I tell you what., I am just so aggreviated., my mg expecially my ocular is been at its worse the last couple of weeks., we live about 1 hour away from relatives., and I try to explain my driving capabilities when my mg is bad, and my husband cannot drive and hasn't for years because of severe visual handicap., and when I try to explain this to people., expecially relative., you can just tell by the tone in their voice" yeah right she just doesn't want to come" I invite them here but you know how that goes., they act like this is nothing., and I mean nothing., I am upset enough becuase I could not do the things I normally do for th Holidays and then you get these inconsiderate............... I have had it...............I just want to tell them all what I feel................but, instead I think I will just scream eekkkkkkkkkkkkkkkkkkkkkk sorry for the scream.....
Thanks for letting me vent.

Indeed, Holidays can be stressful times in many families...even without any health considerations!

I am sorry things happened the way they did for your family. There is no 'perfect' solution. But you have to so what is best for you and your nuclear family. If extended family doesn't 'get it', unfortunately it is because they don't choose to.

And while frustrating, it doesn't mean they don't care or love. It is because they are blissfully ignorant of the health challenges many different people face. You know the old, 'Until you've walked in my shoes.....' Well, it is true.

Have Happy Holidays and wonderful New Year anyway! (And venting is one of the ways to make that happen!!)

Sue

I'm so sorry your relatives do not understand what you are dealing with. People can be so narrow-minded. If one of them is ever stricken with something like MG, they will be whistling another tune.

Try to let it not bother you (easier said than done, I know). Your health and well-being are what is important.

I'm sending you a because I understand what you are going through.

Wishing you improved symptoms in 2010.

Kathy

P.S. I too have ocular at this point which is the last thing to come back after my recent crisis and hospital stay.

I understand. My eyes have been sooo bad lately that I really don't do much anymore and this year was the first time in my 46 years that we didn't do Christmas. Mentally and physically I just wasn't up to it but I took away from it who cared for us and who just cared what kind of gifts would they get and I can tell you this.. Looks like only one family member will be remembered next year.

It is sad indeed when family doesn't understand but at least we have each other here!

Hey Nancy,

I know only too well what you are going through. It is so frustrating I know, but try to just shake it off if you can, because at this point there is nothing you can do to change it. The stress will only make you feel worse. Just concentrate and focus your energy on you and your loved ones...and enjoy the holidays. I'm glad you got to vent here!

Hugs,
Pat

I so understand. My extended family do not get it either. Normally we meet up and have the meal in middle of the day .... This suits me as I am not so tired and weak then. But one brother dictated the terms of when he was arriving and it was late afternoon so the whole meal thing was shifted to late. I knew this would be no good to me and said we could not get there and now the family think I am not trying hard enough.

I left presents and know which ones will be getting some next year. For several years now I give and give and they ignore ignore. Hubbie and I had a quiet meal at home - nice tasty soft risotto type meal that slips down my throat - and it was nice. But I will be the worst person for not going to their dinner.

I hope you can get them to understand.

Annie

It can be very hard to explain to others how this disease affects us. Most people have never heard of it, and don't really understand it even when you tell then about it. It is very frustrating, so go ahead and scream now and then. I do have one suggestion, however. Do you think it would help to send your relatives some articles or literature about MG so they can be better educated about it? Would they bother to read it? There's a fair amount of stuff online. Just a thought . . . I hope you have a Happy New Year.

I see it this way-

;iving with this illness 24 hours a day each day, it took me quite a few years to understand it, learn how to function with it, and lead a reasonable life with it, know when I really need help and when I can somehow manage on my own, and learn how to use proper tools and aids that make it easier for me (and it still don't fully, and probably never will).

so, it is quite reasonable that it will take others much, much longer, as they don't experience it themselves and only see a glimpse of it every now and then.

getting over the psychological barrier of using a wheelchair took me a very long time, and only after I realized that I was gradually giving up so many things that I love, because I couldn't get there. being able to see the Tate gallery of modern art in London after three years of seeing one picture at the most in a musuem, or not going there at all (and I love musuems), made me understand that not being able to admit my dissability makes me pay an enormous price.

it took my mother more then a year to accept my wheelchair, after I was using it on a regular basis, and to understand that my inability to walk any reasonable distance, was not because I didn't do any excercise. to understand that although I was not paralyzed and could walk a few meters, it was impossible for me to walk more then that.

my husband, still comes and tells me that I have to get up and get dressed, because we are going to be late, even though he knows that if I am lying in bed using my respirator, I can't just get up because I want to do so. and it may take an hour or more, and we may be late, or possibly I will be unable to go at all. but even I sometimes forget that, so how can I expect him to remember all the time?

it is very hard to understand this illness. many times it really looks like "faking" . sometimes even you are not sure what your true abilities are at a given moment. maybe you could do more, if you only tried? maybe if you did more you would crash, and not even be able to do the little you were doing? maybe if you talk with your niece that you love so much, you will not be able to eat dinner. but then if you don't talk with her, how are you going to enjoy this nice family dinner?

this is just the way this illness is. and nothing we can do about it, except trying to learn to live with it in the best possible way, and help those around us, see us as we really are. and accept the fact that it is not always possible what ever we do.

from my experience, metaphors can be helpful, but sometimes are just annoying, and my husband sometimes gets angry, and says to me- stop talking about boats and swimming and all this nuinsance and just explain to me how you feel. and sometimes it does work better, just saying it very simple- I have an illness that causes my muscles to become weaker with repeat efforts, and that's why I can walk a short distance, but no more then that. I can eat the first course, but find it hard to eat the second etc. I know it's really hard to understand. it was hard for me as well, and I know it may appear as if I am just putting on a show, but that's the way this illness is.

alice

I know it is hard for people to understand , I don't know sometimes whether to push myself or not., I am afraid of the unknown I guess.
This past two weeks my ocular has progressed tremendously eyes very drooppy and the aching behind them and around them., I even noticed my facial muscles on one side drooping.,, What is next I ask myself., sometimes I wonder if this ache and pain is from MG or not? I know it is hard for others to understand but sometimes they don't even try.