We're answering your wildest MS questions: from dishing about celebrities with MS, to spilling the tea on taboo topics like sex, fatigue, and everything in between, we're diving deep, no holds barred. Be sure to stay tuned to the very end for my latest MS life-hack and product recommendation!
We're answering your wildest MS questions: from dishing about celebrities with MS, to spilling the tea on taboo topics like sex, fatigue, and everything in between, we're diving deep, no holds barred. Be sure to stay tuned to the very end for my latest MS life-hack and product recommendation!
Highlights
Reference:
Ardra Shephard:
I'm Ardra Shephard and this is Tripping On Air, a place to talk shit about what it's like to have MS. Normally, I like to make everything about me, but MS also affects the people we love. So weighing in from the partner perspective is Alex Hajjar, my friend whose wife also has MS. Join us monthly as we dish about everything from symptoms to stigma. If you have MS or you love someone who does, we want to connect with you. Alex, how are you? How was your week?
Alex Hajjar:
I am doing good. I'm doing better. I threw my back out last week and I was immobile all weekend. Luckily, I was able to get back to normal. I went to a physiotherapy appointment, which seems to do a lot of good things. And then I played a rock and roll show in Toronto with my band. So I had a really good week.
Ardra Shephard:
So you're bouncing back? You're bouncing back?
Alex Hajjar:
I am bouncing back cautiously, very cautiously. How about you?
Ardra Shephard:
Yeah, you don't want to re-injure your back. I am buried in the book I'm writing. It's like I don't even know what day or time it is or who I am. If I owe you an email or a phone call, that's why. It's due very soon and it's very exciting, but it's a lot.
Alex Hajjar:
By the way, it's November. That's how long you've been in hibernation.
Ardra Shephard:
Stop it. How long I've been in hibernation? No, it's not. It's like the end of April. By the time this episode comes out, we'll be into May. So yeah, it's a thing.
Alex Hajjar:
Spring flowers. What are we talking about today?
Ardra Shephard:
We are doing something totally different today. This episode is all about reader, listener, reader. I mean, I guess some people read the transcript. Actually, somebody was asking for a transcript recently. So it's for questions from our audience and some of them actually are pretty juicy.
Alex Hajjar:
Oh, feedback. I know we get a lot of great comments on the socials, but I'm really excited to engage one-on-one sort of.
Ardra Shephard:
You should be. I mean, I only ever get good feedback about you, Alex.
Alex Hajjar:
Really? Yeah, I know you do send me things and they are encouraging, actually.
Ardra Shephard:
I send them to you because you're not on all the socials, so I feel like you should know.
Alex Hajjar:
I'm on Facebook now, so if anybody cares-
Ardra Shephard:
Are you?
Alex Hajjar:
... you can reach out.
Ardra Shephard:
You're on Facebook, but you don't tell me? What the hell?
Alex Hajjar:
So I made the leap because I have the other podcast and I got rid of X or Twitter or whatever it's called now. So I had to reach out. I feel like people on Facebook may listen to podcast a bit more. I don't know. I don't know what I'm doing. It's just an experiment.
Ardra Shephard:
You clearly don't know what you're doing in terms of building an audience on Facebook.
Alex Hajjar:
That's true.
Ardra Shephard:
You don't even tell me.
Alex Hajjar:
I'm telling you now.
Ardra Shephard:
I'll find you.
Alex Hajjar:
This is the big reveal.
Ardra Shephard:
Thank you. I will find you. And also I feel like, are you following me on Facebook? We need to talk.
Alex Hajjar:
That's a good question. I've been buying a lot of vinyl albums on marketplace. That's basically what I've been using it for, so that's embarrassing.
Ardra Shephard:
I see.
Alex Hajjar:
But I've said it now.
Ardra Shephard:
I mean, that's a hobby. That's fun. Okay. You're off Twitter X. I'm thinking about making that break too. It's kind of a weird place.
Alex Hajjar:
It's private.
Ardra Shephard:
And Threads. Are you on Threads? Threads is kind of the new...
Alex Hajjar:
I've heard. I keep getting weird propaganda on my Instagram for Threads. I haven't leaped into it yet though.
Ardra Shephard:
Okay. I'm on Threads.
Alex Hajjar:
All right, I'll check it out.
Ardra Shephard:
It's like Twitter X, but less polluted at least for now.
Alex Hajjar:
Interesting. Okay, I'll search.
