I am disabled & I manage: I walk funny I... - My MSAA Community

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I am disabled & I manage

RoyceNewton profile image
β€’28 Replies

I walk funny I stumble I can not run. You may think me drunk at 10am. I may ask somebody to find something at the store. Most people will and I will very quickly say, "thanks, I cannot see very well today or I am feeling very wobbly I do not know why". I really do wish I was drunk it would give me a reason for being this crappy.

ms as much as anything is management game. Everything and everybody gets to be considered. Do I care if you think I am drunk, do I really want to strain to see a a label or do I just want to ask for help?

How you decide to play your management game is up to you. You are allowed to change your style whenever u want but you must always be aware that actions have consequences. Be prepared to humble yourself occasionally but always be true to you because at 2 am it is you that you have to face so be proud of what you have done and what you are doing. Accept your weaknesses, your faults & be proud of your failings. Sounds silly, but you tried, you failed but tomorrow you might again. Maybe not, tomorrow is another day.

Just be kind to yourself and if you get a chance to others. That really would be nice. By the way it really does get different, maybe not easier but differnt and you have it within you to cope& succeed . Take it slowly and let yourself succeed.

Royce

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RoyceNewton profile image
RoyceNewton
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28 Replies
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jimeka profile image
jimeka

Well said Royce, blessings Jimeka πŸ¦‹ 🍫

RoyceNewton profile image
RoyceNewtonβ€’ in reply tojimeka

u must read me :-) thanks glad somebody does :-)

Doubled51 profile image
Doubled51

Very good advice for us all.

Donnie

RoyceNewton profile image
RoyceNewtonβ€’ in reply toDoubled51

thanks

Jazzyinco profile image
Jazzyinco

Allwayz loving ur great encouragement stories!! They R GR8!!!πŸ’πŸŒΉπŸŒžπŸ˜πŸ˜πŸ˜» Blessings---Jazzyinco

RoyceNewton profile image
RoyceNewtonβ€’ in reply toJazzyinco

thanks

Kenu profile image
Kenu

Thanks again πŸ™ Was a good read πŸ‘. πŸΎπŸ˜‰ Ken

RoyceNewton profile image
RoyceNewtonβ€’ in reply toKenu

thanks

MarkUpnorth profile image
MarkUpnorth

Royce, at one point in my journey with MS, I made up a t-shirt, I'm not drunk, it's just M.S. No bar tabs necessary! Then I decided to try drinking! Funny thing, this then non-drinker became balance sober with a couple drinks? Still do. I walk with a cane full time, for balance. But with a couple drinks, I walk like I did my pre-M.S. days! Can't figure that one.

And yes, this once always very rigid buisnesslike person has turned caring to everyone chatty, and love it. I've made casual friends out of so many people by simply being truly nice and concerned about these otherwise strangers. They now always return the same. Gimp or not.

And back to drunk, which I don't think I could again, not that I'd go there again since my school days, It's the only time I can pass my old Neuro's balance test of standing on 1 foot with your eyes closed test without waivering or falling!?! It's the only time I'm rock solid stable. The rest, so what! You fit in passing through drunkards neighborhoods in the city!

CalfeeChick profile image
CalfeeChickCommunityAmbassadorβ€’ in reply toMarkUpnorth

MarkUpnorth I use a cane whenever I go off of my property, I used to tell myself it was just in case I needed it. Now I know I need it to stay steady on my feet. My balance is really "Wonky" later in the day, I tell myself I would love to have a drink or two. One of my medications says no alcohol, it could cause a reaction and make you sick as in throwing up.. Sure don't want to encourage that. Right now it's dinner time and a margarita and some Mexican food sounds really good.. I wonder what a margarita without Patron would taste like??? I'll let you know if I try it..

Crookedline profile image
Crookedline

Sounds like you walk like I do, awkwardly, bumbling, veering unexpectedly to one side or the other. In a word it’s embarassing and made worse by alcohol (or I’d drink more). At least we’re still alive and able to do things! One downer is inability to travel as much. Hang in there, man. Working out seems to help, but I certainly do tire more easily.

CraigS profile image
CraigS

I think the 10 am drunk walk is inevitable. I used to take offense at the stares, and felt like I had to explain. Not any more. I don’t know when it changed or why, but I’m much more at ease with my plight.

It still sucks, but much less so when you eliminate the public opinion part.

I haven’t tried actually drinking to straighten out my walk, but that might be fun!

