My uncle (my dad died and this man was the closest thing I ever knew to a father) had MS. He had a pool he could not use due to heat sensitivity, but he kept it for us kids.

He'd have drinks and snacks all summer - his dd was grown, but the rest of us lived over there, lol. He had a stereo system in the carport, and he sat in the A/C in his livingroom, and we'd pop inside to talk with him.

Some of my fondest memories are of those days. So don't think missing out on the beach makes your kids think any less of you. You'll be surprised what they will remember - you will give them plenty of good times, but you have to take care of you to take care of them.



My sis asked me to join her and some other women on a Mother's day get away. I said I'd see if I was up to it. I let her know a couple of days before they left that I was.

The other women didn't understand why it took me so long to get back to her on that - they don't know me that well. I never know if I'll be up to things.

At one point, they decided to have a go at the hotel's hot tub - I declined, but did put my feet in for no more than 5 minutes as we sat and chatted.

I got such a round of vertigo I scared them all trying to walk out of the pool room and make it back upstairs.

I had to explain why that was - I just said I'm heat sensitive and give me a minute, I'll be fine. Which I was.

But I'd been doing so well, hiding how bad the elevator was messing with me that it made me embarrassed to be all drunk-walking in front of them, and mostly that it had worried my sister.



I'm used to it, it's no big deal to me, but I was mad that she had to get upset about it.

This is part of why this stinks. Never knowing how we're going to be. How other people respond to how we are.

The thing I try to remember is that nobody really knows how they're going to be, how life is going to be - if they think they do, it's an illusion. Because whatever their life may be right now that can all change in an instant. We just live knowing that every minute, for better or worse. At least we are not totally blindsided by these changes.