When you see me, I will always smile, ask you how you are and share a kind word or compliment. If you are sad, I will listen; if you are happy, I am happy for you. In fact, I love people, listening to them, helping them and bringing happiness to their lives when I can. All of this is the essence of who I am and is all very genuine. Except for one thing.
My smile is fake. While the intent of it is real, the spirit behind it has long since abandoned me. The reality is that smile pasted on my face actually takes quite a bit of energy. Energy I don’t naturally have anymore. Smiling is a conscious effort now. Also, as truly and deeply interested I am in what you are saying, actively listening is also a conscious effort. It’s a conscious effort to follow along in our conversation, share in your joy or sorrows and even just plain remember how the conversation started and what all you said. Sometimes I can literally feel my energy level slipping away during our conversation.
Needless to say, having an invisible illness has its up and downsides. On the upside, while inside I am battling myriad painful symptoms, from outside appearances I am right there with you. And I really am. It’s amazing how talented you can get at this odd form of multitasking.
What I have found is that there are two keys to success for me: energy conservation and prioritization.
Occupational therapists are amazing at arming you with strategies to minimize your energy usage in just about every daily task. Implementing one of them may not seem worth it, but incorporating many of them into your entire day all adds up to “extra” energy and truly makes a difference. Don’t get me wrong, I’m still exhausted by the time my day ends, but it does make my day go a bit smoother.
Secondly, energy prioritization dictates everything I do. My day, and the next day, are all well planned out. If I have to work the next day, I plan ahead to make sure I have enough reserves to not only successfully work that day but to do so in a way no one can tell I am in pain or exhausted beyond words. The few times a month I meet a friend out, that too takes a lot of preparation. I will make sure we aren’t doing anything that will put me in a too loud, too cold/hot or too bright of a situation, among other things. Often, I will also lay down for hours beforehand.
All this preparation yet I know I may still pay the price the next day with a flare-up of symptoms. But it’s worth it, because my friends that have stuck with me through this mean the world to me. They are the motivation that keeps me going, the extra support I need on a bad day and the social interaction I need when my condition has caused too much isolation. They are simply priceless!
Life is full of give and takes; we all make these type of decisions. It’s just that those of us with myalgic encephalomyelitis make these decisions on a more day-to-day basis and at a much different level. The myriad symptoms myalgic encephalomyelitis presents creates a tricky guessing game you can never really fully predict. With determination, diligence and focus though, you can find ways to prevent some of the flare-ups or minimize the effect of them. As with anything in life, you learn the odds, place your bet and hope for the best.
I play to win!
Thinkstock photo via Dynamic Graphics.