Ardra Shephard:
Okay. Let's get into this episode. I want to start with a comment from Jane because it's so nice and that's just a good way to start the day, right?
Alex Hajjar:
Yes. Absolutely. Hi, Jane.
Ardra Shephard:
Hi, Jane. Jane says, "Thank you for all your work and in particular the blog Tripping on Air, which helped me out when MS started to give me some big problems after being diagnosed at 51. You are so relatable, honest, but not depressing and the laughs. You inspired me to start my own blog, which is really awesome." Thank you, Jane. Her question is, "The recent publicity around Christina Applegate and Jamie-Lynn Sigler's podcast, which is called MeSsy got me thinking about the differences and the common ground of having a diagnosis of MS at different ages being in your 20s or in your 50s as I was, and I wondered what your thoughts are around this."
Great question, Jane. I was in my early 20s like Jamie, so I can't really say what it's like to be diagnosed in your 50s. I can say that at that stage in my life for me, it felt like all the major life decisions were still ahead of me and then MS comes along and just kind of F's everything up. So MS for me shaped a lot of my adult life and I feel like it's not cool to say that. We're not supposed to let MS define us and all of those good things, but it's definitely been a factor in a lot of the choices that I've made.
I feel like the MeSsy podcast is cool. I relate to a lot of Jamie's perspective because she was diagnosed around the same time and around the same age as me. So it's interesting to listen to it with Christina who like yourself, Jane was diagnosed in her 50s and it feels like Jamie is kind of like Christina's Sherpa, her MS Sherpa, if that makes sense.
Alex Hajjar:
It does sound that way. We had the diagnosis come when Nicole was in our 30s, when we were in our 30s sort of. It's interesting. It's just something we have to consider. It took us by surprise because it's late. I mean in your fifties seems really late given the information that I've read about MS diagnosis. So it can be a shock. There's a lot of resources and people are creating new resources for this sort of stuff, which is great.
Ardra Shephard:
I think a lot of people who do get diagnosed in their 50s have had these kind of niggling symptoms for years and it's gone overlooked. So that's kind of an interesting thing too. I went from first symptoms to diagnosis. It took me only a couple of months, but I can imagine it's a whole nother kind of frustration of complaining about different symptoms and things and not being taken seriously until your 50s.
Alex Hajjar:
Yeah, that's actually a really good point. I think we had experienced some things that didn't make any sense until the diagnosis came in and then retroactively, you're like the penny drops and you're like, "Oh, that's probably what was happening, or this is probably what was going on." But until you get the optic neuritis or whatever, the trigger is for diagnosis, then you're like, "Oh, shit." It all fits together I guess, but...
Ardra Shephard:
Thank you, Jane, for the great question. You can check out Jane's blog at Jane Harrison on Substack. We'll put a link in the show notes. It's called the Hoblicious Chronicles, which is such a fun name for a blog, and I actually have checked it out and it's really good. There's only a few posts so far, but I would encourage you to check it out because we can never have too many stories and if you don't find the one that you relate to... Sorry, clearing the frog. You can find. You just have to keep looking.
Along the same lines, we have another question about celebrities with MS, which is how do you feel about celebrities like Christina Applegate and Selma Blair? Do you want to weigh in first, Alex?
Alex Hajjar:
Sure. I think it's always great when someone with such a big platform uses it for good to relate their experiences in an intimate way is really helpful to know that people who have the same afflictions are not alone. I think Christina is really great at delivering an honest take. That's my take. It's an early podcast. There's only a few episodes, but I like the back and forth. And it's cool that they're celebs and stuff, but I mean, they're talking about real stuff and that's kind of what we want to hear.
Ardra Shephard:
I wrote a piece called What the MS Community really Thinks about Selma Blair. I wrote it on the blog, Tripping On Air. We'll put it in the show notes because I think... Listen, the bottom line is that we are constantly hearing about how MS is different for everyone who has it, but for a long time there's been very little public awareness about what the disease is. So when you only have a handful of people who are public about it, that really shapes and informs what the public thinks about MS.
So I think the more voices we compile on, the better. But the other issue with celebrities who are public about their diagnosis is I think sometimes we forget that they're also human and they're also going through this thing. And so I think we need to be careful about what we expect of them. It's like...
