When the headaches began they were small blips on the radar and as time went on they became longer, stronger, and more debilitating. Three and a half years after decompression I still suffer from headaches that keep me laid out for days. I still have nausea that may be one of Earth’s most powerful sensations. Added onto the melody of Chiari head woes is the harmony of other dysfunctional systems of my body that cause discomfort or limit my life.
Everything in my body did it’s own thing after my surgery. It has resulted in three years of painful tests/procedures that often are repeated or are peripheral but need to be looked at. I have been poked, prodded, electrically stimulated muscles, the endometrial biopsy that almost made me rethink life, and most recently this colonoscopy and upper endoscopy.
I won’t ruin all the fun because this is going in the other blog
Needless to say, they use the word “discomfort” in a VERY deceptive way!
There are times that my body is stewing in pain and at some point it doesn’t matter because everywhere hurts. I prefer to stay home and experience this feeling where I can complain and fall asleep. There are times when I am able to distract myself but I am often left alone with the pain. Not that there aren’t people around me who care for me, but no one can really come inside my body and help me bear the burden of pain.
These are the times I talk to God and wonder how I am supposed to be of any use to the world if I am laid out in pain. I am at the point of giving guardianship of my daughter to my sister because I need to be able to get through this time in my life without scarring my daughter. She has had to deal with a lot, so we all agree that it is in her best interests to be away from the medical whirlwind that is my life. Luckily, she will be staying in the state and so we can still hang out and have a close relationship.
Chiari and all of it’s baggage has hurt my body, my emotions, and my mental state. It has taken two years of therapy (psychologist and psychiatrist) to realize that the past is gone. I will never be the old me. My body may always hurt, but that doesn’t mean that I can’t learn to cope and make the most of my better days of health. I just chaired a walk and I am still recovering because I had this procedure three days later. These days I have to remind myself that even in my pain, I can draw a picture of how I feel and write about it and that will help me to be distracted and to hopefully form some sort of memory. At the very least, an accurate record of what I did and how I felt about it.
The pain of my Chiari has managed to infiltrate every part of my life and body, but I am not going to let any of what is happening to me stop me from talking about it, spreading awareness about it, and getting out to make things happen. I realize that nobody knows who I am, but in the next year I hope to change all of that. I encourage you to take an action to spread awareness or to educate. Blogging is a great start and you can find many ways to advocate. It’s time to change the face of patient care to something a little friendlier and more accepting and understanding. I am not sure if I am a log, tinder, or a match, but the fire will be lit and I will be there fighting for better care. It’s time to infiltrate Chiari, learn it’s secrets and destroy it’s secret lair.