Jeff Alex (3:30)

So how did you go about.

Steve Rose (3:32)

Because you kind of, a lot of

Jeff Alex (3:33)

it was you're working out for yourself. So you had went through vegetarianism, veganism. And how did you decide which thing was working?

Steve Rose (3:42)

It's a really good question. I think a lot of it is gut feel and also just instinct. Instinct and gut feel really about what works but trying different things. You know, I would, I remember trying supplements and just. And also thinking what I know about the disease because I did read about it. These kind of things seem the right thing to do, you know. So therefore it was about know when I'm going in the right direction I think and what works well for me and what works negatively for me. So those kind of things. So a lot of it is gut instinct I would probably say is, is the real thing. And also the evidence for me was that you know, I think of myself as, as reasonably healthy still. I still exercise regularly. There are things I can't do. But yeah, I think of myself as quite healthy and I don't, I'm not angry at the disease. So there's attitude around that as well.

Jeff Alex (4:37)

And so you mentioned sort of being healthy and fit and I believe you ran a 10k to mark the 30 year anniversary of your diagnosis. So how did that go? Running? Yeah, running a 10k with MS?

Steve Rose (4:51)

Well it's interesting actually because I've always sort of looked at stuff and challenged it and I did that recently really because I've always lived quite, quite an active life but, but walking and stuff. What I felt I couldn't do was aerobic exercises. So I kind of told myself the story that aerobic was bad for my Ms. And that was a. Something I believed and I lived with for quite a long time then about. It must be about two years ago now I started thinking, do you know what? I'm not sure if that's true. So I started doing The Couch to 5K. Couch to 5K is a program but it's about taking small steps to see how you get on to reach 5k. I ST I started doing that and I was really nervous doing it because the last time I did any exercise to get I was like running. I'd had an attack. So I had a relapse. And so I kind of had already told myself a negative story about that. But what I started to do then was challenge that belief. I had start doing the couch to 5k. I took it really easy, pretty. But in the end I got the couch to 5K. And then that was probably a year before my 30th anniversary. And I just thought, you know, what if I keep just gradually moving up I think I can get to 5, 10K which is. Yeah. Which is what I did. And I took it. It was scary sometimes when you're doing it because you're thinking is it going to cause me problems? But the 5k was fine. And now I think I've gone back to 5k as being reasonably easy okay to do. I don't really need to worry about doing 5k. The 10k was a harder challenge and I didn't really do it fast, but I did it. Yeah.

Jeff Alex (6:29)

And you mentioned psychotherapy. So how do you approach the stress management and the. That mindfulness pillar of rms?

Steve Rose (6:39)

So for me it's, you know, I used to work in a high pressured IT job that didn't work out particularly well in major industry. So I couldn't do that job anymore. But I'd already started training from a quite a young age actually probably around about just before I was diagnosed. I started training in psychology and then I went on to counseling and I kind of kept that in the side when I was still working in corporate world and I kind of developed that. And then when I couldn't work anymore in corporate IT I started working then as a psychotherapist. And the reason it works really well for me is because I'm focused on the moment with the person in front of me and I don't need to be worrying about a hundred different things at once. So it works really well for me. And how did I. How do I manage in terms of my mindset and brain is I. I take regular breaks, you know and I take these things, I call them micro naps. Where. Which is basically meditation. So I will sit in a room where I'm not disturbed, set the timer for. For 25 minutes to 45 minutes and I would just rest, let all the dust settle on where my brain is and then I'LL get up and I'll tackle my next challenge for the day.

Jeff Alex (7:56)

So. Because I can imagine there is that sort of, like they say, sort of physician, physician, heal thyself sort of thing, but you could end up taking on other people's stresses. Even though you might be there to deal with someone else's stress, you could be actually onboarding it to yourself as well, making your situation even worse.

Steve Rose (8:14)

That's exactly right. But I guess the thing is when you, you know, it's years of training to do this, and you learn how to recognize your feelings with other people's feelings, and you learn then what to do with those feelings, you know, so you have a professional network around you, which is what I do, where I can talk to people confidentially about some of the issues going on with me or with what's going on in the work when I'm dealing with clients.

