I dont kow if you are still reading responses to you original but if so then I hope this helps (and I would be quite happy to continue sharing experiences and feelings).
First some general stuff - migh be boring and frustrating to read but bear with me.
Yeh - MS is s**t. Totally and utterly, I think we are some of the unluckiest people in the world. Not the unluckiest by any means - I would hate to have been born in a drought/famine/conflict/poverty ridden place (and for example I am a male but oh my would I hate to have been born a woman in some of places where women are treated like 's**t). There are some far worse diseases to have (I haven't counted them up and compared them but MS must be up there). And by and large all those unfortunate to have those diseases did nothing - nothing - to deserve them and the cause if known are quite out of their control.
But turning back to we 'unfortunate few' - yes why oh why did this happen to me. MS - a disease for which there is as yet no known single cause, no cure and its impossible to be sure about how it is going to progress.
In terms of cause well no one seems to know but from what I can see the general picture seems to be one of a particular genetic make up that can make people susceptble to MS. Various environmental factors can then contribute to and spark off the MS. In my case I can see some particular events coupled with a bad long lasting flu type thing as being the 'tipping'/triggering point although I can also see possible very early symptoms from much earlier days.. So for you - who knows it might have been the EB virus - could have been other things, a combination of things, perhaps a complex mix and interaction of things .
I have seen and known some who have MS and what has happened to them is not very encouraging. So yes - its a horible, horrendous new reality to be dumped on us. Awful - and in everything I do there is now the black cloud of uncertainty, fear, and a loss of identity; confidence; sense of worth and of 'being a man' and some limitations - perhaps worse to come.
So yes its awful and you - all of us are bound to feel angry, confused and lost. And it is quite understandable and natural that you want to target that anger and upset that You aren't alone. Not at all. I retired early becaue of MS or rather because I wanted to make sure that I would have time to do something other than work before the MS hits too much. What I hadnt counted on is that at work I had a (relatively) important role and I think that (within limits) what I was doing was worthwhile and I was adding somehting - had something to offer. And I suppose that in the past (pre MS days) I had looked forward to a happy retirement and old(er) age. But now I am struggling to balance the freedom that retirement gives me against the feeling of worthlessness - a middle aged guy who is no longer a 'proper man' has somewhat unpromising prospects and might well come to rely totally on others. Somehow or another I , we, you have to face a new s...ty reality and get what we can from it.
I havent a clue what I am going to do - other than make it up as I go along and try, try try, to take and enjoy as much as I can. So - and I know this might sound patronising or perhaps insulting to your feelings - but yes feel angry, express your anger, write it down, sit there and write in anger and fear (write them about and to your ex if it helps - but whatever you do dont send them to him/her - it will just make you feel worse!!), just keep doing that over and over and over. But also begin to write down your new reality - exactly what it is and then slowly identify the things that you can take from it. The things that please you and be kind to yourself - take time to try and experience and enjoy the new things. Oh I know I am going on and on and I'm sorry for that. Its all much easier said than done. I suppose I am just trying to say - yes its crap, and it probably (but who knows) wont get any better . But lets take and enjoy what we can get from the time and possibilities left to us.