I've been all over the map on updating this blog. Nothing for months then boom: post-post-post-post-post! Let’s call it one of the many pitfalls of chronic illness. It’s lower on the list than pain and exhaustion but it is still in the running as I mourn the loss of stamina and ability to plan out everything. But, I digress. Today I dragged my butt up and in front of the computer for a few minutes to get this up, having spent the last 48+ in a dark room with a throbbing head, in the grip of the unforgiving MigraineBeast.
I've spent many posts talking about doctors, pain and dismissal by the medical community, but this one is a little different. This is about the hole that is left when you become chronically ill and finding ways to fill it. That place where careers, and plans, and being able to run about town used to go--that place that your body can physically no longer carry you--and what to do about it.
I used to have a full life, a thriving career and an active social life. Then my chronic illness (es) ground down many of my abilities and I could no longer hold on to the job that I loved and my activities shrank to time in bed punctuated by a never-ending stream of appointments with doctors and specialists (and the occasional hospital stay).
If you have read any of my story you know that part of this deterioration resulted in a move back to my home town. While I cherish being closer to my parents, it took quite some time to get used to days that were not full of tasks and plans. And when days did have plans, I more than likely had to cancel due to poor health. I, like many others living the #chroniclife, usually had to make plans with the caveat: "depending on how I feel that day." I also went from living in car-centric Los Angeles to rarely driving at all.
It's hard to describe how much this loss of independence at age 36 hit me.
In these the past four years, I have lived on a bit of a roller-coaster, though it seemed like the dips were winning. I had another brain surgery for Cushing's, and my migraines went from episodic to chronic, likely as a result of my second brain surgery years ago.
It's taken a lot of trial and error to find something that works for me. And
But My Chronic Brain has given me a piece of that back. I get to work with a team (and all are chronically ill, so we all know and respect the boundaries of continual down-days) and I get to usethe skills from my old life for a cause that is important to me.
You guys, I really cannot express how much this means to me. Everything turned out so beautifully, and is such a great resource for others that are suffering. In addition, it helps that part of me that longs for the old normal me, the one that is not constantly broken by chronic disease. Reminded every time I have to cancel on someone, fall asleep in the middle of the day in a completely dark room, or toss and turn, hoping that something will take the pain away.
Thank you @mychronicbrain, you’ve helped me more than you’ll ever know.