World MS Day - Multiple Sclerosis - giver and taker

Diagnosis can feel like someone has quietly swapped out the map of your life while you weren’t looking. On World MS Day, Colleen sits with that reality and talks about what can happen after hearing “you have MS” and how honesty matters more than forced optimism. 

Transcript

World MS Day And Today’s Theme

SPEAKER_00 0:00

Hello and welcome back to MSMS The Many Stories of Multiple Sclerosis. Now today, 30th of May, is World MS Day. And of course there's always a theme every year for World MS Day. And this year's theme is diagnosis. But I think generally, because there are going to be all those stories out there, I'll keep this podcast a little bit off to the side. But World MS Day, as I've said, it usually has a theme, and this year it is about the diagnosis. But it's also about awareness, it's about connection and sharing, sharing the realities of life with MS. So today I'm going to talk about not just what MS is, but what it changes. So I'm gonna aim that way. Because MS does take things, it steals from us. And sometimes it's small things, sometimes it's enormous things. But alongside those things that are stolen from us, the things that MS takes, there are well there can be unexpected things that it gives us back as well. I'm trying to point toward the how should I say, uh the quiet things. Our perspective changes. And we meet different people once we're diagnosed with MS. Our life changes path, we're directed in a different way. And we do find strength, we do. Strength that we didn't know that we had, and we develop this ability to appreciate, I guess what we'd say is ordinary, ordinary things, ordinary moments in a way that we probably never did before, might never have if not for MS. And that is

When MS Steals Certainty

SPEAKER_00 2:05

talking positively, I suppose. But I thought we'd talk honestly about those things today. So the things that MS took, it takes our certainty. Because we do, we tend to live with certainty. We know what we want and pretty much where we're aiming and what tomorrow's going to be. MS takes that. And I think it's probably the first thing that many encounter. Before MS, we expect that our body's going to cooperate tomorrow, the same way that it does or is today. MS changes that. And your future suddenly becomes hazy or or blurry. And so the plans that you had change. We start planning life differently. We have to calculate energy, we have to think about accessibility, and you wonder whether your symptoms are temporary or permanent. We don't know. There's that uncertainty that's just there, isn't it? And you learn that your body can't always be trusted. What is today may not be tomorrow. And so we lose confidence as well. And there's something vulnerable about that, uh about the fact that your body suddenly is not really under your control.

Fatigue Fear And Lost Confidence

SPEAKER_00 3:49

It can change your sense of balance, that can go wonky. And the fatigue can come and go and stay and go and come and go. And it can be quite um I don't know what that word is. It's huge. But the fatigue is it's not just being tired, and I know everyone says that, but that is so true, and there is no way to explain it. It is just massive, you're wiped out with the fatigue from MS. And it can make you feel frightened. All of this can make you feel frightened, can make you embarrassed sometimes too, and angry, and sometimes all of that at once, really.

Spontaneity Replaced By Constant Planning

SPEAKER_00 4:40

And MS takes our spontaneity where we could immediately jump up and do things. I have a story about that myself, but I won't tell it now. Um, but things that we might do on the spur of the moment we don't do because they involve physical ability. We don't have that ability. Many people with MS become planners because we have to. We become expert at it. We plan rest, we plan recovery, we plan exits, we plan a way out from wherever we are. We plan around the weather, we plan around fatigue, appointments, medication, medications medication schedules, and energy levels. Even the fun and joyful things can can mean we have to calculate. We have to calculate our day, how it's going to work, from you know, what time we're going to get up and and then how long it takes us to get ready, and then if we have to do something in particular, we have to work all that all out, how we're going to do it. And sometimes we wake up and we can't do the thing that we were going to do. So we have to rearrange as well. And I think people outside the world of MS don't realize how exhausting all of that can be.

Grief Friendship Shifts And Being Honest

SPEAKER_00 6:13

And friendships that change. We do lose people, I think sometimes, not always. And our bodies change. So we grieve that. We grieve all of that. And we grieve that version of ourselves that we used to be. And that grief, you know, it deserves the space. I mean, we're entitled. We're entitled to that grief. It's totally normal and okay. And I think many people with any chronic illness become very good at minimising their own their own grief and that sadness. Because they don't want to upset other people. We don't. We don't like to burden other people with our issues. But you know what? Acknowledging that loss isn't being negative. It's just being honest. And honesty really matters. We have to own what is we do. It's healthy to do that.

