I will be 27 months free tomorrow. It’s been quite an adventure healing from the damage my prescribed dose of clonazapam did to my brain and body.
I am having more hours of normal, for which I am exceptionally grateful. I can now think more clearly, and my emotions are returning to normal size. My body is still fighting to heal, and I do wonder if I will ever be rid of all the symptoms, or if I have slid over into the CFS or Fibromyalgia zone. I hope it is still “just” benzo withdrawal syndrome, and that one day, all the remaining symptoms will vanish.
What I still have: burning or painful spine, bone pain, joint pain, muscle pain, tingling, electrical zaps, whole body jerks, blurry vision, muffled hearing, ringing ears, head pain, head pressure, bee sting feelings all over body, painful bottom of feet, tight band around head, dizzy, weak, woozy, extreme fatigue, broken sleep and insomnia. I still have times of high anxiety for no reason, feeling suffocated, chest pain, bicep pain, jaw and teeth pain, burning tongue, and painful red eyes. Sometimes I get itchy in places, (last night it was my right forearm) and sometimes I get blisters on my skin for no reason. I still have muscle twitching too. Now that I write all this out, I can see I have healed some things, but I have a long ways to go.
Many of you write to tell me that you are tired of defending your illness to family, friends, doctors, etc. I know. I am too. When I have good hours, (and I have more and more of them) I don’t look or act the slightest bit impaired. When I feel like crap, I STILL don’t look impaired. You would only know I don’t feel well because I would bow out of doing something I wasn’t up to. People who have not lived through benzo withdrawal syndrome have NO idea how hard it is to battle to be normal, and how tiring it is that this illness keeps going and going and going and going and going and going and going and going…..
I am able to do more. I am doing my best to get my non-profit created. I am convinced that the universe will conspire to send me the right people in my life who will help get my therapeutic garden off the ground for the whole community. I am also blogging about the social neuroscience of innovation and putting my hat into the consulting ring. So, even though I am still suffering symptoms, I am not sitting at home in a dark room wasting away. I do have a life, even if it is a very small slice of what I was able to do before I began this healing journey.
For those of you just starting to get off of your benzo, I wish you all the best. I hope you are working with a doctor that understands that slow and steady wins the race and that any symptoms you have as you taper and or once off, are NOT automatically “your underlying anxiety, or even a “new” mental illness unmasked. (most likely it is the damage from the benzo per Dr. Ashton’s research and many thousands of us who have discovered that to be true) I hope that once off, you can maneuver through the ups and downs of this syndrome.
I am going to celebrate tomorrow’s freedom from one of the most addictive and damaging drugs on the market… klonopin and its generic clonazapam. I wear a medical ID bracelet that NEVER comes off my wrist, warning medical personnel to never, under ANY circumstances, give me a benzo. Not even if I am flopping around like a fish out of water. No. Benzos. Ever.
I have a ways to go, but little by little, I am getting there. You are too. Keep fighting.