The Worst Symptom of MS
Ardra:
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 [inaudible 00:00:16], 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.
Ardra:
The worst MS Symptom is usually the one you're feeling. Pretty sure my painfully cold feet have changed my personality and not in a good way. But in my 20 whatever years of MS having even worse than my blue feet, my mobility problems, my freaking bladder, the very worst symptom of my MS is, drum roll please, fear. Not knowing when you're going to have a relapse or what that relapse might do is like living in one of those revenge movies. You don't know how or when, but someday this boogeyman is coming for you.
Ardra:
I don't say this to scare you because there are better treatments and better outcomes for trippers all the time. Plus the good news is that there are more ways to manage fear than there are ways to fix my drop foot. It can take a lot of work to get fear under control, but when you have MS, you start to learn that you can handle more shit than you thought you could. It's the silver lining to worst case scenarios coming true. But I want to talk about the fear that some of the people around us have. I like to make everything about me, but MS affects the whole house. Alex, your partner has MS. She was diagnosed shortly after you were married, and I can imagine what she was going through at the time, but what were some of your immediate fears?
Alex:
Oh, yeah. My immediate fears were, I guess it's unique because my aunt had MS while I was growing up. So I had a bit of a window, although it was opaque, I guess because I didn't know all the details, but a bit of a window on what it might look like in the future. But at the time I just felt like life was going to start to get limited. We were going to be limited. And that was scary to me, because we were traveling at the time. So we had a leg taken out from under us, so to speak, and no pun intended actually, immediately.
Alex:
So it was really scary to think that we were in our early to mid thirties, which is late for a diagnosis typically, at least in our experience we found. But yeah, it was really scary to think that things were going to start being taken away from us. Previously we had thought about having children and that was going to become not a reality for us. And then traveling, traveling is our big thing, that's what we love doing together. And even at the time I was thinking, how are we going to get out of this hospital? And when are we going to get out of this hospital?
Ardra:
So a lot of immediate fears and also the immediate fears of how are we going to get out this hospital in a foreign country, but the big picture ones too. And I just want to clarify for listeners that an MS diagnosis doesn't mean you can't have kids, but it is something that a lot of people will take into consideration. Yeah, it's definitely a major lifestyle curve ball. Who is the bigger worrier in your relationship? You or your partner?
Alex:
Me, I'm the bigger worrier. Absolutely. For in general and when it comes to MS, I think, but it's because of fear. It's because of fear. I'm just worried that when are things going to stop being possible and why, and I don't know. I circle Nicole like a moon circles a planet, so I'm constantly worried about... And it's totally irrational and unreasonable, but yeah, that's just kind of how I am.
Ardra:
I mean, I would argue that fear is the rational and reasonable response to something so unpredictable and legitimately scary. But were you always the worrier or did MS bring that on?
Alex:
I think MS enhanced the worry. Yeah. I find more and more with my background, I have an Arab background and Italian background and they're typically full of anxiety, it's kind of built into the DNA, but with MS in the house it made things scarier and more anxious. So I find that I'm always anxious.
Ardra:
I mean, I would say it's the same in my relationship. It's kind of like I'm dealing with the scariest shit. And of course I have my own set of fears and anxieties, but it's my partner who really is the worrier. And I don't know, maybe it's that wanting to have control of course over things that we can't control. Yeah.
Alex:
So what are the biggest worries that you have, or your partner has?
Ardra:
I mean, I worry of course about disability. I worry about small things too, like where's the nearest freaking bathroom, you know? It's about learning to mitigate that fear. I think for me, one of the revelations of really realizing that fear is the worst symptom is realizing that my ability to cope with shit when it does go wrong, that gives me a lot of confidence, or some confidence, a skosh of confidence that I'll be able to handle things in the future. I think it's like the human mind, the hardest thing to deal with is uncertainty. And MS is by definition uncertain, right? It's like this constant lurking threat.
Alex:
And random, which adds to the anxiety part as well, because everybody's version of MS is pretty unique. Your symptoms might not mirror my partner's symptoms or our friend's symptoms. So you can relate in that you're constantly worried and probably scared, but you can't always relate in who has drop foot and who has fatigue and who has that, this symptom or that symptom.
Ardra:
I can't even think of the cliche movie, it is that you don't know how and you don't know when, but somebody's going to get you. It really is that feeling.
Alex:
It's lurking.
Ardra:
Yeah. Yeah, totally. Yeah. And so here's one thing that I feel, actually I was talking to my best friend about this recently, about what she remembered from when I was diagnosed 20 years ago. And her memory of the same scenario was so different than my own. And I felt like she was so calm and chill and it helped me, and she can't believe that I don't remember how scared and how freaked out she was.
