Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Five For Friday +1 11/20/15

Written by Katie. Posted in Five For Friday

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Whew. This was a LONG week. I definitely overbooked myself, but at least I got a lot done. Now, I rest and recover before the holiday rush begins…and remind myself of the P word…PACING.

1. Medical Stuff:

  • 1 Day of PT. They moved! The new facility is beautiful and HUGE. Looking forward to getting stronger in my new PT “home.”
  • 1 Day of Home Rehab. Treadmill walking on a higher incline, plus floor strengthening.
  • My acupuncture needles from last Tuesday fell out this past Tuesday. Pretty good when they stay in a full week.
  • I had my yearly gyno appointment. All the lady stuff checked out well.

2. I had a hair appointment on Thursday. The last few times we have talked about adding a subtle purple to my hair, and I chickened out. Well, I finally bit the bullet and did it. I was so worried it would be too crazy, but now I am bummed that it’s not more noticeable. I’ll have to get crazier next time 😉

3. We did it! The first time ever in eleven years! My teaching partner and I finished parent-teacher conferences on Wednesday with 100% parent participation on our first try, without having to reschedule anyone! That’s huge! I love getting to actually sit down and have real, in-depth conversation with our parents. They are so insightful, and are crucial for connecting with every child to the best of our ability.

4. I’ve been working more and more on our zebra benefit planning for April. And doing a lot of reminding and self talk that it WILL come together. It will. It always does…I must remember this. It is definitely a planning marathon. Not a sprint.

5. Are you ready for our new Hold on to Hope campaign?! Our brand NEW zebra apparel? I’m getting excited! You will be able to purchase the new awareness gear on November 30th! Stay tuned!

+1. A friend sent this to me this week. Thought I’d share…

I Can Barely Make Coffee Right Now

This is a personal newsletter this week. I look around my house, and everything is a wreck. You would think someone had just robbed and ransacked our downstairs. I haven’t vacuumed or mopped anything in I couldn’t tell you when.

We don’t have high standards around here. I don’t think autism parents need to fret over things like this as much as we do. There is the principle of ‘good enough’, and I believe we all need to cut ourselves some slack and stick to that principle in many areas of our lives.

But there comes a point where you wake up and realize you’ve lost all control of your life and the place where you live. It’s like the First Step in a 12-Step program. I feel powerless over the paper, debris, mess, stress, energy-destroying moods, poor health, and so much of life that I feel like I have no control over.

I used to be a marathoner, in great shape, on no medications, and, in general, a lot more able to be intentional about day-to-day life. But then everything hit over the past four years. My wife got sick in 2011, I started getting terrible migraines three years ago that have only somewhat abated even now, my wife is still struggling with injuries from a concussion she suffered over a year ago, my older son is severely autistic and entering the ever-changing pre-teen years, and, of course, there was my younger son’s cancer. There’s more still that I can’t even talk about here. Let’s just say it’s been a really hard four years.

I write all this not to whine about my life or to ask for anyone’s pity. That’s not my way. I write this in part so that if you feel the same way, you’ll know you’re not alone.

I know it’s understandable that things have unraveled for us. For most of us, we have our “it’s understandable” reasons for things being the way they are.

But there will always be reasons. We still have to live our lives somehow, even in the midst of a whole lot of understandable reasons. That doesn’t at all mean we have to live perfect lives in spite of everything that’s happening. That’s the furthest thing from what I mean.

For many of us, life will always be to some degree or another difficult. We cannot control this. We may be completely powerless over so many of the things in our lives. We can only control how we react to them. And this is where I think I have missed the mark badly.

I’ve gained a lot of weight. I stopped exercising entirely long ago. I eat terribly. Our house is wrecked. My health is poor. Just about everything weighs me down. Even simple tasks feel overwhelming. I can barely make coffee right now. I just woke up the other day and realized it’s all out of control.

This has to change.

So what am I going to do?

I came up with the idea of a daily ‘better-than-survival list’. It would eventually have maybe five or so things on it, but I’m starting with one or two and working up to it. That’ll be hard enough to start with.

These will be things I feel like I need to do every day to do more than just survive. Some options are: go outside and walk or jog for a bit while the kids are at school, read for 20 minutes, meditate for 10 minutes, do one of those 7-minute exercise plan apps you can get on your iPhone, clean something in the house for 10-15 minutes.

I’m not starting with all these at once because that’s always a recipe for failure. Maybe I’ll walk and clean every other day and read most days or something. I don’t know. Anything on that list done even a little will be progress. Even 10-15 minutes a day of anything is going to help.

So far, it’s going pretty well. I cleaned off the kitchen table, cut and shaped our completely overgrown front bushes, read some, and got some exercise over the last few days. It’s something.

When you realize your life is a mess, it’s a long, long road back toward a place even near where you’d like to be. But the only way there is to start somewhere. Sitting there in the mess like I’ve been doing just means more of the same misery.

I want to do more than just barely make the coffee. I dream of doing marathons again, but that’s a long way away. I know this will take a long time and that being willing to be patient with the process is key. After all, it took a long time to get into this mess. But taking the first step out of the hole is the way to get anywhere, whether it’s to the coffee pot, to the marathon finish line, or around the world.

So if you’re inclined, join me. Think of one or a few things to do for your daily ‘better-than-survival’ list, and let’s climb out of the hole together.

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