Guess I'm Still Learning: I like to think... - My MSAA Community

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Guess I'm Still Learning

greaterexp profile image
33 Replies

I like to think I have this MS thing figured out pretty well. Hubby bought me that great wheelchair recently so we could do more together. We went to an outdoor event on July 4, and we really didn't think there would be much walking. We both thought about taking the wheelchair, but decided not to for some silly reason. There was actually quite a bit of walking since we didn't know where we were going and parking was a bit scanty. About half way through, I was miserable and in a lot of pain from trying to walk, but other than letting hubby do a fireman's carry, there was nothing to do but suffer through and hobble as best as I could. Stubborn, or just plain stupid? I must be both, but lesson learned: just take the chair!

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greaterexp profile image
greaterexp
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33 Replies
erash profile image
erash

I’m right there with you. MS symptoms vary so much, you never know how to plan, especially if your need for assistive devices varies too.

carolek572 profile image
carolek572CommunityAmbassador

It's better to have and not need than to not have and need. That's easier said than done, and I am in the exact same thought of mind as you, greaterexp :-D

jimeka profile image
jimeka

I don’t know, we never learn. Can we really blame the ms for that? Of course we can 😂 I hope you are not suffering too much 🤗

Kenu profile image
Kenu

I have learned to leave things in the car just in case. One of my buddies has gone back halfway thru events and gets my chair or Cain. Better safe then miserable 😖 Ken 🐾🐾

greaterexp profile image
greaterexp in reply toKenu

Alas, we took hubby's truck instead of the car. I just need to adjust!

erash profile image
erash in reply togreaterexp

Key MS word “adjust”

And adapt and the one I’m horrible at accept

greaterexp profile image
greaterexp in reply toerash

It's harder than I thought. If it only took logic, we'd be all right. But I also have to remember things and think ahead, and those don't come easy anymore. And then there's stubbornness,etc.

Sweetheartonvdayl profile image
Sweetheartonvdayl in reply toKenu

I agree😊

❤Lisa💕

Turtlepie profile image
Turtlepie

It is so easy to hold on to the things we use to do. I would call all of us stubborn. I keep my walker in my car at all times. I have not used it in a long time. But when I am alone it is there. I go to places that I would trust who is there to go get it for me if I would need it. Rest and get your energy back. Prayers for you

rjoneslaw profile image
rjoneslaw

lesson learned

Tazmanian profile image
Tazmanian

Keep your chair in the truck just in case, I hope you are ok and your husband

greaterexp profile image
greaterexp in reply toTazmanian

Thank you. A good rest was therapeutic. It would make sense to leave it in the truck because my husband usually drives it when we take it anywhere together. It’s just a matter of thinking ahead and moving it to the right vehicle.

janetb1968 profile image
janetb1968

Oh bless u honey, it’s crap this MS thing, it really is 😠😠😠😠🙁🙁🙁🙁

Amore55 profile image
Amore55

Oooh, that is so difficult! I have had to learn to just keep a myriad of items in my vehicle, my walker, wheelchair and quad canes. That way, depending on what comes up, I feel ready. But I need someone to push my chair, since my arms are no longer strong enough to do it. That makes me so angry! I was so strong before! Oh well. Glad you are feeling better! Take care, much love. Kelly

greaterexp profile image
greaterexp in reply toAmore55

My arms are getting weaker, too. Right now, I can wheel the chair in the house (I don't need it, but I tried it out to see.) I would have to have it wheeled for me, too, so it would make sense to leave it in hubby's truck. He doesn't like to have the back seat full, however,

This constant adaptation and adjustment is harder than I'd guessed it to be.

StacyHayward profile image
StacyHayward

I’m the same way about my cooling vest. I underestimate how hot it is, don’t wear it, and get overheated. Did that on the Fourth of July.

JTZES profile image
JTZES

I think we are all pretty stubborn. Or feel we have accepted our situation but that's not the case. Running a simple errand can be much more than anticipated and I didn't bring my cane. Or if I bring the cane I don’t take it into the store with me. Then it becomes pretty useless.

greaterexp profile image
greaterexp in reply toJTZES

I've sure done that, too - forgot my cane. Usually I am pushing a cart and can lean on that. But that's how it is with my MS; I can feel confident when I walk in, but halfway through the store, realize that I really needed it. So many stores are huge and require us to walk quite a lot to get all the items we need.

sashaming1 profile image
sashaming1

Do you have a "Handicap" placard for your car to get to park closer?

greaterexp profile image
greaterexp in reply tosashaming1

Yes, but it wouldn't have helped me there, unfortunately. I've learned to carry it in my purse instead of leaving it in my car, so when hubby drives us in the truck, I still have it. I guess I've learned at least that much!

I do the same! I think we want so badly to just be able to do whatever it is. Unfortunately what happens is a set up for a struggle by none other than ourselves.

My grandfather died 2 months before my dx in 2017. He was a jokester. During those self misguided moments I picture him shaking his head smirking saying “têtu pautsch” which he said to me ALL THE TIME growing up. It is a term that means stubborn person in French.

I’ve never denied it and have tried to convince myself its a positive trait that has gotten me this far. However now with my MS, I need to remember that stubborn may not be the way to go sometimes.

It feels like giving in or up or failing somehow though.

Glad to hear you all get it.

greaterexp profile image
greaterexp in reply toGoldilockssearching

I had that thought very briefly before leaving. “If I take my wheelchair, it will feel like giving in and make my husbands s feel bad.” Now I realize how bad he felt for me when I couldn’t keep up and had such pain.

falalalala profile image
falalalala

As much as I'd like to walk around, my wheelchair is a God send, especially if it is hot at an outdoor event.

Mine is an old clunker that my sister's neighbor was getting rid of and it works well so far.

I got a decent cushion for it as nothing butt the best for my arse.😂😂😂

Texandyroe profile image
Texandyroe

I’ve learned my lesson the hard way, too! Now, I have hubby load my wheelchair in the car anytime we MIGHT be going somewhere that might include more walking than I’m comfortable with. Many times, the chair stays in the car, but on the times where the walk is longer than anticipated, it paid off.

greaterexp profile image
greaterexp in reply toTexandyroe

Smart cookie!

IFwczs profile image
IFwczs

I had an appointment yesterday just a few blocks away but let my husband roll me there in a wheelchair. I am glad I did. Exhausted and barely walking in the heat? I guess I am over my pride.

greaterexp profile image
greaterexp in reply toIFwczs

That’s so wise!

pamgarner profile image
pamgarner

yes just take the chair when in doubt!.sometimes even if I don't sit in it,i push it if we are going to do alot of walking,it gives me stability pushing it like a grocery cart and if you want to sit down- viola-instant seat and wheels,and if you aren't sitting put any packages there

greaterexp profile image
greaterexp in reply topamgarner

This wheelchair only weighs about 15 pounds, so it should be easy to take it in and out of vehicles. I'm taking it for sure when we take our little trip to the coast soon.

pamgarner profile image
pamgarner in reply togreaterexp

you know they rent wheelchairs with large tires you at the coast you can take on the beach and I am jealous:)

greaterexp profile image
greaterexp in reply topamgarner

I've already vowed to get this one out of the car, even if it's only to push it in place of a cane. I will feel so much better knowing it's there if and when I need it. How nice it will feel to know that I won't be stranded or force my husband to walk or run long distances to get the vehicle in case I can't walk.

pamgarner profile image
pamgarner in reply togreaterexp

we are full of wise ideas when we have to be huh?:)

greaterexp profile image
greaterexp in reply topamgarner

I’m quick to offer advice to others, but would do well to heed my own advice!

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