Alex:
Really?
Ardra:
And so I feel like, I know at least in my relationship, my partner keeps a lot of his fears and anxieties to himself. Is it the same with you in your marriage?
Alex:
Yeah, no, I think I wear a lot of my fear on my sleeve, but mainly just with my partner. I don't bring out the concerns that I have with anything, unless people are in the circle, you know? So we've made friends with people from our individual support groups and stuff like that. And their partners, I'm friends with now. My friend, Mike, he's a really good guy. We can talk about it because I know he's in the know. But other people know I don't bring it out, but yeah. Sorry, with my partner, I definitely wear my fears on my sleeve. I think that comes with the trust of our relationship. And I know she's not going to judge me for being scared of something that she deals with primarily. But yeah, I don't know. It wouldn't make me comfortable to hide it. I would be more uncomfortable.
Ardra:
That's so interesting because it's not the same around here.
Alex:
Really? Okay.
Ardra:
Yeah. No, I feel like my partner feels like he has to protect me, he doesn't want to burden me with his worries about what's going on with me, but it's still, I mean, I'm not stupid. I can tell when he's anxious or wigging out. And I actually feel like he should talk to you because a lot of the time it's like, if you could express that anxiety, I could maybe give you a little bit more chill about it. You know?
Alex:
He's not that good at hiding it. Yeah. I mean, I'm open, let's chat. I don't know. I'm very bad at hiding how anxious I am. And so I was on a trip recently with just a couple of guy friends and I was visibly anxious most of the time, and they were telling me to calm down. They did a great job of calming me down, but I'm like, this is inbuilt at this point. And I think it does come from the MS, the constant fear of stuff. And it's just an ingrained fear. And I'm like, I just want to be a chill dude and hang out and be normal. But I'm always worried about getting somewhere on time or having to stop or planning things a certain way. So yeah. I need to take more steps to calm down, but when it comes to sharing my feelings, I almost have to.
Ardra:
And you guys have been living with MS for five years, I think now?
Alex:
Approximately. Yeah.
Ardra:
And has any of that abated, have your fears gotten worse or stayed the same? Or have you acquired any teeny little bit of chill?
Alex:
Yeah.
Ardra:
It didn't [inaudible 00:10:30] like it.
Alex:
No, it's not that the fears have changed so much. I think I've become numb to a lot of the fears. So when we had the immediate fears, those were you were constantly on edge or I had my back up a lot and stuff like that, but now I'm like, this is just a day to day thing. Maybe there's some newer fears, but I don't know. I think fear is just constant. It's a symptom for everybody that lives in the house with MS. And I think that I had, yeah, bigger fears or maybe more prominent, they felt more prominent, but they've muted now. And I'm more concerned with maybe the longer term things or the unique things like, oh, we're planning to travel, now I'm going to get scared. But if we're just planning to go to the grocery store, I won't be as scared.
Ardra:
You won't be as scared at the grocery store because you've done that and nobody died, you know?
Alex:
Exactly.
Ardra:
And I think it's the same with travel. A lot of it is scary until you do it and then you do it and you figure out that you can, and you find those workarounds. Everything is scarier than it is until you do it. Right? That's the cliche of fear, I think.
Alex:
Yeah, exactly. And I should say, we have travelled a lot in the last five years. We've been to Thailand, we've been to Vancouver and Edmonton and we've been down to Mexico and we've taken mobility aids or we've left them at home. So we've done a lot of those things and we're still able to do it and enjoy ourselves. So there's no saying you can't, but maybe it's a bigger hill to climb or it feels like a bigger hill to climb every time we propose something new.
Ardra:
I mean, the first time we travelled with a mobility aid, it was like planning. Yeah. There's a lot of anxiety that lives in our house, but we have a rollator that converts to a transport chair, and my husband set his stopwatch to time himself to make sure you could do it fast enough to get in and out of cabs without pissing anyone off, you know? But then you do it and you realize, I mean, I guess fear is useful in that sense. It gets you prepared. But then we had a great trip. We kind of conquered that.
Alex:
Yeah. Mobility aids are great. I do the same thing. You pretend you're an F1 pit person and you time yourself and stuff. I know there's stigma that comes along with them, but it's kind of like different suits of armour that you choose for whatever the obstacle you think you're going to run into. But that's the problem too. You never know what you're going to run into, so that's terrifying, but then you run into it and you climb over it and you're good. You don't have that fear anymore. So yeah, probably some fears have dropped off, but solely because we've pushed through it.
Ardra:
Yeah. And I always tell people to reference that, you hacked this before, you'll hack the next challenge too.
Alex:
Yeah. No, that's accurate.
