How Do You Cope?
Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, or other challenges?
I get frustrated with myself when I can't do certain things I'm angry
Hi. I hear you~! It certainly can be very frustrating to lose certain abilities. I hope the anger isn't directed at yourself? I know I have some anger at having cystic fibrosis...not a lot, but enough to have bought a charm I wear it next to my Medic Alert bracelet on my charm bracelet that says "Fxck Cystic Fibrosis!" I found it on Etsy. It actually serves two purposes... one to blow off steam and the other to remind me that I am a warrior! I encourage you to skim through the other replies here and see if anything others mention as helping them cope resonates as something you might also benefit from? Let me know if you do... here in case you need to blow off more steam! Hugs, Gina Miller, Team Member 
, I feel you. We expect so much of ourselves, and give grqce to others, and seem to withhold it from ourselves. I wish you the strength to extend grace to yourself on the days you can't accomplish what you think you should be able to. - Warmly, Donna (Team Member)
One day at a time. Also by staying on my regular time schedule of meds and rest. Also realizing that I have to give up the idea that I can do everything I used to do. I also try to talk to myself about remaining positive.
yes one day at a time!
Pain meds, muscle relaxers, heating pad, marijuana
I haven't found any type of muscle relaxers to help nor cannabis... I have a pain pump I guess I'm lucky in that aspect lol that's how Dr's think. I can't get pain pills...I'm glad those things are working for you
Sounds like pain is the main issue you are suffering from...
May I ask what disease you are coping with?
Do these methods help control the pain for you?Gina Miller,
Team Member
Sometimes I don't. I try very hard to focus on other things
, it's hard sometimes, but getting through to the other side is coping. Be gentle with yourself. - Warmly, Donna (Team Member)
