Sophie, I think you expressed very well what a lot of us feel or have felt. Mac really affects life style,is often very limiting and it doesn't help to be floundering around in the dark trying to find something to make it better. Fatigue often leads to depression. Mac is isolating. I've yet to meet someone in person who has it. And, because it's rather rare, people have difficulty understanding why it's so limiting when you appear to look ok. Fatigue, especially when it comes and goes, is difficult to describe. Trying harder often makes it worse.I've given up talking about it with family and friends. They ask how I am and I either say ok or a little weak. Most people feel a bit weak now and then but it goes away. And here you are up and down, strong in the morning and weak in the afternoon.

Sophie....what helps is daily exercise, vitamins, praying constantly and surrendering, some kind of therapist that can help us with this journey, mindfulness, and a few close friends to distract us with fun things to do....all help in some way or another...I find the spiritual journey the most important as it helps me with depression, when it hits...anxiety there are simple cognitive strategies that really help.

@aflib You are so right about being strong in morning and weak in the afternoon. I try to tackle the important things in the morning because by afternoon, I am horizontal. I am still trying to be more organized with meal planning and do more of the labor intensive parts in the morning. My husband does most of the cooking for evening meals, I mainly take care of the sides or else we'd never eat vegetables.

@jkiemen, Hi Jo Ann. I am concerned about your depression, especially when you say that you fear it is getting worse. Can you seek counseling so that you can learn to cope with this better? I wonder if taking a short break from us here on Connect would help. I have had two other members tell me that they had to stop looking on this site every day because it was a constant reminder of their disease and was putting them in the 'victim' role. Also, reading some of the posts brings on yet one more thing to worry about. A break from us might allow you to reset your mind - take a vacation from thinking about mac. Go to the movies or visit friends..... I am sending you extra cyber hugs.

So true Megan. I have a lot of supportI've friends who check in constantly, and my husband, WOW!!! He is so loving and understanding. So just keep going, don't give up. Feel free to ask me any questions you have. I have been to the bottom, and now I'm on top!!!!

Sophie...thank you for your kindness and honesty

I u pnderstand! When I told my sister about it after my diagnosis, her reaction was—bearing in mind that her husband almost died from MRSA about seven years ago—“So what? I have MRSA colonized in my lungs.” Without getting emotional, I replied,”But you don't have an underlying lung disease. “True.” “And you're not immunocompromised.” (My spleen was removed in 1976.) “True.” That was the entire conversation. She seemed totally disinterested—my only sister! I was devastated.

@franthony I am so sorry that your sis was not more compassionate and concerned. She is probably spinning from her own health issues and not willing to see that you are suffering.... And that you are also suffering from her cavalier comment. Well, I am glad you are here on this site surrounded by ladies that do care. I was rather startled by lack of comments or concern from my husband's family...nada, zip..zilch with the exception of my kind sister in law who has mountains of health problems of her own. I guess it just comes down to how much empathy other people have and ultimately if they can feel your fears, anxiety and suffering. I'd give her a little slack and she might just realize how serious your condition can be and that you need her support. I am sorry and feel badly for you but please know you can come here and you will find an understanding person that will hear you. Good luck to you...We are all sisters here!!

@franthony All I can say is Wow. Obviously she does not understand what this is.

Alleycatcate.....beautifully said