Episode 117 - MS, Men and Mental Health: Robbie Gillett's Poetic Perspective

This episode is a return visit for Robbie Gillett, a talented poet who lives with MS. We talked about Robbie's initial struggles with his diagnosis and how it led him to writing poetry as a form of therapy and self-expression. With the support of his wife, who encouraged him to share his work, Robbie has used his poetry to raise awareness and provide hope to others.

Robbie talked about his upcoming projects including a show and book titled "I Don't Like Poetry," which challenges stereotypes and perceptions about poetry.

Robbie's message to newly diagnosed individuals is to reach out and connect with others in the MS community, emphasizing the support and understanding that can be found through shared experiences. His upcoming book release in September will further showcase his talent and dedication to raising awareness about MS and mental health.

DISCLAIMER
The information in this podcast is for informational purposes only and is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare providers with any questions you may have regarding a medical condition or treatment.

Links and resources:

Sign up for the 10 Weeks to Disrupt MS Program

Connect with Robbie on Instagram, Twitter, and Facebook
Buy Robbie's book, Thoughts of a Warrior: Beneath the Tracksuit
Watch The Painter And The Poet on YouTube
Listen to Robbie's music on Spotify

Listen to Robbie's previous appearances on the Move It Or Lose It podcast: Episode 085 Part One and Episode 085 Part Two

If you're interested in having Kathy speak at your event, learn more here

Find out more about the DMAT Fitness Training program

You can find Kathy Chester at:
msdisrupted@gmail.com
disruptfitnessgym@gmail.com
moveitorloseit109@gmail.com

Connect with @msdisrupted on Instagram, Facebook, TikTok

Here are some additional products that help Kathy deal with beating the Heat and Migraines.  Take advantage of the coupon code.

Koldtec - Cool Head Wrap
KOLD10

To save $10 off every item in-store.
2 items = $20 savings
3 items = $30 savings

https://www.koldtec.com/

Cold bean bag Releafpack
15% discount use code Disrupt15

https://www.releafpack.com

Transcript

Kathy Chester: Hello, I'm your host, Kathy Chester, and welcome to the Move It or Lose It podcast, a podcast about all things that move the mind, body, and soul. The Move It or Lose It podcast is for information, awareness, and inspirational purposes only. I am not a doctor and I don't even play one on TV. So please consult with your doctor before making any medical decisions. The views expressed by advertisers, guests, or contributors are their opinions and not necessarily the views of the Move It or Lose It podcast.

Hello, welcome to another episode of Move It or Lose It. You may remember Robbie Gillett, who I had, let's see, maybe last year, two years ago, I had you, Robbie?

Robbie Gillett: Yeah, it was two years, it must be two years.

Kathy Chester: Two years, probably. So you may know him as beneath the tracksuit started doing poems. So we're having a little chat beforehand, but really excited to have you back again. I was so, I guess, a little jealous because I could never write a poem to save my life. But when we talked two years ago, I think you were still kind of coming into what is this all about? Why do I have this? This sucks. And not that it doesn't because it does. And that sucks. Let's be real. But It's like you kind of come into your own and you just seem more at peace, more knowing who you are.

Robbie Gillett: When I was first diagnosed, it was really difficult. And when I first started writing, it was really difficult because all of the symptoms, like all of the bigger symptoms and the progression was all really fresh. And I think the last two, three years as I've been writing, I feel like it's become a stage of acceptance for me as well. It's sort of, I accept that I have the disease, but I don't accept what it does to me because yes, well, it's not cool. But I think I've become a state is where I am is where I am. And I'm living as best as I can. Does that make sense?

