How to get a seat on the bus/train with invisible MS fatigue

[Mamabug]

Yup. What misslux says. I use a cane only very occasionally, if I am in an MS flare that affects my mobility. But, I have found it useful to not feel weird to request airport assistance. I don't need the assistance for the mobility, but, the stress of flying by myself and finding gates makes the assistance worth getting over my feelings about carrying a cane.

My cane is also collapsible and I can keep it in my purse when not using it. My cane's name is Ingrid. She is strong; she is female. And, she is there when I need her.

~ Faith

I know you probably don't want to bring one (trust me, I've been there), but have a (collapsible) cane with you at all times if you have debilitating fatigue. That way you can whip it out when needed and also get a seat without question.

Your safety is extremely important so please use an assistive device to prevent yourself from toppling over.

[SEAMSGUY]

I've often thought of putting my placard on a string around my neck...

[MMMMS]

I'm late to this thread, and I've never thought about it. (I take my car to work.)

I think I would ask if someone would let me sit in the handi seats. But I would definitely preface it with, "If anyone in a handi seat is not handicapped, would it be ok if I use the seat. I have MS, and it's very hard to stand on a moving vehicle." Maybe someone in a regular seat will offer.

Just putting myself in the already seated person's place. We wouldn't appear handicapped to anyone else.

[Nabbosa]

"balance disorder"

I've not had to use this yet, but since I look like I'm in great shape, I have thought about what I could say that would not make me burst into tears when I do need to sit. I came up with, "Excuse me, but I have a balance disorder and really need to sit down." It's not untrue, but nobody's going to dispute it, either.

Only once has anyone said anything to me - an older woman asked if I could stand up ... for her mother. I apologized and said I had a balance disorder, so I couldn't. On really bad days, I imagine myself having the guts to suggest someone ask an able-bodied person. I've also thought about using that phrase to ask for a seat: "Excuse me, but is there someone able-bodied who could let me sit down?" There's a tiny bit of shaming the actually fit people that goes on with that, but when I really need a seat, I can get pretty indignant.

[KatieAgain]

My sister has PPMS, struggles most of the time. Four years ago I took her and my niece, 8 years old, to Washington DC to see the sights. We parked and took the rail into the city.

We arrived to a full car, all seats taken. My sister just grabbed a pole and I stood behind her to help with balance. My niece took in the situation, looked around the car and shouted, "My Mommy has MS! She needs to sit DOWN!"

All but 5 or 6 elderly people stood to offer their place.

Sometimes kids are smarter than grown ups.

This story just made my day better! Thank-you for sharing it.

[Kaitar]

My Niece

My sister has PPMS, struggles most of the time. Four years ago I took her and my niece, 8 years old, to Washington DC to see the sights. We parked and took the rail into the city.

We arrived to a full car, all seats taken. My sister just grabbed a pole and I stood behind her to help with balance. My niece took in the situation, looked around the car and shouted, "My Mommy has MS! She needs to sit DOWN!"

All but 5 or 6 elderly people stood to offer their place.

Sometimes kids are smarter than grown ups.

[football-mom]

I take the lightrail to work. Sometimes in the mornings it is packed - nowhere to sit!! And if I stand all the way into downtown (about 25 minutes) I will just fall over.
This fatigue is invisible... what to do? "Hi, I have MS - can I have your seat?" I'm too shy for that.
Sure, there are disabled accessible seats but they're always taken and if you don't have a cane or wheelchair, folks don't move.
Anyone else have this problem?

Get a foldable cane just for the commute. When you're done you can fold it up and put it in a bag. I keep one for those unexpected weak days.

[BigA]

I pondered this just last night, not getting a seat on the bus. I held on to the straps to lessen fatigue, but thought of how I might ask for a seat. All I could come up with was a T-shirt that said "fu, I have MS" but that's not good.


I'm a guy, so for now, I'm too proud to ask. When I do sit in the reserved seats, if someone ever did say something, I know what I'd say.

If you're not embarrassed, you might try the following:

1) I need to use a handicapped seat, would anyone mind letting me sit down?

2) I have MS, would someone give up their seat so I can sit down?

