Sometimes I wish the world understood this. After years and years and years of searching, trying everything, every angle, every bit of “advice” from friends….there’s this point of… Acceptance. It’s not a Hopeless place – not at all! (I still believe I will improve!) But it is a realistic place. I’ve tested my limits hundreds of times. I’m a friggin expert in my limits. I’m an expert about Migraine – especially my own “brand.” And I haven’t been sitting in my house the past decade just suffering. I’ve been a rockstar at trying to fix me. 🌟🌟🌟🌟
And I have a team of experts employed. The best I’ve been able to find. They don’t sit back on their heals either…they WORK for me. Constantly trying new therapies and angles. We have a cooperative relationship. Should they give up on me, it will be time for me to move on.
Healthy diet, yoga everyday, respect my limits, practice self-care. ♥️💜♥️
3 am is an interesting time on a migraine night. I rarely have insomnia so it’s not an hour I “see” frequently. It’s a quiet time in our house but my head and body are a raging storm. Ridiculous Texas winter allergies are at their highest (stupid cedar and elm – action: counter pollen by pouring eye drops in each affected eye) and – hooray – there’s something whacky happening with the barometer now – I can feel it slamdancing aggressively in my right temple – so it’s a priority I visit the freezer for a new ice pack crown. The one strapped to my head now has gone all warm. Lol. My heart’s beating out of my chest with anxious questions: Will I be able to sleep? Will I need to take medicine to control this migraine (I get 9 dissolvable pills a month plus 6 rather painful subconscious needless shots)? Will medicine even help if I do choose to take it? And wth is my Sacroiliac flaring?
Plan of action: trip to freezer, readjust heating pad for my SI, get comfortable again with my myriad of pillows, ruffle my darling husband’s hair and give him a kiss as he sleeps peacefully. And then…lie very still and try to breathe through the pain so I can fall back asleep.
Sleeping offers the oh, so heavenly temporary reprieve from pain.💜❤️💜
Have a beautiful weekend friends! Enjoy every moment you can!
A difficult week for migraine. Broken record, I am. But sometimes I just can’t wrap my head around this disease – I need to demand, to scream out, to no one in particular: “What the hell is happening? What a ridiculous existence!”… so preoccupied with caput meum: aphasia where once I was eloquent, memory incompetence where once I had vivid recall, inability to concentrate, so much confusion, incapacitating fatigue and disequilibrium. Oh…and the other thing: Pain.
I have trouble recognizing myself. And my life as it has become. But I’m going to smile. I can still smile.and laugh. And love. And tomorrow holds so much promise. Tomorrow will be brighter.🌞 I dream of a world where brains are always peaceful and migraine doesn’t exhist.
It was ~2009 and I was still learning to cope with my migraine changes. I was very clueless about Chronic Migraine as I knew no one with the disease. I was fighting my pants off against it; in the Botox regimen, taking oral preventatives, involved in other therapies, etc. But I was still hiding my Illness as best I could. My children were still young and their needs many. My friends didn’t understand, especially my best friend.
It was the last day of school before Christmas break, my daughter was just 6 and our friends (my group of girlfriends with their ~6 year old kids) was having a little Christmas party after school at one of their houses. Crafts, snacks, play and fun. It was a darling event. For whatever reason, I’d fallen ill with an horrendous migraine. One of the killers – that doesn’t really reapond well to meds, that needs to involve dark room and mini coma. But this was not a day for a Killer Migraine. This was a day for festivities: crafts with the kids, wine with the girlfriends, laughter and fun.
I’d been attentive to my migraine in preparation for the party…but it wasn’t budging. Someone even picked up my daughter from school and brought her to the party so that I could attend to my boys (8, 10, 12)…get them settled at home (close by) with a movie.
I got in the car to drive to the party – only .25 mile or less away. I was so sick. I walked into the house and greeted my friends, hugged my daughter and started to get into the party groove. I couldn’t take my sunglasses off. The pain in my head was so severe – like a knife through my brain. I was completely nauseous, couldn’t even open my eyes all the way. The house was loud with kids and laughter, the snacks were sugary and turning my stomach. Someone offered me something to drink. “No thank you.” – more like no way! I remember trying to take my sunglasses off but it wasn’t possible.
