📣 Discussion Topic: How do you keep your friendship strong when you energy level is low?

[Olivia_MC]

Keeping friendships strong when your energy is low can be incredibly difficult. How do you stay connected on hard days? Share your tips below to help other people in the community👇💙

[PomPupLove]

I'm learning to adjust/accept virtual connection through ZOOM.

[Paleta]

My friends don’t reach out anymore. It’s my husband and our families who are there for us. That’s okay. I have all the support and love that I need.

[Susaberry]

I am 12 years into to this disease.Over time, my kids gradually stopped calling, nor do they visit. My daughter lives in Louisville. I live in Atlanta. I have three grandsons: the eldest is 10. I haven’t seen them in 5 years. I don’t feel as though I even know them anymore. I have 5 brothers and sisters in PA. We used to be close. None of them come to visit me. They don’t understand why I can’t make the trip to visit any of them. I’m too sick and weak. I feel forgotten and discarded. I can’t force them to want me in their lives. I’m not going to make them feel guilty. Can someone help me?

[longingtrustingHIM in reply to Susaberry]

I empathize with you, Suze. I can pray for you. And I will. God truly cares. And I care. Sincerely, LongingtrustingHIM

[longingtrustingHIM]

I try to “not talk about it”. Lack of energy can be blamed on any number of things. And since CP is , well “chronic” -so symptoms come and go, and the waves can be often only noticed by a spouse or very close friend, so —why talk about it? I have a daughter who is an ER nurse. She sees worse case scenarios regularly, so my symptoms seems rather insignificant. I have learned to just live with my chronic pain, as well as other less than pleasant symptoms, and simply not talk about them. I just disappear or do not participate in group activities very often. I prefer to be alone and distracted myself by reading a good book, watching Netflix, etc. For me, sitting down and reading helps take the edge off the discomfort and pain immediately. As soon as I stand up again -it lets me know it’s still there. So, up and down, up and down…until it subsides. Maybe a few hours. And when it becomes too much pain and discomfort to bear, I take indigestion pills and/ or Ibuprofen, and sometimes that helps enough so that I can get on with my day. I am blessed to have a great doctor, who has prescribed my enzymes, and supplements, and I am on a strict gluten free diet. I eat small kid-size meals and have snacks through the day. This has helped so much!

But overall and through it all -my faith and trust in God as my loving Father, has truly been my lifeline! Counting my blessings-literally -naming them -is a practice that has truly helped me and I believe God cares! He is with me every hour of every day. I am blessed to know Him and I would like everyone who suffers from CP or any other chronic illness, to know Him personally, and to experience His goodness and help as I do.

I am so very thankful to our great Team of staff who are tirelessly researching and offering resources to all of us. Thank You!