I completely understand. Once in a while I question my ability to take on this dreadful burden and cope, day in day out. I've only had this less than a year. I ask myself how am I going to cope with this another 30 or 40 years!

Walking past people in the street, normal people, who are completely oblivious to the terrible pain I'm suffering while they enjoy life. And yes, I feel envious of those lucky people. I was like them once. Is this what it's like to be very old and watch the young people doing things.

If anything good has come of this, for me it's gaining an appreciation of what others are feeling. I was once quite a selfish person, impatient. If a little old lady was in my path holding me up as she carries her shopping to the car, I'd get angry inside, wishing she wouldn't waste my time. But now, now I'd help her to carry her shopping, have a nice chat and feel great I'd met someone new today.

That is one of the positives for me. I've learned patience and understanding. It doesn't quite answer the "why me", but it helps me accept it more.