Kathy Chester: Absolutely. I think there is. this like dance you got to do with it. You know, I remember when I was first diagnosed, going to the track and trying to run it out and thinking like, I'm going to beat it out. I'm not. This is unacceptable. And then through the years, there's a grieving time. You know, you grieve things that you lose, but there's also a time of acceptance that you have to do through the years of like, you know, this visitor that you didn't ask to come over. Is now here and living with you and there's got to be some kind of. synchronized thing that you have a relationship with this stupid disease that's not leaving, that you work together to have a life that works. And do we want it? No. Do we want it to go away? Absolutely. But there's a way I think of acceptance and still battling it and still not giving into it, but also understanding that life isn't the same. But if we want to enjoy it, there's things that we have to do in order in order to enjoy our life. Yeah. And I do think that there is a way that kind of comforts us as we're doing what we're made to do. And obviously, as I asked you, and we'll talk about it, poetry wasn't something I think you saw yourself doing early on in your years. I never thought I'd be doing the stuff I'm doing. I always loved movement. I always loved, I was always athletic. I didn't think that I'd be running, you know, an MS gym. I didn't think I'd be doing that stuff, but. Would I give it up now? Absolutely not. And it's just you don't know where life's going to take you. And there seems to be an acceptance with you. And I think it's really beautiful. And it's allowed you to accept. But not only that, but able to give hope to so many others. And I hope that you see that.

Robbie Gillett: Yeah, it's sometimes it's hard to see that. It's hard to see that because I get lost in my own mental health. So it is. I love it that it helps other people. I love it. I think it's amazing. So nice for them to not feel alone. And it's nice for me to not feel alone, too, which becomes so beneficial from sharing it.

Kathy Chester: Because it can be, as we know, a very lonely, depressing disease, right?

Robbie Gillett: Yeah. And that's it. And the depression sometimes it really does beat me, but that's when I write and then that helps.

Kathy Chester: Talk to us about diagnosis time for you. When was that? And what did life look like?

Robbie Gillett: 2015, I was diagnosed. So it's coming on 10 years nearly next year. I was a kitchen fit. I was 2014. This is my first significant symptom you could say. I had like stroke like symptoms at work. I was building a kitchen cupboard and I had a drill in my hand and I was just lent over this unit and I couldn't move. And I was stuck that way for 20 minutes. And then it was little finger, but little feelings in my fingers back and then arms, legs. And then I was fine. It was like nothing could happen. I thought I was going to die at first because I didn't know what was going on. So I thought I'm going to literally die in here. All of the 15 minutes why I couldn't move. I didn't have the foggiest because this sort of thing had never happened to me before. And then that's where the diagnosis became long and it took 10 months, I think, to go from then to get a diagnosis. I think three MRI scans, a lumbar puncture.

Kathy Chester: Which is the best. Who doesn't want that?

Robbie Gillett: Yeah.

Kathy Chester: So then you found out you had this disease. Did you know anyone in your family, anyone who had it?

Robbie Gillett: My next door neighbor's daughter had it. We were the same age and went to school together. And then I had another friend who also had it that I went to school with too. So we knew each other, but not knew each other well as we'd grown up. But yeah, so I knew people that had had it, but it automatically still scares you because you don't know what's to come. And then the more you investigate, it's scary when you're investigating. But again, Everyone's different and it affects everyone different. And that's the beauty of it.

Kathy Chester: So after diagnosis, talk to me about how you dealt with that.

Robbie Gillett: And when I moved to Cornwall, they said to me, hold on, you might not have MS, it might be something different. So they took my diagnosis away from me and said, suspected MS, it could be vasculitis, which I'd never heard of either. And then they did all of the tests again, went, that's where I had a second lumbar puncture. So another few more MRI scans and then, yeah, and then they went, yeah, okay, you were, they were right all along, you've got MS.

Kathy Chester: Not another lumbar punch, you're good.

Robbie Gillett: And then they give you all of the information and then it's hard to take in. But and then mental health, but I had hold of it at first because I didn't really have any symptoms. I didn't really have any symptoms short of that previous episode. There was like a month of weird symptoms, but and then I didn't really have any. Not really. And then I had the occasional relapse. My eyes crossed over once and they stayed that way for six weeks.

Kathy Chester: And so now I have to wear an eyepatch sometimes because of the... So like more optic neuritis or more like double vision kind of stuff?

Robbie Gillett: Double vision, yeah. Okay. When I overheat, I have to wear an eyepatch because my vision crosses. Okay. It's a really weird thing to just have a bit hot, put an eyepatch on because I can't see. But MS is filled with that.

Kathy Chester: I do the same thing, but on mine's the object and artist. And when I get overheated, I just put something on. Usually I'll do an eye patch that's cold.

Robbie Gillett: Yeah.

Kathy Chester: And that helps.

Robbie Gillett: That's smart.

Kathy Chester: So that might help you. So what made you decide, I'm going to just start writing?

