Morning breaks, I never see it; I am sleeping. Noon chimes, and I may arise. My life revolves around my bed… once a respite, is now my prison. Waking in the same position I fell to sleep 10 hours ago… regaining consciousness; shuffling off the coma and disentangling from sheets and pillows and wires of: Now cool heating pads and warm ice packs. When I must, I shed my second skin of nightclothes. When I must, I wash my face. When I must, I slowly apply the makeup, put on the hair, and dress in the clothes. When I must, I step out into the world I once knew. With all my effort and sheer will, I make myself move… just a ghost of myself with a smile.
On day 3 of MIGRAINE, I start to lose my shit. I start showing signs of mania and agitation. It’s not pretty. It’s not a pretty mind. Medications fail… and I pull back on using them. Instead, I turn to alternate medications like phenergen (antiemetic) or tizanidine (muscle relaxer) or a steroid pack and alternate drug-free treatments like Cefaly and all the ice packs. Sometimes, the freezer just can’t keep up with the migraine.
“Loveliness,” thy name is MIGRAINE day 3
I’m waiting for my Botox for Chronic Migraine to start working – administered by my neurologist 4 days ago (but almost 3 weeks late from the 12 week mark it was due). It usually takes at least a week and a half to start paralyzing the little muscles in my head and jaw.
Growing roots in my bed. I have worn only PJs for days. I smell like sleep and illness and idleness. No makeup, not even a hairbrush. It is a pathetic state, an embarrassing state. And my brain is a scribble mess of perception mixed with ominous and intrusive depressive thoughts.
The entire body of chronic issues chimes in on the migraine madness; RA a-flaring in hands and feet, sciatica a-fire starting in my right piriformis down my leg. There is heat for that ailment. I can feel my body is completely anxious and bound with tension. I can not relax. It is the typical pain/anxiety circle. I know this place, I remember it and I despise it.
Chronic Pain cycle
I know a medical massage would be prudent if I could afford the luxury and help. But instead… I’ll just keep breathing: one breath at a time. One moment at a time. There will be a change in this dark path. I know it. I know it because no migraine lasts forever. Time is always a healer. But in the darkness, it’s hard to believe it, even though I know it is true.
Hoping there is a world outside my little messy bedroom, full of happiness and health and joyful humans. God bless you all and be well.
Let me tell you a tiny story about Chronic Illness.
Last night was a typical night… I’d rested all day. No makeup, no clothes, just PJs and ice and heat and medicine. I fell asleep at 02:00 am. with my head wrapped in ice and 2 heating pads on my back and right hip. Mini coma ensued. I dreamt. I kept sleeping.
At 2:00 pm, I woke up. Detangled myself from heating pad cords, got to the restroom, and took my morning meds.
A 12 hour mini coma. Restful, right? Nope. I’m absolutely EXHAUSTED. My head has a mild migraine, my back is screaming. I slipped back into bed.
It’s now 5 pm, and here I lie. Changing my head wrap ice, laying on the heater, and binging Millionaire Matchup on Netflix. I’ve had some coffee and my medicine. I can’t face getting up to actually eat anything because I’m too tired.
How can anyone be tired after 12 hours of sleep? 🙋🏻♀️
And that, my friends, is Chronic Illness.
It controls my life, it is bigger than my life. It’s a huge monster, and I’m this tiny spark of a person living under its smothering layers and layers. It makes me very sad. Never in a million years could I have imagined this kind of existence. I had no idea it was a possibility. As they say: with Chronic Illness, you don’t get it until you get it.
Maybe I’ll be adventurous and actually get a small snack when I get some new head ice? Wish me luck!
New day. New migraine. New Cefaly. 🙌🏼 It’s doing its thang💥
@cefaly_official #CEFALY #cefalyselfie
I got a NEW Cefaly! Took advantage of a 15% off sale and trade in discount of my old device. Thank you, Cefaly!
