Zebra Seeking Spoons

One of the symptoms clusters I’ve been getting more and more and HATE is tinnitus, blurry/lost vision and dizziness. They happen all at once and if I’m lucky I’m near a supportive person like my Momma or a wheelchair otherwise I’m almost always bound to fall and hurt myself. The other day I tore up my knee and hand, a few days before that I smashed my head into the night table. We are doing different tests to try and figure out what’s causing it, and so far they all have come back normal. However it likely has to do with the cervical instability and bone spurs in my neck, but they can’t always be seen in a scan.

It’s just so frustrating! I’m already very limited as to what I can do without crutches or a wheelchair and with these episodes I am not capable of doing anything. Plus I can never see them coming there isn’t any common theme as to the triggers. Chronic pain and chronic illness are so damn lonely.

I am so happy to announce I got the room at our community center in town to hold our first in person local support group for Ehlers-Danlos Syndrome. It started from a Facebook group post and I’ve been able to put in the work to find us a spot that is comfortable enough that we can meet for an hour even in pain and get connection and support. That’s something I’m always running short on. To have people I can see in real life who totally get it makes all the difference in the world. In the mean time just taking it moment by moment and thinking positive.