Who can relate? #msfatigue #mslife #msflare #multiplesclerosis #msisbs #mswarrior #invisableillness #invisiblesymptoms #invisibledisability #thisiswhatmslookslike #livingwithms #thisiswhatmigrainelookslike #migrainelife #chronicillness #chronicpain #sickandtired #spoonielife #chronicmigraine #fums #msadvocate #migraineadvocate #msbestlife #mswellnessproject #msstrong #livingwithmigraine #livingwithchronicillness #thisismigraine #thisisms💜🧡
#msadvocate #msawareness #mslife #chronicillness #chronicpain #chronicmigraine #chronicallyawesome #sickandtired #sicknotweak #spoonielife #livingwithchronicillness #livingwithmigraine #livingwithchronicpain #invisableillness #livingwithmultiplesclerosis #mssucks #thisiswhatmslookslike #invisibledisability #mssupport #migraineadvocate #migrainestrong #migraineawareness #msbestlife #mswellnessproject #thisismigraine #migrainelife #thisiswhatmigrainelookslike #thisisms💜🧡
Completely wiped out after a really bad migraine 🥺 The migraine hangover with the nausea and weakness is just as disabling as the migraine. Another lost day. #migrainessuck #migraineawareness #anotherdaylosttochronicillness #msflare #migrainestrong #migrainelife #migraineflare #migrainewarrior #migraineandms #livingwithmigraine #livingwithchronicpain #fumigraine #livingwithchronicillness #livingwithms #thisiswhatmslookslike #spoonielife #thisiswhatmigrainelookslike #sickandtired #msbestlife #mswellnessproject #thisismigraine #thisisms💜🧡
Today sucked... I woke up today with cramps so bad I could barely stand, my son has been sick with a cold for nearly a week and had an asthma flare that landed us in urgent care for the better part of the morning, I still had to work remotely (definitely should've just called out) and finished the day strong with a migraine on top of the cramping. Caring for a sick child while not feeling well yourself is....HARD. So now we reset! Sip some tea, journal our thoughts, and prepare mentally, physically, and emotionally for the day ahead! This. Is. Self. Care! #thisiswhatmigrainelookslike #thisisselfcare #thisisselfcaretoo #timetoreset #learntorestnottoquit #tomorrowisanewday #selflovetips #selflovetools
Just out here protecting my energy and providing your daily reminder to do the same! Can you tell I've been battling a migraine all day? This is why protecting and preserving my energy was more of a priority today. When I don't feel well, I tend be quite irritable and short with others, which can easily spiral. So, today, it was important for me to stay to myself and take care of me inside and out! What does protecting your energy look like for you? Comment below! #protectyourenergy #protectyourpeace #thisiswhatmigrainelookslike #thisiswhatmigraineslooklike #takecareofyou #takecareofyourselffirst #takecareofyourmind #takecareofyourhealth #selfloveguru #selfcareguru #selfcareguiltfree
Time to leave the cozy migraine nest and go to work. #migrainestrong #thisiswhatmigrainelookslike #cozynest #handmadepillow
#thisiswhatmigrainelookslike I have migraine, with and without aura, as well as silent migraine. This essentially means I get migraine attacks with or without head pain. My first migraine attack was when I was 16. I would often get headaches on one side of my head along with light and sound sensitivities. Over time, they got worse. My vision would be blurry and floaters were becoming more and more common. I would get really confused and often stumble over my words. Let me tell you having brain fog in a classroom setting is not fun. During senior year, they got particularly bad. I was getting them more and more often. I began leaving school early some days. I could barely focus in the classroom. Eventually, one of my auras that accompanied my migraine attacks was my vision going completely white for a few seconds. The only thing that really helps me with an attack is laying down in a dark room. So I finally decided to go to the neurologist. That was when I was officially diagnosed. I’ve since learned what my main triggers are: stress, gluten, fluorescent lights, and even sometimes weather. Avoiding these triggers can help prevent attacks for me. Prevention is the main treatment for migraine, as it’s not well understood and there’s no cure. I’ve been lucky enough to reduce the number of migraine attacks I get, but not everyone is as lucky. Migraineurs can go their whole life without finding a suitable treatment method. Some even have to undergo surgery. It’s not a fun condition to have. I just hope one day that enough people understand it so we no longer have to deal with the stigma that comes with the condition. #migraine #migrainessuck #migraineawareness #mymigrainestory #migrainelife #migrainesufferer #migrainewarrior #migrainecommunity #migraineur #migrainestrong