My friends were all there and talking and including me…but I couldn’t even engage; I was only on the verge of consciousness. So much pain and illness. None of those beautiful ladies said anything about my appearance. It couldn’t have been hard to spot. But they carried on, enjoying themselves.
I remember I had to turn from them. I just wasn’t capable of engaging even though I know I was smiling and trying to exchange pleasantries. I focused on the only goal I could: my daughter. The independent, social little spitfire was working on a craft with her friends. It was cute. She was always such a beautiful little joy, a bundle of spunk and smiles and curly brown hair at that age. No one could resist her – my sweet and funny Bobbi girl.😍 She didn’t need my help with the craft, but it was all I could think to do since this was an event for her (for me too). I was so ill. The kind of ill that I’m not sure how I was standing. The noise and smells and activity around me like a living Hell to my migraine. I couldn’t think. I could barely breathe. I wanted to step in front of a moving train. But I was smiling.
I’m sure one of my friends asked me if I had a headache and I must have confessed – since there was no was hiding that much illness. But that was the extent of concern for me. Which was fine. I didn’t and wouldn’t expect anything else. I never have and I never will. It’s not about me.
But then… Lizzie happened.
I had been at the party only a short time – maybe 20-30 minutes. I stepped away from my daughter and the craft table because she was completely uninterested in my help (lol). None of the kids were getting help from their mamas. And Bobbi’s nature was so independent anyway. She made me smile.
So I stepped away and tried to go somewhere else…maybe to visit my friends in the kitchen? I was so confused, in such indescribable agony. Indescribable Agony. I met Lizzie in the hallway. Lizzie was another mom with 2 little girls. She was such a cool friend – great personality, funny and smart, chill, beautiful. I never had the opportunity to spend a lot of time with Lizzie, our kids didn’t really play together and she didn’t live in my neighborhood. But I always thought she was the shit.
Lizzie took one look at me and stopped. She said: “Omg, you’re so sick! Look, you can’t even take your sunglasses off!” I just mumbled something about wanting to be there for my daughter; it was a party, ya know. “Donna, you’re too sick. Just go home! You poor thing. Don’t worry about Bobbi – we’ll bring her home later.” She was so matter-of-fact about it.
I was totally undone by her … Not only could she see what no one else had, but she called me on it. She didn’t pretend, she didn’t expect me to just suck it up and stay and engage. She directed me to take care of myself and she nonchalantly reassured me they would take care of my baby.
The moment is one I’ll never forget. Lizzie SAW me. Lizzie SAW the Migraine and she honored me and cared for me. I was powerless to pretend at that moment. I remember I began weeping – just silent flooding of tears down my face. Incapable of expressing the gratitude I felt, I just hugged her…or she hugged me…and I wept in her arms, my sunglasses still on.
“Go home. It’s okay. Just go to bed. We’ll take care of Bobbi.” No drama, just calm direction.
I can’t remember much afterwards. I think I said a quick goodbye to everyone and hugged and kissed my daughter. I know I couldn’t stop the tears. I know the others weren’t like Lizzie. They accepted my leaving but were not as understanding.
But I went home. And I went to bed. And my boys were great, involved with a movie or videogame. And someone dropped off Bobbi at the end of the party. And, as I always do… I recovered from that migraine. And I would live to fight another day.
But I can’t forget the enormity of what Lizzie did for me… The kindness, the caring, the fact that she SAW and wouldn’t ignore my pain. The fact she let me weep in her arms like a child. She took care of me when no one, including myself, would. She *got* it. She understood. And she touched my heart and my life. And I’ll carry that kindness with me always as the gift it was. And I doubt she’ll ever understand the grace of what she did for me that day.
You have not lived today until you have done something for someone who can never repay you. (John Bunyan)
Dr of Chi, Gayle worked on my sacroiliac this morning…mostly. The rain is here and 40° weather, but my head wasn’t too bad this morning. I described it as a veil of pain in the right side of my head.
The acupuncture treatment was great (and *only* $82. with no insurance coverage) and my hips and back still feel good tonight. I developed a hematoma from one needle on my right outer thigh. Ow. My head, however, only lasted 45 minutes. Then the migraine began to blossom. I skipped the senior parent meeting because I’d forgotten a jacket and was too cold. But was on my way to see Shanna for EMDR after noon when my head was doing it’s thing.