Perspective Community And Quiet Strength

SPEAKER_00 7:21

But here's the other side of things, those I guess unexpected things that MS can give us back. And that it's all a bit strange, I guess, but somewhere along the way many of us have also gained things we didn't and never expected. As I've mentioned, perspective. It changes. MS has a way of stripping away the nonsense. You start valuing people, different people differently. You realize who truly shows up. You realize who's listening, and you find out who stays. And small things can become enormous a good day, a walk where you managed it and a laugh with friends, a shower that didn't exhaust you an ordinary cup of tea on an ordinary morning where everything goes okay. And those moments become precious in a way they probably never were before. And MS can also create incredible community. Some of the kindest, funniest, strongest people that I've met and that I've spoken to through this podcast and that I still speak with outside of the podcast. Beautiful people. And they're people living with MS. People who are struggling themselves, having different issues, no matter what their life has brought them with their MS, still somehow make time to support others. And that's extraordinary when you think about it. And another thing, strength that we I think we all have in different degrees, but it doesn't always look brave. Strength does not always look brave. I also think MS changes our understanding of strength. It's not always dramatic. Sometimes is simply getting out of bed, getting up, getting ready, and going to an appointment. It's also asking for help. That takes strength. That takes courage. And to try a different treatment, if your neurologist is urging you to try something different, something new, something that might be just approved and out there for us, that takes strength. And starting over again on a new medication, just to do that. Sometimes strength can look like having a good rest. And sometimes it's just surviving a really hard day quietly by not getting upset and loud about it. If we can do it quietly, that's really strong. That really is taking some strength. And honestly, people with MS do do brave all the time. That nobody notices.

Hope Without Toxic Positivity

SPEAKER_00 10:41

I never want this podcast to become toxic positivity, if you know what I mean. Because MS is hard. I don't want to be overly positive. Because it's hard. And some people listening today are frightened. There's all different symptoms that everyone out there is dealing with. And they're all we're all at different stages. There are people who are just newly diagnosed, people who've had MS for a year or two or or ten or twenty or more. So we're all at different stages. We've all come to different understandings and different ways of accepting. And some of us haven't quite accepted yet. And that's why MS is hard. And some of us are grieving, some of us are exhausted, all of it's real. All of it's real. But hope can still exist. And I'm not I'm not trying to be Mrs. Positive, I'm really not. But then you know, hope can still live and exist beside all the hard stuff. It really can. Because hope can be good support, it's better treatments, it's research and meaning and purpose, and just learning that life can still be fun, you can still be happy, even after you have the diagnosis. And it's hard, that diagnosis is hard, and that is the theme of World MS Day. So I'm not downplaying the diagnosis and the impact of that, that is a hard pill to swallow, as they say. Um but sometimes hope, you know, it's tiny, it's little, but it counts still. That little hope counts because that can build when you have find yourself having a good medication that actually seems to be changing things for you. Even in a small way, that tiny way is tiny hope, and it can build, and you can find your way through MS, a way that has you feeling

Identity Value And The Closing Invitation

SPEAKER_00 12:56

better. So this world MS Day. I think maybe the message is something along the lines of well, my message that I'm putting out there is that MS changes it changes lives. And it's and it is a lot. It does change our lives a lot. But change doesn't mean that you know everything's wrecked. People with MS are still happy people, they're still smart, they're still loving and caring and creative, and they're definitely still important and they're definitely still valuable. We're still all fully ourselves. We are us. I am me, you are you. Nothing can change that. So whether you're living with MS or maybe you're caring for someone who is, and thank you for being here listening if you are a carer. Thank you so much. And maybe you're simply listening to learn. That is that is wonderful. So I thank you on behalf of the whole community for for caring. And I thank you for being here. I thank you everyone for listening to the stories that people have told, for listening to me when I waffle on. But thank you. Thank you for helping everybody here feel less alone because I know you're there, you know you're there, I look at the statistics, I know people are listening all around the world. So I thank you for that. I truly do, because we are community, whether we get to see each other or it doesn't matter. We're all here and we're all sharing. So thank you for helping create a world where MS is better understood. Feel free to share this episode if you think it's worthwhile for somebody, anybody. And if you'd like to tell your own MS story, even if you are a carer, if you'd like to speak about your life caring for someone with MS, that is incredibly relevant to all of us. So if you'd like to do that, please get in touch via email. The email address is in the show notes, but I will tell you it is MSMSpodcast at proton.me. You can contact me there and just get in touch and let me know that you'd like to tell your story and we'll go from there. But until next time, this is World MS Day. I wish you a good day. And until next time, please take care of yourselves and take care of each other. Thank you so much. I'll see you again. I'm Colleen Daniels, and this has been MSMS The Many Stories of Multiple Sclerosis. Bye for now.