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?

There was a recent thread on similar issue with some very good answers, ideas. It had to be within last few months.

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

I assume you are still in the early days of your illness.

MG is a very confusing and hard to understand disease and those around us really mean well and want us to do better.

Some of their advise is useful, some of it is annoying, some is counterproductive and some is neither.

As time passes, it will get less bothersome.

Most of those around me no longer give me such advise.

And if they do, it doesn't bother me as much as it did before. I know they mean well, I know they have very little knowledge regarding my illness, my team of physicians etc. and I just politely explain it to them.

As always, well said alice.

I have come to realize that some friends and family will either research my illnesses or will listen to me when I try to explain what I'm going through. Then I have one friend who seems to believe that all I have is a bad cold and I just need to buck it up and have a better attitude. It is obvious that she has never taken a minute to research my illness or listen to me explain what I am going through. But she has breast cancer and has melanoma and that is much worse than what I'm going through.

It's very frustrating to get someone to understand if they think they know it all. I try to distance myself from those people because dealing with my life in my own way is the only thing that matters.

Best of luck dealing with the uneducated.

Becky
Southern Bell

I tell people that I need to do a lot of very unhealthy things to be healthy. I say it with a big half smile (only one side of my mouth is weak). When I am with family, they tell the visitor I have strange or alien DNA. All of this is accompanied by a long description of the action of acetylcholinesterase inhibition (putting people to sleep often deactivates the part of the brain used for making suggestions. If this isn't what is working, the fact that they are being frozen and sitting in relative darkness probably does it. Generally I hear this on my turf instead of someone else's -- which makes the discussion easier).

The longer they talk, the longer I talk. Every conceivable healthy thing which is suggested is countered by a detailed description and the accompanying science of why I do things the way I do them. Along with some comment about what current health gurus say and how there are a lot of people like me and how the gurus should change their tune.

If the "visitors" or "relatives" or whoever else doesn't "get" it, at least he/she/they aren't making suggestions by the time they leave -- probably at least because they are cold and not as perky in the dark. But sometimes I wonder if they think that because I am so normal and look so good, that they should be resting between activities. I have indeed found myself telling people that Mestinon, despite being the essence of the fountain of youth, is really only for ill people.

Thank you all for your comments, they are a great help. I think the Mestinon is making me more sensitive than normal. I have some kind of freaky problem with lactose, (I'm guessing it's related to the rbgh growth hormone). I have the same reaction with milk products that have the rbgh hormone. I've been told that lactose is just a sugar but I wonder if this sugar can still be tainted with the hormone.

I've been having bouts of crying lately and I don't like to cry, but I would rather cry than not breathe. I don't think the liquid form of Mestinon has lactose, but I can't afford to pay full price. I only have to pay a co-pay for the generic Mestinon.

I hear you. I have also been listening to alot of threads about what to eat and not eat. My doc. wants me glutton and wheat free, plus no dairy. What should I eat besides fruit and veggies on a budget? I have auto immune issues, and PN of some kind. Now I am not sure what to do at all since I can't seem to stay on a budget if I only eat things recommended. I am doing the best I can as I know you are. ginnie

If one more person tells me that if only I'd do more yoga or mediation or think more positively... Or juice, fast, eliminate entire food groups, add in entire food groups, or spin around 10 times in a blue polka dot dress.....

Sometimes I want to jump out of my half closed eyes and rant + rave slurred speech and all. If I only had the energy to get into downward dog. Honestly, most of my friends have a hard time accepting that their high achieving, athletic friend suddenly has a hard time walking around the block or opening her eyes. Those that "get it" have taken the time to research MG and for them I'm grateful.


Though I am new to MG, I am not new to chronic illness. I explain that it is better if they can simply offer support rather than suggestions.

Stay strong!