Ah winter, with its cold winds,
blasts of snow and short days. Cold
weather can be very cruel to Chiarians; it can feel like you are being attacked
by the environment every time you leave the house. Basically if you have Chiari then cold weather
is your enemy. For me the worst is
waiting for the car to warm up. For some
reason being in a cold car makes my entire body shake and tense up which wreaks
havoc on my neck which in turn causes intense Chiari headaches. Such fun we Chiarians have, if it’s too hot
we end up with headaches and worsening symptoms and if it’s too cold we end up
with headaches and worsening symptoms.
Ok, enough of that talk about the
bad things that happen due to the cold, I want to talk about having fun during
the winter, and this has been a winter full of fun. Last year I couldn’t join in the fun winter
activities because I was in too much pain.
Just walking from the car to the base lodge at the mountain left me
exhausted and in so much pain that all I wanted to do was lie down. This year I may be in pain, but it isn’t as
bad and it isn’t stopping me from joining the fun. So far the fun has included sledding, skiing,
and ice skating.
Sledding…I hadn’t done this in
years. We did this on our friends’ road,
yes their road. They live at the top of
a hill (some call it a mountain) on a private road that has a nice incline to
it. I don’t know what was more fun for
me, watching the kids have fun, watching all of the adults acting like kids, or
the actual sledding.
Ice skating…Another thing I
hadn’t done in years. Sure it was -5° but we had a great time. And when the scenery is the beautiful
Adirondack Mountains in Lake Placid you can’t
go wrong no matter how cold it is.
Skiing…I was so happy when my
neurosurgeon said I could ski after the surgery. Not being able to ski last year was
heartbreaking. This year I couldn’t wait
to hit the slopes. When we got to the mountain
the feeling of excitement and anticipation was replaced with doubt and anxiety.
As I was putting on my boots that little voice in my head began to try and talk
me out of what I was about to do. It
went like this:
LITTLE VOICE – Are you really
going to do this?
ME – Yep
LITTLE VOICE – You’re crazy, you
had brain surgery less than one year ago.
ME – Being called crazy is
nothing new for me, now shut up!
LITTLE VOICE – What if your legs
give out, what if you fall, and what if you crash and hit your head.
ME – What if I listen to you and end
up regretting that I didn’t even try?
That would be far worse than any injury I might inflict on myself. I’m done listening to you, I’m not going to
let the fear you try to instill rule my life.
Screw you little voice I’m ready to hit the slopes.
I’m so glad that I didn’t give
into the doubt and fear that I was feeling before that first run because being
back on ski’s felt great and I had a blast.
I ended up having one more conversation with that little voice when my
son asked me to go on a faster more difficult trail with him. Once again I was able to shut down that
little voice and I’m so glad that I did because I had a great time making the
longer run with my son.
Other than having fun, what is
the one thing these winter activities have in common? While I’m doing all of these things there is
no bad reaction to the cold, no Chiari, there is no pain. You read that right, there is no pain. I can push the pain away and there is just
pure enjoyment. I can forget about my
constant companion and really enjoy life for that brief period of time. I guess winter isn’t that bad after all.
Oh, just in case you’re wondering…yes
I now wear a helmet when I ski, I’m not that crazy.
Just found your blog....I am a fellow Chiarian/zipperhead. I loved your description about lying to people to their face, when they ask you how you are. I had a decompression surgery 8/12, and a cervical fusion, then two more surgeries in 2013, because my own body decided to grow superfluous bone between the rods. I am in Glens Falls NY. and yes, I still have headaches. I hate the barometer. Hate it. Enjoyed reading your blog........sometimes it is hard to talk about to people who have no clue.
ReplyDeleteHi Hilary. I'm glad you found my blog. I hope your recent surgeries will be your last. It's nice to know I'm not the only one that hates the barometer.
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