thanks Bmee2, unfortunately as soon as i was given the dissociative motor disorder dx the docs are not interested in whether it is the right dx or not, they only want to save money by not sending me for the tests to see if it is anything else, it took a year of fighting them to get an MRI scan! i have thought of Duchenne muscular dystrophy, especially as my niece had muscle problems too, but the doc just laughed at me and said 'no' wheni mentioned it to him. needless to say i have now changed my doc!

I can't lie, yeah life is hard in many ways, but so are most peoples in their own way, i really believe the harder life gets the things you once saw as huge problems seem very insignificant now, so believe although i have many huge problems now, in years to come they will be small problems, i am not going to dwell on the problems that could be larger than these in years to come partly because it scares me to think my problems are going to get worse and partly because i live for the here and now because life is too short to waste it. I still try and do the things i want to do, since my dx i have become a director of a charity supporting those with disability or effects of age to shape their own life, I am a buddy supporter, have recently qualified as a support broker, and am training to be an advocate. so all in all life is better now than before my dx when i was alone and housebound for 18 months! I had a good grounding of 'having to stand on my own two feet' which although was not great as a child has proven very useful since becoming ill as it gives me the determination to fight for what i need! I just have to very aware of my limitations and stop before i flop! I have just recently stopped feeling guilty for taking duvet days, and only because i remind myself that if i sit on my bum all day every day i will get pressure sores!