I've learned to point out to dearest husband, on my good days, that I'm feeling better, peppier, and to draw to his attention that I'm NOT complaining.
I think it helps him to understand that I'm NOT choosing to 'play it up' when I'm feeling bad, which is bound to come around again on the Merry Go Round of Sjogren's.
He's really beginning to get the picture, and he's more and more supportive.
As much as I KNOW that we can't allow other people to determine our worth or validate us, it is priceless to me that he 'gets it' at last.
Now when I am having problems, he explains exactly how my immune system is sabotaging me, and that at many levels I'm helpless to change the ups and downs.
He's much more patient with my pace of walking. When I get out of the car, for example, I have to stand for a few seconds to be sure I'm not too dizzy to start walking (autonomic neuropathy causes my blood pressure to fall when I stand up). And then I will never walk fast because I have too much pain and I'm too unsteady to risk rushing since my feet and legs don't help me balance, nor do my inner ears (I'm going deaf from nerve damage due to Sjogren's).
If I medications don't slow or stop the progression (seeing the neurologist week after next), I'm sure to be using a walker one of these days.
But now, I take my husband's arm quite often, and he is gracious and gentle with me.
So we've come a looooooooong way, dear friends.
I know I am fortunate in so many ways, and I'm very grateful.
I am still dumbfounded at those of you who develop this early in life, and have so many milestones to achieve with the disease thrown on top!
You have my love and support, all of you.