Living With Multiple Sclerosis: Marcus's Story of Positivity and Purpose

What is it really like to live with Multiple Sclerosis?

In this episode of Dis-labled, Marcus shares his experience of living with MS, how it affects his daily life, and the challenges he faces along the way. He also talks about the things that keep him motivated, including his love of Marvel, staying positive, and finding purpose through difficult times.

Marcus's message is simple but powerful: don't let a diagnosis define your future.

00:00:16 - Intro
00:01:06 - The Good News
00:03:54 - Marcus explanation of Multiple Sclerosis
00:06:01 - How MS effects Marcus
00:09:16 - Routines with MS
00:14:04 - Can you learn to make things easier?
00:15:05 - Masking Multiple Sclerosis
00:17:00 - Friends with MS and Stages of MS
00:18:30 - What does Marcus do for fun?
00:21:50 - What Marcus wishes people knew about MS
00:24:44 - Marcus' biggest achievements
00:27:35 - Final Thoughts

Project Managers: Andrea Rai & Phil Powell
Editor: Phil Powell

Huge thanks to the National Lottery Reaching Communities Fund for supporting our Dis-labled podcast. Learn more about their amazing work: https://www.tnlcommunityfund.org.uk

All enquiries: podcast@communityfocus.co.uk
Website: https://www.communityfocus.co.uk/

Theme Music: Rastko Rasic & the students of Community FocusOther Music: Jazzy Frenchy by ⁠⁠⁠Benjamin Tissot

Transcript

Phillip R 0:00

Community open. Communicate open. We're here for you. Our view.

Intro

Carol 0:17

In today's episode, our newest member, Marcus, opens up bravely about living with multiple sclerosis, how it affects his day-to-day life and the challenges he faces along the way. Marcus shares the things that keep him motivated and some brilliant advice about facing life or living with his condition. Marcus's message is simple. Stay positive and write your own story.

Marcus 0:48

Hi, in today's room we have Amir, Philip, Carol, Jonathan, Havva, and Marcus.

unknown 1:00

Woo!

The Good News

Phillip R 1:06

Yeah, I've got some very good news to tell you all. I'm a trustee of Community Focus and I I have um been asked by Liz, who's the manager of Community Focus, to do interview people next Tuesday. I s and I said, Why why me? He says, You're very good with people, yeah, you very good talking, you know? And and we want you to well I we want you to to be um the interviewers, you know. And I thought, wow, I thought I thought I thought so proud, but I gotta let someone down, my Karen, because usually I go to see Karen on Tuesday. But when I told her on Tuesda on Tuesday, she was a bit upset, you know. But she understands now, she understands how how what what how important I am to community spokes, you know. And I felt really proud of myself, you know? So can I ask you a question, ladies and gentlemen spoons? What do you think of it? What do you think of uh what I told you?

Jonathan 2:04

Well done. Well done, Phil. It's a good job.

Gila 2:08

Phil, it's really great and honestly, you are a big part of CF. Being a trustee is amazing, and saying what you just said is amazing, so well done.

Phil P 2:20

Have you thought of any good questions yet? Um are you getting emotional, Phil?

Phillip R 2:26

Yes, I am, I am, I am so. Sorry, I'm sorry. But I'm I I just feel I just feel I don't know what to say. I'm sorry, ladies and gentlemen. I know I shouldn't I didn't I I feel awful being like this in front of you. Sorry, ladies ladies and Jenny Spoon, sorry. But I just feel I feel choked. I feel so I feel choked, you know? And I've been with the community focused a long time ago, you know. I think we've I mean it was at the Art Stepper as well. And now it's here. I've I've just felt so proud of myself, you know? I just feel and I'm glad I got you all with now me. Thank you, ladies and gentlemen. Gentlemen, thank you very much. You're all good friends to me, thank you.

Phil P 3:10

Have you thought of any good questions for the person you're interviewing?

Phillip R 3:14

Several people. I I think all I think I'll say, have you been with people with their own difficulties before? And how would you treat them if they were upset? Because some people don't understand what it's like to have a disability until one day it might happen to themselves. Yes, yes, yes it is, isn't it? It is my motto, yeah. I'm I'm I told my some of my carers that it really please please with me, yeah? It really pleased, you know. Woo.