In my city, there are handicapped bus passes. You could ask the bus driver to help you find a seat when you get on.


As for sitting next to people, as long as they don't smell bad or look crazy, there is usually a seat next to someone whom the others find too scary to sit next to. Also, if someone is stretched across more than one seat, you can sit your self down beside them. If you sit down and ask "How's it going?" or just explain "Thanks, I have MS and it's exhausting to stand", they're more friendly than you'd imagine.

[mctripat]

can't stand on public transportation and handicapped parking

I would try the folding up cane and get a handicapped placard for a car.. even if you do not have a car. Those are the most obvious ways I can think of to let someone know, without speaking you need to sit down.

I always try to hold doors open for people and try to anticipate people needing help... even if I can't see a disability. My husband and I hauled his Dad around in a wheel chair for over 3 years. Also my husband has a small handicapped scooter he uses if we go to Costco or anywhere where a lot of walking is required.

I have problems with my knees and feet but don't always use a handicapped placard. My disability is obvious but that does not mean people are not rude or insensitive. There is a lady here who was trying to catch people driving cars and parking in handicapped spots who were using a placard belonging to someone else... and that person was not in the car... in my state this is illegal. Our placards have our picture on them. But the police ignore this because there is too much felonious crime. Plus now we need to go after people driving and using cell phones....in the metro areas, they can't enforce this state law very well.

People who had state jobs downtown were borrowing placards from friends and family members because handicapped people get to park for free (except at the airport), at state, county, city and public parking lots/garages. Free parking did not necessarily require a handicapped space, either. Most people who work downtown pay to park in a lot. There is very little parallel parking and what there is, is not free. A investigative reporter talked about this on the news... he wanted the state to do something to stop these people from doing this.

[HobbitHead]

I think I would just hold up a candy bar and ask who wanted to trade for their seat.

[Guzzy]

Jen (Cat Mom) yes you must! I'm in awe of your city.
In Dublin I've seen seemingly able-bodied men in suits pointedly look out the window at a heavily-pregnant woman. I gave her my seat because I couldn't bear to see her stand when she was obviously in pain.
Young people take up two seats a lot, rather than have someone sit beside them, and they usually ignore any elderly people struggling to stand.
It's why I gave up on public transport; it made me too tired, angry and exhausted before I even got to my destination.
Theses days I drive and get places without the same hassle. I was brought up to be courteous to others (not that you'd know it from me sitting on people on purpose when pregnant ) but these days in Dublin, it seems it's everyone for themselves.

[onlyairfare]

The cane is a good idea, but I also have a handicapped placard for my car that I keep in my purse. If I need to use a handicapped seat on a bus or a train, I pull out the placard and show it to someone sitting in a handicapped seat, saying "Oh are you handicapped too? Do you know where I could find another handicapped seat on this bus/train? I am not able to stand for very long."

Then either that person or someone nearby will offer their seat, and I don't have to get into a discussion about my diagnosis and invisible handicaps.

[Cat Mom]

I must live in an extremely courteous city! Even with no cane or any visible symptoms, people actually still offer their seat to a lady. Even more surprising, as the route I take the most has lots of high school students, today's youth are usually the first to offer!

Jen

[Guzzy]

I agree with Kelm - be comfortable with your MS.

Took the plunge a while ago and I told a lady on the bus that I had MS and could I ask her for her seat, because I couldn't stand. She recoiled from me, as if I was about to infect her. It did upset me at the time.

Later on when I was pregnant, visibly so, and in agony I just took to sitting on people. Oh ooops! Sorry! Did I sit on you? Oh dear. You know the ones who take up 2 seats, or who are so kind to their bag but leave people standing, or who sit on the outside of a vacant double seat. Sitting on them by 'accident' made them move over, fast.

I think just take no prisoners, don't be apologetic, just matter or fact say 'I have MS, it might not be visible, but I'm not strong enough to stand on this bus. Can I use your seat?' Good luck. x

[Seasha]

Ditto on the collapsible cane idea!!

I've used a cane for close to 5 years now and can't believe how people have been so incredibly kind and helpful when I've needed help.