Last night during a migraine attack, I realized that there are so many people who don’t understand migraine. This has led to there being a pretty big stigma around it despite it being a common condition. It’s more than just a headache. Migraineurs aren’t overexaggerating. They aren’t faking their pain. They also aren’t flakey just because they need to put their health first. I decided to create a hashtag campaign to help educate others and work towards breaking the stigma. If you have a migraine story, please share it along with a photo of yourself using the hashtag #thisiswhatmigrainelookslike Note: Migraine refers to the condition. When referring to the events themselves, please call them migraine attacks. #migraine #migraineawareness #breakthestigma #moveagainstmigraine #migraineur #migraineursofinstagram #migrainestrong @amfmigraine #migrainessuck #migrainewarrior #migrainelife #migrainesupport #migrainecommunity #migraineattack #neurologicaldisorder #strongertogether
This is my migraine log for May. Do you see it? Do you see the spaces between the entries? Do you see days between the days? This says 6 days of migraine since my last Emgality prevention injection. That is 22 days without migraine. 22. I haven’t had that kind of freedom in...years. . Over seven years my migraines transitioned from episodic (4-8 attacks/month) to chronic (15 days /month). I’ve had them since adolescence, but every handful of years they steadily increased. Until one year, I realized I was at the magic number 15. Half. Half of my days. . There’s a question mark pointing at the period between 5/11 - 5/25 because I couldn’t believe it. Because within those two weeks specifically was a stretch of emotionally very hard days. Days of volatility, of surprise sobbing sessions, of fragility. How did I not have migraines in that time? . I think this is about new habits. I think this is about feeling feelings. About having the space in my life to do so - I’m not pushing through, pushing down, my emotions or my physical pains in order to go to work or to be busy. I’m following my instincts. I, in the midst of a pandemic and job loss (temporary sorta), am having a lot of opportunity to practice feeling scary things. And I’m doing it. . It is scary to have hope with chronic illness. It is scary to believe in possibilities and to believe in change and to expect change. So I have all these caveats in my mind of other factors that play into this number of 6. But for right now, as I lie in bed awake in the middle of the night recovering from that sixth migraine day of the month, I am choosing to appreciate May. To appreciate the number six without caveat. And to hope for another month like this. . . #thisiswhatmigrainelookslike
Today was a stay home from work migraine attack day. It was the ouchy kind of migraine, as opposed to the yucky kind. Those are my categories that I only sometimes understand. Gratefully, my medication and extra rest resolved most of the ouchy, and what remained was so much fatigue and so much glazed over brains and I've been on this couch for 12 hrs. Except for my brief trip out of the house to pick up my monthly prevention injection. Which maybe kinda sorta worked I think last month. And I am working on embracing hope. The skeptical realist kind, and also the kind that opens doors for attracting healing and not repelling the possibility of it because of my closed off energy. And I am working on more eagerly and more quickly and more definitively calling in sick when I have a hint of an attack so that I can more fully recover with rest. and today I did. and my nervous system is slowly returning to normal and my body and I are learning to trust one another and our collective knowledge and intuition. We are safe. And our pain is a signal, that we can interpret, however we choose. It is hard for me to go to bed/sleep at night after a zombie day. Fatigue does not equal sleepiness, and I miss my body's signals because they feel like what I've been feeling all day. So here I am, instagram and facebook and netflix skin wars and audiobook heir of fire. And my cat is adorable. #thisiswhatmigrainelookslike #notalwaysinbedbutofteninpain #migraineattack #chronicmigraine #chronicpain
Day 11 with this #complexmigraine and I’m just about to lose what little 🧠 I have left. I have been able to push through off and on today but the nausea, diplopia and vertigo are making it ten times harder. Add to that still not hearing from the neurologist with the results of my STAT MRI from last week and I’m a little spent. #migrainessuck #migrainewarrior #migraineawareness #thisiswhatmigrainelookslike
What #womenshistorymonth looks like when you have a #chronicillness like #chronicmigraine. 16 #migraine attacks during month of march 2019. ——— #thisiswhatmigrainelookslike #invisibleillness #livingwithmigraine #raiseacurtain #notjustahedache #makingtheinvisiblevisible #migraineawareness #migrainelife #disabilityvisibility #migraineregister