Marcus explanation of Multiple Sclerosis

Marcus 3:54

Hi, I'm Marcus, and I have something called MS, also known as multiple sclerosis, and it's a neuro uh can never pronounce this a neurological disease. So for example, it just takes me a lot longer for my body to do things. Um, if I want to raise my left hand, it will take maybe three, four seconds longer than the average person to realise that that's what I actually want to do.

Jonathan 4:20

How would you describe your condition to someone who has never heard of it?

Marcus 4:24

That's a good question because I'm still figuring out what is it actually is really. Um, like I said, I wake up with pins and needles, um, it's a neurological thing as well, which makes my memory quite bad. Could be old age as well, and that's one thing it always keeps you second guessing of what your condition is and how it affects you, really. Basically, when I first got diagnosed with MS, um, I did end up in I was bedbound for a good long time. Um after at least a year, because I've been on medicines called Capaxone, Avinex, those are like daily injections or weekly injections, and it was a struggle to keep up with that. So, yeah, I got out of the wheelchair by slow progression, like I said, with um it was uh mental mostly, but uh the doctors gave me physiotherapy. Um, I went to the hospital, I did that. There were small training exercises that I did at home. Buy yourself some little gym equipment, so it's like I've got a resistance band now as well. They come in different sizes and strengths, and so just find little things that can help you. And my advice is because what I started off with was no equipment whatsoever, it was just a bottle of water, and then increase from 500 millilitres to one litre, and then one day you'll be able to do a big two-litre carton of milk.

Carol 5:58

What symptoms does

How MS effects Marcus

Carol 6:01

your condition affect you?

Marcus 6:04

Oh, the symptoms I get is like I said, pins and needles, um, hot and sweaty complexes, like right now, um, anxiety issues, but I don't know if that's MS or just me. Um cramps, stiffness, um bladder control is also one of them, slow in words, and there's quite a few others, but again, struggle to remember. I got diagnosed with MS only about 10 years ago, it was 2008. And funny backstory is I actually used to be a fishmonger butcher. So the way I actually found out I had MS was I was gutting the fish, and one day I went to give it to my customer, I couldn't let it go. And then I was rushed to hospital after that, and three days in the hospital, that's when the doctor said, I've seen something like this, it could be MS. That's how I found out about it.

Phillip R 7:01

How did you feel when it when the doctor said that to you?

Marcus 7:04

Um, at that time I felt very disheartened because I thought the worst of the worst is I've seen people with MS before because I've got a family member that's got something similar to that, and like I said, they ended up in a wheelchair. Uh no, actually, they they didn't even get out of the wheelchair, they was literally bedbound uh for a good two years or so until they passed. Yeah. Um so it's just me thinking that how can I overcome it and what can I do? I think what are like the high levels of like once it kind of affects you fully, like what can you not do once it again with it all, if I was in the worst case scenario stages with MS, that would be like I said, the progression symptoms number one, I think. Um hopefully my doctor will be able to explain a bit better later on when I get the information. But it would mean basically not bedbound, but I would most probably be on a wheelchair. Um getting about would be an issue. Um and just general hygiene, looking after yourself, like brushing your teeth, washing your face, little things like that.

Carol 8:22

Does it like affect like does your condition affect your your mental state, like your your personality and your like your feelings and your emotions? Does it affect that?

Marcus 8:35

Uh yeah, yes, it does affect a lot of things like that as well. I think with my feelings and emotions and everything, I think this is where again I wear masks because I don't like feeling down, I don't like feeling sad or upset. So I would always look for the best possible thing. Even in pain, like I have my pins and needles, I go back to what I used to say before I had multiple sclerosis when I used to be at the gym, no pain, no gain. And then you make it from there.

Routines with MS

Phillip R 9:16

What's something in your morning routine that people probably take take for granted?

Marcus 9:23

Well, I think it would be waking up pain free, really, because with my MS, there's a lot of people that are different. My pain is predominantly down on my left side of my body, so I would wake up with pain, shakes, and pins and needles all down that side. So it would definitely be pain free. And the second thing would be is just to have a clear head because I'm so struggling on the pain and how to get over that, I forget what my actual daily routine looks like.

Phillip R 9:50

Does it take you longer to get ready?

