Gonna try this, maybe
 

You know how you tell people you can't do this or that, or go someplace, and their eyes glaze over when you try to explain: "Well, I have this crushing fatigue, see, and the seats make my legs spasm, and I never know when I'm going to lose control of my body functions and there might be somebody in the one bathroom, and all the noise and lights boggle my brain, and....."

Or else they try to "help" with advice or well-intentioned offers, when they don't really understand the problem? As in, "Well, we can come pick you up, then you won't have to drive". Or whatever.

Well, yes, sometimes you just don't tell them anything, say pooey on them, and just stay home. But I think I'm going to try something, especially on "certain" people:

When I've said "No, I can't" and it's the natural time for an explanation, I think I'll just get sort of a semi-kind, semi-patronizing expression on my face, maybe pat the person's arm and gently, in a vague sort of way, say, "It's an MS thing. You......wouldn't understand."

Then either change the subject or just walk (hobble) away. What do you think? I win and they lose. If it works out right.

Maybe for certain people...... but..... well.... I would be hesitant that they'd never invite you out again.

Why not just stop at "no, I can't" and if you offer any explanation, just add "this time. Thanks anyway!" to the end of it. :o

I think it would depend on who it is. If it's someone you knew fairly well and who knew your situation it might hurt their feelings. If it's just an acquaintance who doesn't know you well at all it might work.

I don't know why but I always feel the need to explain myself. I'm trying really hard to break this habit because a simple "no, thank you" should suffice. I think it's rude of people to keep on and not take that for an answer. Plus, if you wanted them to know your reasons you'd tell them. Some people just feel entitled to know everything.....:rolleyes:

I understand what you mean, though.

I agree with Gazelle and Kitty that I think it really depends on the person you are saying it to as to whether they will understand or not.

If I tell my mum that I don't feel like going out, she will understand as she has read up the symptoms of RSD (which is similar to MS) and spoken to people that have it and spoken to my doctor about how the condition affects me on a daily basis. If I say that I don't feel like going out to my dad or another family that doesn't "get it" and understand, they sometimes take things the wrong way and think that I am just being awkward and I often get told "If I just got out more", I would feel better - yeah right!! Me and my dad and certain other family members have actually fallen out over me not going out as they just don't understand how bad I feel at times and sometimes they try and force me to get out when I can barley walk!

I think it would really depend on who you were saying this to as to whether or not they would take it the wrong way or understand. Some people, even though they don't understand what we are going through, actually want to listen to what we say and how we feel whilst others may take it the wrong way and like Gazelle said, they might not invite you out the next time or they might not understand how one day you can feel like going out and the next, you could be laid up in bed.

I see your point though - people just don't "get it"!:hug:

I say go for it, while I also agree with Gaz. and Kitty and Ali ... all depends on the specific person.

Once in a great while, I'll be standing around with a group of moms, waiting for something... and the talk of great woes of hurts and illnesses go on and on... when it gets to be too much, and I'm tired of nodding along I'll pipe up (in a small voice) and say something like... 'well, i'm glad they have a cure for that, cause they don't for me' ... and go on to say, 'I have a disease that doesn't have a cure because they don't know the cause. I have MS.'

And then walk away :)

Niko:cool:

I just wish people would take my reasons for what they're worth and not feel like they're entitled to a detailed explanation. I'm an adult....I can decide for myself if I feel like doing something or going somewhere. I don't need to hear "well, I'm tired, too" or how going somewhere will make me feel better. If that worked I'd be going somewhere all the time! :rolleyes:

I think people mean well.......but those that don't have MS truly, truly do not get it. I don't have arthritis and don't presume to know how someone with it feels. If they tell me they can't do something I take that and don't push it any farther. Who am I to say what they can and can't do (comfortably).

Very well said Niko!!

When I hear people moan about how they have fallen down and broken their wrist and how bad the pain is, I just feel like yelling at them and saying "Well at least with a cast or an operation, you will be better and able to lead a normal life, myself and others with the same illness as me will probably never be able to"!! It really frustrates me and makes me so mad but I never say anything - I am one of those people that just keeps everything hidden away inside until I explode!!

Thank you for posting this - it really helped me realise that it isn't just me who feels the same way!!

