This Is MS Multiple Sclerosis Community: Knowledge & Support

So i've been fighting with my friends all weekend... which is never good.

I've been exhausted for the last 3 weeks and this weekend i really just wanted to sleep in and lounge on the couch watching a movie/napping.

My roomate just stated to me that i'm being lazy and that i should get up and go outside... and when i try to explain to him about being this tired... he just doesn't get it. 2 of my friends wanted me to meet them for breakfast yesterday than go to yoga... but again... i'm just too darn tired and I declined. They were a little miffed at my response.

People just don't get it. I'm sure you all do though (thank goodness for these boards)

I faced that, not for MS but i understands you ...
If i had a dam plug i could plug onto the others and they feel how i am ... i would do it!
For example i have Tinnitus for years. Drives you crazy ... peoples don't understand.
One day i reproduce this damn hissing noise with my computer.
Call one of my friend and plug the headphone on his ears.
They i said "you're will be with this dam things for the rest of your life!"
The guy stay only 2 minute with the headphone ... then he went crazy and remove it!"
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The only way i found is ... ignore what others say, think about you. Forget about them. Don't try to explain ... they will not understand, they don't have the things!
Just say in your head ... pfffff .. you DON'T CARE!
Just live YOUR life.
I'm alway better in the wood ....

Take care.

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My story
http://www.thisisms.com/ftopict-6956.html

I'm sorry, you are right! They don't can't and won't understand. It is impossible for them to know what it would be like to walk in these shoes.

Even people really close can't understand. It is one of the hardest parts.

But you do need your rest. I feel one of the worst things for me all along has been lack of decent rest and my consistent habit of beig type A personality and doing everything to the nth degree, never moderating my activities etc. You have to get your rest and work WITH your body...(.you also need exercise but that's another lecture )

And no, that is not "giving up" as some people may try to say, it is using judgement.

That's a hard one, and one we all deal with unless we are visibly disabled. I'm going to cuss here, but fuck 'em. Not in a spiteful, active way, but like Pinpricks said. Ignore that. You have to come first when it comes to stuff like that. However, there have been times that I wouldn't have had the motivation to do something, and then did it begrudgingly and found out that it was good for me to get out and do something. But if it's to the point where it's exhausting you, take care of yourself. You'll have to learn to recognize those times when you don't feel like it but know you should vs. those times when you really should rest.

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

Meegs,

I hate that others without MS think we are lazy. I guess they will never understand and we just have to live our lives the best we can. Take care of yourself first.

CF

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Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.

Do you also notice that when you complain about one of your symptoms acting up there is always someone that says "I know what you mean, I have that too"? And this is from people who know I have MS like close family members and friends. I want to scream at them "YOU HAVE NO IDEA WHAT I AM GOING THROUGH!!" but of course I don't. I know that they don't understand and they can't no matter how empathetic they are. Unfortunately you have to have MS to understand what if feels like and I wouldn't wish that on anyone.

scooby,

Last weekend my youngest son who is 27 closed on his first home and me and my husband drove 4 hours to help do some demo on the bathrooms and kitchen.

I worked my butt off and was exhausted but it felt so good to do all these things. I love to break and smash things. Demo is the best part of a job. Especially since being off the REBIF

Well my son was coming down with a bug and was complaining about how he felt, "do I have fever, I am achey, I have the chills" Being that if I complained about my MS like that no one would even listen to me. So I try never to complain about it. I just looked at him and said "yeah you should have some MS to go with that". I think I may have hurt his feelings and I hate that. But oh well, he's a big boy and can't handle it. He loves me inspite of my MS.

CF

_________________
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.

Meegs
it's a really tough one to manage. I have lost many friends over the last 10 years. I think they feel you can't be bothered with them.
But the truth is they can't be bothered to really listen to you and try to understand what you're going through.

Many friends are only friends for the time that you can share social lives with them, and if you can't, or if you develop limitations in particpating in that shared experience, the friendship does not survive.

I have learnt that the more embarassed and ill at ease you are about saying you need a rest, the more the friends think you're putting it on or exagerrating your fatigue. If you're matter of fact, certain of your need to rest and your limitations that inner confidence somehow reduces misunderstandings.
Stick to your guns, get your rest, and don't apologise for it.

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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.

My experience is that my friends are in denial...they cannot accept that their friend who was once strong and a go getter is now quieter and sedate...I will talk w/them on the phone and I will have to remind them of my condition. This is the same w/ my family. Yes I gues your true friends will sick it out w/you and the others will fade away. (not that I had a ton of friends as i did when i was younger anyway. Being older seems to weed out alot of the misfits.) I just try to maintain a support system some only know me having MS.

Make new friends but keep the old...One is silver and the other gold.

CF, I too rarely complain anymore to my family or friends. It either scares them or I get the reactions that annoy me. I can't completely explain to them what I'm feeling anyway so it just frustrates me to even try.

I totally agree with WW that most people can't be bothered to really listen to you and try to understand what you're going through. The friends and family that do stick around and try are the only ones I care to deal with. My fair-weather friends are long gone. I just don't have the patience or strength to deal with them. Life is much too short.
Judie

Scoobyjude wrote: CF, I too rarely complain anymore to my family or friends. It either scares them or I get the reactions that annoy me. I can't completely explain to them what I'm feeling anyway so it just frustrates me to even try.


Scoobyjude - I feel and do the same thing.

I think we all eventually come to that peekaboo and that's why it's great we have this forum to talk to people who do understand.

Hi.

Same problems here, too. I have been given many names: quitter, lazy, doing bad to myself etc. But I have decided not to try and change them but give up life as a whole, since I can hardly do anything. A condition called "emotional suicide", just like committing suicide without killing yourself.

I have asked for professional support for that with mixed results. I am very disappointed to find out that these super specialists only want to teach me how to have a good mood. A happy 28 yo disabled person? That is oxymoron. All I care about is to survive until the grave. Unfortunately, it does not seem close.

Remember, that the attitude of the society will always be from neutral, at best, to negative.

sou

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Shortest joke: "We may not be able to cure MS but we can manage its symptoms."

Sou, my heart goes out to you. I hope that you can find some real help because emotional suicide does not sound like a healthy answer. I am not in your situation and I don't know what you are going through but we are all here when you need to talk