Marcus 9:54

Yeah, it takes me ages to get ready because, like I said, with my MS as well, I'm quite forgetful. So I always forget um silly little things like have I even brushed my teeth? Do I need to eat breakfast? Um, have I got because ah sorry, I only figured this out earlier. On my way down here, I did some quick shopping, and as I was doing my shopping, it's only when I got home, I actually realized I had my t-shirt on the inside out. So I suppose that's another clear example of what the day looks like for me. And for little things like that, because I struggle with like small little things, as I said, like buttons and shoelaces. Uh, one of my tricks is I never actually undo my shoelaces, I always use a shoehorn and try and squeeze it in. Um, things as well. Can I find my shoehorn? I haven't seen that in a little while either. So yeah. Do you need help from anyone? Yes, I would say so, but again, I'm quite a big-headed person. I don't like to ask for help. I always try and figure it out myself, and like I said, if I wear my t-shirt inside out, I look good doing it. So I'm alright with that. If you don't ask, you don't you don't get I think because of my past traumas is one reason why I've kind of stopped asking. So that's something to look forward to later on, hopefully.

Havva 11:16

What part of the day is artist for you?

Marcus 11:20

Um the hardest part of the day really is after I eat, really, because I always feel like I just need a nap. And it goes back and forth because I will kind of beat myself up emotionally to say that I've still got things to do. So guess what? I don't actually eat until most of my tasks are actually done throughout the day. That's how I try and manage things the best way I can.

Havva 11:46

And any time your energy drops?

Marcus 11:49

Yeah, the time my energy drops is mostly after lunch, so in between 12 and 2 o'clock, because that's the time where your body says to you you should eat, but yeah, I think that's the best struggle that I have as well. It's just carrying on.

Havva 12:07

Busy places difficult for you.

Marcus 12:11

Yeah, I really don't like busy places at all. Um, it just makes me panic and more anxiety happens because I feel like everyone's looking at me. Um I I just don't like crowded places, it's just too busy. It's like um, it's like that saying a small fish in a big pond, but it's an ocean out there. What takes you longer land people realize? I am well what takes me longer more than anything is just getting ready for the day or doing daily tasks because I'm like I said, I'm very forgetful. So, for example, when I first got multiple sclerosis, um I couldn't remember anything I was really doing. The amount of times I locked myself out of the house, for example, uh, always brought the wrong thing for food shopping. Um, all so basically, I it had to be like an everybody hates Chris episode. Everything around my house was done by sticky notes. Where are my keys? By the door. Do I need a phone? Yes. There was my disabled badge in date. That's another thing that just is quite annoying. Have I even got it to get on the bus? And it just carries on stuff like that as well, with just remembering what I need and what I would like, not what I want, is what I realise in life. Does it frustrate you when people rush you? Yeah, that again for a couple of episodes back is one of my pet peefs because if you're gonna rush me, uh like I said, I'm quite forgetful. I'm not gonna remember anything that you told me. Um I I live my life by sticky notes and taking notes. Uh, if I haven't got that with me, and you just throw something at me directly, it builds up all my anxiety, I get stressed out and everything, and I kind of sort of almost shut down basically.

Can you learn to make things easier?

Marcus 14:04

Have you learned words to make things it easier? Um in learning ways is very tricky for me because one day it works and then other days it doesn't. So I feel like I'm on constant ways of learning new things to do, and it will never ever change that way. There are other ways that I've learned to manage things a lot better, but again, I can't remember what they actually were. It's just like I said, with my shoelaces, my shoelaces have been tied up for years now. So, same with my shirt buttons. If um if I need to go out to a wedding festival or a party or something like that, the only button that's undone is the top one, just so I can get my head over. Uh, there's so many things that I've learned to do and basically just leave it as that, and yeah.

Phillip R 15:04

Marcus,

Masking Multiple Sclerosis

Phillip R 15:05

do you ever pretend you're coping better than you actually are?

Marcus 15:11

That's a real good question because the way I see it, I'm an actor in this life. Um, I constantly wear faces, and if you remember, if anyone's listened to any of the rec uh older podcasts where my superpower is a chameleon, that's what I mean by masking. I will fit into any place, any area, any facility, and just blend into the background. Um my superpowers, like I said, a chameleon is hiding in the shadows. I will let everybody see me, but nobody knows me. And I don't know if I like it like that, but that is my hidden talent. And yeah, going back to coping with things and telling friends and family about it, I don't tell them every I don't tell them absolutely anything. I'm always Mr. Happy Go Lucky, so I don't tell anybody how I'm actually emotionally feeling, um, because that could be some very sad days. I don't tell anybody when I've got physical pains with my pins and needles, I will just hop the best I can. And I think now that I'm smiling about it, one of the things I've learned to manage that is I will dance, maybe a little hop and a skip every now and again as I take a step, but I'm proud of doing that. Does it make does it make you tired afterwards? With that, it makes me extremely shattered after pretending of something that I'm not. So my new thing is as well is like I I feel like an old person. I like my afternoon naps. I if I don't get my afternoon nap, I get quite cranky.

