What would be the first thing you you do... - My MSAA Community

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What would be the first thing you you do if you were free from MS?

erash profile image
80 Replies

This is from an MS news blog and has made me contemplate the question.

Any setbacks caused by MS have caused me to find new ways to enjoy my life and find happiness and I’m not sure I would readily give those things up.

So I’m going to have to think about this further but how about you? What would you do first?

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erash profile image
erash
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80 Replies
Royjr profile image
Royjr

🤔🤔 I don’t know. Since being diagnosed I been giving so much joy that I will never want to give this up.

rjoneslaw profile image
rjoneslaw

I would walk normally meaning I would have balance, walk faster than a turtle, and no drop foot

IFwczs profile image
IFwczs in reply to rjoneslaw

I feel the same way.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

REALLY GOOD QUESTION! erash and I have no answer yet.

I have met so many wonderful people on this rollercoaster ride, and I don't know if I would trade that.

I would get rid of the Symptoms tho! 😂

My life has changed so much because of this to... I see things from a very different angle now. 🤗💕

J🌠❄️

kdali profile image
kdali

Hike Zion with friends

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply to kdali

My step-son was climbing Mt Whitney here in CA yesterday 12-8-18 on a rocky slope just feet away from what is called the snow chute, could very easily cause an avalanche if not very careful. I swear he lives on endorphins, natural ones! BTW he did run the Marine Corps Marathon a couple of times.

kdali profile image
kdali in reply to CalfeeChick

That’s awesome!

erash profile image
erash

Ok you reminded me, run the Marine Corps marathon (it would have been my 18th marathon) but in retrospect it’s really not that important to me anymore more. Interesting how your perspective changes

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply to erash

erash just reviewing posts when i yours about the marathon Kudos to you!! That is really awesome. my hubby ran 22 marathons after age 50. Had to have neck fused in early 70's. Still healthy, but wishes he could lose some weight. Now with all gyms closed, He's got more incentive to build his gym in the garage. He's got a fancy treadmill that was given to him and a Bow-Flex in the boxes that he purchased with Super-Bowl winnings a couple of years ago. I think I need to mention that to him when I get off pc!

erash profile image
erash

Ok you reminded me, @ kdali , run the Marine Corps marathon (it would have been my 18th marathon) but in retrospect it’s really not that important to me anymore. Interesting how your perspective changes

mrsmike profile image
mrsmike

I'd take a long, long walk.

Shellilee profile image
Shellilee

Be able to look someone in the eyes instead of from my wheelchair and give a great big bear hug since that's hard to do sitting in a wheelchair as well. I would also love to walk again.

Juliew19673 profile image
Juliew19673

Clean my apartment? Not very interesting or moving but being able-body to throw away big, heavy things would be nice..

CraigS profile image
CraigS

Dance

erash profile image
erash in reply to CraigS

Oh, I like that one!

Jazzihorsecat profile image
Jazzihorsecat

🐎🐎I'd ride horses again, can't wait, hopefully perdy-soon!💐😻👍🐾🐈Ahavah!❤💗😍---Jazzy🌹💜

jimeka profile image
jimeka

I would like to sky dive and raise money for ms research. 🎄

erash profile image
erash in reply to jimeka

So altruistic 👍

I went to airborne training in the Army and have no desire to jump from planes again 🤢

jimeka profile image
jimeka in reply to erash

My daughter Sam did it for ms, she said she would not do it again, little did she know she was pregnant at the time. We blame Charlie’s Curly hair on his mum jumping out of the aeroplane and his mischievous behaviour 🎄

erash profile image
erash in reply to jimeka

😊

rlh1974 profile image
rlh1974 in reply to erash

I did ranger school, my DI had to plant his size 10 in my ars to get me out of that plain! True story!

erash profile image
erash in reply to rlh1974

And by the 3rd pass around the drop zone, I was so nauseated I couldn’t wait to jump. At 88 lbs I stayed aloft longer than those who jumped after me but I still landed with a thud—oomph!

rlh1974 profile image
rlh1974 in reply to jimeka

jimeka Ok, I admire what you are saying. However, God put a perfectly good set of tires on an aircraft. So why jump out of a perfectly good aircraft!? There has got to be a better way to raise money other than flirting with bouncing off the ground from 12,000 feet! LOL!

