I think headaches are hardest on sunny Fridays. I sit at my desk and work not with the happy thought that later in the afternoon I can go out and enjoy the weather by floating in the pool or working in the garden. Instead I sit here begging my head to stop hurting long enough to allow me to get the bare minimum of work done to make progress. If I look beyond the work day a layer of depression floats over my head like a storm cloud because most likely my time will be spent in a dark room, still with no movement while the world goes on without me.
I am glad my family is able to continue some level of normal when I am missing but my heart hurts not being able to take part. I want to make plans for the weekend to laugh and play or just hang out with family, with friends or even on my own but all those things can’t be planned unless canceling is accepted as a probability. And you know what, after 18 years most people in my life know this probability but 18 years is a long time to put up with it. I wouldn’t blame anyone for limiting the invites to me simply because of my cancellation policy – and that SUCKS! That is not how I want it to be.
Then then there is the in between time, when my head hurts enough that normal life can’t happen but doesn’t hurt enough (or is dulled by meds) that I rebel against laying in my darkened room. There is nothing in the in between. I can’t function but I can’t not function. I wear yesterdays clothes because I probably slept in them, I don’t have the energy to brush my hair so the messy bun becomes my ongoing style. Protein bars are my only source of good because they are easy. The sounds of the mail truck and the garbage truck come in waves like a tsunami. A simple trip to Target seems like a climb up Mt. Everest in flip flops carrying my full oxygen tank. All my energy is devoted to sitting up in the light and pretending, even if just a little, that things are okay and I got this…many times all the energy goes into my job so I don’t loose it and there is literally NONE left for anything or anyone else. Did I mention my family is awesome?
I am in the in between space today. The meds I have are not working great but there are no others to take. The opioid epidemic has taken relief even from the ER. Even though I have paper work from my Neurologist at U of M explaining my condition and what course of treatment should be used to help me when I get so bad the ER is the answer, they won’t do it. They will do no more for me that what I can do at home which, on days like today, doesn’t quite cut it.
Yesterday was a good, no headache day. But it was also yesterday!
I actually twirled though the house saying it is great to be alive. My daughter looked at me like I was a bit crazy but she seemed to enjoy the fact that I was giggly and silly. This does not happen much for someone who suffers from chronic headaches. There are two key things that make yesterday such a wonderful experience….
It reminds me that it is possible to feel like a human being. Someone who wants to participate, and can participate in activities of life. What a concept right! But for me this is HUGE. Days like this come around about once every 90-120 days so they are CHERISHED!
It reminds me that I am not CRAZY! All the other days, where I feel like some level of crap, I start to think that I am doing this to myself. My thoughts get away from me and begin to spiral around me like toxic waste. Thoughts like “you are fine, just suck it up” and “you are a whimp, you can’t handle pain” or “you head doesn’t really hurt, this is just normal life”…THEY CAN BRAIN WASH YOU…and it can be done fairly easy when you are in pain every fucking day. Having a good day reminds you that those thoughts are just that, thoughts, they are NOT REAL. It is normal to expect to feel good, EVERY DAY and let the pain be the exception!
So, I wrote in big letters in my gratitude journal last night how grateful I am for headache free days. Today, I could write that but my list will probably be a bit more simple. Like grateful I didn’t throw up, grateful I was able to get my daughter off to school and grateful I was able to get a least a few hours of work at my corporate job done from my home office (although while wearing PJ’s and napping a lunch). Those things are worth being grateful too. If they weren’t, I think I may have given up by now. This is a hard path to travel day in and day out and sometimes the simple things are what keep me going.
My plan yesterday was to write that next story in the headache series…what happens after that first trip to the doctor nearly 17 years ago but, that didn’t happen. Instead I enjoyed the sunshine (although cold) by going for a walk with my husband and our two pug dogs. I baked yummy apple treats with my daughter. We played outside on the trampoline and we enjoyed a great dinner all together. I am sure there was more but I was pretty pumped to be able to remember it all! Maybe tomorrow I can continue the story as today, with even its small victories has left me exhausted and a bit bitter and cranky.
Tomorrow is another day…maybe, just maybe it can be another yesterday!
Even in the midst of the darkness, spread your sparkle EVERYWHERE!