I am really upset. I let down my best friend and a client this morning, sleeping past my alarm and awaking only at seven with a migraine. I was so excited. I had three headache-free days in a row too! I know there are so many others suffering in silence. My migraining self is “2 cylinder Sally,” and she has to do what V12 Sally (aka standard Oriana) can do. This is a problem. I had to reschedule another meeting, and I have three more meetings I have to participate in.
I know it’ll be fine, I’ve done this a million times. It just hurts to let people down, and feel hopeless because I never know when I’ll get a severe one. I have a headache or migraine most days, but the ones that are are a seven out of ten really uck me up and I’m useless. This morning my jaw is tough to open, painful and tender, and my face, shoulders, and even back feel like they’ve been hit by a bat. It’s the hangover feeling in slo-mo. I wear a hat outdoors for skin-pigment protection but most wouldn’t know that I’m usually suffering from a migraine or headache and that’s why I need to wear the hat and sunglasses, to protect my eyes from my photophobia.
I’m writing this because I’m frustrated. I’m frustrated that I’ve failed the rescue medications, didn’t tolerate the preventatives, and can’t afford the one that works: Botox, which is $1200-2400 per treatment (cash) every three to four months. That’s a lot of dough–and I have spent ALL of my extra money that could have been saved or used on paying down debt or for emergencies. It has all been spent keeping me functioning since my early twenties. Which is so depressing.
I arrived at TILT because it was the only thing that worked for me and my complicated health/hyperactive nervous system. I can’t rely on Advil after the abuse I put my stomach through with handfuls of Advil Liquigels and venti Starbucks coffees through college. My best option right now is medical cannabis, which is really helping me manage my condition, but is not ideal for the lifestyle I want to live.
I am not writing this to throw “ 2 Cylinder Sally” a pity party. I’m writing this because I know there are so many others, mostly women, suffering in silence. Not wanting to “bother” or “let down” anyone, our self-worth takes a beating. And it’s very difficult to explain the condition and experience to someone that doesn’t suffer from a neurological disorder (fibromyalgia, epilepsy, MS) or chronic pain. So I’d like to ask each and everyone to reach out to someone you know that suffers from a disability and/or chornic pain, and tell them how you appreciate how they show up for life. That can be all we strive to do.
The latest studies suggest that genes for migraines and other disorders are influenced by stress and environmental factors in utero and as a child. I just read an article that states that emotional abuse as a child has a higher correlation to migraine than another types of migraine. PTSD affects our predisposed genes–and no matter what kind of work we do to release the trauma, the body is the last to recover. Denial is the biggest, baddest enemy of health: the more we deny and
bury and run from feelings, memories, relationships, the greater the physical suffering.
So I’d like to raise awareness about chronic migraine, but also any other chronic condition. I have designed my entire life around preventing and avoiding headaches, hence “This Is Life/style Training”. I’ve been at healthy & pain-free boot camp for the last four years, and I have learned a lot! As the American (and indeed, the first world) diet and lifestyle continues to make people sick, more and more will turn to their lifestyle and realize they’ve got to take responsibility for it. You have to take responsibility and not be a victim. Use your power of free will to choose how you want to feel and live your life.
I have this picture of my great Auntie Stephanie’s “todus”: This is the life-size doll she’d put our in the living room to indicate to her children and family that she must be left alone in the quiet and the dark until the storm passes, just like I do. Again, have compassion for those who suffer, and show them some validation. Even if it just mean saying “I read this blog post and it made me realize that showing up for life can be a real challenge for you. That sucks, but you’re brave for battling through it.” For many of us, the alternative is to be cooped up in a dark room or hospital bed, in perpetuity, becoming an invalid of sorts. Today I can’t open my mouth due to the TMJ and will be drinking my nutrition. Think of that every time you see someone svelte and think, “It must be easy for her!” You have no idea what’s going on with other people, so have compassion.
Forward this post to anyone that you think can appreciate it.