Rob

jimeka profile image
jimeka in reply to rlh1974

Any ideas? Merry Christmas by the way 🎄

rlh1974 profile image
rlh1974 in reply to jimeka

I posted my idea further down. It involved chasing my wife!😏

Merry Christmas!

Doubled51 profile image
Doubled51 in reply to rlh1974

I totally agree with Rob. Ain’t jumping unless the planes gonna crash.😂😅😂🤣.

Donnie

go for a walk, pain free

erash profile image
erash

I have a wish that everyone can achieve their dreams 🥰

CalfeeChick profile image
CalfeeChickCommunityAmbassador

erash I would build my strength back up and go for a bicycle ride!

Mimsaya profile image
Mimsaya in reply to CalfeeChick

Ride my bike again every day

RoseySawyer profile image
RoseySawyer

I don't know what I would do. Run, jump, etc. I would be happy and grateful. To run in the sun without being so tired and having so much muscle weakness would be AWESOME! 😊❤🌷

erash profile image
erash

Ok, I dream of running in the surf with the sun baking my skin and my hair flowing behind me 😊

rlh1974 profile image
rlh1974 in reply to erash

erash I like that one too! Sun, Surf and Sand! Im in!

Rob

knokkebok profile image
knokkebok

Find a job and look after my family!

Ski!!! Any kind. It’s the only thing I really miss. I remember circa 25 years ago cross country my kids whining (in perfect weather overlooking Lake Tahoe...) “Where’s the lahhhdge??? I hate this!!” Lol 😂 And I really miss working😥

carolek572 profile image
carolek572CommunityAmbassador

erash I would love to be able to walk, with style, and grace, no fear of falling ~ and not need walking aids - ever! :-D

in reply to carolek572

It’s a bit hard to sashay with a cane, but I’m doin’ it! 😂 lol 💗

SueAB profile image
SueAB

I would hike Machu Picchu with my hubby after I put on my burgundy eel skin heels and went dancing!

Doubled51 profile image
Doubled51

Dissolve the falling down club.😂😅🤣. Then remember what it was like to walk without wobbling or staggering like a drunk person.

Donnie

dailygrump40 profile image
dailygrump40 in reply to Doubled51

Even though I'm getting better at not falling nearly as much I should probably join the club also.

dailygrump40 profile image
dailygrump40

Go Deer hunting. I miss that so much. More the spending time with the friends and family that I don't see all year long.

RoseySawyer profile image
RoseySawyer in reply to dailygrump40

I like Deer hunting!!! My husband and kids go every weekend. I also go when I feel good. 😊❤🌷

Doubled51 profile image
Doubled51 in reply to dailygrump40

I love deee hunting myself. Thanks to my son I’ve been able to go a few times this year but the weather has gotten in our way more weekend than we’ve got to hunt. Which I don’t hunt from a stand anymore only blinds but it’s still hunting’ and I’m in the woods. Here’s praying you get to hunt again.

Donnie

dailygrump40 profile image
dailygrump40 in reply to Doubled51

Hunting is hunting. Whether from a stand or blind or like how I was taught. Find somewhere to sit or a tree to stand in or one that's fallen over into another one that's only a foot or 2 off the ground close to a "high traffic" area. But driving deer was my favorite.

Doubled51 profile image
Doubled51 in reply to dailygrump40

I was always a diehard stand hunter til my balance went away due to ms but you’re right hunting is hunting. My sons got me a couple of blinds set up that I only have to walk about 10 yds but I wind out falling at least 1 a day when in the woods. But so far they’ve all been soft landings.🤪😜.

