Community Voices

Colleen shares answers to some questions about life with MS, from Australians in the MS community.

If you're in the Facebook group attached to this podcast, please keep a look-out for future questions..

Transcript

When MS Is Mistaken For Drinking

Speaker 0:07

The one thing I wish people understood about living with MS is that if you see a person walking with a bit of a wobbly gait, not to automatically assume that they have been drinking.

Teresa On Wobbly Gait Stigma

Speaker 1 0:22

Welcome to MS MS, The Many Stories of Multiple Sclerosis. And now, what you've just been listening to is a lady by the name of Teresa who submitted her answer to some questions that I asked of the MS community. And that question that Teresa was answering was, What do you wish people would understand about living with MS? So that was the first part of her answer, and I've also received other answers. Now I put the question out into the community and I suggested that people might send in a voice recording, or they could respond by email or a comment under a post because it was on social media. So people could have commented with their answers. So I have a few different answers, and I've also spoken to people because I lead a support group of people with MS. So I've had some answers from those people as well. And to make this episode, I've put a few together so that we can hear. And a lot of the answers were kind of common because that's just how it is, isn't it? We tend to have similar experiences, and so I've chosen those answers that reflect those similar experiences, and a couple that were probably a little bit bit more specific or unique in a way. So I'll I'll go on now. I'll play the rest of Theresa's answer to the question, what do you wish other people understood about living with MS?

Speaker 2:02

I haven't lived with MS for very long and it was quite a journey. But one thing I have noticed uh now that I'm returning to social catch-ups in venues where they serve alcohol, so if I'm catching up with family and friends with my husband, if I walk somewhere in that venue, and I may be being overly self-conscious, but I do get a lot of people looking at me, and I can't help feeling that they're thinking, hmm, I think that lady's had enough to drink. The funny thing about it is I've always been a teetotaler, so uh yeah, it's quite a new experience for me. I've only had uh MS uh damage in my life for just over uh 19 months.

Assumptions, Inclusion, And Accessibility

What MS Teaches Unexpectedly

Speaker 1 2:49

Maybe we've all had those thoughts, haven't we? And people are watching because we're very conscious of it. So thank you, Teresa, for submitting that recording of your answer to the question. I really appreciate it. Now I'll read some evidence. And one of the answers was I wish that people wouldn't assume you can do things. I guess that's a annoyance, doesn't it? Um we can get invited to different things and not doable for us. And that same person who said that they wish people wouldn't assume that we can do things also said that she wished that people would understand that accessibility is necessary. We need accessibility, we need that level surface, that level floor to walk on. And uh we don't want stairs, so you know, they need to be considered, all those sorts of things, and and people don't think about it. I think we all understand if if when you don't know, you don't know. But it's kind of our place to make people aware of it. And part of this podcast uh purpose is to to share these things. So and we're not whinging, we're not whining, I've asked people the question, and so these are their answers, and and they are valid concerns that we we all pretty much have. So accessibility, that was one, and you know, that encounter um covers things like the level surface to walk on, and uh and another thing we don't like to talk about, but we like to know that there are conveniences, shall we say, uh, nearby. So those well, I'll say toilets or restrooms, where wherever you are in the world, or whatever you call them, I think you'll know. Um, but we need them to be nearby. We don't want them to be up a flight of stairs or or something, for example. So those things we'd like people to consider when they ask us to take part in different things. And the opposite of that though, though, another person said that we can be left out when people might assume that we can't do things. So that's kind of the opposite. We get left out, and that's a concern as well. There's another concern that I heard from a couple of people actually, that people arrange things without checking that we're able to make it, that we're able to to do it, to take part, to be there. And then what happens is they exclude us from everything after that. So we'll be invited and we might say, Oh no, sorry, can't make it, or you know, whatever we say, I won't be able to. And then people think, Well, I'm not gonna ask you again. And that's sad because we'd like to be considered. And we wish that people wouldn't judge us on face value, that you look fine when we've actually put in like 150% just to be there. And another response that I had online was from a lady who said she wished that people understood that it's a fluctuating and complex disease that can be difficult to navigate. I mean, we're living with it and it's changing all the time. I get that. I think you might do too. And I'll leave that there for that first question. The second question I asked was, what has MS shown or taught you that you never expected? And here are just some of the answers that I got to that. Teresa did answer it as well, and I'll play that in a moment, but I'll just read out the the answers that I had that were emailed to me or written down when I was with somebody, and I wrote them down myself, or they did. Um but I have a few of those responses to that question. So what's Emma's shown or taught you that you never expected? And one response was that it's okay to slow down and there's no need to do it all. There is no need to do it all. We don't have to do everything at once. And another response, and this one was online, uh, a lady who answered this question said that she had learned to really appreciate what she has. And she's also said that it's shown her how to be more resilient. And I think that's what we probably all can relate to. And another good point, now I'm not the gentleman that said it, and maybe it was the way he said it, but what he said was what he's learnt was that life's different, but it's not over. Yes. So and having that sort of sp perspective is sort of showing a spirit, I think, that like, well, we'll carry on. We carry on anyway. We keep living life. So that's just some thoughts, and I think we all have learnt something or discovered something that we didn't quite feel or see before, and so it kind of opens our eyes, I think, when we're living with a condition like MS. And now, of course, Teresa that we heard from in the beginning of this episode, also answered the second question about what she may have learned. So I'll play that now.

Speaker 8:45

Something that MS has actually taught me uh that I would never have expected, is I am ashamed to say that I myself in the past uh was very judgmental when you know you'd go shopping and you'd see people, uh quite youthful looking people getting around on motor scooters, and I just assumed they were being a little bit lazy and that, you know, a little bit of exercise and you'd be fit enough to walk around the shops, or if you didn't use your scooter, it's a good exercise. Um, I feel quite ashamed I ever uh thought that way because through my experience, uh I know when MS first struck me, I could hardly walk 10 metres while leaning heavily on a four-wheel roll leader. So it was a lot of physio occupational therapy, um occasion infusions, and then HSET in Moscow that has allowed me to walk without walking aids again, and I'm utterly ashamed that I ever had those sort of quiet thoughts to myself whenever I saw what seemed to be healthy-looking people riding around on these motor scooters. I just had no concept of the fatigue that autoimmune disease causes, and um obviously they could have injuries too. Um, so I'm more much more understanding like that.

Thanks, Community, And What’s Next

Speaker 1 10:15

So thank you again, Teresa, for that. I do think we all probably have felt something close to that, or if not almost identical. When we don't really, you know, when you don't know, you don't know. So until we know, we don't know. And I think it's it's probably more common than we like to think. So thank you, thank you, Teresa. Thank you, everybody that submitted their responses, that answered my post online, and to the people that I know locally. I really appreciate that you trust me to to share your opinions, and that means a lot. Well, it means a lot to me, but it helps a lot of other people, the people who are listening. And so, to listeners, I do hope you've connected in some way with some of those answers. I really appreciate that you're all here and listening because just by being here, you're sharing and you're a part of a community. So thank you so much for that. Now, I think that is it for today. I will leave it there. I may have other questions that I will I will put out there, and so if you're in the Facebook group attached to this podcast, please watch out. And I really do welcome any voice recordings that come back. They're really, really wonderful for people to hear other voices in the community. So, so I will leave it there and thank you very much. Do take care of yourself. We will return with more stories, more voices, and more words from people living with MS. I thank you

Speaker 1 11:59

so much. I'm Colleen Daniels, and this has been MSMS The Many Stories of Multiple Sclerosis. Thanks so much.