1. I’m the same person as I was before I got sick, but now I’m wondering what in the hell happened to my life. After four years I still waffle around trying to figure it out, even though I know the answers aren’t there and some of the finest researchers in the world have yet to answer that very question. At my worst, in these moments of utter frustration, I feel very angry that my life as I knew it was stolen from me. You won’t likely see this side of me as I keep it tucked away.
2. I’m in pain ALL the time, BUT I block a lot of it out, deny it if you will. If you asked me what hurts, I’d have to stop and think about it. Even though I’m pretty good at blocking it out, it still controls my life and keep me mostly in bed. Pain ‘in and of itself’ causes fatigue and brain fog so when my pain levels soar, my energy and cognitive abilities plummet. The more active I am the more pain I will experience; however I must try to move to try to hold the fibromyalgia pain at bay. Those are two different pains constantly at odds with one another. At the end of the day, it all just boils down to pain, every day, all day and learning how to try to smile anyway.
3. I’m still bargaining with myself in disbelief. I hope with each new doctor that maybe they will run a test that hasn’t been run before that will show I have something else that can be treated, so I can get back to living my life as I’d like, on my own terms. Early on I even had dreams this happened. There’s a part of me that does this bargaining thing but my rational side knows that it’s MECFS. It knows I will have to wait along with everyone else to get treatment once the treatment is found.
4. I make a choice to be happy every single day. I’m a strong believer in the philosophy of faking it until you make it. Somedays I will literally force myself to smile for at least three minutes at a time and watch stand-up comedy. I don’t sink too low too often, but when depression tries to pull me down this is one of my top survival tactics and it’s always worked. Your brain can be fooled with your physical smile. It releases different hormones and your body thinks you are happy and sure enough, it lightens the mood. And I will say that my heart goes out to those of you who have severe depression. I wouldn’t wish it on my worse enemy.
5. Some days I just accept it all. I accept I’m sick. I accept this might be forever. I accept that in this moment I’m capable of X, Y, Z, but probably just X. It’s peaceful, but it’s a little solemn too. I find I feel better when I’m still striving to heal.
You might recognize those five confessions above as the stages of grief: denial, anger, bargaining, depression, and acceptance. They are just that. When your life sweeps you off your feet, how do you come back from that? How do you resume a normal life? What is normal? The truth is you don’t always fully process that grief and move away from it. You learn to live in each moment and be thankful for what you can do in that very moment of that very day. You try desperately to get better, while trying to maintain who you were before you were sick…to not let the illness take over who you are.
On an aside, I watched a great speech by Dr. Ron Davis of Stanford University over the past two days, wherein he presented a research update at the International Invest in ME Conference 13 in London. Watching him speak always makes me feel better. He feels genuine to me. He’s racing the clock for his son, and fortunately for us, the rest of MECFS patients too. He’s a brilliant man and what an honor to have him in our corner. Although I obviously wish the circumstances were different for him and his family, and for all of us. At one point he said it’s like we (MECFS patients) have fallen in a trap and we can’t get out and I just couldn’t agree more…that’s exactly how it feels. If you would like to listen to what else he had to say, feel free to click here.
Thank you for stopping by today. Hoping today is treating you kindly. This month the World Watercolor Group daily prompts are recognizing the National Day’s, like September 16th was National Guacamole Day. It’s kinda fun to be thinking wayyyy outside the box.