Robbie Gillett: After my last relapse. say my last relapse, I'm sure I've had some since then, but since my last significant relapse, I had all of these new symptoms come, which put me with dropped foot, significantly weaker legs, and I get a bit of a speech impediment. I get claw hand, which is fantastic, in my left hand, I'll get that quite a lot, it's annoying. And then after that, because I felt a significant loss to myself, And then obviously depression sits in with that. I've got to change what I do because I couldn't be a builder anymore. I couldn't do this anymore. So I had to change significantly what I did. And I was at a loss. What do I do? What do I do? And I'm broken and depressed. And I was seeing a counselor and he said a thought diary, do a thought diary. And I wasn't very good at that. It was,

Kathy Chester: Do you think that that's harder for men to do than women? Not for everybody, but I think for guys, I think that's tough to do, to just constantly write about their emotions and feelings.

Robbie Gillett: Yeah. Well, the thought that it went, the thought that I went something like Monday, I'd just feel depressed. Tuesday, I feel like crap. Wednesday. And that was how it was. And then I needed to put some meaning to it. I needed to make something better. done that. So that's where I started adding verses to it. I sat up on my bed and I just wrote this poem. And the missus, Donna, was looking at me like, what are you doing? I'm not hiding it. I'm writing a poem.

Kathy Chester: She's like a love poem to me.

Robbie Gillett: Yeah. She knew I was struggling and I carried the pen and paper around with me to write it. And that was what came out. I wrote a poem. And it was good. I felt good that I'd written something that I could read back to myself, which would explain the negative thought process that I'd been having. So I decided that that's where I would go and I would just put my pain into verses. And then that's where it came. That's where it came.

Kathy Chester: So writing has not been an issue for you. So you can use your hand to write and all that. That's not been an issue.

Robbie Gillett: Yeah, well, I'm right-handed.

Kathy Chester: So you've been able to do that, which is awesome.

Robbie Gillett: Well, I do most of my writing with my phone. I do most of it on my phone.

Kathy Chester: Oh, right, okay.

Robbie Gillett: I've got two books and two poetry pamphlets out, and I did them all on my phone.

Kathy Chester: Wow.

Robbie Gillett: That's when I said to you earlier that self-publishing, it can be a challenge, but it is easily doable. It is easy. I did it all with my phone.

Kathy Chester: So the name of your first book was what?

Robbie Gillett: Thoughts of a Warrior.

Kathy Chester: Now is that on Audible as well? No.

Robbie Gillett: No.

Kathy Chester: Because that's always a struggle for me because I can't see out of this eye. So it's really tough for me to read. So I always want them on Audible. So you wrote two and the name of your second book was?

Robbie Gillett: A Diagnosis Journey.

Kathy Chester: So that's awesome. So that had to feel so good to get that done. And like, you really accomplished a lot, but now I'm going too far forward. Let me go back a little bit before we go too far forward. So after you started writing, like just on your own, when did you decide like, okay, I actually want to put this on something. I want to put it on Facebook.

Robbie Gillett: I didn't, it was Donna's. It was the missus. It was never my idea. I always had the attitude that men don't talk about their feelings. I had that attitude and I held that attitude for a long time.

Kathy Chester: Good thing for your wife.

Robbie Gillett: She said it could help people. It could help raise awareness. Look what it's done. I agree. I agree. But I owe that to her because it was my idea. I wouldn't have never have done I would never have started. I would never have started.

Kathy Chester: What so many men would have missed out on, and women, but you speak to a group of men that like you would not have shared things and would not have had that ability to read what you write and say, wow, this reaches me in an area that I wouldn't be able to talk about. And because of your openness to share and because of your wife, thank God, you are able to do that. You've done that. So you did your poems, you started putting them out, your Facebook blew up. So now how many followers do you have following you on Facebook?

Robbie Gillett: 8,500 on Facebook.

Kathy Chester: That's insane.

Robbie Gillett: I never did Instagram until like a year or something. I never did Instagram, but I think Facebook was easy for me. It was just easy.

Kathy Chester: I wonder if it's different in your location, if that's just a bigger grab.

Robbie Gillett: I'm not sure. I think everybody's got Instagram. I feel a bit old on that one. I'm way behind. I'm way behind.