Phillip R 16:50

What time's it due then? What time's that nap due, Marcus?

Marcus 16:56

That that nap is due when, like I said, when all the tasks are done for

Friends with MS and Stages of MS

Marcus 17:00

the day. Okay. Yeah.

Phillip R 17:01

Have you met anyone else with it with your condition?

Marcus 17:05

Uh yes, I have. I've met a few people with my condition as well, and like I say, everybody is different. Uh, there's one gentleman that I go to another organization with, and he I sorry, here's one thing that I remembered now. I suffer from multiple sclerosis, and I'm on the second progression stage. Uh, with multiple sclerosis, there are three stages with it all. And the my friend that I was talking about, he's on stage one, so he's actually in a wheelchair, and he got out of it the other day because he changed his diet, but now barely walking on the walking stick. So thank you for helping remember stuff like that. Well, are what what stages are two and three? Uh well, you've got first uh multiple sclerosis stage, secondary multiple sclerosis stage, and the third one is a bit more technical that I can never remember because I'm not at that stage and hopefully won't get there. How do people react towards you? I think people react to me quite kindly and quite inspiringly because again, I'm a superhero, I wear my mask, they won't know what other stuff I've got going on or what I'm actually struggling with, and like I said, I'm a happy-go-lucky guy, so I like to smile and keep continuing that way.

What does Marcus do for fun?

Carol 18:30

What do you do for fun or switch off?

Marcus 18:34

Uh, for fun, really, is I like to play the PlayStation but not as much now, and I'm actually got a bad addiction to a mobile game call, but it's all Marvel based. So I'll say bad comes with the good because I love the storylines for it.

Carol 18:53

What helps you forget about stress for a while?

Marcus 18:58

No, this is a two-part answer because, like I said, I've got the mobile game in, but recently, in the last two months, um I've picked up meditation, just listening to calm music and letting the negative thoughts evaporate like a cloud.

Carol 19:16

What do you look forward to most in the week?

Marcus 19:20

What I like or look forward to in the week is just seeing friends, family, doing all my organisations with my communities. This is basically the top of the notch that I've got going on, and seeing everybody happy and smiling.

Jonathan 19:38

What's your favourite TV programme, film, or comfort watch?

Marcus 19:43

Oh, that's a great one because with TV programmes and movies, like I said, it's everything Marvel. Um, my game's based on Marvel as well, and they've got their own little hidden stories. And comfort one would be classic friends.

Havva 19:58

What's your fair what's your favourite Marvel character, and what's the worst?

Marcus 20:03

Oh, favourite Marvel character is Rolverine because he can heal and take on so much damage, and the worst would have to be Ultron, only because technically he's now, he's AI, and we're heading up that way, so it's very scary. Yeah. What do you mean, what do you mean by AI? Oh, AI is artificial intelligence, so it's with all of these new things that we're learning with AI, and with me, one thing that Marvel has done to me personally is show the future because we're building AI robots and agents, but we don't un fully understand what they can really do. AI is a good thing and a bad thing. So I'm gonna go back to a Spider-Man quote where Uncle Ben told him, with great power comes great responsibility.

Havva 21:02

If you can spend your first day doing absolutely anything, what would it look like?

Marcus 21:12

That's fantastic because if I had a whole day to myself, uh I think actually I would definitely keep it to myself, and it would be somewhere on a warm beach with a cinema complex outside in the sand watching everything Marvel from phase one till now. Who is there with with you? Well, this is the thing, I would like to be by myself, but if I could have anybody with me, it would be all the Marvel directors and actors and actresses.