Donnie

dailygrump40 profile image
dailygrump40 in reply to Doubled51

Soft landings are definitely better than any other. Especially while hunting. Be careful out there. John

leking1 profile image
leking1

I'm right with you at the beach, running in the surf with the sun beating down on me! I'll have to wait for my hair to blow back in the wind, since it is cut short now so I can take care of it, but without MS I can let it Grow! Then I want to climb the steps in the tallest light house I can find!

pamgarner profile image
pamgarner

walk ANYWHERE, backyard, mall, scenic placesgo Christmas shopping, pick out a tree.Most people don't realize when you have limited walking,so many things are off the table

erash profile image
erash

I feel humbled by everyone’s responses 😳

CarolynK23 profile image
CarolynK23

The very first thing? I’d do Jumping Jacks. Yes, I’ve thought about this topic before. 🙃

erash profile image
erash in reply to CarolynK23

Now that is challenging!

CarolynK23 profile image
CarolynK23 in reply to erash

I want to feel that effortless self-propelled motion; get off the ground and move my limbs quickly, get the blood flowing!

LissaH profile image
LissaH

I love to dance so I would go somewhere where there was good music the kind that you don't think about but it moves your body and dance for as long as the music is good and moves me. I use to be the first and last one the dance floor and loved every min of it. Now I dance in the chair for fear of falling and legs getting heavy that I wouldn't be able to move and someone will be picking me up to sit me back down on a chair. haha

now if I see people dancing I just watch them and enjoy seeing the looks on their faces and watch how the music makes them move and enjoy the moment wishing I was out there joining them. I may get two dances in there before I have to call it a day. That is what I miss the most and to do it pain-free of course.

PLPZ profile image
PLPZ in reply to LissaH

Dancin' like Elaine on Seinfeld...thats me, just to mess with people! LOL

in reply to PLPZ

Gotta love it! That’s so true... I was an outstanding (pun intended!) 💃 dancer!!

LissaH profile image
LissaH

can I add one more? great sex :-)

erash profile image
erash in reply to LissaH

👍

rlh1974 profile image
rlh1974 in reply to LissaH

LissaH you stole my answer from further down the line! But great minds think a like! Well said!

Rob!

lbenmaor profile image
lbenmaor

Work outside the home and walk longer distances than I do now.

Leslie

stepsforNeeC profile image
stepsforNeeC

Tell God thank you again, I have been given blessings that I feel so humble and thankful for! Life I'm so grateful -

bavery207 profile image
bavery207

erash I would check to see if I got my singing voice back, and if so I would burst into song!!!

erash profile image
erash in reply to bavery207

I couldn’t sing before I had MS and I certainly probably can’t sing any better now. However it doesn’t stop me from belting out rock ‘n’ roll songs in the car with the windows up🤪

hairbrain4 profile image
hairbrain4

I'm kinda where you are. After Ocrevus, I feel better now than I have in years. Is it the Ocrevus that's making me feel this good or is the MS really in remission? I don't care I feel great now & I am able to do just about anything without much worry of a relapse. I am still being careful not to overdo. But I am off 3 meds because of the Ocrevus. If I would feel this good being MS free I would be in heaven on earth.

erash profile image
erash in reply to hairbrain4

So happy for you! Yes, it’s like euphoria 🌈

rlh1974 profile image
rlh1974

Hi Guys! I will be a little off color. I know I know shocking!!!! But the first thing I would do is smack my wife on the a%^ and chase her right into our bedroom! ;), Sorry if that offends anyone, but I dream about being able to (how do I say this politely?...........) Make her happy! Yeah thats it!

That is the first through 50th thing I would do!

Rob

Doubled51 profile image
Doubled51 in reply to rlh1974

rlh1974 . Good answer Rob.😋😋😋

Donnie

erash profile image
erash in reply to rlh1974

👍 as long as your wife is game 😊

Doubled51 profile image
Doubled51 in reply to erash

I know mine would be more than happy. More like ecstatic.😇😇

Donnie

rlh1974 profile image
rlh1974 in reply to erash

erash she is and would be very happy to have me back to me! 22 years ago today, we had our first date. On my birthday. We have officially been together half our lives. And until ms made things not work and my body hurt worse than it did before, I always slapped her bum everyday and chased her around! She loved it!

