I find that the most difficult aspects of dealing with CFS are almost impossible to articulate. That’s what makes them so challenging…
1 . Doctors and friends only see me when I’m at my best. They don’t see me when I’m holed up at home unable to go out. So it’s difficult for them to understand how serious my condition is.
2. You need your brain to solve this problem but you can’t quite access your brain.
3. Like any crisis, CFS is tough on the relationships in your life. But the added complexity of being in a misunderstood crisis seems to bring the worst out in some people. I call them Chronic Fatigue bullies.
4. It makes you more tired yet pushes sleep away? That’s messed up!
5. Life is unpredictable but CFS magnifies that ridiculously. I could plan to do something on Saturday that I can handle on a good day. But is Saturday going to be a good day?
The good news is
1. I’m finding out who my real friends are. And they’re amazing!
2. Stopping and taking a breath in the middle of a difficult moment is extremely powerful. I would never have discovered this if I’d had the strength to roar back at, say, somebody’s inappropriate behavior. Things shift, space opens up, solutions present themselves.
3. The career that I’m building out of necessity is going to make for an amazing life when I’m better. Actually amazing has already begun.
4. I’ve discovered blogging!
5. People like to tell their children that they can be whatever they want to become. But the hard part is knowing what that is despite a world that might contradict aspects of who you are. CFS has made the stakes so high for me that I’ve had to absolutely give up any idea of what I’m supposed to be and just be who I am. It’s an ongoing, challenging process but Chronic Fatigue keeps me motivated and the rewards are brilliant.
WEGO PROMPT FOR THIS POST: Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.