Regina Beach (8:42)

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Jeff Alex (8:52)

And so a thing that I've, I've heard a term that you've used is that you visualize your Ms. As a tiger in a cage. So can you explain a bit about that philosophy?

Steve Rose (9:02)

Yeah. So, yeah, what, what, what I visualize is a big cage, and in that cage is me and, and the tiger. And, you know, sometimes it.

Jeff Alex (9:11)

You're in it, you're in with the tiger.

Steve Rose (9:13)

I'm in the cage. Yeah. So that's it. When you first get diagnosed, you realize you're suddenly aware you're living with this beast. You're living with this thing bigger than you, more powerful. It can destroy you, it can hurt you, it can scar you. And you can either live in fear of this thing or learn how to live with it, work with it, understand its breath, understand how it works, how it operates when it's scared, when it needs calm. So if you learn and you look at it as an external object, something that you can't control in that way, but you, you then learn how to live with it. And I, that's certainly how I visualize my, my ms, really. And when you talk about running, not bizarrely, I visually, quite powerfully remember the last. On the last day when I was doing the couch to fight K on the last step, which takes about two weeks, two weeks, maybe a month. I was running the last section of that, and I was visualizing the tiger next to me. And it was, it was, it was almost jeering me along as well. You know, it was running with me. I was I was telling it, come on, we can do it, old boy, you know what I mean? And we were just. And I really do visually remember that. And seeing that tiger next to me in my head, that's, that's with me when I'm running, that, that last bit of 5k.

Jeff Alex (10:33)

So you're not scared of the tiger anymore?

Steve Rose (10:36)

No.

Jeff Alex (10:37)

You're still living?

Steve Rose (10:38)

I've gone through stages of being scared of the tiger and I still, you know, it's still, I can still feel its breath and it still scares me. But, but that's okay. You know, I've got to, I've got to understand its breath and when it's near me and when it's, when it, it's angry or something, so I can respond to it and make sure I'm not going to aggravate it.

Jeff Alex (10:57)

And how did you accept your diagnosis, which is probably quite different from now because 30 years ago things have changed dramatically. But how did you come to accept your Ms. Diagnosis? And what was that process where you started to make lifestyle changes?

Steve Rose (11:12)

I think for me, you know, it's the normal process of grief. And I went through a lot of stages of actually being angry at it, crying. So I had a lot of emotion about it. But I also, I told everybody close to me. And really what happened by doing that, I think is part of the grief process, which is what you go through when you're diagnosed and actually what you live with on a day to day basis with the changing nature of it. So I live with that diagnosis and I, I lived with, I sat with it, I felt it, I experienced it, the sadness, the thinking my life is going to change, et cetera. But I think just time and talking about it, which I've always done, has really helped me through that, really talking about it to people near me, not having to relive the trauma of having to tell people all the time and relive it. But then I got on with my normal life, really. I went back to work and I worked for 30 years, you know, virtually with, with still with it, but being aware of it. I would tell people a lot what it was. Yeah. So that's probably how I dealt with it, if that makes sense.

Jeff Alex (12:20)

And what tips, as a sort of psychotherapist, if you had someone who came to you who's just been diagnosed with ms, what tips would you have for that person to come to terms with their diagnosis?

Steve Rose (12:31)

It's really hard. I don't think there is a one size fits all. Everyone is different. But I think, um, I think it's in. I think it's important to talk about it and to. And to not hide how you feel about it. It's okay to feel really scared. It's okay to feel hurt, angry and all those feelings and just really understand that that's okay. Make sure you know as much as you can. You can talk to people as well because when you talk it just takes away so. So much of the. So much of the pain, I think. So I think the most important thing I think is. Yeah, talking about it.

Jeff Alex (13:06)

So do you. Have you got recommendations on how you would communicate and manage relationships with. With your closest people, your friends and your family after you've been diagnosed?