#inbed with my #migraine Migraine wakes me up but not enough to take a shot. Fall back to half sleep. Wake up again. Repeat. Finally inject #migrainemeds. Feel it going through my body, feel worse, then better. Soon I can get out of bed. This is #chroniclife and #lifewithmigraines #notjustahedache x-x-x-x-x-x-x-x-x-x-x #chronicmigraine #chronicpain #chronicillness #invisibleillness #livingwithmigraine #makingtheinvisiblevisible #migraineawareness #migraineart #migraineinspiredart #migrainediary #migraines #migraineselfie #narrativemedicine #thisiswhatmigrainelookslike
MIGRAINE COUNT #2018. Worked #inbed during a 4 day migraine counting my #migraine #selfportraits from 2018 : 122. (2017 was 147) ... Started Amovig July 11 2 injections as preventative treatment every 4 weeks. 81 migrianes before; 40 after. By September, I was going 1-2 weeks without a migraine. So remaining hopeful…. And I am back in the world today. #chroniclife ……… ——— ——— ……… #chronicmigraine #chronicpain #chronicillness #invisibleillness #livingwithmigraine #makingtheinvisiblevisible #migraineart #migraineawareness #migraineinspiredart #migrainediary #migrainemeds #migraines #migraineselfie #narrativemedicine #notjustahedache #thisiswhatmigrainelookslike #disabilitystudies #lifewithmigraines
So the past two days I’ve been hiding in the darkness with meds ice packs my #cefaly @cefaly_official my #headachehat @headachehat1 and just suffering. Looking st my tattoo #thistooshallpasstattoo —— I asked Darren to reassure me I’d get through it last night. He so kindly and lovingly did. #thisiswhatmigrainelookslike this is why I take selfies of my good days or hours bc behind the scenes this is the hell I live. One trigger and it’s over for me. This time it was heat and loud noises in a small room. I feel bad for my husband bc his life is impacted bc of this disease too. My joy today is that #bunnycat keeps checking on me and she even let me hold her. #theuglytruth #nofilter #migrainessuck #spoonie #catsarelife
We're ready! Officially a nerd in my own right now, not just by proxy. fingers crossed for no migraine on game night or I'll be heartbroken. #shadowrun #d20 #rpg #heroforge #chronicmigraine #chronicpain #migraineur #notalwaysinbedbutusuallyinpain #thisiswhatmigrainelookslike
Doing pretty bad. This is the flip side of the glamorous side. This is what being up all night in pain trying every trick looks like. Just documenting the bad with the good. #migrainessuck #ifeelhorrible #realty #thisiswhatmigrainelookslike #ilookterrible #notagoodday #thistooshallpass I’m just breathing through the pain and knowing I’ve been through it but it doesn’t make it fun. It makes me appreciate the fun pain free days. I’m just hanging in minute by minute right now waiting for relief. #justbeinghonest
Sometime between 4-6 years ago, I escalated from 1-4 migraines a month, to 15 days of migraine a month, and haven't improved. I pushed through, ignored, denied, and grieved for several of those years. . Sometime between 4-6 years ago, my life circumstances got harder, got more stressful, full of more micro aggressions, the chronic traumas, and my body translated it all to physical pain. The experiences and the coping mechanisms changed my body. My body uses the pain to get my attention. And I have finally, in the last 1-2 years, started paying attention. . Now, my focus is no longer on doing all the things or being all the things, or on following supposed-tos and shoulds or what someone thinks is right, or on changing people, or on changing me, or on keeping other folks happy or peaceful or accepting me. I am no longer putting others first, I am no longer dismissing who I am. . My focus is now MY quality of life, MY relationship with MY pain and MY body, MY needs, MY wants. My focus is me. and now my body is paying attention, and slowly, we are healing, together. . Onward. . Ps: [No, peanut butter or other foods are not a trigger. No, I do not want to hear about a cure. Chronic Migraine is complex neurological disease and not cured by oils or diets or yoga or anything singular.] . #chronicmigraine #chronicpain #migraineur #migrainelife #migraine #healing #spoonie #mindbodyawareness #mindfulness #selfcentered #change #recoveringfromreligion #recovering #recovery #thisiswhatmigrainelookslike #notalwaysinbedbutusuallyinpain
And then the XoXo exhibit was next, and it reminded me to release the tension, let go of the anger, and breathe. +50 points back to @mnchildmuseum, this is a beautiful exhibit and helped me recover from the strobe light experience. Xoxo #mnchildmuseum #migrainelife #migraineur #chronicmigraine #chronicpain #migraine #thisiswhatmigrainelookslike #notalwaysinbedbutusuallyinpain
Super cool mini city experience...until I was close to the fire engine replica and the kids activated the engine's emergency strobes. So, +10 points to @mnchildmuseum for realism but -100 points for having a bright strobe. I had to leave out real fast and hopefully will be able to stop the migraine it caused. The museum is active and loud and a lot to see hear, touch, and I wasn't feeling overwhelmed because I was having a good day. Doing my deep breathing and trying to call my body's panic as now every sound and movement is Too Much. #mnchildmuseum #migrainelife #triggers #triggerstacking #thisiswhatmigrainelookslike #notalwaysinbedbutusuallyinpain #migraine #chronicmigraine #chronicpain #migraineur
