Quote:
Originally Posted by Quandry
I have this friend that called me today and she told me all the things I needed to do to fix myself. She told me to quit eating fruit, wheat, sugar, and milk products. For some reason she thinks this will heal me. I don't touch any milk products any how, and I don't much crave sugar. I don't have celiac disease so I don't think I should cut out all wheat, and there is no logical reason that I can think of in cutting out fruit. She has some kind of autoimmune problem relating to her stomach and I think that she assumes all autoimmune diseases should be treated equal and with the same type of treatment. I know she is trying to help, but sometimes it's frustrating when people assume that I'll get better by changing my diet. She even suggested I quit taking Mestinon and I explained to her that Mestinon is helping me a lot. I've only recently started taking Mestinon and had to adjust the dose but now I'm doing things that I couldn't do for a long time, but I still have limitations and I need to figure out how far I can push myself.
I am overweight, but it's inflammation. My c reactive protein was high on my last test. I don't eat much at all and when I made an effort at taking an exercise class this past summer, I collapsed and couldn't move my lower body for a few minutes and my legs were extremely wobbly when I finally stood up.
Another friend thinks that I should be more active and can't understand why I'm not. People that know me, know that I've always been active, and now that I'm not they try to push me to do things that aren't best for me.
How do you all handle it when people want to fix you?
|
Quandry, I have had to bite my lip on many occasions following similar advice from well meaning friends. In the beginning when I didn't understand my condition so well, I would take them up on their advice, mainly because I wanted to be seen to be making an effort. I have even experienced close friends telling me to fight my 'negativity' as everyone feels tired from time to time (!) I've tried every exclusion diet and every supplement and complimentary medicine going and none of them made the slightest bit of difference. I went against my best instincts with exercise, the climax of which was being taken swimming only to collapse in the pool after 2 minutes and have to be pulled out.
The way I deal with it now is to understand that my friends suggestions come from a place of care and a frustration for your situation. People feel helpless when things don't show a marked improvement and only have their own logic to drawn on (that good exercise and good diet make improve your health). MG doesn't behave like this. It's difficult enough for somebody with MG to get their head around, let alone somebody who has no idea what it feels like.
You know your own body better than anyone else and only you will know what will make you better or not. Trust me, in the beginning I felt I needed to prove my point by taking them up on the offer so they could see what the results were. I did quite a lot of damage to myself in the process. Now I just take a deep breath and explain that I've tried it/it didn't work/ or why I don't feel it's appropriate for me. I tell them I appreciate their concern and thoughts and try to explain to them better how it is so they understand more.
It's a learning curve for everyone. We just have to be patient!
wild_cat