This Is MS Multiple Sclerosis Community: Knowledge & Support

I have seemed to have a lot of frustrations with my family and friends as of late. I try so hard to get them to understand how I'm feeling and what I can, or can't do. They still see me get up every day, go to work, and i still try to maintain avery plesant aditude. But when I can't do things (ie: run over and help them with an errand, or go out for a night on the town), they just get extremely bitchy at me, almost as if I'm faking the whole thing. It just brings me down.

My dad wants to take me to Disney World in December of this year. Part of me would love to go, but I know I can't walk all around, nor can I be too far from a bathroom, as my bladder has a mind of it own. Plus, theres the whole heat issue! When I tried to explain this to him, his response was, "We'll just get you a wheelchar and push you all around! You can get to the front of the line if you have a wheelchair!". He just didn't understand at all.

Have you experienced family/friend issues like this? How did you make them understand when you were first diagnosed? I try so hard to explain, but they are begining to think its a reflection on them and that I'm just making excuses for not wanting to hang out. Ahhhh, life with the MonSter SUCKS!

hey,
no need to wrry i have had the same problems with some of my family and friends...my ex husband is a great example he is always complaining when i am running behind or have a hard tiem following a conversation when i am really tired..he always is ranting and raving..my kids are wonderful they help even thou they dont truely understand...but you will find people who are your friends and family who wont understand no matter what..heck i even tried to make my ex understand better by getting him information on the disease and stuff..his response was i dont need to know about it dont affect me..well he is wrong..some just dont understand cause they choose not to...others dont understand cause they just dont understand the disease and how it affects you..maybe try and give them some information about it,,,,my boyfriend went on line and got information for himself and it helps me greatly cause sometimes i dont realize how tired i am..but he has got to know the sights..so hopefully it this will help...if not you can always just come on here and talk with us..need to vent ya can pm me anytime...

chris

The last time I went to Europe, my boyfriend said ' We'll rent a whellchair to get around Paris' . Well, I started to cry. I only use a cane when my leg feels tired.
He didn't understand my reaction and I didn't understand his point of view. He knew darn well that I would see more things if I was in the chair sometimes. During the trip, I realised that he was so right. We also used that chair to carry our lunches and bottles of wine and... I did see more of Paris than I would have with just a cane.
So, really, maybe you can look at it the other way. ( that is if you want to go at all, if you simply don't want to go, than just say so, in a nice way )
But if this is a chance in a lifetime, maybe there are ways to get aroung your darn bladder etc. you know Depens and Poise. Plus, look for the shade always and you may just enjoy it... this is just my point of you.
I always want to do as much as I can with what I have. Take good care . Carolew

i agree with carolew... don't let ms stop you from going and enjoying yourself, i took my daughter to sydney at christmas and admit i was scared but i had a great time - even if i had to use my walking stick -
going for this holiday was the best thing i ever did, i managed to get around, and i always was aware of the closest toilet in case of emergencys and on the hot days well i had a cold pack and plenty of cold drink and i sat down a lot to rest

i know it is frustrating for you that your family can't understand how you are feeling but i am sure they are doing the best... i know my family tell me they can't begin to understand what i am going through, and i don't think anyone can unless they have ms themselves.

sometimes i think my family can be in denial, just as i was when i first was diagnosed... we can only keep educating them i guess

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Mags

My kids told me 'mom, if we treat you like a handicapped person, you will be even more handicapped' . I agree but , some days, I wish they helped more around the house!!!!