What Marcus wishes people knew about MS

Marcus 21:50

What do you wish people understood about you your condition? Every day is different. Like I said, I wake up with pins and needles. Um one embarrassing. I know one of the questions was supposed to be has there been any funny kind of moments that I can laugh about? And it's funny but embarrassing at the same time because with my MS it affects my bladder control. So sometimes I had had a few accidents along the way, but I can laugh about it now because it got me a day off of work. Can't complain, hey. What the biggest misconception? Uh the biggest misconception with MS, I think, is like I said, every single person with MS is absolutely different. None of us are actually the same. Um, one of my effects as well is I'm no good in the heat. Uh others are no good in the cold. So it is one of those things where I do wish and hope that people could just be more patient with us and take more notes of what we're actually trying to say, not what they want to hear. So with MS as well, like I say, it's more of an invisible condition. Um I believe one day I was on the bus and everything, and this is when I first was diagnosed with it. I had a walking stick and everything, and it's really bad how no one actually got up or even offered a seat towards me. Uh, that made me feel really, really dishearted as well. I think the other thing that I I forgot to mention as well is not a lot of people know about hidden disabilities. So, for example, what I mean by that is um I do believe it's the sunflower logo or badge where I used to wear that as well, like I said, when I was getting on the bus, and people didn't actually know what it meant and thought I was just trying to dial a ride, sort of thing, really, which is another thing that's quite hard to get to. So there needs to be more help in helping people get about.

Carol 24:00

What's something you're proud of that most people won't realize?

Marcus 24:05

I think one of the things that I'm most proud of is how I remain to be me. I'm a fun loving guy, and I think even through my disability and all my post-traumatic traumas, should we say, I won't let them defeat me. So I'm just gonna keep on riding the wave and live the best life I can.

Carol 24:28

Was there a moment where you surprised yourself?

Marcus 24:34

Um, yeah, about an hour ago when everyone told me I'm doing a podcast about me, basically.

Marcus' biggest achievements

Carol 24:44

What achievement means the most to you?

Marcus 24:48

Uh the achievement that means the most to me is uh my five wonderful children, really. I think with everything I've gone through, if it wasn't for them, I'm not quite sure where I would actually be at this precise time. So definitely the kids. And my mother, of course, because when she's listening to this, I love you, mama.

Carol 25:08

What inspired you to have five children?

Marcus 25:14

That is a really good question. Um I've when I was younger, I used to play basketball, and I said I wanted a team of my own one day.

Phillip R 25:27

Um, can I ask you a question? How does your kids um react towards you?

Marcus 25:36

That's a good question because with the kids, they just see me as dad, they don't actually realise that sometimes I've got multiple sclerosis, and I don't know whether I'm hiding it, but they know when something's bad with me, and they will pull me up on it and tell me to sit down and help cook and help clean and sometimes even help get dressed. So I'm proud of that.

Jonathan 25:59

What would you like listeners to remember after hearing your story?

Marcus 26:05

Oh, that's a good one because after you hear my story, I want you guys to write your own story. I want you to live your own dreams. I want everybody else to be happy in what they're doing. I want you to recognise your own personal negatives that may upset you, and what you can do to change that that will make you happy. Yeah, and if you have a similar condition to mine, my thing would be don't be like me. Reach out and talk to somebody, ask for more help. Whether that's your friends, family, doctors, anybody that could listen. I would just like to add after all of that, it this stuff does sound really good and really simple, but I would just like to let you know it has taken many, many years to get to this stage.

Carol 26:58

Is your condition rare?

Marcus 27:02

Two in one thousand people have a similar condition to me. And like I said, with the organizations I go to, uh, one of them reach out to MS Coffee Morning on a Friday. Um, there's about a good 10 to 15 of us there, and we have our nurse come in and she brings in special speakers sometimes. And later on, if you look further down, there will be a link with um other organisations uh for MS society and MS charities and things like that.

Final Thoughts

Jonathan 27:35

Final thoughts are it was very inspirational, and I'm really I'm really pleased with how you progressed in your life.

unknown 27:43

Thank you.

Phil P 27:44

And it's good having him in the group, isn't it? Oh yes, very good indeed, yes. Yeah, very good.

Phillip R 27:49

Mark with you don't you don't very well. Well you're a bit nervous at first.

Marcus 27:54

I was extremely nervous and still nervous now.

Carol 27:58

Um it was interesting here hearing about your condition and what you go through, and knowing that you you're a great dad to five children.

Marcus 28:11

So, to all my friends, family, and listeners out there, thank you for spending a day with me. I can't tell you how much it actually means to actually finally have a voice and actually say these things out loud.

Phillip R 28:29

Oh, good. We're here for you. Our point of view.

Gila 28:35

Community Focus is an art centre for children and adults with disabilities. We are based in the Barough Barnet, North London, and offers selection of creative and well being activities for all ages.