Alex Hajjar:
Yeah. So I'll say this because I did read this on a Reddit forum, so I didn't come up with this out of my brain, but someone who had listened to the podcast had mentioned that, it wasn't mentioned, that there is a level of privilege that celebrities, excuse me, more coffee needed as well, that celebrities have, that most people don't have. And so that should be acknowledged I think as well. It's fair to say that because we've said it in the past here where MS is kind of a bougie disease.
Ardra Shephard:
MS is expensive and I think that's a great-
Alex Hajjar:
That's what I mean.
Ardra Shephard:
It's a great point, Alex. It's also really tricky because all the privilege in the world didn't get Selma Blair diagnosed in inappropriate time. I also feel that it's dangerous territory when we start comparing our own MS to anyone else's. I think it can trigger feelings of unfairness and jealousy and the disease is really unfair for everyone. I agree, there are privileges that can make living with this disease easier, but it's not for us to maybe attack or feel jealous of people with better access to things that we all have a right to have.
I think it's incumbent on all of us to advocate for better healthcare, better accessibility, better all these things overall. I appreciate the awareness that's being raised by the people who are willing to be public and vulnerable and to share their stories. And I think we have to be...
Alex Hajjar:
I don't think you could say it better than that. I think that's very well said. One question I've heard making the rounds is, "Do you think MS is caused by a vaccine?"
Ardra Shephard:
No.
Alex Hajjar:
I know. I know.
Ardra Shephard:
Okay. I understand how if you have heard MS and vaccine in the same sentence lately, that can lead to conclusions. You know what? I am also guilty of reading a headline and acting like I read the whole article. Not necessarily with MS, but a lot of times we don't read all the finer details. MS is a complex disease. There are genetic and environmental factors that can lead to MS.
If you are hearing the words, letters, MS, and vaccine in the same sentence lately, it could be because it is an increasingly credible theory that MS is in part caused by Epstein-Barr virus. And if we can develop a vaccine to Epstein-Barr virus, that could have a real potential impact on preventing MS in the first place. And then also stemming from that, there are theories that antivirals could be complementary therapies to help manage existing MS.
So it's actually a really good news story if those are the stories you're hearing it. And if you're not, then just consider the news sources do fact-checking and ask questions. But MS is absolutely not caused by a vaccine.
Alex Hajjar:
Yes. Think critically, I think is a good response to have.
Ardra Shephard:
It's getting harder, right? There's so much confusing information out there.
Alex Hajjar:
It's stuff like social media that creates an environment where it's really easy to believe anything or disbelieve it, based on headlines. But anyways, agreed. I have another question here. How do you motivate yourself on difficult MS days?
Ardra Shephard:
Like guilt and self-loathing?
Alex Hajjar:
Yeah.
Ardra Shephard:
I mean, I'm kidding kind of, but honestly, more days are difficult than not. And when I really have to get something done, I try to break it down into pieces. So even when I'm talking about finishing my book and when it feels really overwhelming, I just have to say to myself, "Okay. If you can just write one good sentence, one really good sentence or one good paragraph, then that can sometimes get me over the hump."
Other times it's totally unhealthy. I'll tell myself, "Okay, if you finish this chapter, you can buy that skirt you've been eyeing on Free People website."
Alex Hajjar:
Nice.
Ardra Shephard:
Sometimes it's just like you have to, I don't know, reward yourself.
Alex Hajjar:
Treat yourself.
Ardra Shephard:
Treat yourself. But I think in terms of little things around the house, I break that down too. So I'll say to myself, every time I get up to pee, I'm going to put one thing away or I'm going to put the cups in the dishwasher. Just do one little thing instead of trying to tackle it all at once. But I don't know, the rest of the time I'm just giving myself a pass and reminding myself that nobody really cares if I'm not killing it all the time. I can't be awesome all the time.
Alex Hajjar:
Yeah. There has to be breaks from being incredible. But I think I read a book last year maybe called Rest Is Resistance by Tricia Hersey, and it motivated me to just chill the F out. If I'm having a bad day and I don't want to do anything, I remind myself that there's been a systematic effort to make me feel guilty. Like you said, guilt is part of it, right, for not being productive. And thus I throw on a record player or a record or a playlist or light some incense and just chill out.
I mean, on the other hand, Nicole is a great motivator, but if it's a bad day or two or five, I just let them happen and then I start making lists. Lists are a thing where there's check boxes on the side that gets me up and moving. But I can't always be-
Ardra Shephard:
I like lists too.
Alex Hajjar:
Yeah, lists are great.
Ardra Shephard:
But Nicole is a good motivator, in what way? In that she like to fire under you?
