momentarilly
i breathe, and then step back in
superhero's cape


MS is terrible.  The worst, actually.  No, that's not true.  I'd rather this than a handful of other diseases - ALS, for sure.  Some types of cancer.  Alzheimers.  I'm sure there's more.   

For a long time, we did MS really well.  He was biking to work 13 years ago.  We were camping.  Traveling the world.  We still do that - travel - but it's different now.  Somewhat sadder, maybe - a continuous reminder of what we'd be doing "if we could".   We did Prague and northen Europe, Puerto Rico, and South Africa in a wheelchair.   Those were the good days.

This year we did a cruise around Italy and Croatia - a bucket list item for me.  It was gorgeous and was moving - but just a bit short of my (our) dreams.  I'm not complaining - just saying.  It was around the time that things were getting worse.

Today kinda sucks.  It's a "worse" day.  Normal days are laundry for the bed pads or his pants, more housekeeping than emergency.  Great days are no laundry days.  Worse days are more laundry or different laundry.  The days where you take a moment and wonder if you've hit the worst yet, or if there's more to come, and what the hell are we going to do?

I think of Grand Canyon in June - his bucket list item.  And me finding a wheelchair cabin, and a flight, and making plans.  And then I think of this morning and think, "that's probably not going to happen" - and wonder how long I have to fake it until I make it.  Do I cancel the trip now, and not waste money?  Do I keep it a while longer, hoping we get ourselves sorted?  I don't know.  No one knows.