My grandpa used to say, "Gray skies at night sailor's delight; pink sky in morning sailors take warning." Tonight there were gray skies at night...a beautiful gray night to help with the grey day. So I am really tired, because I was lying down and all of a sudden it came to me, the phrase is "pink skies at night sailor's delight, pink skies in morning sailors take warning..." oh well gray works for me...
I am just so tired of this new normal. I am tired of trying my best and knowing that "winning" has a completely different definition with chronic illness. We grow up playing games to win, we take tests and try and win an A or a percentile, and these days there has become a cottage industry of "winning" against an illness. There are rubber bracelets and insanely long walks and ribbons all geared towards "winning" the war on fill in the blank. And for some reason, I am tired of all this winning and losing because even those illnesses where winning is alive and losing is death there are massive shades of grey in between.
I don't think I will ever "win" this thing. The last three years I have technically been winning...but I also have traded intense fatigue, can't get out of bed all day fatigue for these crazy weird food allergies. I miss restaurants. Of course I can go in a restaurant, have my plate flagged or eat before I go...but I just miss things being easy. But in life there is no such thing as easy, just trading problems. I am sure there are people out there that would say, I will trade you CFS for my Stage 4 Melanoma..and I would run for the hills. I get that, I know that, but this weird altered life I have that is segmented and focused on trying to get well from something with no cure, no winning, and seeing if you can be the one that out smarts it...well there are days it's just plain old. It's days when I am so use to good-byes that they don't phase me anymore that I realize my normal is far from normal.
It's f'ing lonely. And everyone has their lonely. Yesterday I watched black thick blood come out of my veins and thought well it's right there in front of you...and I got in the car and just cried. I cried because this is not what I thought it was going to be and I have no idea how the story is going to play out. Then I cried not for myself but for all those out there that have the same situation or worse everyday thinking this is not how I thought things would turn out and yet find away to make "this" better than what they thought. Am I one of those people? Am I one of those people that make "this" better...or sit and get covered in the quick sand I am trying so hard to dig out of? That becomes the real problem that eats away at your head. Which team am I on? Am I the I will win within this new normal or will I lose. Will I succumb to being less than the best version of myself because I didn't see this life that is in front of me coming? Isn't this what all the bumper sticker quotes are for...days like these? So like the Devil and Angel on either shoulder, what type of patient are you going to be?
I guess I am both...I am gray and grey and perhaps the "a" is the fighter gray and the "e" is the lonely scared shade. I love gray, it's my favorite color and one of the few words that has two acceptable spellings...the murkiness of it's shades transcends it's phrase and proves it by it's refusal to play by the rules of "correct" spelling. So today grey seems to be winning, but gray is the ultimate tortoise and may get knocked down a bit here and there but ends up finding a way to win. And if you can't win, you find a new way to define what winning is...that is what I am working on. Peace.