High red cells and tired constantly.

, do you have any tips to rest guilt-free? Sometimes trying to rest makes that inner itinerary go on loop at top volume! - Warmly, Donna (Team Member)

I was diagnosed almost two years ago when I was 79. It was several months after my best friend died from a chronic lung condition. I had been his caretaker. It took me a while to accept the fact I required more rest than I ever had before. I know the guilt and felt like I was being lazy. I began to realize it was time to take care of me, and rest when I needed to was OK. Some days I have more energy and try and do things on those days. My neurologist has said walking is a good exercise, so I have a friend and we walk at an inside facility that is temperature controlled. I went through a grief process knowing that things had changed with my body but now I embrace the fact that my medicine works well and I still can live a full life with some adjustments. I am a Christian so my church family has been as great support as well as biological family and friends. Hang in there. On the days I am fatigued, I watch TV, read, or do other things that are not exhaustive. Good luck and God bless.

Listening to spiritually uplifting music and spending some time in prayer are lovely ideas.
I have a coffee mug I will use on days I feel especially challenged... it says, "Pray more, worry less." Even just seeing it helps me at times.

And, hydration is SO important!

Thank you for sharing here!

Gina Miller,
RareDisease.net Team Member