I’ve started “reading” again with Audible. Because reading books hurts my head too much (😢). I love reading. However, with so much driving to appointments, Audible should work out great.
Shanna’s appt was very good…and very painful. She worked on my head for quite awhile – integrated EMDR and cranial compression, but the thing was not budging. I told her it was “dug in like an Alabama tick.” And had she ever seen the movie Predator? Because I talk in movie quotes.
I wondered to her if the quote was an insult to Alabamans, but we didn’t think so.
The tears were flowing today… brought on by migraine and unstable depression and she told me I didn’t have to wipe them away. I told her my depression had been out of control lately and she was intent to hear more. I admitted that my depression wouldn’t be such a problem if I didn’t suck so bad. Valid observation, surely.
She asked me to describe my depression to her and I went off on the Black Box description that I’ve used for so many years: Black Box, can’t feel the bottom, don’t know how to climb out, a complete sense of Aloneness… Absolutely terrifying. What she said next was facsinating. Apparently, this is not an unusual description from people who battle depression and have also had a narcissistic parent. In fact, it’s a theme. She thinks it goes back to “the crib.” Where as a young child, a mortal fear developed – somehow. Not intentionally, of course.
I sat there slack-jawed. Omg. This was a theme? 😲 Wowza.
When she took me out of the box during EMDR (she used the doggies since I couldn’t *find* a way out by myself), she asked me to connect with Marc. I found this part nearly impossible. Because if I connected with him, would he not be exposed to the Blackness? That concept horrified me; I had to protect him.
The rain continued all day. And my migraine mounted. I finally tried to open a Maxalt triptan about 5pm.
This day… 4 years ago… I discovered I was a “thing” and not a total Freak! I was slowly opening up and Speaking My Migraine. I was learning that I wasn’t all alone. My college friend Heather would take notice of my “honesty Facebook posts” (no doubt annoying to many!) and in the course of under a year, put me in contact with hundreds of people Just. Like. Me.
My first migraine was at age 6. But I wouldn’t become Chronic until I was in my mid-30’s.
At that time, I knew of only one other living soul who struggled with migraines daily.
I was completely alone. I covered my illness. I covered my pain. I hid my confusion; I was utterly and totally ALONE. I was dancing as fast as I could to appear “normal.” I threw back ibuprofen daily and smiled…and worked at a job I loved as an RN and took care of my 4 kids and cleaned and made dinner and shopped for groceries and attended kid concerts/performances and drove to football practices and soccer games and helped with school projects. I was alone. I had no help. And I was in desperate, desperate NEED of h e l p. I was screaming for help…and no one was listening.
I was completely ALONE. I was dying inside… I was hollow and dying. When I found myself alone at home for an hour or two during the week, I couldn’t clean (like I was supposed to be doing), I would lay on the cold concrete kitchen floor and weep. I wanted only to die…to end my pain which had co-mingled with my depression and anxiety into this warped huge, terrifying monster inside me. I was convinced I must be a Freak. I knew my children would be better off without me in their lives. I knew my husband would be better off without me. I had planned it… When I was dead, he could hire a housekeeper to care for the house and mind the children; she would be a much better mother than I was.
I was vaguely aware this thinking must have some flaws in it. I’d take my phone out and, through the tears, scroll my contacts…searching for a name, any name of someone I could talk to; I could connect with. Scrolling….scrolling…scrolling…I passed each name, considered it, and kept scrolling. Some were friends I’d known for years and years. Some were family. Others claimed to be my best friend. But each of the names just left me empty. I judged they wouldn’t care or understand. Not one of them was an option to call.
Maybe if I could just cut myself…put the pain somewhere else…take it from my heart and my head? Maybe I could lie on the floor weeping until all the tears were gone? Or my kids would come home from school and I’d be needed to make them dinner or drive them somewhere. Always, always having to go out in public. With my stupid smile and mask of Normal.
I look back on that time and cannot believe I survived such isolation and Despair. No one knows or really even cares but me. It scares me to think of just how low I’d fallen.
I climbed out by myself. Spoke with my doctor about medication, found a counselor who cared and understood. I think back on that time… I think about the obliviousness of my “friends” and family. And it terrifies me.
Could someone like me be out there in the light…all alone?
And that’s why I Speak My Migraine. That’s why I won’t shut up. I was DYING in plain sight. Could someone else be suffering too? Do they realize they are NOT alone?