I emailed Konstantina and got a nice reply back from her. I basically thanked her for putting effort into trying to define the issues that we all go through even before we are severely disabled. Until you rack up some significant disability, the EDSS is like using a sledge to drive a needle into a board (at least that's the analogy I used when I corresponded with her).
I often feel the same as Robbie in that I feel guilty for whining when I can still work out (albeit at a greatly reduced intensity than a year ago) and know there are others struggling much, much worse, but I also know that everything is relative to the situation you find yourself in. Figuring out how I am going to be joyous in life is one of my biggest challenges. I was an absolute life lover before all of this and now I'm just not. I still have moments when I can cut up and be the "old Lew", but they are becoming more fleeting.
The thing that keeps me going is my family. I'm still, after 14 years, madly in love with my wife (my kids are cool too
) and that gets me through hard times. I just hope we are not all dead by the time something REALLY effective comes along, because if any group could use a pick me up, it's us damnit!