As the weeks have been counting down to my surgery (just 3 more days, now!) I have been spending a lot of time resting and being careful not to get sick. My life has been in pause mode and I have spent most of my days bored but too nervous to do anything fun. Because of that, and because I don’t know how I’m going to feel after this surgery I thought that I at least needed one last adventure.
We visited a goat farm, drove around the country side, watched a full moon rise, and jammed out to a lot of One Direction, Taylor Swift, and oldies. It was pretty amazing to fulfill our lifelong dreams of living together and having a place just the four of us. We drove around abandoned towns, saw landmarks, and did some very minor trespassing.
My friends were great about making sure I was feeling well because it was SO HOT outside and they know that Cushing’s makes me heat intolerant. I’m pretty lucky to have the friends I have. They managed to find the perfect balance of not treating me like this totally fragile and breakable flower but still being aware that certain things were harder on me than usual. They accepted when I was tired and gave me space when needed.
I think it all comes from a place of trust. They trust that I know my own body and my own limits. If I say “I want to go to the goat farm in 90 degree weather” they trust that I know what I am doing. I’m not going to say “Let’s go on a ten mile hike” if I don’t think I can truly handle it. I’m honest and they are trusting.
At the same time, they know that I can get wrapped up in the moment and need to be occasionally reminded that I have limits. They know that I want to keep up and I don’t want to be left behind because of this disease. But they never tell me “No” and I really appreciate that. It is so important that they are aware, and their awareness is super helpful. They asked multiple times if I was getting enough water or if the air conditioning was high enough – little things that can make a world of difference in a Moon Buffalo’s life. And they ask these things in a manner that doesn’t draw attention to the fact that I’m sick. It isn’t “Oh, poor Zoë needs help with everything because she has a disease!” It is more “This is something Zoë has to deal with and we will help her if she needs it."
They don’t treat me with kid gloves (though sometimes I wish they would), they treat me like a grown adult who can handle herself.
Having a chronic illness is a delicate balance of knowing when to ask for help and not letting your disease dictate your life. This past weekend really showed me that. I am so grateful for the friends I have. They have handled this entire ordeal with a tremendous amount of skill. I’m surprised and thankful for their ability to find the balance and treat me well.
This weekend was such an amazing experience and I am so happy to have had the opportunity. I’ll have the memories from this weekend to keep me strong and give me hope as I move ahead and face the unknown.
Of course after such a big weekend I feel like I could sleep for 72 hours straight. I was really cranky after getting back home and had to isolate myself from the family. But it was all worth it and I’ll be back to normal (normal for me at least) after a day or two.
So now I guess it is on to the next big adventure: surgery and healing.