My mum died this afternoon and I know it is something that at some stage we all deal with, but because of my condition I couldn't just jump in a car or on a train as she was 200 miles away. I have no idea why I am sharing this, but I am. Our condition takes away all the things that we once took for granted and I hate it. We have to deal with the terrible benefit people and explain over and over again what we have to go through and then we feel bad because are we over reacting or making a big deal, well today I am saying we are not. To take away the ability of freedom of movement is enough. I would stand up for anyone with our condition.