Monday, April 15, 2013
Recently, while talking with my therapist, I began thinking about the realities of my life with fibromyalgia. I thought I might do a blog post about that but the more I considered how it impacts my life, the more overwhelmed I became. It seemed impossible to list every reality, every change.
I mentioned this to Heather a night or two later and she said, "How about ten ways. The post could be titled: The Top Ten Realities of My Life - A.D. (After Diagnosis)." Heather recently got a new job, a career really and she was on fire with creativity so came up with this awesome title.
Here is my list of realities but I'm not sure they are in order of importance. Even trying to sift through them all to find the top ten is too difficult. Nonetheless, it is a list to start with.
1. Pain. It has become my new normal. I do not remember my life without feeling pain every day. I miss even the memory of that and I'm not sure when it faded away.
2. Exhaustion. I never feel full of energy, like I can do everything I want or need to. I'm angry over the limitations fibromyalgia has placed on what I can accomplish each day.
3. Medication. I do not like taking prescribed drugs to control symptoms of this disease. They are pain and muscle relaxing medications and I worry about addiction issues. I've fought addiction my whole life because of my parent's problems with it and now to feel forced into taking them is frustrating and frightening.
4. Existential Crisis. This is what my therapist calls it. Basically, I'm scared because I feel that my very existence is being threatened by fibromyalgia. I'm frightened that fibromyalgia will make me bed ridden, wheelchair bound, give me dementia or Alzheimers or ultimately be fatal.
5. Expectations. I often times feel as if I spread myself too thin, trying to be there for everyone, have time with them, fulfilling what I perceive to be their expectations of me. When I think I've dropped the ball on any of that, I see it as failure in myself.
6. Control. Having a disease teaches you that control, in many areas, is a myth. Something can happen to us without asking permission, without our giving it. I need to control how fibromyalgia is affecting my life and sometimes, I simply cannot. As hard as I fight on every level, sometimes the disease wins because of pain and exhaustion.
7. Grief. I miss me. As much as I know that who I am, the base personality is the same - how I'm allowed to live my life has drastically changed. I miss the Jody that was always on the go, conquering anything set before her, working hard and taking a sense of pride in that. I miss feeling like I was strong. I don't want to grieve my old life and learn how to live this new one but I must.
8. Communication. I have a difficult time sharing what bothers me, with others. I would rather hide it. Hide the pain, the exhaustion. Hide my tears - cry in the bathroom, alone. I need to be the rock and the strength of my family. I don't want them to worry. I feel weak when I talk about fibromyalgia. I get tired of people thinking they can fix me - they can't fix a disease so please do not try, it's frustrating for me. Just know how hard it is for me to open up and when I do that, all I really need is for you to listen.
9. Stability. This is physical and emotional. Physically, I never know when I'll have a bad or good day within the disease. I don't know when I'll have a flare. I can no longer plan - not just weeks or months in advance but tomorrow. Emotionally, I want to find a place of acceptance, of peacefulness in what my life is now. It's still beyond my reach.
10. Confusion. My life has been turned upside down. Like a puzzle that was once put together but is now scattered across the table in pieces, I try to fit them together and make the picture clear again. And I wonder if that picture will even make sense to me when it's complete.