I agree, everyone is suffering in some way, as is the human condition. But for now, I am going to talk about pain. Be prepared to check out one sentence in.
I wake up. There it is. The pressure in my entire skull, the tightness in my neck. The intense, dull, very unhappy feeling in my forehead and at the base of the back of my head. I describe it as having a heavy football helmet, that is too small, jammed on my head forever. Constant, relentless, unretractable, debilitating pressure & pain. I stay still and wonder if I can pretend it is not there. I try to release it from my mind. I even question myself, are you really in pain? I try to kick it out in these ways.
But its been well over 4 years of this. It will be 5 years in September, but who's counting? I know pain will be the monkey on my back again today. A tireless, jumping, screeching monkey. I will try to drown this beast again today, regardless if I am up for the battle.
I have a rare skeletal disease called Klippel-Feil Syndrome. It has causes boney malformations. I have them in my knees. I have them from the base of my skull down my neck. This is where the brainstem and spinal cord hang out. These deformities cause my body to compensate. This has caused Cervical Dystonia. My neck muscles are in a constant tight restricted place. My nerves are ticked. They are constantly sending me a 911 signal. They are desperate. I am desperate to help them, to help myself.
I have tried basically everything. I go back to the things in my arsenal to try again because it is all I have. When it is a rare condition, the understanding with the medical community is few and far between. The options for care are few. The solutions don't come easily. But I keep trying what is available. I want to fix it and get back to living fully. I did not choose this and I want it gone, but you can't change anatomy.
It is at a point with friends, that when I say "My head hurts.", and I only say it when my head is really hurting, or if they ask, there is silence. They have nothing to offer and I know it. It becomes a drag. Who wants to be around someone who is always saying they hurt? I get that.
So, day to day, on the outside, I smile, I put on quite an act! I overdo, I push, I try to keep up. I am a badass. But then... it's just plain bad. My body is not cooperating in the slightest. I would not be able to comprehend it at all, from the outside looking in. I mean, who has a constant headache for over 4 1/2 years? That's not possible! But it is. My downtime is literally me, on the couch, trying to let my body calm down because the pain is so beyond control. This is not what I want to be doing, at all.
I am trying to learn to accept the things I cannot change. In this case, pain. How to live with the pain, and enjoy life? I do the things I enjoy, but it is not the same, you are constantly pushing past the screeching monkey. Reading, for example, is lost on me now. The positions you use to read, no matter what I try, cause such pain in my head, that thoughts and vision are wonky. I still try to read, but it's not that same enjoyment. The next time you read, imagine the monkey. Imagine the small football helmet.
Yesterday, was a nice day in Chicagoland. Glimmers of spring are on the horizon. I did a light chore outside. Halfway though, due to head position, which does something to my head that no Dr has attempted to figure out, I was unable to see what I was doing. My vision gets funny, and not in a ha-ha way. I was so disoriented. I was forced to stop. My mind and vision were a jumble. My upper back was a knot. So, its back to the couch. Blah.
This is very difficult! I am a do'er. I like to fix things around the house, to paint, to be active. I want to take my dogs to the park, go to the movies, or go out to eat. But my body says nope! I could do these things, I could push, but the slice of enjoyment would later be replaced by such heightened discomfort that I know better. I am getting so restless and frustrated in the pain. I get anxious due to this crazy pain monkey screeching this 911 signal in my ear, and knowing I have no true solution. I must be in it, and use the tools I have. Pain patches, medications, nerve blocks, therapies, meditation, mindful meditation, positive affirmations, prayer, relaxation, soft music, etc.
I think I am done searching for a miracle Dr for now. I am tired of hearing from some healthcare professionals, who don't take the time to invest, "Klippel-Feil Syndrome doesn't cause pain." I am here to say, "It can, and it does! Get your head out of your ass!" I had fusion surgery in February, to try and alleviate some of the issues. I am still healing. Hoping it will help, but it won't take away the conditions, they are still blaring. No "world renowned" Dr has entertained the idea of helping the issue at my skull, too risky, or else they dismiss the issue, trying to get me out the door.
If you read this, thanks for sticking with me. I have no real point here. I just needed to purge.
I remember when your head caught flame
It kissed your scalp and caressed your brain
Well you laughed and said
Baby it's ok, it's buzzcut season anyway!
Lorde- Buzzcut Season
Best,
Sharon Rose
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