Alex Hajjar:
Yeah. I think she's had great training. Her educational background is in social work, and so she's worked primarily child and youth work, I should say. And so she's worked a lot with negotiating with young people to get them to do things without yelling at them or making them feel bad. And so she finds-
Ardra Shephard:
She uses the same strategies she uses on kids with you?
Alex Hajjar:
Yes. Because I'm a man baby, that's the thing, right?
Ardra Shephard:
Oh God, Alex. It's like, "I'm going to time you and see how fast you can make the bed." She does that? Does that work for you?
Alex Hajjar:
No. Well, that's just the thing. She uses specific wording and things like that to make it seem like it's a cooperative effort and that it makes me feel like a big boy. Right?
Ardra Shephard:
Oh my God.
Alex Hajjar:
I don't want to be petulant either, so she does it in a non-confrontational way, which is actually a productive way of getting me to do stuff.
Ardra Shephard:
That's really funny. This is all a great reminder to me that it's not just people with MS who feel this overwhelming pressure to achieve and be productive all the time. Which actually, this leads to the next question we got, which this is a really good one. How do you separate your self-worth from productivity? It's hard.
Alex Hajjar:
Yeah. I mean, it's hard because of part of that book is like... Rest Is Resistance, what I was mentioning is capitalism has created this and sort of this untethered version of capitalism has created this idea that we all have to tie our worthiness to being productive. But we don't. You don't have to do that. It's not necessary.
Ardra Shephard:
That's part of the challenge though is that even if you believe that and you accept that, there are people around you and in your world and society that still are believing that and making judgments and putting that pressure on you. So it does take active resistance to not buy into that. And I have to say it's extra tough because it feels good on the days when I am productive and accomplishing stuff. And I think maybe part of coming to terms better with the days when I feel like I suck is not giving myself as much props for the days when I'm killing it, if that makes sense.
Not assigning a value to that. I do adaptive horseback riding, which I love, but it is regularly a struggle to motivate myself to get out the door. My classes start at 8:30 at night, which is a time when I really, really need to rally. And so in the winter term, I missed a fair number of classes. I wasn't feeling well, whatever. It's a spring term now, and I've just gone to three consecutive classes in a row.
I know, but I'm like, "Oh, I'm killing it. I'm amazing." I think I need to be more neutral about it because if I have to cancel next week, I don't want to feel like shit about it.
Alex Hajjar:
Yeah. I try to put out of my mind the idea that I've done this more lately than ever because I used to be really attached to the idea of what do people think? Do people think I'm being productive or lazy? Because people will tell you, "Stop being lazy," and you're like, "What the fuck?" But what I mean is there are all these-
Ardra Shephard:
Who's telling you that?
Alex Hajjar:
I don't know.
Ardra Shephard:
I know it's not Nicole because she uses language for toddlers.
Alex Hajjar:
Yeah. I just think when you're growing up or when I was growing up, there's a lot of maybe talk here and there about laziness and not being lazy. So the ultimate goal is to be this version of productivity. But the thing is, there's so many variables and part of those variables are these people's opinions. I can't control how other people feel, so why should I care about it? And that's another maybe method I use to be like, "Why should I give a shit what they think? I'm just going to sit on my phone all day. This is that day."
Ardra Shephard:
I think it's about knowing yourself, right?
Alex Hajjar:
Yeah.
Ardra Shephard:
And Just feeling so it's less screw you and more just like, "I know who I am. I know what I can do and what I'm doing, and I know my worth."
Alex Hajjar:
Yeah, I'm with you.
Ardra Shephard:
I love it. Okay, here's one for you, Alex. How do you not let your wife's chronic illness affect your mental health?
Alex Hajjar:
It does. It does. Every day I think about it. I think about the past and what's happening now and what's going to go on later on. But I mean, after a few years of living with it and just kind of gets absorbed into the daily rigmarole of life, acceptance, adaptation, those kind of things take priority when managing my mental health regarding how I deal with MS. How about you?
Ardra Shephard:
Yeah, same. It totally affects my mental health. It's a constant negotiation. Some days it's better than others. I think it's you get on with it and I mean, everything affects our mental health, good and bad. So I don't think it would be weird if it didn't. Right?