I really, really appreciate the migraine drug-free device. It HELPS. The device is like a tens unit for the trigeminal… it feels like a small “electric” in my forehead, up the top of my head, down into my nose. It even forces the muscles in my face, head, and jaw to relax. I really appreciate the hour long ACUTE setting for treating migraine pain. It is so empowering to have a powerful drug-free migraine tool in my tool belt.
There are moments in my life when regular people have done extraordinary acts for me. And I don’t believe these everyday angels have any idea how they’ve blessed me.
The day Dawn was an angel.
Dawn is my age and the owner of a home cleaning team that helped me out once a month. Dawn is a special person; she works so hard at her company and struggles daily with her own health autoimmune conditions. It was a time of my life when I was realizing raising 4 young children, working part-time as an RN, and starting to understand that my migraine disease was now becoming chronic. I had been cleaning my own house, trying to juggle life and dancing as fast as I could… I fell ill with a horrendous case of Shingles that crossed 8 dermatomes on my left side. I have always said that Shingles illness was a message from God Himself ordered me I needed help; I could not do it all alone, and I needed to hire cleaning help. When the cleaning team arrived once a month, I would scurry like a mad woman the night before trying to tidy up so the cleaning team could actually clean the house the following day. Most busy moms know what I’m talking about. The precleaning cleaning for the cleaners!
Anyway, when the cleaning team arrived, I would always take the opportunity to do the laundry while the team scrubbed and made the house shine. I felt like I could at least look busy while they did all the tough work. And oi, with 4 kids and a husband, I had a LOT of laundry. About 5-6 large loads would end up piled high on the living room couch, and I would fold fold fold and place in towering piles. Usually, the cleaning team was done WAY before I was done with all the laundry!
There was one day in particular that always sticks in my mind: I was trying to do all the laundry while the cleaning team worked, but I had a blinding disabling migraine. I just could not function even though I desperately wanted to look productive and be productive alongside my wonderful cleaners. But it was just too much. I caught Dawn on the side and told her: “Dawn, I am so sorry, but I have to go to bed… this migraine is absolutely debilitating. I am so sorry.”
Her face and response were complete understanding: “Of course! Go to bed! We’ve got this!” And I left their payment check on the counter and went to bed, wrapping my head in ice.
The cleaning team continued to clean around me… the upstairs bedrooms, the kitchen, the living/dining room, dusting, vacuuming, the master bathroom, the master bedroom, and all the floors.
They were done in a couple of hours. Dawn tiptoed into my bedroom, where I was under the covers incapacitated. She lovingly and softly touched my hand and whispered to me: “Donna, we’re all done and leaving… we’ll lock the front door behind us. I hope you feel better soon, sweetie.” I mumbled an acknowledgment, but it wasn’t nearly as heartfelt as what I was feeling.
Dawn saw me that day. She truly understood how much I was hurting. And I remember what I felt that day… she spoke to me with such amazing kindness; like a mother talking to her child. And my heart was so moved. And I was so incredibly grateful for her kindness, for her love, for her care. And I don’t think I ever really thanked her enough for that moment. She’ll never comprehend how grateful, overwhelmingly grateful, I was for that moment. Thank you, sweet Dawn. Thank you, thank you, thank you. I don’t know how I can ever thank you enough.
* * * * * * * * * * * * * *
The time my brother Glen was so kind.
My entire family came to town to celebrate my oldest son’s high school graduation. It was a busy time. I had been slowly and step-by-small-step planning a graduation party for my son. I was running on immense adrenaline… determined to pull off a fun party and enjoy every moment and my family. It was a big party – at the community clubhouse with catered food, popcorn machine, music, drinks, a photo booth, a beautiful cake, pictures displayed of my son from babyhood to adulthood… approximately 50+ people attended! The graduation was on a Friday evening and the party was on the Sunday after and it was a glorious party success… everyone seemed to have a great time! Most importantly, my son!
One of my biggest migraine triggers is let down after stress. And I’d been dancing fast on the adrenaline the entire week/weekend. After the party, we cleaned up the clubhouse and transported everything, including gifts, back to our house in a jumbled mess. I would sort it all out later in the coming days when family and friends left and flew home to their many different locations.
