Family Support

Hubby 'knows' that I am doing all my energy will allow. He also will help me pull back when I am over-doing. In my case (as with lots of us) I tend to do too much . . . and he helps me by saying things like "don't you think you've done enough for one day?" or "be careful . . . you'll be paying for that tomorrow" He does things that really zap me physically too . . . or at least he is understanding when those things aren't done. He encourages me to continue medical treatment even though I go on strike occasionally because it is SO DARNED EXPENSIVE. If I need him to come with me to a Dr. appointment, he will come with me. Things that are NOT supportive . . . are when people try to help by saying things like: "more exercise will make you stronger" "my aunt had lupus and she still held down a full time job" "if you have crohn's you shouldn't eat _______ " Gosh . . . this could be a really long post. I'll leave room for others to share. Great question! Blessings!

My hubby is my greatest supporter. But, actually, my entire family is very good. They all know to mention if they notice that I am starting to turn extra red in the face and that I must ease up a bit or "pay the price". My husband ALWAYS goes to the doctors with me which is really helpful - particularly on the "brain fog" days. DH also keeps track of the different meds and supplements.
DH has someone come in and clean the house (I am also allergic to many household cleaners so I can't even be in the house when it is getting cleaned) and that is a wonderful treat.
Really, though, my family is VERY GOOD at letting me try to do as much as I can and not complaining when I can't keep up. And they totally understand the fact that I reserve my energy for things I WANT to do, not things I feel I have to do.
This is a great thread - reminds us to be thankful for the things we DO have instead of feeling bad about the things we don't (guilty as charged!).
Thanks!

okie said...
Hi Hester, I don't get much family support. Most of the support I get is from here and I am SO greatful for it. I'm glad others are getting help though.

 

I don't get much support either Okie.  When I had bypass surery my entire family was there, and the same thing when I had the heart attack, and vascular surgery.  but lupus?  they do not wish to hear it.  the grandchildren do, but not my children.  I talk to the grandkids about it so they will know that it is me, not them, that kee[s them away from my house on weekends. 

I was first diagnosed with Lupus in 1996.  I researched everything that I could on it.  no computer then.  the other day I sent my oldest daughter an email about this latest flare and she acted as if she didn't know what I was talking about.  Asked when treatment was going to start and told me that she did not know that much about Lupus.  12 years I have had lupus according to my old doctor, and she didn't know anything about it. 

I wanted to know what kind of support people got from thier families, and now I know.  I am glad too that you get this support, and it really is good support, real support.  But like Okie, here at this place is where I get the support I need.  Even people that I thought were friends are simply not interested.

But everything to me is a teacher, and I think I have learned a great lesson with this most recent flare, and I appreciate the opportunity.  My neighbor down the street cuts my grass for me, and I have a big yard to cut.  This is  support isn't it?  I would have to give my house up if he did not do this for me.

thank you for your responses

Hester