Hi sara. Big hug to you!!
I understand the fears that go with living with a long term illness. Your point of reference has changed and now "normal" centers around Lyme.
It stinks. I know it does. My kids are spending a week up at their dads house. They went to an amusement park and a lake and shopping and a cookout and a play and a brithday party - all normal things that I can't do with them.
I am so happy that they are having fun although it makes me sad that I can't be the one sharing those good times with them.
In August they are going to spend a week with my sister and brothers at her her in Charleston. I am really jealous about that.
I could go if I want, but I went last year and it was so tough for me - I was exhausted most of the time and I slept a lot. I could not go to the beach and sightseeing with them. I stayed in the house (out of the sun because of the Doxy) and shuffled around. I can't walk very well.
So this year I am staying home. I miss my sister and I would love to see her, but its too much of a trip for this Lymie to handle and I don't want to be down there when I am too sick to enjoy myself.
Anyway, thats enough about me. I didn't even realize I went off on a tangent.
There are things I do with my kids to keep our relationships close. Maybe there is some activity or 'thing' that you can do with your husband that no one else can do?
Maybe you can have a weekly dinner date where you get a nice dinner delivered and send the kids to a sitter? If you get seafood you can make it a Luau theme and wear lei's and play calpso music and put umbrellas in your drinks.
Maybe you can spend one hour or two a week working on a puzzle or learning how to play poker. Maybe you can start an indoor garden together or play a board game. Maybe make a date to be together, send him an invitation - maybe lipstick invitaion on the bathroom mirror - for a weekly bubble bath (candles, music) together where you massage his scalp or something romantic?
Silly, I know, but it will keep you two connected.
Try to remember that he loves you and try not to be afraid. You will feel better someday!
Peace and health to you both.