Kathy Chester: Well, I don't know. I mean, you're doing really well, so obviously you're doing something right. So you use YouTube as a platform, but you use Facebook, YouTube. What are some of the other things you use? Instagram, TikTok, LinkedIn, LinkedIn and Spotify.

Robbie Gillett: Spotify, Amazon, iTunes.

Kathy Chester: So now you're on YouTube and you can see, you can hear your poetry. So when you, are you going to do a little bit for me today?

Robbie Gillett: I didn't prepare nothing, but I can read something for you. So this is called Men Know Depression.

Kathy Chester: Okay.

Robbie Gillett: Men know depression, but men don't show depression. Afraid of the stigma that you are weak if you should let your emotions leak. You're a soft bloke if you actually admit to someone you're feeling broke. Men hide, keeping the pain inside, locking in the damage, burying it in the deepest parts of the mind. Men know the fears of being seen as a clown or being shut down if you let your struggles out. So men choose not to shout. You may not see it, but men know depression. It's unusual when you hear a man has been struggling for years, but men feel the way it feels when you're holding back the tears. Men know what it's like to cry. The feeling inside leaving sadness weeping in the eyes. The inner sighs, the wanting to die. Men understand the feeling of why. Why am I broken? Why has the world turned its back on me? Why do I feel so empty? You may not see it, but men know depression. Men know they're giving up. Men know if they're having enough. They know if they're looking above with no religion and still asking God, why does this have to be so tough? Men know the hurt. They understand the heartache, the struggles that leave that lingering ache. Men know the broken waves of emotion, life with mental corrosion. Men are forever forcing internal thought suppression. You may not see it, but men know depression.

Kathy Chester: Thank you. Hmm. Bobby, thank you so much. That was that was beautiful. I just think it's so important for men to hear things like that because they don't they don't they don't let that go. They don't let that out.

Robbie Gillett: I saw a man with a T-shirt on and it said, boys get sad too. And I went up to him and I shook his hand and I said to him, where did you get that T-shirt? I want one. And then I bought one. And then I wanted to write something about men and depression. And that's where that comes from. And obviously it touches deep for me because depression is, I have MS, but depression is one of the biggest things that I fight.

Kathy Chester: We are so excited about our new program. It is not about disrupting the saddest foe. It is about empowering you to lead a life filled with strength, resilience, and joy. Join us on this exciting journey because disruption begins with you. Ready to make a positive change? Let's disrupt MS together. I can't wait to see you.

You really help out with mental illness. Talk to me about that.

Robbie Gillett: I'm here to talk. I'm here to talk. And I believe that sharing because a lot of my work is is really difficult to hear or it can be difficult to hear or read because a lot of it is based around mental health because the disability lives hand in hand with depression. And then I promote to talk. I think it's great when people talk. I attend support groups and things like this and it's nice to hear other men feeling the same way. It's nice to not feel like an alien. Absolutely. When it comes to things like depression.

Kathy Chester: I think mental health is such a crucial thing to talk about. And for so many years, it's been hidden and not talked about, not freely, especially with men. And I'm so proud that you've brought that out and that you talk about it freely, because I think it's so important that it is talked about. I'm just so grateful that you do like watching you this last couple of years and really wanting you to have to come back on is just been really an honor to watch how you've taken this crappy, crappy disease and turn it into something that helps you, of course, but helps so many others has been just something really beautiful to see what you've done in this and the artwork on that you never wanted to do, but that you've done so well. And that's just been something that I that I really, really appreciate. I want to talk about the mic night and how that even got started, because I saw that and I was like, that was so cool. How how the heck did you get into that now? What's that?

Robbie Gillett: Well, when I first ever performed on stage, I was sort of roped in by a few local organizations and it was one passed me to another, then passed me to another. Oh, you should go here. You're a poet. And so I went to an open mic night two years ago. So that was where I first started performing poetry. Then six months ago, the lady that was running the spoken word poetry nights there had to step down and they said to me like, Robbie, like this is going to stop. Would you like to become the new host for it? So I said, okay, okay. And they said, you can rebrand it. She said, it's all yours. And they gave me the position. This is yours. You, you carry on. So we created bring your verses. So other people could then come and share what they've been writing. And it's brilliant. We get people come from all over Cornwall, the Southwest, and they come in and they come and read their poetry on stage to a crowd.

