Note: I started this post a while ago but wanted to acknowledge the recent events that have happened. I have a best friend and family in Boston and am glad to say they are safe. Even with all the attempts to implement fear and terror by a few crazy people in society, it is always amazing to watch the response that happens time after time after time. Love and strength unite people together to stand up taller, stronger and heal together. As they say “Love Conquers All.”
This is rather late. I am doing well now and have lots to share but I meant to put this up a long time ago. Things happen. So I shall backtrack with the recent journey.
Sometimes I think chronic illness is impossible for someone to grasp unless they have experienced it or have a loved one that has been affected. I don’t blame them. I know I had zero idea what it was like too. My roommate in college had endometriosis and I felt like I was walking on eggshells because I didn’t want to say the wrong thing. Now I know there was no need for that. I think something as severe as CFS scares people. Others just don’t get it. I had one friend from high school ask me (in a nice way) if I had cancer. Gee. That was a first. Why ask that? Well, clearly, it must be the case since I never had a definitive answer that I am doing better or any definitive answer about my future plans. So basically if you’re that incapacitated, people think it must be cancer or you have just gone off the deep end. Eh, makes sense.
On the contrary, I have had the opposite where the endless amount of sadness and pity that comes from someone just makes me flat out uncomfortable. Really! It’s okay! We can talk about it. Your discomfort is not mine. We don’t have to pretend it’s something so hush hush. But I get it. Illness makes people react with fear. It makes us face the vulnerability and fragility of life. We live in a society that is used to magical “fixes.” It’s scary to realize there aren’t always magical fixes.
I have come to realize how much that response has resulted in me trying “protect” people because of these reactions. I’ll downplay things or sort of blow them off. I try to take care of everyone else instead of me, a lesson I have learned over and over from this illness. So this last recent crash, I decided to be real and it felt good. I gave an honest response when people asked how I was. I didn’t downplay how hard the week was. I was real. This affects every single system in my body: immune, endocrine, digestive, nervous, circulatory, etc. When it goes full blown, it can be a journey through hell and back. The plus that I have learned is the other side is always brighter than the last time and there is always a new lesson to be learned.
This crash wasn’t so bad because of the length of it; it was the severity of it. My brain can become just as easily over stimulated and exhausted as my body. I missed all my warning signs of “you’re pushing the envelope” because I was doing all mentally stimulating things, not really physical. I saw a friend who was home for Easter. I spent time with my Aunt who was visiting for the holiday. I visited with family. I was already running on a low gas tank from the trip back home from Florida. But I was enjoying myself so didn’t really think about it. I would go to bed exhausted and wake up feeling okay so I presumed that I was fine. It wasn’t until I was driving on Easter that I realized “oh no.”
My threshold for any sort of stimuli, lights, sound, etc declines rapidly as my reserves start running out. By the time I got back home, I knew I was way past the empty sign on the gas tank. My brain was in so much pain and my tolerance for anything was gone. I felt like I had a concussion without the hitting my head part. I had to lay in the pitch black for two days and was pretty non functional for a week. I could barely form words or hold a conversation. I couldn’t tolerate light, sound, people talking, or really anything for that matter. I simply just had to lay and do nothing. Even meditating was off the table.
It is very eye opening to have an experience where everything is stripped like that. The only thing you can do is to be with yourself. When you don’t have any other distraction to immerse yourself in, you don’t have any other identity you can be at the time (a daughter, a friend, an employee, a girlfriend, etc) it leaves you with a time to reflect: “Who am I?”
We live in a society that is so used to “doing.” We define ourselves by our jobs, our roles, all the things we DO. We don’t really know anything else.
I realized my answers reflected exactly what was going on: I am fear. I am frustration.
I was fighting with what was and was making it 100x more difficult than it needed to be. Fighting won’t change anything. That’s part of the reason I ended up in such a severe state because I was resisting my warning signals. And after I have done enough reading, learning from others and spent enough time in this journey, I knew what my choices were. Resist or Accept.
I “softened” and accepted the situation. I let go of the resistance and breathed into the discomfort. I know it sounds counter intuitive but I “welcomed” the symptoms. I welcomed and accepted my throbbing brain. I breathed INTO my exhaustion. I mean after all- it is your body in this discomfort, not some foreign alien inside of you. As soon as I finally relaxed into it, things changed, they “softened.”
This can be done for anyone at any time. This can be done for a physical issue or an emotional one. Maybe you’re having a bad day, maybe you have a headache, a stomachache, maybe you feel down, maybe you can’t sleep. Check in. Are you resisting? Are you fighting with yourself? Are your first thoughts: “Oh No” or “Go Away” or “This is stupid” or the common, “Not Again!” Breathe. Ground. Soften to it. Try accepting it. See what happens.
This time as I lay there thinking: Who am I? The answers unraveled:
I am love.
I am strength.
I am joy.
I am peace.
And nothing can ever change that.
As we continue into spring, as the flowers begin to bloom , the grass begins to grow, take a second and pause. If all your “external” identity was stripped, your job role, your title role, your caretaker role…can you answer the most fundamental question: Who Am I?
Lesson 1: “The best way in life to be is to simply be” (Yogi Tea Bag)
To Be Continued…..
Real Spring Cleaning.
Rhodiola- my favorite herb
Balancing the Nervous System
**Please note: For those that are always saying: what can I do? My answer to you: simply read a bit about CFS. Educate yourself. It takes five minutes. That means more than anything else. I appreciate so much when someone says “oh yeah I read x article”
Saying that “there must be a pill or something” “have you tried hospital z” “you just need to get out of the house” just makes it seem like you don’t really understand the current illness I am dealing with. It’s complicated, even for the science field and I understand that. I do not get angry like some people because I understand everyone means well. I am so grateful for that. But this is my response for those who are always so determined to want to do something. A little understanding makes all the difference in the world. There are plenty of links on this site under CFS. If you feel really inclined: Donate to http://www.cfids.org And most importantly: you don’t need to be on eggshells!
Photo Credit: http://www.spiritvoyage.com/blog/index.php/kundalini-yoga-for-the-spring-equinox/