I've had bilateral MM for at least 25 years & I find my DH still does not understand anything about it. Yesterday I was to be at a social gathering. While preparing to get dressed I started having blurred vision & couldn't keep my balance, almost fell several times. I was so fatigued I could hardly lift my arms or walk so I knew I would not be in any shape to socialize. I knew it would have been a disaster to try riding in a car. I never had the room spinning just a falling sensation but I finally told my husband I was not going. His reply was, "you'll feel better in a few minutes". I knew that would not happen since it always takes a few days to be regain balance & strength. I'm finding unless you have MM you can't understand how stressful it is, or people just don't care. What is the best way to handle these situation without everyone think I am a total wimp. Maybe I am but I know my limits.
I've come to the conclusion that unless someone has actually experienced this, they just don't understand, no matter how much they might care. I deal with this with my husband, too, although he is getting better. I have no doubt that he cares but he has no clue as to what I'm really dealing with. I do what I need to do to take care of myself and if that means declining to do something, or bowing out of something at the last minute, so be it. I learned a long time ago to not push myself to do more than I feel I can do, because if I do, I will only end up feeling even worse.
Verti, my heart breaks for you. My advice would be to take your husband with you on your next visit to your Oto and have the doctor speak with your husband and let him hear it from your doctors mouth just how crippling and disabling this shit can be. I often find when a dr says it people tend to listen. PS.....I always tell my wife your good good friends will come get you out of jail at 3 in the morning, your best friend says “man that was fun we should do it again sometime.” I’m so glad I married my best friend. Lol ❤️ ((((((Hugs Verti))))))
I've given up trying to relate it. If I don't feel good, I just say go have a good time, I'm not feeling well. If they still don't get it, I tell them to go away. The next step is to puke on em. That will get them 100% of the time.
I agree! When your friends hear the puking going on, you get a little sympathy, if not full understanding!
Maybe your husband could video you crawling on your hands and knees towards the bathroom floor. Just kidding of course....but we all suffer from a syndrome that doesn't always show on the outside....like when my son was in elementary school and he had a severe learning disability and I had someone say to me " he doesn't look disabled." WTF??? I know how you are feeling. Do the best you can and try not to stress over others not getting it because they never will! But everyone here does
I have been to the point of crawling to bathroom but I don't think he was home at the time. I am so glad I have a good support group. Thank you all.