Kathy Chester: And how often is it?

Robbie Gillett: Every month, once a month.

Kathy Chester: So what about talk to me about the nights? Because I have one, too, and I set out to do something and all of a sudden I'm like, I'm so tired. The fatigues that's in. What do you do when that happens?

Robbie Gillett: Well, I have backup. I have backup. I've just taken on somebody that can run the show with me. And I have a seat on stage so I don't have to get up and down to present anybody. I said to them when I started that I might need some significant adjustments to what the And they were completely over the moon with it. Yeah, they were like, of course, of course, of course. And they made it very accessible and they've made it very helpful for me. And they've made it so it's very simple. If I wanted to, I could sit in one chair and not move the whole three hours of the event. Wow. And so they've made it very accessible for me. That's great. And they've been a great support for me there.

Kathy Chester: That's awesome.

Robbie Gillett: The people that offered me the position were the same people that helped me up on stage the first time I got on stage. So they've watched me go from nervously hiding behind my phone on stage to now I can take the microphone, book in one hand, audience in the other. And it's brilliant. So they've seen the growth and helped support my growth too. And that's been fantastic.

Kathy Chester: What does your wife think about all this?

Robbie Gillett: She's over the moon. She is a reminder to me that what we're achieving because on my wall, I've got pictures of the magazines I've been featuring in around the world. And when the mental health sits in and it sits there and it tells me I'm a loser and that I'm incapable of doing anything, she's the one that's going to me, come and have a look at this and then look at what you're achieving whilst being depressed, whilst living with a disability. And she's quick to remind me that I've got somewhere. It's a good woman. I'm succeeding, I'm succeeding.

Kathy Chester: Tell your wife, I said, thank you very, very much for all she does. Okay, so moving on from there, I wanted to ask you, you've done so much, you've offered so much, you've given so much of you, what next? Where are you going from here?

Robbie Gillett: So I, beneath the tracksuit is there, and I will continue to be Robbie from beneath the tracksuit. but I'm taking poetry to a different sort of place right now. I'm building a show called I Don't Like Poetry, and I'm writing a book called I Don't Like Poetry. I was gonna ask you, what does that mean? Yeah, that's my backboard for my show. And it's going through a journey, because poetry has a pretty rough name for itself. I don't know about over in the States, but everybody's like, yeah, poetry is boring. You tell people you write poetry and they go like, So yeah, I built a show around that and the book is nearly finished. I performed the show to an audience earlier on in the year up in the city nearby and that was fantastic. So I've got another one coming up in September and then the book to match it. I don't like poetry.

Kathy Chester: And horrible.

Robbie Gillett: I do need to get into order. How do you even?

Kathy Chester: Yes. Yeah. And the best ones are the ones that the author reads. It doesn't matter. We don't care. It's just that you're reading it. So when you do this, you're going to do it as a book and you're doing it at you're doing as a player. How are you doing it?

Robbie Gillett: So, you know, if he was to see a stand up comedian.

Kathy Chester: Yeah. So you're doing it that way.

Robbie Gillett: A one and one man show.

Kathy Chester: And will that be visible for us to see as well?

Robbie Gillett: Yeah, I'll try and film it. So I'll get it recorded somewhere. Yay.

Kathy Chester: The things that you have up on YouTube, like we talked about, those are like we can see, we can hear those but not see them. Will there be a way that you that you see moving forward, like stuff that you're doing on YouTube will be visible?

Robbie Gillett: There is videos of me on YouTube, but anything that's on YouTube has already been on Facebook. So if you haven't got Facebook and you've got YouTube, then you're not missing out. There is videos of me reading poetry, but I don't do it too often. I should do it more, but and then my head just runs in with how busy I am all the time. I have two kids. And then I have MS as well. And then it's a battle. Lots of things are a battle. So I try and work around stuff. I try to give myself a schedule that I never stick to.

