what kind of a s*** disease is this. I’m tired all day, tired all night, and if I do get a burst of energy which is unlikely, it won’t last long. my balance is rubbish, my bladder and bowels barely work, and I can’t even have sex or masturbate due to lack of sensation. I have a ton of other symptoms that p*** me off daily. I use a wheel chair.mobility scooter. and various over aids to even come close to living a so called normal existence. its like being stuck in limbo, there is no satisfaction of even knowing this will end. I’m 29 and I live my life like a 90 year old(no disrespect). please please please hurry up and find this apparent cure on the horizon because I don’t know how much more I can take. sorry

So sorry to hear you’re so fed up scott1. You’re right, this is a s**t disease and it affects us all differently and in so many different ways. It can be very cruel and frustrating when trying to lead as normal a life as possible. I too am tired all the time and can’t remember what it feels like to wake up feeling refreshed. I work in the week and then spend my weekends not wanting do do anything but sleep… Having said this I know there are others much worse than me and we can’t give in. You need to fight to have a life and fight to find happiness. Keep your chin up hun.