While everyone was still visiting in the house and enjoying each other, I slipped away to bed. I got into my PJs, wrapped my migraining head in ice, and put my ice booties on to treat my RA flaring feet. I tried to do the Isish Goodbye; I would just slip out of sight while everyone else enjoyed their time. It was about 7 pm. But my mother and my 2 older brothers sought me out and found me in my bed. I smiled and encouraged them to go join the fun in the other room. My mother and oldest brother, Dave, understood that after such activity, I was completely out of commission. But my second brother Glen had never witnessed me like this. I could see the shock and concern in his eyes, and it broke my heart; I wanted to assure him this was totally NORMAL for me. But he didn’t understand; he doesn’t understand someone living with incurable alignments like Chronic Migraine and Rheumatoid Arthritis. My mom spoke softly to him as all three of them stood at the end and side of my bed: “She’s been under so much stress and needs to recover. This is what happens to her.” (Then my mom probably relayed a story from her own life because that’s what she always does.)
Seeing the impact in Glen’s eyes undid me. I wanted to hop out of bed and be just fine for him. I wanted to do that; but I just could not. I smiled at him through my pain and tried to say something to assure him this was perfectly normal and he didn’t need to worry; he could just join in with the others in the living room. “Don’t worry about me,” I smiled at him.
At that time, Glen reached for my feet and started to massage them gently. He was trying trying to help. The love he gave to me at that moment. The concern in his eyes… it moved my heart in ways I can never express. He gently massaged my aching feet. A moment I felt seen and completely LOVED. And I can not thank my dear brother enough for that moment… for that love and concern. I’ll never forget the way he affectionately rubbed my feet. He saw me. He saw my pain. He saw my reality. And it broke my heart that it broke his heart. My sweet big brother. I will always remember that moment. Glen was an angel that stood at the end of my bed and massaged my aching feet.
This past weekend was exciting; I packed my bags and flew to California to attend cabi Fashion Week for Spring 2024. Cabi is my new business that husband and I have embarked. We’ve converted our front room into a home boutique, and I’ve been a cabi personal stylist for one fun season. Trying hard to start this adventure with fun and service and determination.
I knew this would be hard with chronic illness and I’m juggling as fast as I can. I never would have done something so big without my husband’s encouragement and partnership. I call him the CEO, accountant, technical & IT director, set designer, and photographer. I’m just the smile.
And I do love it. As a cabi Stylist, I get to do the funnest job – serve women, help them build a closet that makes them feel beautiful & confident with amazing value, enduring, and on trend clothing. It’s like I’m still an RN but a little different. Service makes me incredibly happy and rewarded. It is my love language.
I arrived in Cali on Wednesday. Thursday and Friday and Saturday were full of fashion shows and classes and communion with other stylists. I wore my #cabicute and took notes… and died a little more each minute. Today, Sunday, was a day full of travel home… canceled flights, hours without food, waiting, later flights, little sleep, and rough travel trying to beat the Austin winter storm snap.
When I finally made it to baggage, my wonderful second son was waiting for me and my heart leaped as I jumped into his bear hug.
The new cabi Spring 24 collection arrived Friday at my home while I was away!
We made it home without sliding off the road… and it was wonderful: great discussions about my trip, recent flicks, and all sorts of conversation.
I am Home. In PJs. Ice on head, heat on back and sciatic. My body is a swollen balloon, and everything is flaring. I am in so much pain that I can’t sleep. I’ve been awake 24 hours, and I know the crash and burn are coming. And that is slightly completely terrifying. Like jumping off a cliff while on fire, watching the approaching razor wire on the ground as I get closer and closer to impaling it.
Now to climb.
