I have a good friend who I work with. Every morning I would arrive at work she would say, "How are you?", when I said fine, she would say, "Now really, How ARE You?". Such a sweet lady, but I try to be positive and somehow it reminded me that I was sick, and that bothered me.
So, I promised her that I would tell her when I feel badly. That way she can stop worrying ALL of the time, and she wouldn't miss something.
Now, it's better. On days I feel crappy, I say, "I'm low on spoons today", and she looks out for me.
I can fully understand as my mom does not live real close to me and every time I talk to her she wants to know exactly how I feel and exactly what hurts when I talk to her, I love my mom but she has sever medical problems herself and I don't like to worry her. I was only diagnosed in Aug of last year, and I couldn't even tell her I had lupus, my dad had to tell her. But anyway I understand that she is my mother and they worry about us, but sometimes enough is enough. We can only take so much asking or caring when it comes to this. I am sure that she will stop asking so much as time goes on, if not then just approach it the best possible way you can. She will understand.
SLE Lupus diagnosed 8/8/11
COPD,Raynauda's, IBS, Asthma, Sleep Apena, Amenia and Arthritis,Diabetes,Reflux TMJ, temporal arteritis
Half dead, cripple and crazy but still above ground.
Novolog injections, Medrol injections, MTX injections, Dicyclomine, Plaqulin, Iron, Spreva inhaler, Advair inhaler, Albuteral inhaler, Fish Oil, Calcium, Diclofenac, Citalopram and doxcycline
Great idea Brenda!
My mom is the same way. She calls me everyday sometimes 2-3 times a day to ask how am I doing. From a mom's point of view I understand how she feels. At first I was kind of annoyed by it, by now Im so use to her calling that If I don't get that call during her lunch break I start to worry about her lol. Im very glad she is so caring, we have to count our blessings that we have our moms' around and they care. Not everyone is that lucky.
Marine wife (04-17-2012)
It's great to have people who care - it's not so great to be treated like Lupus is the central aspect of your entire identity, or to have a relationship with somebody where the primary dynamic is semi-invasive, constant worry.
I like the idea of promising you'll say something when you're hurting - (and of course, DO IT).
After my diagnosis, my husband asked me a hundred times a day how I was feeling - it annoyed the heck out of me. I felt like *I* disappeared, and all he saw anymore was the disease. That made me really uncomfortable.
But after a while, we worked it out. Now we're at a comfortable place where if he notices obvious differences in my behavior, he'll check in - but otherwise, he waits for me to tell him whats' going on, and I do...just not OBSESSIVELY anymore, on his end or mine.
Sometimes you just have to have a lot of discussions about this stuff and give it time to work itself out.
And that's how I feel. Like Lupus is the only thing she is thinking about when she thinks of me. Not "hey how are the kids" but always "how are you". I have a life outside of my disease!