Even though I am a physician, I have learned much more about this illness and how to live with it, from other patients then from neurologists.

Frankly, I don't think they know what it means. I don't think any of them is truly interested. I don't think they pay much thought to the question of what they can do to help their patients lead a more normal life. I don't think they understand the kind of life-style adjustments that are required. I don't think they understand or bother to try and understand the tremendous impact of this illness on one's life.

I have yet to meet a neurologist that after taking care of me for a few months or years, if asked, will be able to tell you anything about me, more then my age, and my profession. I don't think any of those involved in my care knew how old my children are, how I manage to work despite my limitations, how I manage the activities of daily living. the only neurologists that actually checked what I can do were those that had to make decisions regarding my dissabilty and driving capabilities. they were the only ones that wanted to see what happens when I exert myself.

I was hospitalized for an entire month in one of the leading MG centers. I was referred there because I had a rare type of MG. you would think that this would make the residents there somewhat interested at least in my illness if not in me. but it didn't. none of them came even once to ask me what my life was like. none of them came to see what happens to me when I take a shower. none of them understood or tried to understand why I require respiratory support after such a routine activity. none of them bothered to come and see me when the concerned nurse told them that I am unable to get back to bed from the chair I was sitting in.

Their approach made me truly doubt their knowledge and understanding of this illness even in less rare and unusual "cases". And if this is so in one of the leading MG centers in the world, what would you expect elsewhere?

if your neurologist thinks that your difficulty in your hobbies, doing things with your kids, or in the evenings is not due to your illness, just because he can't see your weakness when you are in his office, then he understands very little about this illness.

I have learned to be very honest with myself and those around me about my limitations. (regardless of what my neurologists think or don't think about them). I have found innovative ways to do what I need and want, but sometimes I just prefer not to do anything and just rest.

I have learned that in order to deal with the hardships and losses of this illness, I have to have something to compensate for it, at least once a week. and if there is nothing that happened and was good enough, or if there were too many frustrating experiences, I try to "create" something.

It can be buying something nice for my 2 year old niece, it can be flowers, it an be listening to my son play the cello. what ever makes me stupidly and childishly happy.

and there are times when I just go to my room and rest, when I feel that all my batteries are empty. I don't want to see anyone or talk to anyone. I just want to lie quietly and think or not even think.

last time I did that my husband got concerned, as I just lay in bed and did nothing for two days. my son came to visit and asked me why I wasn't coming to join them. I said to him that when you have an illness in which everything is an effort, sometimes all you want to do is rest, and I am trying to see what will happen if I just lie in bed, without eating, or doing anything.

My son said that it sounds like an interesting experiment, but he doesn't think I could do it for long. He was right. I got up the next day, feeling much better and ready to tackle everything again.

living with this illness is not easy-not for us and not for those around us. its a daily struggle of finding the way to do what was trivial for us before.

maybe some patients do achieve a full remission ( I have yet to meet one of them, but possibly they do exist), and do not have any symptoms of this illness anymore, but then they don't have to live with it, and can't be given to us as an example of how well they deal with their illness, as opposed to us that have to deal with it on a daily/hourly basis.

talking with other patients and seeing how this illness affects them, can be very helpful. some have solutions that can work for you and some just make you feel less lonely knowing that you are not the only one that has to deal with this.