I found it so hard to put into words how the changing and sometime sudden symptoms felt, so my husband and I created a number system. It would be different for everyone depending on their symptoms, but mine looks like this.

1 = pretty much normal to 10 = Total Paralysis (can't feel my body)

The number system works for us because my symptoms range so much in a single day. One moment I'm feeling like a 3 and then suddenly a 7.

It helps my husband understand and keeps me from always having to break down every ache and pain.

I've struggled with this for years. First I had to learn to say "no" to new commitments without offending the person asking for my help. I did soon lose those " friends". Then there was my circle of friends my husband and I hung out with. I thought this was a tight circle and that the ladies especially would have compassion and understand when I couldn't be there or had to leave early or needed help with something. That didn't last long - fair weather friends. Of course my sisters have done everything they could and I deeply appreciate all they've done. Along with my church family. They have stuck by me thru thick and thin. My immediate family has had a difficult time with the transition of mom doing everything to everyone taking care of themselves
But they're getting it. It's difficult but God will guide you through it with love so when you lose those friends you can forgive them and not carry a biiterness in your heart.

Yes! My husband has been so good most of the time, but just the other day when I didn't feel good he shouted, " Oh quit milking it!" He said he was sorry later. I think maybe they must get tired of us feeling bad so often too.

AmyHall,

I lost my wife because of the MS and she made it prefectly clear that was the reason.
Now I deal with it by not letting anybody get close enough to cause me any more pain than I already have to deal with. Sometimes, people are just plain A-holes and there is no excuse or justification for it.......they're just A-holes

Yes, at times I think they just get tired of us not being able to do everything with them. My husband loves to be on the go and there are times I have to tell him no. He knows I get tired easily but he doesn't understand why it takes me longer to get ready to go in the morning. Sometimes I just have to tell him to back off and leave me alone and to go do his own thing.