Ardra:
If that makes sense. I mean, I wanted to ask you what you, as a partner, want your partner to know about that experience. And I feel like I wanted to ask that because just in my own situation, it's so hard to get that information out of my own partner, but it feels like you do a pretty good job of letting your wife know what your emotional needs are. That's awesome.
Alex:
Yeah. I mean, I try. Sometimes it comes off... It's tough. I mean, it's a weird dynamic and it's very dynamic. So it's some things like I could be sharing something, but it could come out sounding very negative, and then we end up just fighting.
Ardra:
Like give me an example.
Alex:
Well, okay. So to answer the question, I'll say what I would like my partner to know is that I think partners, at least from my perspective is that I'm on just as much a learning curve with MS as you are. If not more, because I find that people who have MS, they get stuck in with all of the details. They have to go to appointments and they have to take all these meds. And I'm not conscious of that. I'm sort of, like I said before, orbiting, but more of in a day to day reality, rather than a getting in the weeds with all the meds and stuff. So if she's getting frustrated with something and I don't know what it is, but then she might snap at me. "I need this now," which is fine. You do need that now, that's totally valid. But I didn't know that. I didn't know that just sitting here watching cartoons.
Alex:
It's a bit of a ballet that we have to understand where you are physically dealing with something that you're dealing with pain or drop foot or something like that. I mean, drop foot's obvious when you get up and walk, but maybe there's some pain or cramps or something that's happening while we're sitting watching TV, but I don't know that's happening. And I think there's frustration that builds up with that, with the pain that's coming or the tingling sensations or anything like that. And I'm not aware of that. So the frustration that's building up, just tell me you're getting frustrated, tell me you need something as soon as you need it and I will go and do that thing for you. I'm not going to question it. But I don't know. So please don't get mad at me.
Ardra:
So basically you need to up your marital ESP game, right?
Alex:
ESP, what's that?
Ardra:
Your marital psychic connection where you don't have to-
Alex:
Oh, ESP. Yeah, exactly. Exactly. Well, I mean, we're what, we're almost 10 years into this marriage so we're pretty close, I think.
Ardra:
It sounds like you guys have a really solid team approach, and we do too. And I do want to say how, oh yeah. I mean, it definitely does add something to a marriage. You're either in it together or you're not. And I feel very blessed to have a healthy partnership. Not everyone does. Yeah, it can be tough. People with MS are at an increased risk for unhappy marriages and even abusive marriages and partnerships. I think counseling for both parties can be very helpful because it is a lot to go through and it's a lot to digest and process.
Alex:
Yeah, we haven't done a marriage counseling, I guess because we luckily haven't felt the need to do it, but I know it does affect marriages.
Ardra:
Yeah. I don't even necessarily mean like marriage counseling, but just individual counseling or just being able to talk to somebody and find coping strategies if you're struggling.
Alex:
Yeah. Absolutely. I mean, do you take part in any groups or anything? Because I do, I take part in a partner group. So partners of people with MS.
Ardra:
Yeah. I mean, my very first experience with support groups when I was first diagnosed was I was in my early twenties and I went to an MS Society, no knocking the MS Society support group, but it didn't look like people like me, the people were decades older and much more disabled. And so just through word of mouth because social media wasn't a thing back in my dinosaur youth, I was able to collect three other women in their twenties and we formed our own group in my living room with lots of wine. I really learned that it was important to connect with the people who were your age and at your disease stage and also drinking stage. Who are all facing start of career, relationships, do we want to have families? These were the choices that we were all facing.
Ardra:
So I think however you do it, formally or informally connect with the people who are going through the same thing as you. I mean, it's so much later, now I'm not in any groups. I'm pretty good at articulating my meltdowns and getting the support that I need. But yeah, it's the value of having somebody who can say, "Oh my God, me too. I thought I was the only one."
Alex:
I find, yeah.
Ardra:
Yeah.
Alex:
I find myself saying that a lot to this guy, Mike, and just to be clear too, we don't only talk about MS stuff. And I think that's really the point of it too, because you do live with it in your house, or it lives with you rent free, which is the worst. But hearing someone-
Ardra:
It is also fucking expensive.
Alex:
Exactly. That's what I mean. If I could charge MS rent, it might be a little bit less anxiety causing, but it doesn't. But I can go for a beer with this guy and we can chit chat about music or anything else, and it's a lot easier. And then when it does, because it will come up or it has come up on its own, MS, but it's nice to hear someone say, "Oh, I'm always worried about climbing stairs." And I'm like, "Me too, man." Whereas a lot of my other friends, they don't talk about any fears with climbing stairs. They're like, "Oh, I had to wait at the back of the line," or something like that at the airport. I'm like, "Whoa, we just cruise through." I mean, it's a perk, but it's not a great perk, it's a bittersweet perk, but you can relate. Right?
