Unrest - an award winning film about Chronic Fatigue Syndrome
It's the most challenging of all the challenges I go through with my Parkinson's/Dystonia brain and body. The twisting and even the dystonic storms are tolerable, mostly. I'm getting used to the slowness and heaviness of my physical body. Though the ease in which I can choke is disconcerting, I'm learning how to manage this. It's the exhaustion that gets to me.
It's this which helps me relate to the experience of people with Chronic Fatigue Syndrome. When I saw this description on a facebook post:
"When you are chronically ill, grief is a constant process. Lately, I've been doing better. My treatment regimen is working. I haven't truly crashed in months because I've charted every millimeter of my invisible fence. Within it, I am well enough to forget just how sick I truly am. When I forget, I get careless, and when I am careless, it all comes screaming back again." ~Jennifer Brae
I read over it three times. Yes. Yes yes yes yes. This is what it is like. When it doesn't affect us 100% of the time, it's hard for other people to understand. "You look fine to me" "But you do all kinds of stuff" "You have Parkinson's? I would never have known". I don't get upset about people not understanding this. Heck, I don't understand it. I feel normal today so I get stuff done which I've been wanting to get done for weeks. I never know what will throw me off. What is too much? Where is my invisible fence?
Jennifer Brae has made an award winning film about Chronic Fatigue Syndrome. It will be showing in Denver on April 8, 2017. It is called Unrest. I'm getting ready to order my tickets now.
I still chuckle when I think of the person who advised me to never say I'm tired. That's too negative. I should say, "I'm relaxed". HA! When I'm relaxed, I'm not tired. When I'm tired, it means my body has decided to do things without consulting me; things like getting into a virtual bar fight and getting sucker punched over and over, trying to imitate the girl in the exorcist by seeing how far around my head will turn, and twisting up into the "I lost at Twister" pose.
We have to pay attention to our bodies. If I don't really and truly pay attention to the signals my body gives me to slow down, I will crash and be in bed for days. No, not relaxing tired; it's the kind of tired you get when you've got a bad case of true influenza, without the coughing or sore throat, but with headache, muscle aches, feeling shaky and weak, and heart starting to beat faster kind of tired.
There's a fine line between positive thinking and denial.
Yeah, I get it. There's also a fine line between being aware of our body and being self absorbed and overly anxious about every little twitch. Most of us went years without a clear diagnosis so being too self absorbed and anxious is understandable. It's mostly because we are or were trying so hard to understand what's happening to us.
I don't grieve a lot for the life I had before I had Parkinson's. In many ways, it's just gotten better and better. When I do grieve, it's because of the exhaustion. I want to have energy for my family. I want to have plenty of energy for our grandkids. I don't want to just be present, I want to be present and active as much as possible.
We're fostering a little Chihuahua/pug mix dog for Life is Better Rescue. Viv is the sweetest little dog and is fairly calm, most of the time. We discovered what happens when the door opens and she gets out. She took off so fast yesterday, I was scared we'd lose her. I get it, Viv. That's sort of what I do when I feel good and the door to my energy is open. I'm outta that invisible fence and off down the road before I stop to realize just how far I've gone. I've resorted to putting a leash on Viv if we're expecting people over. This way, if she makes a dash out the door, I may be able to step on the leash and prevent her from going too far.
Hopefully my family won't do the same to me! Maybe I shouldn't give them any ideas.