I have family but I think we are alone as the disease progresses. We have no outward signs of being ill. Family thinks I should walk more. I can’t breathe after a few steps. I have always loved to read and I can’t settle enough to get involved in a book. I seem to stare at the wall a lot. I get upset with me and my lack of drive. I am thankful for what I have. I do agree with each bout the illness progresses. Am now coming off one. I will be better tomorrow. We are all different but so alike. There is always someone who feels worse than we do. Pray for each other as we are never completely alone. God loves us and cares for us.

@jo54 You are right. You are never alone. Lots of times I cannot breathe and I am short of oxygen while on the CPAP in my bed at night or in my big comfy chair. My family thinks I am nuts. So do most doctors.

You are not Nuts and I am willing to bet your family is so scared they do not know what to do.
Perhaps learning how to breath with a relaxation tape or assistance will help you? It helped save my life!
Dr Amit Sood has a lot of helpful suggestions in a book Stress Free Living.
linda

Jo54, your post has heart and wisdom. You (we) are never alone and God is ever faithful to be with us. It must be difficult for family to watch the activity changes and we still look the same. Praying for all my PF brothers and sisters that you will find a place within yourself of comfort and peace. You are loved.

@penlee, thank you for reminding me I'm (we're) not alone. It really helped me especially tonight. God bless you.

cognac,were not alone thereare times i feel useless ,get frustrated not doing what i know i should be able to do.But my wiife and kids
are there to help me.and there are so many people willing tohelp once they realize you have trouble breathing.