, and why really going to change anything? Nope. Matter of fact, it’s just going to stir up feelings—and then I’ll be depressed.
So what! The real question is: what am I going to do now?
Ono—Number One
Do the things that give you momentum. Create a routine you can actually accomplish. Set up screen time on your phone so you don’t get distracted, and don’t respond to anything but your routine.
You must put yourself above everyone else—your job, your family, your friends, and yes, even your kids. You can’t help them if you can’t help yourself.
Take two hours every day and say—this is my time. No one can bother me!
If you did that, how much better would you be?
Number Two
I’m going to get up—dust off the negativity—and do one thing. And then? I’m going to do another, until I can look back and realize—oh snap—I did all these things.
How in the heck did I do it?
I don’t question it—I just take that momentum and throw it toward something else.
Do I have bad days? Of course! But I try not to have two. I think that’s the key. I give myself a day. But when I give myself two, or three, or even a week—it’s hard. And with each day, it becomes harder.
And that’s okay. I just try to avoid it.
But here’s the thing: if I do it—it gets easier with each day.
Number Three
You cannot count on anyone. The only person you can truly count on is yourself. Others will talk a good game—but when the years pass, you’ll realize you sleep alone, even when someone is lying next to you.
What’s the old saying?
“You’ll leave this earth the same way you entered—alone.”
Lying in an incubator, waiting for someone to pick you up.
I know that sounds harsh and bitter, but that’s not what I’m talking about. I’m not angry—I’m blessed and grateful. And yet, I’ve also been humbled and disappointed at the same time.
Yes, it’s important to have friends and family—that doctor or organization you can lean on—but don’t put all your eggs in someone else’s basket.
They’ll try to be supportive. They’ll try to understand what you’re dealing with.
But they can’t.
They can’t truly understand what you’re going through—and that will let you down.
Number Four
When I fall into a trap—I must forgive myself.
And this might be the hardest thing of all.
The trap?
I didn’t get out of bed.
I didn’t stretch.
I didn’t work out.
I ate a whole carton of ice cream.
We all know forgiving someone else is an uphill battle, but we rarely think about forgiving ourselves.
Instead, we just pile it up in the corner and act like it doesn’t exist.
Acknowledge it.
Say it: I see you.
Number Five
I have to be prepared. I have to plan and be ready for the next setback.
Because let’s face it—they’re coming.
If you’re new to Myositis? Go ahead and accept the fact that your life has forever changed. It’s never going to be the same again.
Think of it this way: if you lost your leg, you’d have to accept that it’s gone.
This is the same thing—you’re just lucky enough to still have your leg.
Accept it.
And move on.
Number Six
Stretch every day! Go to physical therapy and learn how to do it yourself—so you don’t have to waste your time with them.
It takes time and money to go, and you need to save your momentum and strength for something else.
Number Seven
Yes, you can work out!
In fact, it’s a requirement—because you have to maintain the muscle you have.
Look at it like this: your muscles are leaking, and you have to replace what you lose with new.
The doc won’t tell you this—or at least, they didn’t tell me.
Finally, I just said—screw it—can it really get any worse?
What’s the old Nike saying?
Just do it.
Number Eight
Drink a ton of water—and then drink more.
You can never drink enough!
It’ll give you more energy than just about anything else—look it up, it’s a fact.
It’s number one on every list of “how to get more energy.”
Number Nine
This goes without saying: eat well.
Plan your meals carefully—days in advance—and don’t forget the snacks.
If you’re going on a day trip? Pack smart, and pack light.
Learn how to carry what you need without getting weighed down. Think like a camper going on a one-month hike over the Appalachian Trail.
How would they plan? What would they buy to make life easier?
And always—always—have your meds with you.
I use tiny ziplock bags because they’re light and compact. I keep one day’s worth in my pocket at all times, with spares in the car.
If I’m going on vacation for a week? I bring a bag with 14 little bags inside—because you just never know.
Number Ten
It’s okay to take a nap.
I take them in the car a lot. When I get tired, I’ll take a 15-minute power nap.
But be careful if you go over 30 minutes—because that’s not a power nap, that’s falling into the trap.
Set an alarm.
Number Eleven
If you’re still working, you might have to give up your job.
Remember, life as you know it has changed, and now you have to work around your new life. I did—I had to give up my career. It was hard. It’s still hard.
Now, I drive for Uber and Amazon Flex, where I deliver packages from my own car.
It’s great because it’s totally flexible. And if I don’t want to work?
Guess what? I don’t.
Number Twelve
You’re not an egg!
You’re not going to crack or break. Don’t let them baby you—you’re not a baby!
You can do things. Matter of fact, you can do anything you truly want.
And then there’s Number Thirteen:
Can’t means won’t!
“I can’t do it.”
“No, you won’t do it.”
Yes, you can.
It’s a decision. It’s your choice to decide what you want to do.
What do you want to do? Do you want to feel sorry for yourself, or do you want to put in the work and do something about it?
It’s a question each of us must answer for ourselves, and I, for one, choose to fight until the end.
So, I’m getting back to work—because I’ve got places to go, and people to see.
🎈 Stu
