Friday, January 14, 2011

friends, feet, and fantastic people

Some recent excerpts from my personal journal:

Tues. Jan.11, 2011
It’s awfully nice to have people in your life who will actually physically carry you home, even though it was your bright idea to try to walk to a diner that ended up being just a little too far. That sure was a nice way to start off the new year.

In my search to find ways to communicate better to friends I found something called “Spoon Theory”:
Or, maybe I just stumbled upon it while looking for something else. I actually found it on another Chiairi sufferer’s blog, but it was written by a young woman with Lupus named Christine.

I was talking to a friend on skype today, who has Chiari and a number of other health concerns, and I had a moment while I almost felt like Christine’s friend on the other side of the table. Like I was clinging tightly to all my spoons, and couldn’t bear the thought of loosing just more. And I thought for a second, if you’re operating at a 40 or 50 on the Karnofsky scale (, and I’m sitting over here at like a 70 so, how the heck are you doing it?! And then I sat for awhile, and complained to my Mom and girlfriend about my aches and pains, etc., and then I thought: I have had moments before, where I wondered how I would function emotionally when I was no longer able to work, and when I wasn’t able to cook for myself properly (but I can still operate a microwave!, and the stove on a good day, but not so fun when I can’t stand or sit without resting my head for long with out a lot of pain, fatigue and dizziness). Anyway, I’m OK. I’m still here! I’ve been having a string of bad days, and I’ve been pretty gloomy about it, but if you can sit there and smile, I’ll be OK! I guess I’ve been rather down about the thought of surgery not being such a viable option for me at the moment, and how much longer I may have to wait to even get to speak to a doctor who understands my medical problems. But you’ve been doing this for years already, dealing with doctors who don’t understand, and doing everything imaginable to try to get to the ones who do. And there have been some successes! It is perhaps my Mother’s voice in my head that requires me to consider the sometimes sickeningly optimistic, but there are always positives to be found. People do survive through Chiari and other serious health nightmares, and come out the other side, though there never really is another side, to be extremely enlightened, courageous and remarkable! 

Dear friend, I am amazed by your strength! I’m so happy to know you :)

. . .

Wed. Jan.12, 2011
Dear right foot, why did it have to be you? You are on my good leg after all and I need you to walk. Maybe I have been relying on you too much, compensating for my messed up left knee for years. But right foot, you are supposed to be the strong one! Why is your middle toe all swollen and red? Why does it look like a little pink sausage? Why does this have to be so un-noticeable to anyone but me? Yes, all my toes always look a little like pink sausages. But this one right middle toe is really messed up! It hurts so much to put pressure on it. I hate having to walk on it. Right foot, please smarten up; stop hurting me! they can’t fix what’s wrong anyway.

Oh, how my neck hates to hold up my head.

*********************************Wait!!! I’m not done yet!**********************************

Look! A Chiari-specific “Do’s and Don’t” list to complement “Spoon Theory”:

"The Do's and Don'ts when Dealing with Someone with Chiari Malformation
1. Don't assume because I look well that I feel well.  Looks can be very deceiving.  Many days I look good but feel terrible

2. Don't tell me that you know how I feel.  No one knows how anyone else feels.  Two people with the same disease may feel totoally different.

3. We all have various pain threatholds of pain and pain cannot be measured

4. Please please don't tell me "it could be worse"...yes I know it could be, but I don't need to be reminded

5. Don't decide what I am capable of doing.  Allow me decide what activites I can participate in.  There maybe be times when I make the wrong decision and if I do I will know soon enough.

6. Don't be upset that you can't ease my problems.  It won't do any good for both of us to be miserable

7. Don't as me how I feel unless you REALLY want to know.  You may hear a lot more than you are prepared to hear.

8. Don't assume that because I  did a certain activity today that I can do it tomorrow.  Chiari is ever-changing.

9. Do learn everything you can about the disease because the more you know the better equipped you will be to know what to expect.

10. De realize that I am angry and frustrated at the disease...not with you.

11. Do let me know that you are available to help me when I ask.  I'll be greatful.

12. Do offer me lots of hugs and encouragement

13. Do understand why I cancel plans at the last minute.  I never know from one day to the next how I will feel.  Chiari is just like that.

14. Do continue to invite me to all activities.  Just because I cannot bike ride with the gang doesn't mean I cannot meet you for the picnic at the end of the trip.  Please let me decide."

1 comment:

  1. Hey Kristin,
    I hope you find the medical help you need, and that tomorrow, you feel better than today.
    I'm thinking of ya.
    Jenn Moore (Aultman)