This the realness. What are my triggers? More like, what isn't? When migraines go chronic, it's like living constantly triggered, the neurological system in constant fight/flight mode, anticipating an attack at any moment. When migraines are not chronic, triggers matter more and can be avoided easier, they are more singular, where as in chronic, they are stacked up and just waiting to topple. This is not sustainable. Physiologically walking on eggshells is no less traumatizing than relationally walking on eggshells with an abusive partner. This is trauma response. This is trauma. This is trauma. This is trauma. . Part of my new practice of living with Chronic Migraine is coaching my neurological system to lessen, avoid, stop the panic, despite the existence of triggers. 20 years or more of evolutionary, unconscious physiological safety habits are hard to break. But they aren't involuntary. Thanks to strengthening my mind/body connection and awareness, I am slowly coaching my body into new habits with A Lot of help from trauma-informed body and mind professionals. . And yes, meanwhile, I am trying to reduce the triggers that surround me. Trying to change my context to encourage my healing. And, even if I can't get out of the triggering environment, I will learn new responses to this trauma. I will find a way to improve quality of life, to soothe and nurture my neurological system. Because even amidst the trauma and the triggers, even in the migraines, I am safe. I am safe. I am safe. . 💜💜💜 #migraine #chronicmigraine #chronicpain #migraineur #notalwaysinbedbutusuallyinpain #traumainformed #trauma #mindbody #mindbodyawareness #mindbodyconnection #thisiswhatmigrainelookslike #therapy @migraineinspiredart
iiiiiit's migraine weekend! Ugh. At least my hair is awesome (no filter!). I don't take migraine selfies a lot, not to hide the pain, but bc I prefer no clothes on when I hurt real bad 🤣 Stayed up too late Friday, so wasn't surprised by it Saturday. But I got some relied. So when it returned last night I did All The Right Things (TM) and here I am, called in sick to work, bored and pained and stuck. There was a barometric pressure change today, and tomorrow, so I probably would have avoided this only if I had no trigger stacking. Working on having a sense of agency in my migraines and acceptance of the way it is, a tricky combination. Now to focus on hydration and movement and mindset during the ouch. xo. #thisiswhatmigrainelookslike #notalwaysinbedbutusuallyinpain #migraineur #chronicmigraine #chronicpain #rainbowhair
Yeehaw, got my welcome kit for the new #aimovig #cgrp migraine prevention medicine! Still waiting in the med itself. Did you know that all of the current preventative meds used for migraine patients aren't made to prevent migraines, that's just a happy little accident? Not surprising that most/all of those don't work for chronic folks like me. But this is designed for chronic migraine prevention/reduction, it is cutting edge and a new approach to the whole field of migraine medicine. What a time to be alive! . It won't be a miracle, the early studies show it reduces frequency by 25-30% in those of us with 15 or more days of migraine each month. But I can live more with 5 extra days of being carefree per month. . I had to prove that I have tried multiple other preventatives, including botox, without success, in order to get it. Piece o cake for me to qualify then! It's not covered by my insurance, so I'll either be dropping $115 per monthly injection or hopefully joining their subsidized low cost program. . #migraine #chronicmigraine #chronicpain #migraineur #thisiswhatmigrainelookslike #notalwaysinbedbutusuallyinpain #migrainedisease #managingmigraine
When you're trying to trust the process, but it's not working... Day 5 of solid migraine and who knows how many days since I was last migraine free... #thisiswhatmigrainelookslike #migrainewarrior #migraineawareness #sickofmigraines #migraineday5
New/revived hobby! Decorating cakes for birthday or theme parties has always been fun for me. And now thanks to having a birthday, I have some fun tools to do it with! After spending time reflecting on how I want to use my energy, vs how I feel like I am required to use it, I realized how much I have missed this seemingly random creative outlet. Living with a chronic pain disease often means feeling powerless, so I am working to add intentional choice and to prioritize my joy in life, not my productivity or obligations. Decorating requires some physical & mental energy, so I can't always choose it if I have none to spare, but it sure is life giving, and I need more of these energy renewing activities in my life. Silly decorations or shapes are my usual jam, so learning piping and other shmancy styles is new and exciting. I don't like baking, so these are cheap box cakes. And I don't even really like eating cake! So send in your flavor and/or decor requests if you want to eat one of my next creations! Or send me Michael's craft store coupons! 😄 #chronicpain #migrainedisease #chronicmigraine #selfcare #migraineur #cakedecorating #cakedecorator #michaelscraftstore #wilton #wiltoncakes #haveyourcakeandeatittoo #thisiswhatmigrainelookslike #notalwaysinbedbutusuallyinpain