Rob

PLPZ profile image
PLPZ

If I were free of MS, would probably try to rejoin the field of work I had been in mostly, all of my life, which was print advertising in newspaper. Well that field is like walking a landmine recently, so online is the new wave, and not so sure how successful I would be there. The computers kind of make my eyes go buggy, so my rate of accomplishment would be pretty low. My work day, then would start about 7:30 am and some days, I left at 5pm, some days I may be there till I was done. 7-8pm...I did enjoy a flexible schedule, and since I did get to be out in the community, my job was my social connection and my job was what I did. There is no way, now, that I would be able to maintain, or even 1/2 way maintain that pace, due to heat sensitivity. It taked me about 3 hours to do anywhere, then I am so hot and tired, I need to lay down, rest my brain and take a nap. I am definately not a candidate for making appointments, being on time, carrying out details and managing $$$$ revenue for large companies, when I have difficulty managing my checkbook! The best thing I could do for myself after being on this diagnosed journey of 10 years (though I believe onset has been more closer to 18 years), is go swimming. Its a love of mine since I was a kid. No one is going to judge, although I feel self conscious, I am still pretty edept in the water, I dont have to get dressed up, and I DONT GET hot. So, I believe the water at the Y is calling! Now that I've had 10 years to clear out my residence. And have my new life in order, I am READY TO GO!! I wish anyone reading this the Best, a Merry Christmas and Happy (and SWIMMINGLY) New Year!!

erash profile image
erash in reply to PLPZ

👍🏊‍♂️

in reply to PLPZ

Yes, I can understand you totally. I lived for work and kids. I loved multitasking. I’m not on the Internet much now because of eyes. Dammitall! And I’ve had to ask for help.😳That has been a huge life lesson for someone who’s never wanted help! But I did set myself up so I could swim. I feel like a real person in water..😊

falalalala profile image
falalalala

I would run or at least walk too fast for the people that are with me. I miss those complaints.Lol!

Guava69 profile image
Guava69

Peace Erash!! I read this post a day ago and my mind was blown away thinking what would I do "first" if I was free of MS😱 This question was/is such an awesome mental excersise. My response begins like a new UPS commercial when an unsuspecting customer asked the UPS rep what can UPS do? And the rep starts to name all the services they offer and continues throughout the night and finally ends with and oh yeah shipping ( my interpretation/recall of the commercial)

Anyway as I thought about this question a sense of euphoria was washing over me. I would first bow down and prostate in prayer giving thanks to God. Getting up and down on my own would be the beginning of my true normal not my so-called new normal. Then I would run like Forrest Gump never looking back until I reach the nearest ocean. Rest. Lye in the sand and then just walk along the beach getting in and out of the water as I please. Finally after getting a grip on my new reality I would travel extensively locally nationality and internationally. And I would definitely like to pursue a new rewarding career that I will be excited to get up in the morning and feel blessed at night that I am a part of..Oh yeah a life free of fatigue, pain and weakness among other things would/will be awesome 😱 I know my response is quite lengthy but thanks for sharing and listening 😊🙏😊

erash profile image
erash in reply to Guava69

I love your reply (had me in tears) and I wish all of that for you from the bottom of my ❤️

Guava69 profile image
Guava69 in reply to erash

👍😀🙏😊

Mssailor profile image
Mssailor

My immediate answer is go skiing! I loved racing down a mountain on my skis. I have always been a bit of a klutz but persevering in learning to ski was one of my Joys of my younger healthier life.

But I dont want to complain since there is a lot I like about my life now.

agapepilgrim profile image
agapepilgrim

Go backpacking on the AT, then go to the beach and walk in the sand.

pamgarner profile image
pamgarner

take a walk.

TexasLawman profile image
TexasLawman

Join a baseball team then go rock climbing.

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