How do I tell people, what if they ask t... - My MSAA Community

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How do I tell people, what if they ask too much of me?​

RoyceNewton profile image
RoyceNewton

Somebody asked this of me, I do not remember who or where the post was. That is pretty typical, isn't it? ms is so annoying like that, I really should take better records and clearer notes. I know better but sometimes, well YOU know what I mean.

In our ms journey we always have to be selfish and look after number one. This NEVER EVER gives us an excuse to be rude, we are far better than that. But what can we do?

For myself, I use my scooter or a cane when it is convenient. I have still some silly pride that causes me to get myself in situations that I really should not get myself into. I try always to control a conversation and be polite. It costs me nothing and I can present my case in my words.

"hello Royce"?

"Hello ?, how are you today?"

whatever their answer is followed by an opportunity for me to say my condition is very odd. One minute good one minute bad and it just keeps changing. I am confused, but then so is everybody else, including my Neurologist. it is a very confusing illness. Just imagine all the roads in someplace and one random spot has potholes. They get fixed but that road is never the same again. That is us. So, unfortunately, I can never ever be 100% relied on, as hard as I will try, and I will try my best, always.

Be the first to admit your weakness. Show your strength by saying YOU will try, and leave yourself an out by saying how your illness and condition are so very variable, that as much as you want to help, but YOU may not be able to.

It all comes down to protecting your most important asset, YOU. it is rather a challenge and it really does change, but YOU really can find away through this maze that we call mslife.

Control your surroundings, manipulate and adjust yourself, always be, like BAMBOO, then come back stronger do not be rigid like old oak trees. Being rigid hurts.

Royce

Bending and flexing always.

27 Replies

It probably was me that asked!Yes, that one question.....One day I walked into the Humane Society and greeted all the workers.A good friend had said...how are ya? and I paused thinking what to say..she hit me on the shoulder and she said...Jackie, people mostly just ask that cause its polite but they really dont wanna know...I thought about that and many do care but I have shortened my theory...

RoyceNewton profile image
RoyceNewton in reply to jackiesj

Yes, maybe saying little is better at times.

My motto the recent years has become... (saw it on one of the posts on chronic coditions) saying yes to happiness means saying NO to people and situations that stress you out!!! I have run into repeated situations where a simple "I can't do that, im sorry, im not able" is not an acceptable answer to them. So i built my own internal big red panic button. Or like the easy button for staples store years ago. The big red button is directly wired into an eletronic lock on my Pandora's Box of MS symptoms and I go into significant details that people DO NOT really want to hear! It's been effective thus far. 😂🤣😂🤣

excellent choice

I really like this read, Royce 👍 Great post 👌🐾 Ken

RoyceNewton profile image
RoyceNewton in reply to Kenu

Thanks mate

RoyceNewton I never answer "how are you?" truthfully. If it's a really bad balance day I might say "a bit wobbly" and if I have a throbbing eye pain I might say "headache" but most of the time I just reply "fine." Maybe it's the people I know, but they don't really want to know. The forum is where I feel listened to, understood, freed of the social pressures to spare others the discomfort they might feel if I were to explain how MS requires daily struggle and effort, how MS flickers through my day like a bad electrical connection...sometimes sending messages and sometimes not.

RoyceNewton profile image
RoyceNewton in reply to goatgal

Understand your feelings way to well, unfortunately, but....

The casual "how are you doing?" is usually answered with a "I'm upright." and a chuckle. Friends know what I mean, strangers don't, but since I ended with a chuckle, it's all good.

RoyceNewton profile image
RoyceNewton in reply to LeannEHl

That is a good one.

If only I had someone who would ask. . . I used to say “I’m OK right now, but for the past week blah blah blah.” Well you don’t look sick. “I could show you my most recent MRI, if you like”, or “let’s trade MRIs and you can look great too.”

Peruzzot profile image
Peruzzot in reply to TracyBelle

Last person that told me that I didn't look sick...I was on my way out the door for another Dr appointment and had all of my medical records with me in rolling carry on luggage bag that was stuffed...I opened the front zipper and said would you like to read it all and then tell me I'm not sick? I was not in a good mood and was very snarky with everyone that crossed my path that day. I can laugh about it now.😊

of course, I do not look sick, perhaps you should tell me how I should look?

but you do look good dear, that is a compliment you know

thank you, of course I do not look sick, I spend a lot of time looking this good before I walk out my front door each day

I'm not the most social person - I go to work and come home (same before MS - I play well by myself), so I do not have alot of face to face interaction with other individuals. One good thing of MS that I can now say "No" if friends want to do something and not feel guilty,

You can always find at least one good thing if you try hard

Royce have you ever thought of writing a book? I'm new to MS (5/15/18) I always find your posts to be very helpful, direct and honest. Thank you for that.

maybe one day, not sure I am ready yet, thanks

My fiancé says when he takes me to doc apts - he tries to do as much as possible with me cuz he is not sure when he will get me out again.

But it never ends well and he still doesnt get it

that sounds like a nice thing to do.

Its torture believe me

okay fair enough

Fancy1959 profile image
Fancy1959CommunityAmbassador

Royce it's Fancy! I just stumbled upon your post since I wasn't very active in the last few months due to health problems. I've always found the best policy to be straightforward and honest. Don't beat around the bush don't him and haul just tell them that although you've done this type of activity in the past is beyond your capability at this point in your fight against this monster we call Ms. Tell them you're not comfortable because of your lack of strength or lack of balance, or even lack of stamina, whatever bothers you and gets in your way. I think most people respect you being upfront with them and letting him tell them no rather than having to pick you up off the ground when you attempt to do things Beyond your personal limitations due to your MS. Fancy.

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My simple answer would be "I'm doing good if not great."

Also, if someone asks too much of you, you could say, "Even though I love to do XYZ, kindly understand that my body would not co-operate to do XYZ."

WHen friends or family ask something of me, I come back with...if I am able or if I am up to it, or ask me 10 minutes beforehand as I may feel different.

not bad answer

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