Steve Rose (13:15)

It's difficult because. Because ultimately you've got to find your tribe. You've got to find people who you can speak to about it who aren't necessarily going to be affected in the same way as your loved ones in your immediate family. Tell. Tell your loved ones sometimes that you're scared of the future and what it looks like. They might not really understand that fully because if they don't have ns, they won't necessarily understand what it. That means. So I think it's a mixture of things, really, if I'm honest, Jeff. It's a. It's having people close to you. You can share things with your. Your fears, but it's also having. Finding your tribe that you can talk to and feel comfortable saying that this is really, really crappy having this and I don't know what to do with it. And someone else said, yeah, I. I feel the same way. And that that can make you feel. It might make it feel easier to

Jeff Alex (14:03)

carry that to finding an Ms. Group as independent to your friends and families.

Steve Rose (14:09)

Yeah, yeah. Or. Or a therapist. Or a therapist. You know, a therapist is really good because they're not. They don't understand your world. They've got no skin in your game. You can say what you need. And I think that's really important.

Jeff Alex (14:22)

And as a. As a man with ms, that's another sort of subset. So we're already a sort of like an unusual disease and we're. We're an unusual subset with unusual disease. So to find that tribe, I believe that you might have a mission in the UK to set up a virtual pub for men with Ms. So I was just going to ask you to talk a little bit about that idea.

Steve Rose (14:45)

Yeah, that kind of started. It's, it's. It's not just the uk. I look at this as a global thing. I started Mighty Spoons, the name of the pub is called Mighty Spoons. And the idea of it is that is for blokes with Ms. Who can come and they can have a beer. I want to make it not so much about my diagnosis is this. I want to make it more about, you know, removing the label from people. They can talk about it if they want. It's relaxed, there's no real pressure for them to talk about feelings. And it all started really, while I was visual thinking about different ways about talking about stuff. And I. I came up with this idea of a jukebox. And the idea of the jukebox is, you know, you put a dollar in it and you spin the wheel and it comes up with a song and the group can talk about what the song's about, or the group can just listen to it, whatever, and other people can talk about it. So. So, for instance, it's a way of sort of externalizing certain things and making it a bit of fun, trying to work it out, you know. So, for instance, it might flip around. It might come up with Sex and Drugs and Rock and Roll by Ian Jury and the Blockheads, or it might come up with I'm Still Standing by Elton John, you know, Running up that Hill. So there's loads of songs that bring up different subjects that people can talk about if they want, or they can just say, yeah, it doesn't affect me.

Jeff Alex (16:13)

But ultimately it's just going to be guys from around the world getting together. Who's got Ms. Getting together for a chat, which might just be a social chat.

Steve Rose (16:22)

Yep, yep, absolutely. And that. And that's kind of what men do. Well, we can talk about sport and then, you know, we can talk about that stuff really, really well. We probably find it harder to talk about the hard stuff, but sometimes, I suppose when confidence grows and you. You're around people who understand it more, you can feel more able to do that.

Jeff Alex (16:42)

So as a final point, do you have any tips for those newly diagnosed to Ms. Or potentially just new to the Overcoming Ms. Program?

Steve Rose (16:52)

I think the. The thing that I'd say about it is you've got to learn to understand the rhythm of your body, how your body works, and you've got to also acknowledge the enormity of what a diagnosis comes with, and knowing it changes all the time. It's a living thing. It comes, it goes, you can manage it. It is possible to manage it, I think. And hope is not lost, but the feelings you have and what can happen. And it's a random disease in many ways as well. So you can't always control it. So just to be, just to sit with that is really hard. But the most important thing I think to answer your question is to talk about it.

Jeff Alex (17:29)

Okay. And with that, thank you very much for joining us.

Regina Beach (17:31)

Steve Rose thank you for listening to this episode of living well with Ms. Please check out this episode show notes@overcomingms.org podcast. You'll find useful links and bonus information there. Don't forget to subscribe to the podcast so you never miss an episode. And please rate and review the show to help others find us. This show is made possible by the Overcoming Ms. Community. Our theme music is by Claire and Ma Dean. Our host is Jeff Alex. Our videos are edited by Lorna Greenwood and I'm the producer, Regina Beach. Have questions or ideas to share, email us@podcastovercomingms.org we'd love to hear from you. The Living Room with Ms. Podcast is for private, non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice, please contact your doctor or other licensed healthcare professional.