This is a personal blog of a guy who has had an intractable headache since September 7, 2011...day in day out, without relief. I also have conditions known as Intracranial Hypertension, Syringomyelia, and Hypermobility Ehlers-Danlos Syndrome, and Dysautonomia that hurt me daily and disrupt my life. These are my thoughts and adventures. In 2015 we ran off into the woods to live in a DIY off-grid solar cabin with no public utilities. This is my outlet. Read if you like.
Sunday, December 4, 2011
Headache Diary, 2 months, 3 weeks, and 6 days: Joy and Pain
Was so glad to see his darling daughter perform in the Christmas concert for the children's choir she belongs to. They all did so wonderfully. This is joyful and saddening at the same time. The voices, violins, and cello were so beautiful, but the stage lights and the bells and cymbals caused me so much pain. This headache is really kicking my body, mind, and ego. There were a few moments when I was sitting there that the things that were harming me made it nearly impossible to enjoy the things that were beautiful. Additionally, attending both concerts (Saturday night and Sunday afternoon) has left me exhausted and my headache exacerbated. Not sure how long I can keep this up...life as I have been living it (full-throttle). Am planning to call my MD to get a referral to another neurologist this week and contemplating using some sick leave. I need to find something to help me better manage the side effects of the headache that the Indomethacin does not cover. I have been getting nauseous and very exhausted by the end of each of my weeks in the classroom. Winter break is coming up soon and I am seriously tossing about taking sick leave to try to seek treatment in a bigger city at a bigger hospital. I need a solid diagnosis and an expectation of what my life will look like with a non-ending headache at 6 months, 1 year, 5 years. I am constantly bombarded by stimuli and triggers (florescent lighting, loud noises, smells, stress) in a high school of 1100 students. Just walking through the cafeteria at lunchtime is becoming torment for me. I am also concerned that if enough people realize I am sick...I will seem weak. Showing weakness is not a good thing at my school. I simply do not know how long I can continue to push on full-steam (which is the only way I have ever known) while dealing with the exhaustion of my body fighting an invisible headache every minute of every day ad infinitum (forever). I feel like I have little to no control of anything anymore. *sigh*
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