I’ve hit another road block…bump in the road…hiccup…setback. Call it what you want – it sucks (I hate that word too!). After spending the day with my neuro we tried to pull together yet another plan.
When people ask how I am the automatic response is “Okay.” People close to me know the truth and know that “okay” is far from my reality. My noodle is so messed up that I cannot even begin to explain the multitude of issues. Why even try? So, I say “okay.”
I have some form of head pain at all times. People cannot grasp that…ALL. THE. TIME. I may look okay, but there is a war going on inside. On a good day I have a pain level around a 4, and it may increase throughout the day. If I am lucky it lingers there all day. Some days I reach a 7 or 8 and work extremely hard to hold it together. I wake up with pain – I function daily with it – and I go to sleep with it. A large majority of the time I am awakened by it as well. Insomnia is one of the worst issues I face right now – insomnia as a result of monumental pain no less. The nighttime always seems to be the worst. I often go days and even weeks with no relief.
Take medicine, people say… Don’t suffer, or That’s what pain meds are for are common things I hear. It’s not that simple. There are no medications that have worked for me. Pain meds are a crutch for people and can cause so many worse things in the end. Trust me – they aren’t the answer. Medications can be thrown at the problem, but they come with severe issues often. When you’re treating the brain it can get kind of scary. Ask me what I learned about Stevens-Johnson Syndrome as a result of one med. Fun stuff. Meds are great if they work.
Recently my intractable head pain has taken on a new personality. Go ahead and laugh. It may sound weird, but my pain has a personality and it adapts to situations. Pain gets so bad that it begins to shut down things…like my vision. Pain will not be ignored. It wants me to be aware that it is there and setting up camp in my brain again. So now it does things like create hemapalegic issues to frighten me. The stroke-like symptoms are worrisome and debilitating. Try making dinner for your family when you can’t move your arm. Pain is unpredictable and unrelenting.
I’m on that rope and clinging to the knot at the bottom now. I do and try most anything to lessen pain’s grasp. I love my essential oils because they can give me a small window of calm. I love my bed and surrounding myself in pillows and comfort. In a few days I am going out on a limb and trying hypnosis. Yep, I’m there…swinging on that rope. I’ve read quite a bit on hypnosis and the success it has on chronic pain issues as well as insomnia. The psychotherapist doing it is also well-versed on acquired brain injury and disease. Who knows…maybe I will bark like a dog when someone says hello. All kidding aside, maybe I will see even the slightest relief.
A fellow Hopkins patient had great success with a medical device that generates micro-impulses and neurostimulation to the trigeminal nerve. It ultimately produces a sedative effect. In a few days I will sample the device to see if there is any hope for me. If not, there is a last ditch effort that we have in our back pockets.
One of the theories is that my brain acts similarly to phantom limb syndrome (and I do see the humor in that statement). Over the many years of illness and surgery my brain has adapted to the pain process. It does not know how to be normal (again…it know, it’s funny). It’s as if my brain needs to make a new connection. A reset button needs to be hit, and my brain needs to CTRL, ALT, DELETE itself.
I’ve learned so much about myself and all of this crazy mess. I look back and cannot remember “the before.” I told my mom just yesterday that I was just living life without a care, and then this colossal thing happened. This may be your way of life now is NOT something I can easily accept. So if you see me and ask how I am…call me out if I lie and say “okay.” Tell me you know that my struggle is real and there. Ask me what that pain bitch is doing to me today…I’ll love you for it!