I worked very hard to keep up with the other stylists these last 4 days. What a beautiful disaster I was: trying, trying to make it to 08:00 start of day (I’d usually made it at about 15-30 min late). I found a quiet corner – or even out in the open – to rest before the next session, then drag myself to the next class. On the third day, I could do it no longer; I had to skip out on the last 2 classes and go back to the hotel room to rest for the closing party Saturday night. After eating at the closing party, and skipping out a couple hours early (about 20:00) my friend and mentor said: “Can we take off our shoes and just walk back to the room barefoot?” I practically danced! Kicked my cute pink stiletto mules off, grabbed them, and skipped through the convention hall, across the cement courtyard, through the grungy carpeted hotel and into the room. SKIPPED! Margaret followed me and observed: “Look at you! You’re like the reverse of normal people – you’re dead tired during the day, but come alive at night!” I literally stopped in my skipping tracks – she was 100% correct! I affirmed: “You are absolutely correct! I struggle to get out of bed before noon but sometimes have an energy burst from about 19:30-22:30 hours. That’s when I try to get some things done! That’s why staying overnight with my grandbabyboy from 22:00-08:00 is the best “shift” for me! It’s when I’m able to do my cabi work or even clean a tiny bit around the house. It’s only about an hour or two, and it doesn’t happen every night, but it’s completely backward and pointless and sad. Very very very sad. I wish it wasn’t my reality.”
And here I am at 05:00… finally in my bed, finally safe at home, my ice, my heat finally next to my love and soulmate. I’m looking at my elevated feet… so swollen, so much pain… in my head (from travel, activity, weather and altitude). I have my medicines in my belly … and I’m hoping they start to help soon.
This was a hard trip. This was a lot of work. And I know recovery will take weeks. I will do this because… I willdo this… because not living is not an option.
Breathe. In and out. Allow the medicine to start working on the pain and anxiety and adrenaline. Get more ice. This one is already lost its chill. Tell my sleeping beauty husband to roll on his right side because he’s snoring.
I will do this. I’ve done so much already!Now to climb.
Wednesday: traveling alone to Fashion Week in CA!#cabicute Outfit 1, Day One; an homage to Spring 23, my first “mid season launch” outfit. My beloved Chanel-inspo boucle Coco suitSmiles from cabi home office Thursday AM: touring the cabi home office – a breathtaking peak behind the magic of cabi: “We are the HEART of a culture with AUTHENTIC & TRUSTING relationships…”My incredibly cabi successful mentors and friends, Margaret & Jackie… as we gleefully watched the models stomp stomp stomp the runway in NEW Spring 24#cabicute Outfit 2, Day One: Spring 24 Speedway skirt & Cherish blouse… a Joie de Vivre style. I heart everything French fashion; j’aime tout ce qui est français!Thursday PM: wardrobe change for SPRING 24 FASHION SHOW! The most FUN! Mediterranean dinner after – SHWARMA!#cabicute Outite 3, Day Three: #cabicute a vintage cabi jazzy suit with coral and gold accessories; my beret was a huge hit (lol) and interestingly enough, an unknowing nod to the new en trend of Joie de Vivre! Because if there is one fashion statement I love, it’s “being a French girl.:
Friday was a FULL FULL day of classes and communion and comradery… topped off with an out-of-this-world Italian dinner! Dreams do come true! Amo il cibo Italiano!
#cabicute Outfit 4, Day FOUR: finding my vintage cabi pink flows right into Spring 24’s new “Barbie-pink!”Found a couch on the second floor… busy area and many people saw me and I don’t care. My weariness didn’t care. I set a timer on my phone for the next class and hid the phone under my cheeky jacket on my upper chest for the vibration to wake me. Lol. It worked well! Someone snapped this shot and sent it to me: entitled, Sleeping Beauty. Haha!Absolutely could NOT take anymore classes on Saturday… had to skip the last 2 for bed sanity.Missing my grandbabyboy so terribly! #cabicute Outfit 5, Day FOUR: A little rested and ready for Closing Party “Garden Gala” in celebration dress.Stunning cabi closing Garden Party!I love the cabi customer care team mission statement!💓 “We are the heart of a culture with authentic and trusting relationships…”#cabicute Outfit 6, Day 5: Convention wrapped and soooo ready to get home to my loves!In Austin! Waiting forever at luggage carousel for my luggage.
Home trying to heal, trying to sleep! Hurting and hurting more! Good night all!
