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?
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)
Unfortunately I don't know how to cope with all that I am faced with daily. It seems like something new everyday. Everything that made me me is gone. I have horrific mom guilt that I sleep a lot and miss time with my daughter and if that isn't enough I have a mother who constantly puts me down and says I don't try to be better. Please if anyone can give me some advice on how to survive the second half of my life I would appreciate it! Please don't feel alone because I'm right there with you.
Hi
,
Thank you for sharing about your current reality. Having the responsibility of parenting while ill, and experiencing guilt over not being able to be as present as you would like to be for your dear child while also not having a supportive parent is a lot to carry. I applaud your courage to feel the feelings and your giving yourself the necessary loving care to reach out for help,
Have you tried searching for support groups of women experiencing similar feelings? I did a little googling just now and think I may have found a website that offers some resources that you might want to check out: https://www.thecenterforchronicillness.org/programs
Again, good job on reaching out. We are all stronger together.
Hugs,
Gina Miller, Team MemberHi
, mom guilt is a topic that comes up a lot on one of our sister-sites. I wanted to share a couple of articles that I hope can help:
https://migraine.com/living-migraine/child-releases-guilt
https://migraine.com/blog/when-motherhood-becomes-reality
And as Gina suggested, please do check out the programs at the link she shared. You're not alone. We're here to listen and share support. - Warmly, Donna (Team Member)
