What is your go-to item or ritual for finding physical comfort during a flare-up or a hard health day?
Whether it’s a specific pillow, a favorite tea, a warm bath, or a cozy blanket, we want to know what brings you relief. Join the conversation!
My ask time go to is headphones with my music blaring while laying in bed. And if no one is home, singing outloud as loud as I can ... lol
thank you. I know it always makes me feel better. Just wish my husband could understand that. He doesn't like it when I sing period. He wants to hear the music ... not me 😡😡😡 , you're always welcome to sing here! Husbands ... sigh ... - I hope he learns to realize that it helps you - and maybe sings with you! - Warmly, Donna (Team Member)
The shower- I don't know what else to do-
, the shower is a good place to start!
Best, Erin, Team Member.
During a flare my world gets very small. My go to is heat on my lower abdomen and back, lights dimmed, and slow breathing until my body stops bracing. Sometimes I’ll put on something familiar in the background just so I don’t feel alone in it.
On slightly better days, a warm shower and clean bedsheets feel like a reset. Nothing dramatic. Just small comfort that makes the pain feel less hostile.
Thank you so much Donna. And yes I do have and I am included in few local support groups. , you're most welcome <3 I'm so glad to hear that you have local support. It is so important. Have a wonderful weekend, and just shout if you need us. -mWarmly, Donna (Team Member)
Heated blanket
, yep! I love heated blankets and I am glad yours brings you comfort on the rougher days of living with a rare disease.
Best, Erin, Team Member.