Alex Hajjar:
Yeah. I don't want to say, "Oh, I hate that it plays a part in my brain. It just does. It just does." If MS wasn't a part of my daily life, then I wouldn't go to a bar and think like, "Wow, this is not wheelchair accessible." You know what I mean? And that's not a problem that that's now something I think about. It just is. So it affects my mental health, but I go to therapy and I think that is super helpful in dealing with whatever is going on in my brain.
If you can take advantage of that, that's good. Oh, I've got a question here from Cheryl. So Cheryl says, "I had a doctor tell me MS doesn't cause pain. I've been getting bone and joint pain. I'm 60 years old and have had PPMS, so primary progressive MS for 13 years. I always ask, is it arthritis or MS?"
Ardra Shephard:
Thank you for your question, Cheryl. This is such a good one. I was told way years and years ago by a doctor also that MS doesn't cause pain, but we know now that that's completely not true. It's actually in one of our top myths about MS episodes that we did in season one. So we'll put a link to that in the show notes too. That said, I do feel like it's common to kind of question every little thing and say, "Is this MS? And is it not?" And not everything is MS. So it's possible that it is arthritis in this case.
I mean, it could be... Nerve pain is more directly caused by MS, but I would say for my own situation, the arthritis in my knees is a secondary MS symptom because it's my fancy MS walk that led to the pain in my knees in the first place, if that makes sense. The point is, wherever the pain came from, it shouldn't be dismissed and should have a doctor who takes you seriously and works to help you find a solution to relieve that pain. But I assure you, MS can 100 million percent cause pain.
Alex Hajjar:
I can back that up. Not from obviously first experience, but by secondary experience.
Ardra Shephard:
Yeah, because you hear about it. Right?
Alex Hajjar:
Yeah, I hear about it. I have to help-
Ardra Shephard:
We're not making it up
Alex Hajjar:
... assuage, assuage. I never know how to pronounce that word.
Ardra Shephard:
I think it's assuage.
Alex Hajjar:
Assuage, assuage. But yeah, it does.
Ardra Shephard:
Fancy word, Alex.
Alex Hajjar:
I read a lot. What do you want? I want to throw these words into real life.
Ardra Shephard:
Shout out to all the readers out there. This is a sidebar, my favorite story of my husband's who got made fun of as a kid for pronouncing chaos, chaos when he was reading aloud in class. But it's totally fair if that's the only way you've seen a word is in writing, when you're young before you hear it. Not enough people say assuage, Alex.
Alex Hajjar:
I know. I think it should be said more, but I get that feeling with like, it's funny when you read a book and then you listen to the audio book or a whole generation reads Harry Potter, and then some people are stunned by the way when they see the movie, what the name of the character is. It's a funny coincidence.
Ardra Shephard:
Because if you are not British and you read Harry Potter before the movies came out, you didn't know how to say Hermione. I didn't.
Alex Hajjar:
Yeah, Hermione, I think.
Ardra Shephard:
Hermione.
Alex Hajjar:
Yeah, Hermione.
Ardra Shephard:
It's sleek. Oh, I make so much.... Yeah. Okay. This is a good question. Who would you love to have on the pod?
Alex Hajjar:
Yeah, I've thought about this and I think I've brought up a couple people before, but I think Aaron... Oh my God, I said it in my head perfectly fine. Aaron Solowoniuk.
Ardra Shephard:
I'm going to take a crack at it. Solowoniuk, Aaron Solowoniuk.
Alex Hajjar:
Solowoniuk.
Ardra Shephard:
Are you out there? Are you listening?
Alex Hajjar:
Yeah, I'm sorry I've totally butchered your name, Aaron, if you are listening. He is the drummer for Billy Talent. He's in the band. I think he drums sporadically now. He was diagnosed with MS and he supports the band on tour. He still goes out with them and stuff like that. But yeah, I'd like to hear from him his experience because he was a touring musician, which is something that I've aspired to be for a long, long time. But then getting diagnosed with MS is obviously... It's a big interruption in your life, and just kind of get his view on where he thought he would end up versus where he is now.
And if he has any advice for young people who are aspiring touring musicians who might also have MS and tell them maybe life... Being a musician isn't the end, or whatever he has to say. Sorry.
Ardra Shephard:
No, I think Aaron would be an amazing guest. I know he's read the blog, so maybe he listens to the pod. I don't know. Maybe he wants to do this show. Maybe we could get Byron Isaacs from the Lumineers too, like MS Rock Star Edition.
Alex Hajjar:
Okay. Get them in. I think their opinions are valuable to a lot of young people who are playing music and stuff. Or older people play music. I don't know. Anyways, I guess can I ask you the same question?