**Day two home update: I got SICK! Gah. I knew it was a huge risk since I’m immunocompromised and a chronic illness fabulous professional patient. Sigh. Appt set for sick check tomorrow at my primary doc office. It may be strep or flu. Covid home test negative. If I’ve gotten my grandbabyboy his first illness, I’ll never forgive myself. On the other hand, I’ve unpacked but haven’t attempted laundry. I’ve unboxed the cabi collection with significant and amazing help from my daughter-in-love, Courtney, but haven’t been able to do any significant “work” for the season diving board. I’m so disappointed in myself. Friends coming into town for a weekend visit, dust bunnies in every room, Christmas decorations everywhere needing to be put away, and dirty bathrooms surround me. Too weak to make it to my computer in the Boutique to do “work” and follow up. Sore throat, serious migraine, fever of 100°, massive body aches. Here’s the thing: when Chronics get ill, it’s not the same as normal people getting ill. We are ill with flu-like symptoms+ every single day. Getting ill makes us practically hospice patients. It’s bloody ridiculous.
Slowly emerging from sleep. Christmas morning is here. Some migraines still shock me, and this is one. I have taken medicine, and I’ve placed ice all over my head and neck.
Analyzing the migraine that is Christmas morning… it’s like an irate parasite climbing up the left of my spinal cord, into the very center of my brain… reaching out through my right temple and left occipital.
This Christmas migraine is colors and sparks and electricity and fire. And my neck is so tender and sore from the weight of my enraged brain.
This is an all-body experience… Every part of my body is aching, wounded, and in pain.
Dear Christmas Migraine, please release me.
8:00-10:00 AM, but I still have hope I can turn this holiday with family into something worthy of celebrating.
I had my first migraine at age 6 at a day camp and was episodic for many years. My mother actually diagnosed me – she was a migrainuer herself and saw all the symptoms I presented: sensitivity to light and sound, I was pale and sick and couldn’t move without terrible throbbing head pain. The day camp was very loud and crowded, and I was probably hungry and anxious. I became chronic about 10+ years ago in my 30’s and have done so much research and testing to become a Migraine Jedi.
The most critical part of migraine is preventing yourself from going chronic – the number one reason people become chronic is from inadequate migraine treatment. It’s shockingly simple. Inadequate migraine treatment.
The first and most important step I STRONGLY recommend is downloading a migraine app on your phone immediately. It allows you to track your migraines, their start/stop, weather info, food info, and most importantly, it can help identify your triggers. Avoiding migraine triggers is key. Also, a migraine app (such as Migraine Buddy) will be invaluable for you to share with your physician. Data data data! Incredibly powerful and helpful.
My triggers were hormones, stress, letdown AFTER stress, and any fluctuations in weather: barometric shifts, too much sun, too much wind, changes in pollen, changes in altitude, etc. Once you’ve established data in your migraine app, the next huge component is PREVENTION. There are several simple things that have a lot of scientific data and are easy to implement. Of course, following a good meal and sleep schedule. But also: MAGNESIUM 400-500 mg daily (I recommend taking at nighttime because it can make you sleepy). Also, RIBOFLAVIN and CoQ10. Two herbs have good results, too: Feverfew and Butterbur. Next, if those aren’t helpful enough (and often it’s not); it’s time to move to good medical care. An excellent place to start is:
But often, for young women, simply getting on birth control can make a major improvement if your migraines are related to hormones. It’s truly amazing.
Moving to medications: There are several first tier meds for migraine prevention: cardiac meds (atenolol, nadolol, propranolol, verapamil), antiseuzure meds (topamax, zonisimide), antidepression meds (amitriptyline). They’ve found that some of these meds work off-label for migraine prevention. But they are not necessarily the greatest. Some doctors will even skip them since there have been other better medications developed now.
Personally, I’ve found incredible help from Botox for Chronic Migraine. It’s been used with great success for over 20 years. It often takes a while for insurance approval. And you’ll need to allow 3 full treatments (9 months) to evaluate its helpfulness. I receive 30-40 subcutaneous injections immobilizing my muscles in my forehead, temples, occipitals, neck, traps, and jaw.
