Several months ago, I was inspired by our fellow TOSer, Teran (previous guest post here), who ran a marathon and posted in a facebook TOS support group about her accomplishment.
What struck me, and pushed me out the door to start walking, was when Teran said, "you are not in the waiting room of life." I'm thankful she motivated me to get moving through the TOS pain, because it led to being able to meet and walk a 5k with another fellow TOSer, Sabine.
I saw on a TOS support group that Sabine is a fellow TOSer and a runner who lives nearby. So we picked The Yule Run I'll Walk 5k to meet and walk together. I'm so glad we did!
It was a drizzly winter night for the walk, but not snowing and blowing, so we lucked out. I had more nerve pain than usual for the walk, from a combination of the chilly rain, a touch of anxiety that always makes those trapezius muscles tense up, and a new exercise I've been doing that has irritated some things. You can see we both made sure to have our TOS necks covered and warm!
The path had a pretty christmas light display, but was treacherous to walk in spots from the recent snow storm. I was glad I wore the plastic grocery bags on my feet between layers of socks, even though we laughed about how fat it made my ankles look.
As we walked, we talked a bit about our TOS issues. Sabine shared more about how she was diagnosed with compression, Paget Schroetter Syndrome, and treated for a blood clot that caused her arm to painfully swell and turn purple. She has not had surgery to address the compression, and I understand her fear very well. If you do much reading about TOS, especially on any forums, you see quite a mixed bag of results from decompression resection surgery.
We were keeping up a pretty good pace walking and talking when Sabine asked me if I ever have pain or problems from turning my head to one direction...and then we switched places as we walked because we were on each others bad side! The funny things you have in common with TOS.
It was great to discuss TOS issues and ideas for raising awareness with someone who understands because they live with it too. We commiserated about people thinking we don't look like we have a pain syndrome, and how frustrating it is to not be taken seriously.
We talked a bit about our common headaches and sitting with head forward posture as a problem that makes pain flare up.
We agreed that we both have to sit directly in front of the TV, no turning the head even slightly to the side for very long. And when we parted, she gave the gentlest of hugs.
Here we are at the finish line with our Ugly Sweater Mugs. According to Sabine's awesome sport watch, our distance was 3.20 miles, average pace 15:16, best pace 13:32, total time 48:51...not too bad considering the slippery conditions.
Had a little achy arm and hand tingling on the drive home. The morning after the 5k walk, nerves are twitching from my armpit down into my hand, increased neck and head tension, upper traps are unhappy. But it was worth it!
I highly encourage all my fellow TOSers to connect with others who are living with similar physical issues. Sharing our common bond (and the things that help us to adapt and live well-even with TOS) gives me some hope and helps me to not feel so alone on this peculiar journey.
May you also have that same hope.