Shrinking into the Pain
At My Tallest
The beginning of my day starts when Archer leaves for work around 9am to brave the LA traffic. Although I just want to crawl back into bed, I start my day with a smoothie. I sit on the balcony just to double check the ocean is still there (my fantasy land of living at the beach could have just been a dream all along, so I gotta check!).
I sip my smoothie and think of two words to focus on for the day. When I feel out of touch or like I’m wandering around the apartment with no purpose, I fall back on these two words. Some of my most often used words are: Focus, Health, Productive, Healing, Perseverance, be a Good Friend, Positivity and Grounded.
At this moment, I feel the tallest I will all day. My mind is fresh. I always have ambitions of exercising as soon as I get up, but I recognize that I am most productive when I first get up or at midnight. I game out my day by perusing the numerous To-Do lists that sit at the table.
As I begin to dive into the never-ending world that my laptop yells at me to pay attention to first, I slowly sink further into my chair. I started the day at 5’7”. Even with a good posture and ergonomic set-up, my body starts to turn inward, shrinking me down by an inch or so.
Eventually, I begin to feel the fatigue and get up to stretch. Sometimes with simple yoga moves or doing 20 squats, push-ups and ab exercises, which I try to pepper throughout the day to reach 100. That typically invigorates me for another round on the computer. This helps my body open up and counteract the two hours of sitting with my legs crossed.
I Wake Up Shorter After a Nap
After four or five hours, I have to make a decision, is it nap time or is it time to get out of the apartment to run to the pier or to run errands. If its nap time, I try to only sleep for an hour to get rid of the migraine pain that has been yelling at me for the past hour as I have tried to ignore it. Sleep helps, but I curl up into a ball while I sleep to protect myself from the pain. That definitely takes off another few inches off of my height. When I wake up I’m lucky to look at the world through the lens of someone who is 5’4”.
I then try to be productive around the house, which can tire me out easily. Knowing I shouldn’t go back to bed, I check back in on my daily To Do list. I feel a sense of accomplishment if I can cross through at least 40% of that list by the end of the night. It just takes me longer to get normal things done. But as I exert myself more, my body kind of moves inward. By sun-down, I feel 5’2”.
When my boyfriend comes home from work, we game out our evening. Gym time, keep working, make a simple dinner or walk down the street to find good take out. Those are the typical options. The gym or a walk on the beach will help open up my chest and body, giving me back a few inches. Otherwise, it’s dealing with dinner in whatever form, agreeing on a horrible reality TV show to indulge in while we both continue to pump out work on our laptops.
Pain Collides & My Body Feels the Downward Pressure
This time of night is the witching hour for me. I can’t sit still due to Restless Leg Syndrome and Periodic Limb Movement Disorder. The only thing that makes it better is getting up and moving. So I flight around the apartment tidying up or getting into unnecessary projects instead of calming down and preparing to go to bed. It gets painful even with a muscle relaxer. I could be purely exhausted with my mind still running and dreading going to bed where my twitching movements become incredibly pronounced with spurts of lightning pain throughout my body. Eventually the meds will kick in and I’ll fall asleep.
By the time I get into bed, I feel like I am just under 5’ tall. The day has just weighed on my shoulders and pushed my body into itself. I’ll sleep and have vivid dreams, but wake up, stretch and start my day at 5’7”. Maybe today I’ll only lose two inches throughout the day and go to bed feeling like I conquered the day.
Shown here are my fellow Headache on the Hill participants as we talk to a staffer from Congressman Don Beyers office from VA. I was so incredibly proud of how well our group was able to mesh together to get our message across. Two of us had chronic migraine, one had cluster headache, two were…
I took this video a few days after coming home from 6 days in the hospital. I’ve had a really hard time recovering although the ketamine treatment tends to decrease the frequency and intensity of my migraine attacks. Sometimes you just gotta cry it out.