Hi All
I guess it is really hard to find the right things to say to a child. I am really glad that I don't have any kids right now because I really was a wreck when I was Dx and I am sure I would have caused some psychological damage to my kids. I have been pretty lucky to have a family that is willing to listen to how I feel. I have to agree with the fact that people who do not have MS will never be able to fully understand what it's like to have it. One day my fiance and I were talking and I felt like he just had no clue and told him so. HE then said "then make me understand how it is." He was willing to listen and now I tell him everything that I feel and fear. I would say he knows 99% about how it is to have MS. My older brother who was very supportive in the beginning though is a different story. He just tells me to get over it and get on with my life because there is nothing wrong with me yet. I am sure he means well and I know that he just feels bad when I cry or whatever but it's just not that easy to get on with my life. That's what sucks...people see that you are up and walking and they think you should be happy about that and live your life. I totally agree with that. Right now, I have a lot to be thankful for. It is very hard for people to see the fears that we live with. At times the fear is more crippling than the disease itself. It was for me. What I wanted to say was that I find, in my family anyways, the more I tell them about exactly how I feel or what I can do, the more they are able to understand me. Of course, you have to a family that is willing to sit there, listen and remember what you are saying. It takes time. I know there were times I didn't even know what I was feeling so it was kind of hard to make anyone else understand.
NN

my daughter is only 9 years old and i haven't told her yet exactly what is wrong with me. i am scared that if i tell her, her reaction will be that i am really sick and she will end up with the same fears as i have. my fear of what will happen to me in the future - i cry when she is asleep and put a happy face on when she is around. she understands that my nerves are doing silly things and she is often telling me off for not taking my walking stick (which i just can't get used to using). and she is very understanding of my need to be aware of where toilets are located and my hurry to get to them sometimes. she does not understand though the tiredness i feel, which is so upsetting for me as i feel bad for not always having the energy to do things with her.

the rest of my family are wonderful i have to say... although they do worry so much and try so hard to understand my "down" times. they do their best and i am grateful for that.

my sister - well she is an interesting one - for the most of my life (since i was 17) she believed i was faking my illness and told me to get over it and stop faking. when i was finally diagnosed she said "about time they found something wrong with you" and is now trying to understand and worries for real now kinda nice that she tries.

in the meantime it is smile for my daughter and "grieve" when she is away for the weekend

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Mags

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I KNOW WHAT YA ARE FEELING THERE..I HAVE 5 KIDS TWO WHO I DONT GET TO SEE VERY OFTEN DUE TO THE FACT THEY GO TO SCHOOL IN ANOTHER STATE...THE DR I HAVE HAS REALIZED I WANT THE TRUTH VERY BLUNT AND TO THE POINT SO I KNOW WHERE I STAND WITH MY FIGHT..NOW WITH THE THREE YOUNGEST ONES I HAVE AND MY OLDEST TWO I HAVE STARTED A MEMORY BOOK FOR THEM WITH ALL SORTS OF STUFF I KNOW THEY WILL WANT TO HEAR AND REMEMBER WHEN THEY GET OLDER..I WAS FEARFUL CAUSE I DIDNT WANT TO BE THERE FORGETING THINGS THAT I WOULD FIND FUNNY OR IMPORTANT FOR THEM TO REMEMBER WHEN THEY GET OLDER..SOOO I WRITE THIS FOR THEM AND I ADD ALL THE SILLY AND FUNNY THINGS THAT HAVE HAPENED IN THEIR LIFE TIME WHY I AM DOING THE MEMORY BOOK AND EXPLAINING TO THEM HOW IMPORTANT THEY ARE TO ME AND ME FIGHTING THIS THING I HAVE...THEY ARE THE ONES WHO GET ME THRU EVERYTHING EVEN WHEN THEY ARENT THERE..WHEN THEY ARENT THERE I THINK OF ALL THE SILLY THINGS THEY HAVE DONE IN THE LAST WEEK AND THAT HELPS ME OUT...MY YOUNGEST ONE WHEN MY TREMORS COME TELLS ME THAT MY MUSCLES ARE DOING A LITTLE DANCE CAUSE THEY ARE SOO HAPPY...SO INSTEAD OF GETTING FRUSTRATED WITH THE TREMORS NOW EVEN WHEN HE ISNT WITH ME I THINK OF THAT COMMENT AND I RELAX AND TAKE THE TREMORS WITHOUT GETTING UPSET...JUST KEEP YOUR DAUGHTER UP FRONT AND IN FOCUS WITH THIS AND YOU WILL BE SURPIRED ON HOW THEY ARE THE ONES WHO KNOW MORE THEN THEY LET ON AND HELP OUT MORE THEN THEY WILL EVER KNOW....

CHRIS

very good suggestion... Carolew