Hi Clerky96. I hear your immeasurable care and concern with your post. This is a very frustrating, slippery diagnosis, and at the end of the day, your husband's health will benefit most if you, yourself, don't fall victim to it. If you haven't tried some counseling, I recommend it. It helped me corral my grief so that I could be a better spouse during the time my husband has. Beyond that, I did another thing that I actually "enjoyed" again today. I got Katie Couric's book, "The Best Advice I Ever Got." I only let myself read it when I am waiting in a doctor's office, or at the hospital. The chapters are short and uplifting. Because I did not let myself read this book in one sitting, I actually look forward to the times I get to read it again. It's like a little, tiny reward and the break allows me to digest some of the inspiring thoughts from all sorts of leaders across the world, in music, science, and beyond. Then, when my husband was done getting his MRI, I was full of new stories, as if I had chatted with these people in person. He enjoyed hearing me retell him the stories on the ride home. It was superior to allowing the dark nature of the diagnosis claim all of our happiness.
Another thing that actually helped me was to realize that my husband could have died in an accident and we would not have had the extra, intimate time to spend together. This disease has left us emotionally naked in a way that no other life event has ever done. It may sound odd, but for that I am thankful. Good luck and remember - this site is a great place to unload because we all, in some fashion or another, understand.