You know what they say about progress? Two steps forward, one step back? Well, lately I’ve been feeling more along the lines of one step forward, one step back, or maybe even two steps back.
Basically, I just haven’t been feeling very well. It could be school or the warm weather or just an angry stomach. I don’t know exactly why I haven’t been feeling well, I just know that I haven’t. I’ve been tolerating my feeds less and less which means that I’ve had to turn down my rate or take a break during the day or unhook early, and while that might not seem like a big deal, the calories lost really add up! Combine that with my abysmal oral intake and I just have not been getting the nutrition I need. And I can feel it. I can feel it in my near constant lightheadedness. I can feel it in my whole body fatigue. I can feel it in my general “off” feeling.
So yesterday I put pen to paper with the help of my calculator and I figured out a new feeding schedule (and yes, I realize this sounds like something you do with a newborn). Taking into consideration rate and symptoms and sleeping and all of that, I’ve figured out that I need to run my feeds for 20 hours a day. 20 hours!!
One step forward…and one step back. Although let’s be honest, this feels like a lot more than one step back. Perhaps 20 steps back…This reminded me of a quote that gets thrown around a lot in the spoonie world. (Don’t know what a spoonie is? Read about it here)
“Optimist: Someone who figures that taking a step backward after taking a step forward is not a disaster, it’s a cha-cha.”
~ Robert Brault
Well, I have always wanted to learn how to ballroom dance. Very funny universe, very funny – this is not exactly what I had in mind!
Side note: I just spent the last 20 minutes watching So You Think You Can Dance cha cha’s on YouTube. This post is turning out to be a much better study distraction than I originally anticipated!
Obviously there are a few key differences between living with a chronic illness and being an incredible cha cha dancer. I mean for one, I would definitely not be okay with wearing those teeny tiny costumes. And all those lifts are not conducive to feeding tubes and backpacks – that’s just a disaster and an ER visit waiting to happen. I also don’t really like wearing heels. And all that spinning around would probably make me really nauseous.
All that aside, however, if you actually watch a cha cha you will see that the dancers are not stuck in one spot. They eventually dance all around the stage and even if they end up where they started, at least they had some fun dancing in the meantime. Maybe playing with my feeding schedule is going to get me nowhere and I’m going to end up exactly where I started, perhaps even worse for wear, but at least I’m doing something! At least I’m trying. If this doesn’t work then I’ll just have to learn a new cha cha step, put on a new song, and keep dancing.
Now I know without a doubt that I am not the only one out there struggling right now. It doesn’t even matter what your struggle is, everyone is going through something. All of us, in at least one area of our lives, feel like we are either going nowhere or going backwards.
If you want, you can kick off your shoes, stop the music, and stubbornly sit down in the middle of the stage.
Or you can come cha cha with me!
Don’t worry, I have no clue what I’m doing, either.
But practice makes perfect, right?
I think I will come and cha cha with u!!!!!!!!Today I had another one thrown at me. I have a friend from Seattle using my trailer, and today got a call – water ALL OVER mostly under the trailer gushing out! Must be a broken pipe or ????? Luckily she is American. so has a plumber coming over, and I guess he will have to tear the skirting off to find out the problem!! More $$$$$$$$$ so I shall dance witth u!!
Love, Val
Sure hope your new calculations help you!
Ugh! Just when you’re trying to sell it, too. Such a hassle. Cha cha on we shall 🙂