What's The Matter With Me? Podcast

I have multiple sclerosis, trigeminal neuralgia and I made this podcast to share what I’m going through.

Welcome to the What’s The Matter With Me? Podcast Episode 2.

In this episode, I struggle to control my emotions due to damage in my brain stem.

What’s The Matter With Me? is a podcast about multiple sclerosios, and many other things.

Recap – should I be on disability?  My philosophy.

I said I can’t – in violation of my philosophy, which is that I generally can do things.  I can work.  This podcast is about trying, and I’m not afraid to try and succeed and achieve.  I believe that I can achieve regardless of the difficulty.

I have a lot of brain stem disease activity, and it can make staying in control of my emotions difficult. I’ve been having difficulty with my morning routine on the weekends when my family are around. I have been meditating first thing in the morning, with some success.  It provides some perspective that helps me get through the day.

Transcript

JOHN HOPPIN: What’s The Matter With Me? Episode two. All right, all right, let’s get down to it. It’s What’s The Matter With Me? Episode two. I’m John, and I have MS. I made this podcast to share what I’m going through. Let’s recap the last episode, episode one. I sent it to like two people on email, and probably maybe they listened to it. Sometime you got to start small. So, what’d we talk about last time? I have a hot sauce business. We talked about that, my dream of employing disabled people, people who’ve been in the prison system, and veterans.

We talked about going on disability. I wasn’t sure if I was going to go on disability or not. Spoiler, I talked to my doctor. She said, “You should definitely be on disability. You could still make money and work while you’re on Medicaid.” And after that, I was kind of sold. Then we talked about my philosophy about trying to do things, and that’s what this podcast is about, so I think it’ll be obvious.

Part of it, listening back, something stood out. I said that I can’t, I used the word can’t. And even worse, I said I can’t work, which is so ridiculous. I have a company. I am on the radio on KFJC every Thursday, 10:00 a.m. to 2:00 p.m. And I do a couple of other things while I’m at it, and I’m a dad for two people. I can work. And whether or not I can work, I’m going to try and work. That’s my philosophy.

So let’s talk about working in the garden. I have a garden in the backyard, California native plants. I spend a lot of time back there. I have trouble sometimes. I’ve fallen in the garden and hurt myself. One time I fell into the side of the house, and I skinned my head, and I lost a bunch of hair. I mean, it was terrible. I’d basically head-butted the side of the house, man, and the house won. So that was tough.

Well, I’ve been working a lot, doing physical therapy and balance exercises, so I don’t fall in the garden, and I always wear my brace. I have an ankle-foot orthotic brace that supports my ankle, helps me walk. My physical therapist said, “You always have to have that.” And even I have a stick, like a cane, I use for balance, got to have that. I’ve started using that always when I go in the garden, and it’s reduced… I was falling every day, and it’s reduced my falls quite a lot.

Just today, I ordered some accessibility tools, we’ll see how it works. It’s kind of like a seat-stander-kneeler thing, which will help because I have to sometimes work on plants for a long time, and I need to sit near them. Maybe they’ll help. That’s cool to invest in the accessibility tools. Today I was trimming the rosebushes, and my hand comes into a fist like a claw, and it’s hard to get a glove on. I have to really work hard, but I did it. And I trimmed my roses, and I’m happy to say my rosebushes, which my grandmother planted at this house are alive and well, so maybe Grandmother and Grandpa, Grandma and Grandpa, shout-outs.

I’ve had inability to control my emotions. I have a lot of lesions, brain lesions, in my brainstem. And my doctor said, “Sometimes you’ll have the inability to control your emotions. It’ll feel bad.” And I didn’t know what he was talking about, but I’ve started to have that. I really have a hard time on the weekends because things are different. During Monday through Friday, I get up by myself. I have a routine. And in doing that routine, I kind of get a diagnostic sense of how well I feel, and how much I can do that day. But when I can’t do it, when my wife and my kids are up making breakfast when I get up, I got to take a shower. I have a routine, and it gets me ready, so when I’m out of it, it’s causing me a lot of confusion.

The routine helps me know, “Okay, here’s where I am.” I get my breakfast going. And I have a lot of confusion, which makes me upset because I don’t know what’s going on because there’s not really… My routine’s not happening. Instead, I’m reacting, and that’s difficult for me. I’m trying to manage that because I’m totally getting bent out of shape, going nuts, and becoming really aggressive because I’m just super confused. So that’s a challenge. Every weekend day we work on it, in the morning. And it hasn’t been going well, frankly, it just sucks.

And so I’m working on it, trying to control my emotions. I need a little support and understanding, probably a lot from my family, to let me do things like make coffee and things that allow me to see how well I’m feeling, with my motor skills, but also allow me to say, “Okay, I made coffee.” And I can go sit and have coffee that I made. So it’s little things, like I go sit and have coffee and my breakfast on Monday through Friday. On the weekends, the breakfast’s still going. It’s been throwing me off, and it’s been making me really upset. And I hope that just talking about it here, and saying, “I intend to be better,” will help me get better.

So, that’s What’s The Matter With Me? Episode two. Tune in next week, probably I’ll email it to two people again, and no one will hear it, but it doesn’t matter. What’s The Matter With Me? Episode number two, in the books.


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