I have also come across a blog post of a lady who talks about being sick but not looking the part and that’s what so hard on friends and family to understand. When you have hair and don’t appear sick they say things like “you will beat this!” When in reality this is terminal and we will fight our whole lives to live what life we have to the best of our ability. That does upset me a lot I’ve noticed. People who just think you’ll get better like you have the flu or a cold. Not quite how it works with MBC. I mean my body is eventually going to wear down little by little. What I used to do with ease may start making me super tired afterwards. Simple things too like cleaning house or going to lunch. I am so not there yet but I do get tired and I do sleep a lot when I can to make up for lost energy. I protect my sleep since I work night shift and my circadian rhythm is off. I do it moreso now that the cancer is hiding in my body. Traveling thru my lymph nodes at a snails pace just waiting to rear it’s ugly head somewhere new.
Anyways, I tend to get off topic so I want to just say how fortunate I am to live close to big cities like Houston and Austin where I can attend these conferences and learn more about my condition and ways to make life liveable. And glad my husband gets to be a part of this journey with me. For better or worse, sickness and in health. He signed up for this he says and he will accompany me along the way no matter how long or short that may be. God love that man!