Ardra Shephard:
Yeah.
Alex Hajjar:
Who would you want?
Ardra Shephard:
I mean, those are two really great examples. I feel also my dream guests are kind of nerdy answers.
Alex Hajjar:
Go on.
Ardra Shephard:
I mean, Professor G. We did almost have him on the show and we had scheduling issues. I'd love to have him on the show. I'd love to have Dr. O back. Her episode on Smoldering MS was so good. This is also super nerdy, but Michael Ignatieff, I think would... I would love to talk to him about a book he wrote called On Consolation, which doesn't have anything to do with MS.
Alex Hajjar:
Where do you see the future of the show heading?
Ardra Shephard:
What happens? I don't know. I hadn't really thought about it. What happens after a pod? Is it TV?
Alex Hajjar:
Whoa.
Ardra Shephard:
Okay, let me pitch this.
Alex Hajjar:
You're already on TV.
Ardra Shephard:
I know. Let me pitch this though. The Real Housewives of MS.
Alex Hajjar:
Okay. And then do we have a real husband's like pool house cabin
Ardra Shephard:
No. Sorry, Alex.
Alex Hajjar:
No.
Ardra Shephard:
I don't know.
Alex Hajjar:
I'm workshopping this idea. I'm with you.
Ardra Shephard:
I don't know. Andy Cohen call us. I've watched the shit out of that show.
Alex Hajjar:
Yeah. Why not, right? I think... Yeah.
Ardra Shephard:
I don't know.
Alex Hajjar:
It's not a bad idea.
Ardra Shephard:
Where do you see this pod going?
Alex Hajjar:
I mean, I really like what we're doing. Based on my experience with podcasts, which is literally just my own show, just keep going. Just keep going. I think we've lots of content to cover, but I like the idea that we're providing resources and there are subject matter experts on the show with the occasional drinking binge, laughing and complaining.
Ardra Shephard:
Giveaway, yeah.
Alex Hajjar:
Yeah, giveaway. These are very comfortable places to be, I think. I'm happy with what we're doing, but more of the same would be cool.
Ardra Shephard:
I think you're right, Alex. I don't know. I watch The Real Housewives of MS. I don't know if I want to be on it. It could maybe be real life.
Alex Hajjar:
It'd be an interesting thing to see, yeah.
Ardra Shephard:
It would be, right? I think it'd be interesting. Okay. What was an unexpected surprise you discovered about hosting a podcast? I mean, you already had your own podcast when you came on this show, but any surprises?
Alex Hajjar:
Yeah. It was the absolute sheer amount of work that it takes to do a podcast. I've been told by guests and then maybe a couple other people that I have a lot of emails and a lot of templates and stuff like that, and they're like, "You do a lot of work." And it's just, I guess how my brain works, but I mean, organizing the guests, editing production, advertising with tripping on air, like AMI thankfully does a lot of the heavy lifting. And, Ardra, you steer a tight ship with the content. Working with a friend is always nice, but if anybody's going to start their own podcast, it is a shit ton of work. And that was surprising because you think it's just hop on a mic and then press record and then that's it, right? Upload it to wherever. But that's not the case.
Ardra Shephard:
I mean, probably it is for some people, but I don't know if it's a surprise kind of. I don't know. Anytime I get an email or a message or see a comment where it's moved someone to tears or really resonated that feels just so rewarding.
Alex Hajjar:
There has been some feedback that you've sent me because I'm not diligent about social media where I've been surprised that someone was talking about me talking. I'm like, "Oh, I said something that made somebody feel a certain way," especially positive and stuff. That's what makes me very grateful for people listening and engaging.
Ardra Shephard:
Gold.
Alex Hajjar:
But surprising to see that, yeah, maybe.
Ardra Shephard:
Okay. We have a number of relationship cues, which are kind of fun. The first one is how did you and Nicole meet?
Alex Hajjar:
Yeah. Nicole used to work at a tattoo shop on Yonge Street in Toronto. She was a body piercer and a high school friend of mine also worked there, and I went to visit my high school friend and she introduced us. Then that same night... I went with a different high school friend. He got tattooed and I ended up speaking to Nicole for a couple hours. Then they invited us to this party, and I basically talked at Nicole for about three hours.
I had just come back from backpacking, so I couldn't shut up about it. I backpacked across Europe for a month or so. And then she gave me her number, and I kind of just realized that anyone willing to listen to me for that long, I should probably hold onto. So that's our basic how we met story. But how about you and Carey? How did you meet?