There are also a bunch of anti-CGRP meds that hit the market in 2018, and I’ve been able to test them. Some are once a month injectables like Aimovig, Ajovy, Emgality. There are migraineurs called “super responders,” who have been able to almost completely eliminate migraine from their life with these injectables. But personally, I’ve had the best luck with Nurtec (oral CGRP) taken every other day. CGRPs are also used as abortive meds. And I’m going to talk about them after prevention. Another important diagnostic for migraine is to make sure there is no anatomical reason for your increase in migraine. For me, my “cause” is hereditary. My mother, father, grandparents, and brother all got migraine. So it was no surprise that I suffered (although none of them became chronic). If there is no hereditary component and your migraines have started out of the blue, or you have a NEW migraine symptom: a full neuro workup is in order. An MRI with and without contrast and other tests, if deemed necessary.
Next step: ABORTIVES. This is critical. You’ll need to be able to treat your migraine appropriately and AGGRESSIVELY. A full glass of water or gatorade, ibuprofen 600-800mg and rest may be all you need. However, ALL medications have a possibility of causing MOH (medication overuse headache) or REBOUND. Even ibuprofen taken too often can cause MOH or rebound. So if youre having frequent migraine, you’re going to need other options to treat: the TRIPTANS, developed in the 1990s (imitrex, maxalt, zomig, frovo, and more – they can be administered orally, injection, nose spray and more). Also, CGRPs (Ubrevly – Serena Williams is spokeperson lol, Nurtec, Reyvow – these are orals). So, if you are chronic (15 or more migraine events per month x3 months), you’re going to need to circulate through these options to avoid MOH. Another secret weapon can be an antiemetic like phenergen – which not only helps with nausea and vomiting with migraine, but it also has some evidence of pain relief. Also, some doctors may prescribe a mild muscle relaxant such as tizanidine… which can help interrupt the clenching and tension involved with migraine – helping break the pain cycle. Lastly, I need to address MOH, rebound, and status migrainosis… migraine events have 3-4 stages: 1) prodrome, 2) aura (only 1/3 of migraineurs have aura, I never have), 3) headache, and 4) postdrome.
Through intensive study, it’s been determined the time of a migraine stages 1-4 last 12-72 hours. IF YOUR MIGRAINE IS LASTING LONGER, it is probable you are in status migrainosis. This is NOT your fault. It happens. A lot. If you are in SM, it is important to involve and get treatment from your physician. Simple solutions to interrupting and ending SM are steroids: your doctor can prescribe a steroid dose pack. More intensive treatments are infusions: like magnesium, depakote, steroid, torodol (actually, these can be quite effective! And there are actually infusion centers located everywhere that offer IV drips – some for hangover lol, but they also have a “migraine cocktail”) Quite honestly, the worst option for SM is going to an ER or ED. They are just not equipped to deal with migraine… these retail drip centers are better!
But your physician can also order infusions (either in office or an infusion center) for you, which would be covered by insurance. Personally, I do very well with a steroid dose pack and then complete rest. Because TIME and switching to meds like phenergen (instead of pain meds and migraine meds – which I STOP taking altogether) is the most tried and true way to END a lengthy migraine event.
Lastly, I want to touch on non medicine migraine treatments! My freezer is FULL of icepacks! My favorite is the Headache Hat from Amazon.
