Posted on by MyBeautifulMigraine · 2 Comments

Migraine is poorly understood

Migraine remains a poorly understood illness…The syndrome is too various, too complex, to mixed up with external stimuli and the personality of the sufferer..I have come to understand that my headaches are cyclical and that they play a part in my emotional economy.. The truth is that separating neurological from pschiatric problems is often artificial..

Siri Hustvedt, from “Arms at Rest,” excerpted from “So Much More than a Headache: Understanding Migraine through Literature, Edited by Kathy O’Shea

Posted on by MyBeautifulMigraine

Prison

Could I be the only one in the world who spends 20 hours a day in bed. It’s so embarrassing and ridiculous.

It’s “morning” for me… 11:30 am. I was able to make my way to the freezer for more ice for my head. Heater on my back, portable massager on my piriformis.

The normal chronic parties are happening in my head, joints, sciatica and lower back. But there’s even more chiming in: my muscles are all sore… as if I have the flu. I don’t have the flu… this is just all normal pain.

Using my hands to thumb type on my phone, hurts. Keeping my eyes open to write, hurts. Laying on my side in bed, hurts.

I spend sooo much time trapped in my bed. I hate it so much. Once, my bed was a safe place of rest and comfort. Now it’s a prison sentence.

There is an entire world of handicap people with crippling invisible illnesses.

I worked all day to get out for an hour dinner with friends. Do I look sick? Plastered smile.

#InvisibleIllness #ChronicIllness #ChronicPain #ChronicMigraine #RheumatoidArthritis #ProfessionalPatient

Posted on by MyBeautifulMigraine

Cefaly… a powerful tool for Chronic Migraine

I don’t know what I’d do without my Cefaly @cefaly_official … it makes life with #ChronicMigraine more manageable. It’s hard for some people to understand that Chronic Migraine is more than just a headache… it is a genetic neurological disorder… the neurological storm🌩 I’m determined to smile through.

I may bend, I may cry, I may spend many, many, many hours alone in my bed, and every cell in my body may scream in pain, but I will not break. I grow.🌳 I thrive.🧘🏻‍♀️ I love with all my heart & soul.💓

We’ve just returned from a visit to the North East to visit family. Cefaly was with me every day. There were days during our 9 day visit when I felt I couldn’t get out of bed or follow through with plans. However, an hour break with Cefaly and a lay down, and I could rise. I also kept my unit accessible during the drive: 2 days about 12 hours a day to and from… Cefaly helped when medicines could not fix it all.

Cefaly is not inexpensive. But I’ve saved for it, turned in older units for discount, and used coupons. It’s a one-time cost with only electrodes needing replacement. It provides an intense “electrical feel” stimulation to the trigeminal nerve, and I can feel the sensation moving up my head and down my face and nose. It helps me relax, it counters the pain, and it helps my medication work better. One round of treatment lasts approximately one hour. Sometimes, I do 2 treatments at a time.

People with migraine have hypersensitive nervous systems that over-react to stimuli, causing pain and neurological dysfunction. The trigeminal nerve- a multi- branched nerve in the head and face -is the major conductor of migraine pain.

From: Cefaly.com

During this Migraine Awareness Month of June, I am acutely aware of all the tools I need and use to manage my disorder these last 17 years of diagnosis.

It’s a filter; I’m not that pretty.

My prayers & thoughts are with you all.

#ChronicMigraineAwareness #MigraineAwarenessmonth #cefaly #cefalyselfie #Chronicillness

Posted on by MyBeautifulMigraine

Walking around the world I used to know… I’m just a ghost with a smile.

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.

#ChronicMigraine ##ChronicIllness

Posted on by MyBeautifulMigraine

When Migraine begins to drive one MAD

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.

#ChronicMigraine #ChronicMigraineAwareness #RheumatoidArthritis #ChronicIllness #ChronicPain #BOTOXforChronicMigraine #ChronicPainCycle

Posted on by MyBeautifulMigraine

12 hours of mini coma

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!

Hello World and all that inhabit it!😊

#ChronicIllness #ChronicMigraine #ChronicPatient

Posted on by MyBeautifulMigraine

My new Cefaly device

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.

#ChronicMigraine #ChronicMigraineAwareness #ChronicIllness

Posted on by MyBeautifulMigraine

Those moments you never forget… because an angel intervened

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; He yelled at me that 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.

#ChronicMigraine #RheumatoidArthritis #impactofChronicIllness #ChronicIllness #everydayangels #grateful #blessed #speakyourmigraine #ChronicMigraineAwareness