Ardra Shephard:
We met working in the same office. So I mean it's kind of boring, kind of. I don't know. Everyone now I think meets online
Alex Hajjar:
On apps and stuff.
Ardra Shephard:
On the apps. I'm really glad I didn't ever have to do that.
Alex Hajjar:
The more I learn about it, the more glad I am that I didn't have to deal with apps. Everybody seems like fed up with them or a lot of people that I talk to anyways that are dealing with them.
Ardra Shephard:
How has MS affected your relationship with your partner?
Alex Hajjar:
Yeah. I don't think I can actually say that it has off the top of my head. There are things we do differently, but my feelings for Nicole are exactly the same as they were pre-diagnosis. We might have better communication, not that we don't argue or bicker, but we understand each other a lot more because we have to announce our boundaries more often than maybe people who don't live with a chronic illness, have to announce their boundaries as much. But I don't think the relationship has suffered because of MS. How about you guys?
Ardra Shephard:
I think it's something that we have to factor into a lot of things. I don't think it's suffered. I think we have a good marriage. I think it has impacted it in a way because my husband is such a natural helper and I'm such a natural do-it-myself kind of person that it's put me in a position of needing to accept help in a way that I don't always want to, and it's just been hard for me to accept that there are people who actually do want to help.
Alex Hajjar:
It feels almost like a similar dynamic. If Nicole asks for help, it's because she's been trying to do something for probably five to 10 solid minutes, and then she'll be like, "I need help." And then I'll just come over without thinking about it and help to do the thing. So there's no questioning it. There's no nothing like that. So it sounds like a similar dynamic anyways, but I can see that being a challenge is learning to ask for help, for sure. I guess relationship wise, this next question falls into that landscape. Does MS make it hard or impossible to have sex?
Ardra Shephard:
This is such a loaded topic. I think we need to do a whole episode on sex. I wrote about it again on the blog. We can post it in the show notes. No, people with MS can have sex. MS can complicate things, but there are lots of things that you can and should do to mitigate those complications. I remember when I was first diagnosed and you get all these pamphlets and one of the pamphlets listed all the possible symptoms, and one of them said sexual dysfunction without at all qualifying what that meant.
I was 23, and I was just like, "Knowledge is power." And so that's maybe a future episode where we can get into it in a little bit more detail, but we'll throw some resources up in the show notes because there are lots of things that you can do, and yes, people with MS can have sex and fulfilling sex lives also.
Alex Hajjar:
Yeah, I think that's very well said. So I'm just going to crack onto the next question. This one floats up. I see this all over the place, but I guess for a person with MS, do you have a special diet that you follow?
Ardra Shephard:
Yeah, popcorn with Smarties and a cocktail. You know what, it changes all the time really. I think I've tried all of the MS specific diets with varying degrees of success. None have ever prevented me from having a relapse, but it's true that from time to time, dietary changes have either improved MS symptoms or made them worse, and I'm talking about bladder bowel function, fatigue, sleep, these kinds of things.
So it's really something that I consider and renegotiate all the time. Food is a big part of being social and of enjoying life, and so we all have to make these choices and decisions because MS takes a lot. I don't want it to take [inaudible 00:37:16] too because I feel like sometimes when I am on some strict diet, it does impact the whole house. It's like the food choices I make impact my husband too.
Alex Hajjar:
We don't cook individually or anything like that. So when we make meals... There's only two of us, so it doesn't make sense to do that. But in our house, I mean, we've been vegetarian for six or seven years. We've eaten meat heavy diets in the past, and then we've done diets here or there. We've been involved in that diet culture stuff before and it doesn't seem to help. It doesn't really help with the weight loss, but it seem to help with any symptoms of MS.
Vegetarians, I guess it's a cleaner way to eat. I mean, once in a while we'll fit in some meat these days, but like I said, we've been fairly strict for six or seven years and it seems like it's been fine. We've been happy to eat everything we consume, but no special diets.
Ardra Shephard:
Yeah. I think it makes sense.
Alex Hajjar:
Yeah. So here's a question because I feel like people get asked this, people with chronic illness get asked this probably a lot more than they want to get asked this, but what's the best answer when someone asks what's wrong with you or what happened to you?
