Chiari Malformation can be such a pain in the neck! Literally. If it isn’t pain...who am I kidding, there is always pain. As if pain isn't enough there is the brain fog, hands tingling, off kilter balance, headaches, anxiety, and vertigo. It can never just be an easy day. Toss in a little menopause, hot flashes and some mood swings and you’ve got Chiari in overdrive.
It’s hard to explain to people why it is I can’t do certain things. One day I may be fine to do the grocery shopping or go to lunch with a friend, to drive long distances or move from the couch to the chair. What would take others minimal effort to do, like bend down and pick up trash, would take me 50 percent more energy and concentration because that is how Chiari impacts me. I don't look like I am in pain, or at least I try not to. But, there are days that I just can't hide it, not even from myself. I get the questions, “Why don't you take medications?” Well, there is no medication to cure Chiari, only to help lessen, not alleviate the pain. Then they ask, “Why don't you have the surgery?” Hmm, I wonder, why wouldn’t I want brain surgery?!? I don't like medications and I don't want to be on them. I don't want surgery (decompression surgery) because at the moment I can cope with the pain and other fun symptoms that Chiari brings. I know one day I will feel otherwise and when the time comes I will make the choice to do whatever I need to do to live my best life. Or at least a better life than what is happening in that moment.
They say pain changes people... I’d agree with that. I am definitely not the same person I was before my diagnosis. Chronic pain is only a fraction of what Chiari has brought into my life. I’d say the pain I experience has made me a stronger person on the outside, but a hot mess on the inside. It drains me. Physically, emotionally, mentally...drained. My body wants to move and be active but brain is saying, “Bite me!”
Three years ago I would have told you I had my life figured out. I had everything I needed to be happy. My family and I were not living a lavish lifestyle by any means but the bills were paid and the refrigerator was rarely empty. I was a young mom with a decent amount of energy to keep up with the kids. I had this vision of growing old (gracefully of course) and guiding my children into adulthood, smothering them with all of my knowledge and advice. Enjoying their milestones and being present for every adventure life took them on. I didn’t know three years ago how drastically my future plans would change and the things I would miss out on, or the things I would have to struggle through just to be a part of my children's activities. Things are quite a bit harder now. I am in physical therapy, where I am learning to push past the pain and strengthen the muscles in my neck, you know, to allow for the extra brains in my head. My advice today to all of you who love someone fighting an invisible illness and struggling with chronic pain, “Smiles are like band-aids. They can cover up the pain but it still hurts.” Be kind, you don't know what others are feeling or how hard it was for them to show up.