Im still learning ...does anyone suffer with emotional issues due to lupus?
I was diagnosed last year although I believe I have had it a long time. The pain becomes unbearable at times but 60 percent of the time time it is a constant roar in the background affecting everything I do. Some days it's unrelenting, some days i can manage.
The one thing I have been having issues with is , God Bless him, my husband.
He will look at me and say " What's wrong?"
And I lose it. Im tired of explaining what's wrong. Its easier to say what DOES NOT hurt bs what I am feeling at any given moment
"What's wrong?"
I am chronically ill that's what!
No, I cant stand at the stove and cook
No I cant fold the laundry
No I cant do the floors anymore
I feel useless and tired and like I'm constantly trudging through knee high mud with 50 lb ankle weights on
Whats wrong?
Everything
, We hear you... living life with the chronic fatigue and chronic pain of lupus makes even getting out of bed feel impossible. It can be so hard to explain to someone who isn't living with it everyday. One of our patient leaders wrote a general "letter" to family and friends about what she needs from them on her lupus journey: https://lupus.net/living/letter-friends-family It might be worth seeing if you could either share this with your husband or write your own to share with him and your other loved ones so you can get the support you deserve. Sending gentle hugs,
Gabby (team member)excellent suggestion!
I felt every word of your post.
it’s so hard to explain to our loved ones the difficulties of coping with lupus. Gentle hugs to you. I’ve written letters and stuck sticky notes all over to make my point in my house. It took a while for my immediate family to get and still after all this time they forget. But when I try and do too much they remember . ~Racquel~ lupus.net team member Racquet, I know what you mean. The HARDEST words for me to learn were "no" and "delegate". It took some some time for folks to get it but they did.
, You are not alone in that. It reminds me of an article Racquel actually wrote last year: "No" is a complete sentence: https://lupus.net/living/saying-no It's hard to do sometimes but it's so important to set boundaries for yourself on this journey!
Gabby (team member)yes I learned that NO was a complete sentence. I exercise the right to say no often. ~Racquel~ lupus.net team member
Your article was right on and, I'm sure, an affirmation to many!!
