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 don’t know why I’m replying because I don’t have a good answer to your question. I’m searching for ideas I haven’t tried. I have two rare diseases and I’m worn out. I’m not sick enough to require extra care, thank the Lord, but I can’t take care of my life the way I should. I have greasy walls and dirty floors, clutter and a jam packed garage that needs attention. It’s hard to consider coping when you’re in pain and under water. It’s depressing. I’m not clinically depressed, don’t get me wrong, I just feel sad about where I’m at. I’m 64 and have 6 children who are deep into their own lives. I don’t think they realize how much pain I deal with. They do love me but they see me functioning alright in their minds so off they go. I have Trigeminal Neuralgia and Charcot Marie Tooth Disease. Sorry for sounding off but I am watching here to see if I get any ideas as to how to better cope with this. I’m really trying and have been for a long time. Thanks so much for listening.
, Semding (((hugs))), love and light. You don't have to apologize for needing to vent. We're always here to listen. Have you talked to your children? Sometimes they can only see what we show them, and if you are showing strength because you have always had to, they may not know that you could use a hand. It is okay to ask for help, and that doesn't make you weak - just look at what you are dealing with all alone every day - you are incredibly strong! - Warmly, Donna (Team Member)
I have a therapist. Also, I met my boyfriend in a chronic illness forum during 2020, so it helps that he understands what it's like to have a chronic illness. Dealing with my super rare kidney disease is becoming more hopeful. Dealing with my less rare CVID is frustrating but everyone in my family helps me with my weekly treatment to make it as easy as possible.
, thank you for shairing! It seems like you have an amazing support system. It's cool that you met your boyfriend on the forum, and have built a mutually supportive relationship (I love a good love story!). - Warmly, Donna (Team Member)
I get frustrated with myself when I can't do certain things I'm angry
Love both the tat and the Joan of Arc medal on your bracelet! Thank you for sharing <3! Gina , it is hard, but we do have to learn to be kind to ourselves. It is difficult not to be able to do the things we are convinced we should be able to do But would you be so impatient with someone else you love if they were struggling? We have to love ourselves in rder to love all the other dear ones n our life. - 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!