Wrapping my migraine head in ice is so helpful for me. Some people prefer heat. Some people use a chiropractor for adjustments. (They only cause me migraine) But I am helped by medical massage. Some people use accupunture. I didn’t have much success. Applying cranial pressure can help migraine as well – if a family member can help with that, that’s great! https://www.verywellhealth.com/craniosacral-therapy-for-migraines-
It’s like a tens unit for your head. Very safe and helpful. But it’s not cheap and not covered by insurance. Cefaly does have a money back guarantee, which is awesome. Another device I’ve tried is Relivion. https://www.relivion.com/
Also expensive and not covered by insurance. Sigh. Another device with awesome data for episodic migraine improvement is Nerivio! https://nerivio.com/
Basically, Migraine sucks sucks sucks. But there is SO much to do proactively and preventively to control the neurologic disorder. I have only touched the surface of information! 🙂
You will hear (from well-intentioned friends and family) about daith piercings, kale smoothies, CBD and essential oils, and other mystical “migraine cures,” which I don’t completely discount. But anything claiming a “cure” for a neurological disorder that HAS NO CURE… make sure to take that advice with a grain of salt.💜
Example of annoying and unhelpful migraine advice meme
Know one thing – the most important thing – YOU ARE NOT ALONE, and there is HELP out there and people who understand your struggle. Getting to know as much about your neurological disorder as possible is the BEST road to success. Episodic migraine is acceptable. Going chronic should be avoided at all costs.
Please please let me know how else I can help. Migraine Advocacy is one of my greatest life’s passions.❤️
Migraineurs who are selected and have the opportunity to attend… an amazing experience awaits: Education on SO many levels and aspects, sample treatments, community, validation, opportunity to try new therapies and learn about stigma and advocacy, and most of all – fellowship, understanding, acceptance and love. 💜❤💜
It is mind-blowing what a HUGE NEED there is for Retreat Migraine. But it’s more than a “need”… it’s like a NECESSITY… like oxygen is for life. And it’s only THREE DAYS.
When I was first diagnosed with Chronic Migraine in 2007/8, I didn’t understand the magnitude. I knew only one person in the world who had frequent migraines. My doctors all tried to help (except my first neurologist who discharged me from her care, saying there was nothing more she could do for me), but they either withheld information or simply were unaware of 75% of the unusual and upsetting symptoms I’d face frequently and they didn’t communicate the concept that CHRONIC means it never goes away and your life and body are forever changed. They also made me feel freakish… like I was the only person in the world who had Chronic Migraine so frequently and didn’t respond to treatments. I can not explain the ALONENESS I felt those first several years. 2007-2014. So utterly ALONE…in a world surrounded by good friends and loving family. As I failed my children daily, they were nothing but nurturing and understanding about my health decline. My husband ALWAYS believed me, and we bumbled and stumbled around our entrance of the CHRONIC LIFE … trying to learn together … trying to understand what exactly was happening. 20 medications I have trialed. 8 holistic supplements. 6 medical areas of specialists. 13 Eastern and Western treatments. Special diets, juices, powders, capsules, herbs, shakes, and more. The pricetag on all this would blow your mind right out of its skull. But there is such a desperation to find some wellness, that everyone selling something can snag you hook, line, and sinker. They claim they can cure you. They wanna help cure you. Pure intentions. They don’t have a clue how they’re taking advantage of a desperate person. And they don’t truly understand this chronic genetic neurological disorder. And they certainly have not lived it 24/7, 365 x 12 years in my shoes. And each failure, I blamed myself… something I must have done wrong – somehow I did it wrong. The PAIN and symptoms were absolutely HORRIBLE. The pretending to be okay was beyond EXHAUSTING, but the Aloneness – that was what would kill me. I had everything in the world but was completely bereft and alone. Have you ever despaired so bad you thought you’d just cease breathing? Just be sad enough and a complete failure … and just not be able to take another breath. I was poison and if I touched anyone, my poison might spread to them. I cared too much about others to poison them. Utterly alone.
Through a quirky, well-intentioned accident, someone on social media understood my circumstances and placed me in a Facebook support group. And one Saturday morning, my life was saved as I awoke to find post after post in my feed from other Chronic Migraineurs. It took me weeks to understand that what I was seeing was true: there were hundreds of others living the same life as me. Hundreds. I wasn’t actually a “freak,” and I certainly wasn’t alone! Since then, I’ve made leaps and bounds in my comprehension and educations… I’ve found my advocacy voice, and I know how to self care. I’ve relearned words… like “resting” and “recovering” is not synonymous with the bad word “lazy,” for example. I would do all in my power and shout from across the world to save others from that Aloneness, to save others from feeling like freaks.
mybeautifulmigraine 