Kathy Chester: We can all relate to that. I've got a great schedule and notes and alarms that go off. And I'm like, wait, what was that alarm for? Crap. So I know. And then I'll have someone call and say, are you doing this that you had put down? I'm like, Yeah, I just put that down. I actually said out loud on YouTube or something and I didn't do it. It is tough. And I just asked for like, please forgive me. I have a mess and sometimes I forget, but yeah, I would love to see more, um, on YouTube, uh, being able to visually see you do some things, but I really love what you're doing. I love that you've taken such a crappy thing. and you're just not stopping. You're just keep moving forward and more ideas and more excitement. Like, what can I do next? Where can I take this next? And really, Robbie, like how much your kids are going to see and what are the ages of your kids?

Robbie Gillett: My daughter's 15 and my son's- Oh, great age.

Kathy Chester: Yeah. I mean, not yet. Believe me, my daughter, I remember that age. But later on, they will respect so much of what you put into this. And I just did a podcast a little bit ago with my daughter who just had a baby. And, you know, it's funny because long ago, you know, they knew little. I hid a lot because we didn't talk about it back then. You know, she never knew. I hid my bad days. I hid, you know, anything that was going on. And they're going to have so much respect for all that you've done. And when my kids now tell me, you know, those things, it means so much to me, you know, the respect they have for what I do. And I can just tell you that that's going to mean so much to you.

Robbie Gillett: No, thank you.

Kathy Chester: Absolutely. And Robbie, it's just been an honor to watch what you're doing with this disease. I'm blessed to know you. It's been great to see what you've done.

Robbie Gillett: It's likewise, we're in this together and I love that about our community. We all stick together and we're all there for one another. I think it's absolutely brilliant.

Kathy Chester: That's my favorite thing about this MS community. We are a very close-knit community that will drop something. It's that feeling of I'll do anything for you. It's that tenderness that we have in our community that I love. So now my last question, Robbie, obviously you run into people all day running into a newly diagnosed patient and you have one thing to say to them. What is it that you say?

Robbie Gillett: Don't be scared to reach out. Don't be scared to reach out. Cause like I just, we just said that our community is brilliant. Well, you will hit pockets of negativity somewhere, but the majority of it. I've got a support group, you've got a support group, and there's lots of support. There's lots of support out there. You speak to people daily. I speak to people daily. Many people that are in a similar position to what we are speak to people daily in help and support or have a form of a group where we help and support one another. And for me, it's reach out. Don't be scared to reach out because when I started reaching out, it opened up a whole new world for me. I was stuck in my little corner. I knew of people that had MS, but when I started reaching out, like I'm good friends with Matthew Price. I phoned him up the other day to just, I live in my corner of Cornwall and he lives in Nashville in America. And I just phoned him up on WhatsApp. So hi mate, how you doing? And then I've got my friend, Adam St. George. He's a painter. And I just found out Instagram him and we would never have met and we're good friends. Yeah. But that's from reaching out with MS.

Kathy Chester: 100%. Like when I go to a different state, I can go see someone. And it's like now we're like physically together. And that, I think, is such a cool thing. It's like my husband and I are going somewhere. I'm like, wait, I know this person that lives, you know, that has MS. And it's as I've grown with, you know, with the MS and with the podcast and like you said, reaching out and doing things, it's like, oh, I'm here and this person, I can see them. And It's such a great feeling to not just know them on our different, whether it's TikTok, Instagram, YouTube, but to be able to reach out and hold them and say, oh my gosh, now I know you this close. It's such an amazing thing to have this community that we never wanted, but now we do. And so it is a beautiful community. Anything else that you want to share about any upcoming things that you want anybody to know about?

Robbie Gillett: My book comes out, it should be out in September. My next book should be out in September.

Kathy Chester: Okay, awesome. Well, Robbie, again, it's always an honor to have you and I can't wait to interview you again. And I just, I'm really blessed to know you and to see what you're doing. I'm so grateful for all that you're doing for our community. And it's just been great to have you. So where is the best place to get ahold of you?

Robbie Gillett: Facebook.

Kathy Chester: So that's, we can get ahold of him. I'll have that in the bottom of the show notes. And of course his book will be out in September, which I'll be sure to mention as well. 

Well, thank you so much for joining us today on Move It or Lose It Podcast, where you can, again, find us wherever you like your podcasts, whether it's Apple, Spotify, and join us on that. And we can't wait to see you again. We're gonna have a lot of exciting guests and working together. And as always, you'll hear us say at the end of every podcast, we are stronger together. So let's do it. Let's become stronger together. Have a great day.