Ardra:
I mean, when somebody is diagnosed, there's this obvious spotlight on the person with the condition to be looked after. I think sometimes we don't remember that the closest loved ones also needs some kind of care. And maybe the partner can't provide all of that when they're going through this at the same time. Definitely one of the burdens of having this disease is feeling like I have to reassure everyone around me a lot of the time that I'm okay. Even when I don't super feel like I am. And so yeah, we all have to look after ourselves and partners. I mean, yeah, it's [inaudible 00:21:26]-
Alex:
I always get the question, and I've got it several times this weekend, and it's always, "How's Nicole?" Like they'll ask me, people will ask me, they'll take me aside, "How's Nicole, how's she doing?" I'm like, "You can ask her, you don't have to ask me. She's perfectly capable."
Ardra:
My husband does that too. He will like, "Ask her," you know?
Alex:
And speaking to the learning curve thing, sometimes I don't even know. She has a whole range of feelings. She's a human being with her own capability and agency. So please ask her because I'm not going to give you any dirt or anything. And I don't want to be sarcastic. Their questions are coming from a genuine place. But you don't need to ask me, you can just ask that person. If you want to ask me how I'm doing, I will respond.
Ardra:
And is that something you feel, like, hey, how about asking how I'm doing also?
Alex:
It's weird, maybe-
Ardra:
Do you [inaudible 00:22:24] overlooked? Yeah.
Alex:
. I think that's a thing. I think partners probably feel that, I feel that once in a while, but I don't always feel it when people are asking that question. But the focus is on my partner and it's on the person who is dealing with the disease. So yeah, partners are overlooked, I would say. I feel that way sometimes. But what I wanted to ask you actually was, do you have fears for your partner?
Ardra:
Yeah. I mean, that question hits almost like a gut punch. I mean, of course I think the knee jerk answer is to say I'm afraid to be a burden or for him to be my nurse, but those are still my fears about needing that level of care. I would say my real fear for him is that he prioritizes my wellbeing way.... he puts himself last, and I worry that, I mean, if he's ever in a plane crash, he will definitely be the first to die because he will put everyone's oxygen mask on before he puts his own on. I mean, I don't know, I can't influence or change that. It's the kind of guy he is. But I definitely worry that he does not pay enough attention to his own wellbeing. He does things for me that he would never do for himself.
Alex:
Oh, really? Okay.
Ardra:
Yeah.
Alex:
I think that's probably a societal thing too. Right? You don't have the disease, so you are by default the protector of the person with the disease. Which isn't necessarily right, because the person with the disease is still able to do a lot of things for themselves. Yeah, it's an interesting thing. I mean, I have certain fears. I don't know if Nicole has fears for me. I don't know if my wife has certain fears for me, although I'm sure she probably does.
Ardra:
She probably wants you to chill out a bit. Right? I definitely also want my husband to just take a chill pill and just, you know, like we got this.
Alex:
If I could go into like some sort of, I don't know, incense-filled room and listen to Thai bells ringing, maybe I would chill out. I need to do that or something. I need to just chill out. I am, even now I fidget a lot. I don't know. Maybe it's just a natural thing, but it definitely is highlighted with MS for sure.
Ardra:
I mean, if I could wrap this up and go back to my early diagnosed self, I would tell her that it is totally acceptable, fine, reasonable to freak out. This is some scary, scary shit. But you can't live there. You find the workarounds, you find the hacks, you adjust, you figure out that you can do shit that you thought was scarier than it is. You're going to freak out again when you have a relapse or an attack or a set back, also normal. Don't try to not feel that stuff. But you figure it out. You find a way. And I mean, it's almost like MS gets harder, but it also gets easier, if that makes sense.
Alex:
I think that makes sense. And yeah, from a partner's perspective, I remember being in the hospital and hearing the sort of diagnosis that we got, and yeah, I pick myself up off the floor and be like, it's going to suck, but it's going to be okay too. That sort of cliche stuff, but it's true. It's true at the end of the day, you're going to hit challenges no matter what. Maybe they'll be a little bit more challenging now, but you'll still get past them and you'll still be okay. I mean, we're in a good place, so I'm happy.
Ardra:
Yep. I think let's spend the rest of the day, it's beautiful, it's sunny.
Alex:
Oh my God. Yes.
Ardra:
Have a cocktail maybe. Take the rest of the day off from feeling afraid of shit. Thanks for listening to Tripping On Air. Don't forget to visit us at trippingonair.com.