Ahh! The joy of it all.

twooldcrows profile image
twooldcrows

you really told the story of my life and yes it does change and we can have a good laugh at our selves on some events and it helps others around you to help them to cope also with us ...love it and ha we have the same last name ...too funny....

RoyceNewton profile image
RoyceNewtonβ€’ in reply totwooldcrows

got laugh at something, thanks

Ikeeptrying profile image
Ikeeptrying

Royce, thank you so much. I needed to read something like this today. I have SPMS and it seems everyday I'm worse. I know I'm not alone but sometimes that doesn't help. I get weepy and afraid. But I'll just keep on doing my best. I wish I had a support group but this site is the next best thing. I just don't know how everybody stays so strong.

Marilyn

KC0808 profile image
KC0808β€’ in reply toIkeeptrying

Sweet Marilyn you are definitely not alone I also have SPMS and lately I feel the MS is progressing too rapidly. One of the best things to happen was finding this site with all the incredible MS fighters who have taught me more about MS than my Neuro. When your feeling down this is the place to get a boost and then give someone else a boost it is a win win for all.

Wishing you the very best.

Take Care of You :)

KC

Ikeeptrying profile image
Ikeeptryingβ€’ in reply toKC0808

Thank you for your encouragement.

It's 3:58 am and my legs have broken through. I'm trying to type but the double vision is crazy. I don't know why I have to have SPMS and restless legs to boot. They say my double vision is not the result of MS but they have no explanation. Old age maybe? I'm so tired. Maybe I'll kick my legs and they'll stop. Sorry for this depressing post. I'm going to write to my neuro now, like that'll help, not. Thank god for this site. Feel less alone. Ma rilyn

RoyceNewton profile image
RoyceNewtonβ€’ in reply toIkeeptrying

You are never alone, I am sure somebody somewhere will see you and say HI, HI by the way have a nice day.

β€’ in reply toIkeeptrying

Hi, I am Linda. I have ms 19 years. Now I have advanced active spms. Each day is unique to say the least. If you don't mind would you let me know what symptoms you have? There is always a chance I could contribute something to you that will help you feel better. Or we could just chat. Good night and God Bless.

RoyceNewton profile image
RoyceNewtonβ€’ in reply to

Hi sorry I missed your message, very nice of you to offer assistance but after twenty plus years I have it under control as much as anybody can. That is until the next surprise, which I am pretty sure id coming one of these days. Symptoms are mostly Trigemminal Neuralgia and the side effects from surgeries to fix that.

Again thank you for the offer

Feel free to use the chat function then we can talk non msg board

Royce

RoyceNewton profile image
RoyceNewton

I will try & keep it up for you, and everybody else that needs a little something extra, occasionally.

twooldcrows profile image
twooldcrows

i even carry a card with something of this nature it came from MS ..saying i may look and appear drunk but it is from the ms...hahhhah...

RoyceNewton profile image
RoyceNewtonβ€’ in reply totwooldcrows

very good idea

Jesuslover69 profile image
Jesuslover69

You ARE OBVIOUSLY, going to have a good life,not because of your disease, but your attitude. As Abe Lincoln once said, People are only going to be about as happy as THEY CHOOSE. We can't always choose what haappens to us, BUT WE ARE THE ONES WHO DECIDE FOR OURSELVES WHAT WE ARE GOING TO DO ABOUT IT! IFf we want, we can choose to have ourselves a big old self-pity party; That choice won't help us but it will probably hurt us. Why waste our limited energy feeling sorry for ourselves. A better choice would be to ccept the fact that "It is what it is" an del with it! If you wnt a career, but aren't physiclly able to continue the one you time finding a parking spot( hd, seek opprtunities to tran for something that you can do! When you need ssistance, don't let pride stop you from ccepting the help of people who offer it. I find that when I'm shopping, I don't usually hve to sk someone for help. People see that I have brces on my legs nd usully offer me assistance. I'm not offended by it I smile, and say "Thank You! " Whenever I'm i place where I se tht I cn help someone with something, I do it. We cn be Blessed y the goodness of others, and we ca n bea blessing to others.

RoyceNewton profile image
RoyceNewtonβ€’ in reply toJesuslover69

some kindness and civility goes a long way

Humbrd profile image
Humbrdβ€’ in reply toJesuslover69

Well said, thanks 🌸

YLGram profile image
YLGram

So well said. Just when I think I got a handle on this(MS) it changesAGAIN. 29+ years into it and no two months, days have been the same. Like life it's self, it is a journey not a destination.πŸ˜€

Humbrd profile image
Humbrd

Thank you, I needed to read that. πŸ™

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