Long before MS I realized that I don't really owe anyone an explanation for anything. Unless its my closest friends/family who are allowed to be a bit more obnoxious and I will tell them to **** off, lol, a pleasant 'No thank you' should suffice.

Some of you may remember the book The Gift of Fear that was featured on Oprah years back. It kind of reinforced this. When someone is pushy with me it really makes me take pause and put the brakes on.

Well, that was about 95% tongue-in-cheek. My mama didn't raise me to be rude and careless about people's feelings, even if they deserve it!

As I said, it would be reserved for those "special" people who think they are entitled to an explanation, than proceed to tell me what I SHOULD be doing ("It isn't good for you to stay home all the time") or tell me they know EXACTLY how I feel, right before they start trying to raise the symptom ante, etc.

Mostly I either try to explain to those who really care and want to know, or just say "Sorry, thanks anyway" to the rest. But there are a couple of people I really, really want to use my new theory on.

I think what your plan to do is fine. If it hurts their feelings then they really don't know you do they?

Even as a caregiver I have a similar problem. People think I am superwoman at times and that frustrates me. Explaining the why is always brought back with a comment like "Girl's night out!" or "Come on, you need to get out and take time for yourself" or Can't Jim stay alone and you get out for a couple of hours?" Stuff like that. But many times it's just because I am tired and don't feel like going out. I am grateful to be asked but people don't get it sometimes. Only my true close friends and family get it and honestly that's all that matters to me.

I understood that, B2, no problem. ;) There ARE those who would be lovely to try that on.

Maybe you should try the, "You're right. I shouldn't stay home all the time. It's so much more fun when I go out and collapse in public. After all, who doesn't love an ambulance ride. What I really didn't want to tell you was that I can't go because I've been taking a surgery course by mail and tonight's my first test. I'm doing a hernia operation on myself. If you like, you can help."

Or the, " Wow, that's terrible!!:eek::eek::eek: I never realized that you felt like that. After you telling me this, I don't think you should go out to do what you're saying we should do. I'd feel horrible to know that you were in so much distress because you wanted me to go out with you."


:D:D:D

I've even tried the "answer their question with a question" routine. Like, "why do you need to know?" or "why do you ask?". If you can survive the awkward silence that follows that will usually solve the whole problem. I don't like situations like that so I don't use that tactic too often.

But, like Sandy said, those that I really care about know me and my situation and don't hold it against me if I choose not to go out. Those who do......well, I haven't lost anything.

LOL, Blessings. That could work on certain busybody peeps.:D

My problem is that, my family and friends think I need to get out more. They're right, I do and usually feel good when I do get out, if only to the Doc's.:rolleyes:

I wish it weren't soooooo much trouble and soooo much prep., just to go out..:mad: I have explained to my loved ones that I am perfectly content to stay at home but don't quit asking and don't quit coming to see me (call first 'cause I don't always want to see you..:D)

I get a few invitations from friends of old, who don't understand, but I can't help that.:(

My family knows by now I have lots of problems so they come see me instead.

I have neighbors that have asked me to go out to do this or that for a few hours and ask why not. Well a few hours w/o a bathroom would be a huge problem plus if the seat in the car is too high or low that's another problem.

I just have to tell them I don't travel well anymore and look sorry - and I'm telling the truth mostly.

I agree with saying, "It's an MS thing. You......wouldn't understand."...but then after you say it hand them a cookie:winky:

I'm not giving up my cookies. :D

Tell them that HIPPA said you didn't need to. lol A supervisor I told I was ill and wouldn't be in for work was rude once.
She demanded to know why I was sick...I told her according to HIPPA...that's all she needs to know that I am too ill to come to work.

I tell my SIL that a lot if she asks how I'm feeling...HIPPA says I don't have to tell ya...of course she know its the 'joke'.

Still, sometimes it would be nice just to tell them exactly why you don't feel like doing something.

LOL...no don't give up the chocolate chocolate chip ones.

Well, it was kinda fun to play out the scenario in my mind, even if I'd probably never actually do that. Trust me, if you knew the people I have in mind, you'd enjoy the fantasy also.

Now if you'll excuse me, I'm going to go have another cookie and pray about my mean streak.