sleep

As many will tell you very hard to sleep with any muscle or nerve pain tonight is anotherone of the endless nights and it's only starting .
No matter what you do or extra pills you take the pain just seems to move with you.These nights are hard as you are tired and your body just will not settle down.
I have learned not to fight it. Read,play card games, write, or do whatever you can to try and stay as comfortable as you can. If you fight against it the pain will only get worse and that doesn't help anything.
You just have to take each day and night however way it comes and a better day or night is just around the corner.

Which way to go

I am at the point of which way am I to go the easy way or the way of keep making the phone calls,letters,and everything else I have been doing to get Dystonia Awareness out or just quit as everything is falling on deaf ears and blind eyes. NO one cares anymore and with everything happening in peoples lives all the people suffering from Dystonia but being told to go home and take this pill you will feel better has to STOP!!!!!!!!!!!!!!!!!!
I have never been one to quit but after having Dystonia as long as I have my brain is aging and I feel Frederick coming into more muscles and I fight everyday to keep him at bay
People need to listen and learn and put someone else's needs before their own.
Today is Father's Day and at a very young age the motto in our home was "no work no eat" and "to buck up"Well I'm Bucking up and I am going to break down doors as there are so many that are or will be going through the nightmare of Dystonia and it needs to become in the same league as Parkinson's so there is a central place that people can learn and help one another instead of hiding or only helping themselves.

June is here and so is Frederick

Well time is flying by and here is June .
I am busy with doing everything I shouldn't do but what do Drs. know
I am lawn mowing not good as my mind comes up with the strangest ideas( and no it's not because of an ice cold beer after mowing as not allowed beer ).
I keep myself active as I guess I enjoy my muscles spasming out of control in the middle of the night ,my nose on my ear, and my left foot twisted to the left.I think there's a name for enjoying pain but I can't remember right now .
Everyone tells me to slow down rest Are they nuts ? If I slow down the Dystonia wins of course by moving the Dystonia wins also.
OK if Frederick wants a fight he's going to get one as I'm not ready for my purple wheelchair!!!!!