Here again. My body hurts. When I turn my head, it takes my brain a moment to catch up with my eyes. It feels like my mind is trudging through mud to get from point A to point B. I’m depressed, I feel guilty, I feel broken.
This is chronic migraine. In my case, chronic vestibular migraines.
I’ve thought about writing about this so many times but I don’t even know where to begin… the crippling abdominal pain I suffered in college that we couldn’t find any answers for. The constant illnesses for years in my 30’s and 40’s that sent me to countless doctors: sinus problems? Thyroid problems? Just more prone to germs and illness? Or the breaking point in the summer of 2023: hospital trips, medical leave and finally a diagnosis: chronic migraine.
Today, I just want/need to vent. To try to explain to anyone reading this why it feels like I’m always gone. Always cancelling. Always in bed. Always searching for answers and reasons.
Yesterday, it hit after lunch. Imagine someone poured a pail of syrup on your head… slowly oozing down over your head, face, shoulders body. That’s what it feels like to me – this slow moving feeling of YUCK that usually starts in my forehead and sinuses, creeps down into my neck and shoulders, and takes over my body. Then the left side of my face starts tingling, like your foot feels when it falls asleep. It becomes harder to think, harder to focus. Nausea creeps in. By the time I waved the white flag and left for home, the yuck had evolved into sinus pressure in my face, and pain in my neck, shoulders, and back. I got home, changed clothes, and collapsed into bed.
14 hours of scattered sleep. When I’m suffering an attack, even my dreams are distorted and strange; my eyes shift uncontrollably under my lids, and I see weird colors and shapes. I can feel my body spasm randomly – just slight jerks of my hands or shoulders, like tiny reminders I am not in control. I feel like my ears are literally leaking, making my inner ears itch and become irritated. When I finally wake up, it feels like I’ve been hit by a truck – the muscles in my body are sore, like I’ve been holding them tight for hours. That knot behind my shoulder blade, pain in my left leg, my shoulders completely taut and sore. My brain is simply raw, at it’s simplest form for comprehension or thought. I just got up a few minutes ago, and I had to keep my eyes focused on the ground, walking slowly, because everything is in a fog, my mind and body not quite keeping up with my movement.
And this is when the depression and guilt take over. Because I have to lie down – again. Because I am useless to my husband and children – again. Because I’m THAT coworker – again (in my three years at HDR, I have not yet broken out of the red for vacation time, because I use so many sick days). My family has been a witness to this for so many years now. I have a constant fear that my children will grow up and remember a mother who was always, ALWAYS in bed.
God’s timing: just this week, I watched a video from a New York neurologist with a powerful, personal message: “It’s not your fault. Would you apologize for asthma or cancer? No. Just because there is no test we can give you doesn’t negate the fact you have a chronic illness. It’s not your fault.”
That’s really, REALLY hard for me to accept. There must be SOMETHING I can do to prevent this, or something I am doing to cause this. I have learned a lot about my nervous system, and the things that I do (and don’t do) to spin myself out of control. The best metaphor I really connected with was The Ferrari. There are all types of cars/people in the world. Some are Subarus, meant for driving under the speed limit and taking life nice and easy (my apologies to any Subaru owners out there.) Some are Hummers, meant to tackle all terrain with grit rather than zoom zoom. And some are sports cars, meant for unmatched speed and performance.
I am a Ferrari. I would argue God gave me special creative gifts, as well as the personality type that I want to use those gifts to my maximum potential. BUT… while Ferraris go zero to 60 in 1.9 seconds… that can’t maintain that velocity. You wouldn’t take a Ferrari in the rugged terrain of the Wyoming wilderness. And a Ferrari sure as hell isn’t going 60 on I-80 in the lefthand lane.
I go at 150% at all times. The word ‘no’ isn’t in my vocabulary; I take on too much. I have so many ideas in my noggin’, and so many things I want to cram in to everyday. And in the words of author Rachel Hollis, “if you don’t listen to your body telling you to slow down and recharge, your body will simply SHUT DOWN.” The Ferrari will run out of gas and just STOP.
AKA – this is all my fault.
I have a terrific neurologist and Vestibular Migraine specialist, Dr. Chad Whyte with Nebraska Neurology Consultants. Thanks to his help and expertise, I don’t have the ER visits I used to, and my day to day symptoms like nausea and brain fog are much more manageable. I also have an amazing therapist, Becky Smith with Summit Counseling Services, who has been invaluable in helping me work through the mental crap that seems to be a partner in crime with each attack. I have phenomenal bosses at my job who are always so incredibly supportive, and truly make me feel like they’ve got my back. I am grateful everyday for Brian, who is always so damn supportive and never shows signs of frustration or questions how I’m feeling. I’m trying to reiterate to myself everyday that it’s ok to take a breath and slow down, to listen to my body and put my health first.
Yet here we are. Back in bed again. Back listening to that little voice whispering, “this is your life. You’ll never be better.” And here the tears come. I have the best experts on my team. I drink all the water. I meditate. I am finding a better work/life balance. I am giving myself more grace. I am working on saying no more. And yet, here we are again.
So maybe today, I just wanted to write to get it out there. To not apologize, but explain. To hopefully remind someone else reading this and suffering from the same thing you’re not alone – to remind myself I’m not alone. I’m not looking for pity, but I would love to hear from you if you, too, suffer from vestibular migraines, just to commiserate with someone else.
I know things could be so much worse; I know how lucky I am. But today, the Ferrari is broken down on the side of the road.
Thanks for reading.
