some thoughts...
 

There have been quite a few very inspiring threads lately. It made me think about various aspects of this illness and put it together in a slightly different way.

1. The major symptoms of MG is not weakness, but instability. Weakness is something you can learn to live with and adjust to, much more easily then instability. Instability makes you feel like you have fallen into the rabbit hole and can't know what is near or far, big or small, light or heavy any more.

2. most neurologists aim at controlling the weakness, which is something they can measure and examine. They do not know what to do with the instability (even though they are fully aware of it and know it is the telltale sign of this disease), so they either ignore it, or attribute it to the patient's emotional problems. In a way they are correct, because you can adjust to it to some extent, but they do not realize that they should be your partners in this process.

3. people in general find it much more easy to deal with something that is not constantly changing. This is true for us, for those around us and for our treating physicians. We want those around us to understand that we may not be able to do now, what we did a few minutes ago. But, how can we want others to understand what is even hard for us who are experiencing it?

4. There is a big difference between using your illness to get "discounts" or benefits, to learning how to live with it and weave it into the fabric of your life, using what ever can help. Superficially it may look the same. But in fact it is very different. The former requires very little effort, the latter requires constant efforts trying to find innovative tools to keep on doing what you need and want, even if in a different way. The former means giving up on yourself and your dreams, the latter means doing what ever you can to preserve as much as possible of your life and productive life.

5.Trying to hide your disabilities is counterproductive. Stressing your abilities and developing new talents and skills that utilize what you can do, despite what you can't do; finding what you can gain and not only what you have lost is truly learning to live with this illness.

6. fighting to receive the accommodations and tool that enable you to live your life in the best possible way, is well justified. It can be less working hours, adjustment of your work-place, medical treatment, respiratory support, emotional support-what ever you think and feel can help you at a given moment. Even if you look good, you also want to feel good.

6. It is important to find a neurologist who can understand all this. It does make a difference.

Thank you Alice. This is one of the best written gems of wisdom I have ever read. I have been following this board for about 2 years and have never posted but your words mean a lot to me. I notice you wrote this at 3:22 AM. It's 4:35 AM here and I am up getting medicated so that I'll have a couple of mestion doses in me by the time I go to IVIG. Instead of complaining about waking up every day at 4 I choose to look at it as my own special "me time" where I can have a private cup of coffee and do whatever I want to do with no outside or family distractons. Heaven knows the day is busy enough. I've had this disease 40 years and I've been through most trreatments and all of the psychological baggage you spoke about. I lived your words and have had a very good life - I'm still waiting for the remission from the thymectomy 40 years ago - oh well, some things are worth waiting for. I also WAS in the medical profession and had to alter my career path at a young age due to the MG. If I hadn't been "gifted" with MG I would never have found the other talents deep inside of me that needed developing. Please follow Alice's advice to anyone who reads this!!!