Ardra Shephard:
Even when you say it sounds like people actually ask you that. It happens all the time. And honestly, I've answered it in every way possible a million times. Now, I usually say it's a long story, and if that doesn't work, I say it's personal. I'd rather not say. And usually that works. Last week, I was in an Uber and a driver asked me how much my rollator cost, and I was like, "Um.." And then he was just like, "Yeah, but how much?" I just avoided it and skirted it. I don't know. It was weird.
Alex Hajjar:
Maybe it's a step up from what happened, but it's still an awkward question.
Ardra Shephard:
It was super awkward because it's like a fancy rollator, and I just felt weird about it. Okay, Alex, this one is for you. How do you handle it when someone calls you a good man or infers that you're some kind of martyr for being with someone who has MS? Because I know this happens to my husband too.
Alex Hajjar:
Yeah. It definitely happens. I mean, I usually roll my eyes and try not to acknowledge it or simply say like, "I'm not." I think it's usually said out of a knee-jerk reaction, some sort of conditioning, and they don't really know that they're saying something silly. One thing I thought was funny once, this isn't particularly MS related, but I was at a funeral once, maybe I've told this story before, but I was at a funeral for my father-in-law when Nicole's dad passed away, and one of Nicole's aunts came up to me and she said, "You're the man of the house now." And then she gave me a giant slice of cheese as a gift for being the man of the house.
Ardra Shephard:
Honestly, I'm coming back in my next life as the man of the house just because I want all the cheese. That's amazing.
Alex Hajjar:
I was so taken aback that I got a piece of cheese at a funeral for that reason. I was like, "That's so wild." But I mean...
Ardra Shephard:
It's very, very odd.
Alex Hajjar:
If someone called me a martyr and gave me a piece of cheese, I'd be more willing to accept that label, but no.
Ardra Shephard:
So that's the secret. If you're going to say something ignorant, serve it with food.
Alex Hajjar:
Give me cheese or something.
Ardra Shephard:
Literally easier to swallow.
Alex Hajjar:
Exactly.
Ardra Shephard:
Honestly, I wonder if... Okay, listeners, if you are a woman and you are married to someone who has MS, do people say the same thing to you because I kind of think they don't.
Alex Hajjar:
It could work vice versa, right?
Ardra Shephard:
So my brother-in-law has MS, and I don't think anyone has ever told my sister she's a saint for sticking with him. You know what I mean?
Alex Hajjar:
Okay. Yeah, interesting.
Ardra Shephard:
I think it is gendered, but I don't know. I could be wrong. I would to hear from listeners from our audience to see if anyone else experiences this. Oh my gosh.
Alex Hajjar:
Yeah.
Ardra Shephard:
Alex, we are getting down to the why are these questions? We got to blow through them because we're running out of time.
Alex Hajjar:
Okay, fair enough. Should I ask this one here? We talk about it all the time, but do you ever get burned out about talking about MS.
Ardra Shephard:
MS is exhausting, but maybe more than talking about MS, I do get burned out by social media and feeling the pressure to keep up there. But I don't know. I think one of the drags of MS is that when you go on vacation, it's coming with you and most of the things in life that we maybe feel burned out by, we can escape from at least temporarily if we're on vacation. But MS actually, I feel like gets worse when you're on vacation out of your routine and sleep and diet and all these things.
Alex Hajjar:
Okay. Well, we have one last question, and it's specifically for Ardra. You always have great advice about the latest products and tools that can help. Do you have any recent discoveries?
Ardra Shephard:
I do. The weather's getting warmer and everyone I think is already starting to complain about the heat because heat can impact MS, but I am still perpetually chronically cold, especially my feet. But I found this hot water bottle for your feet on Amazon. It's like faux fur covered and you slip your feet into it. I'll put it in the show notes. It's the bomb. And actually I think it's going to save me money because it wasn't expensive, but it's like my dollar a day habit is those hot pocket, charcoal adhesive, little hotties, even in the summer. I think this could maybe replace it. It's pretty awesome. I love it.
Alex Hajjar:
Oh, wow. Okay. I'm interested to see it because I use the thing for my back, but it's just like a regular flat one, but one for your feet would be cool. That sounds neat.
Ardra Shephard:
Trippers, thank you for your questions. Keep them coming and maybe we should add a question to the end of every episode. That could be fun. If you are enjoying the pod, please like, follow, subscribe, comment, do all the things. We want to hear from you. Thanks for tuning in. Thanks for listening to Tripping On Air. Don't forget to visit us at trippingonair.com.