Staying on brand 🌈 as I face bravely the disabling nature of my chronic migraine. Buying a pill organizer was emotional for me. They're for people who are ill, and I struggle daily against the reality of how ill I am, or how much I am changed by my disease becoming chronic. It's been 4.5 years, and I still battle with the reality. I still doubt myself and my expertise in my own body and experiences ("are you sure you aren't just shirking housework because you would rather watch netflix?" "You must be exaggerating your pain level if you are at work," "Your energy will appear when you leave the house, you only feel tired because you are doing nothing"). I so rarely feel Great, I so rarely feel Motivated, or Energized. But I remember what they feel like, and I remind myself that if/when I feel them, I would jump at the chance to be productive, expend energy, do what I enjoy, and get the endorphins from that. And what do I enjoy? I know what non-chronic Elise liked to do with her time, how she had fun. But I can rarely do those. I don't know how or what to enjoy when I am fatigued, when I feel just ok. I don't know what is energy-giving for me anymore. Everything, even the good, is energy taking. And I don't always have energy for the taking, even for what I would enjoy. Netflix and naps help me live through the pains, help me recover, but they are not renewing, they are not restoring. I was active, social. The planner, initiator, the up for anything friend. The Strong One (TM). Now those roles/actions all exhaust me. So I guess I must change. I don't know how to be the sick version of me. I think part of this is the nature of chronic illness - we are constantly caught between hoping and seeking relief, a new treatment or more understanding of why or how to prevent attacks, and accepting that there is no cure, that the attacks will always come regardless, because we have a chronic disease. The hard weeks, like last week, bring back all of those questions. Am I doing enough? The good weeks bring back the reminders of what we've lost. I can accept my cureless disease in my life, but I don't know how to accept this emotional, identity seesaw that comes with it.
Someone is bored. I've been KO'd by my migraine disease all week, only made it to work twice. The relief from the infusion was short lived. #DiggerRoo decided to make her own fun and get me off the couch to give her attention in a creative way. This #oldladydog sure is puppy-like thanks to that #doggydementia . Turns out all she really needed was for me to send her to bed, where she fell into deep sleep quickly. Quirky dog. #bathroomtrash #dididothat #bordercolliehusky #halfahusky #enrichment #migraineur #chronicmigraine #migraine #migrainedisease #pto #thisiswhatmigrainelookslike #notalwaysinbedbutusuallyinpain #notjustaheadache
Tried something new today: migraine Infusion! Day 3 of a migraine that has been untouchable with every abortive and intervention med I have at my disposal. My new approach is to no longer "push though" the moderate pain days. So when I called in sick to work yesterday, it was so that I would improve enough to go today. But no change. So I called in sick today, naming and honoring the pain. And when T got home in the afternoon, I called my Neuro to take her up on an offer to attend their infusion center for bad flare ups. It was closing, so she sent the orders to Abbott Hospital where I was admitted to Neuro for the infusion. IV Fluids, 1000 mg depakon, then 1000 mg methylprednisolone, then zofran and adavan. And the fog lifted, the pain floated away. Still stiff and sore neck/shoulders, but I am BAR, hungry, and smiling naturally. Came in at a 9/10 pain, left at a 2, now at 1. IVs really creep me out, but this relief may be worth it. Hope it lasts. 🤞🏼🤞🏼🤞🏼🤞🏼😻😻😻😻😻 #migraine #migraineur #chronicmigraine #chronicpain #thisiswhatmigrainelookslike #notjustaheadache #notjustheadache #migrainedisease #migraineinfusion #notalwaysinbedbutusuallyinpain #depakote #adavan #methylprednisolone #managingmigraine #infusioncenter #noranneurological #abbottnorthwestern #ihateivs #intractablemigraine
My survival kit for being with my neeph at Mall of America Nickelodeon Universe and arcade with #chronicmigraine . Not pictured: all the meds I took beforehand and all the ones I brought with. All in a handy hip pack so no pressure on the shoulders. A break in a quiet dark place saved me! Oh and a latte. Oh and how could I forget having a non-ill partner with excellently able body and mind! #thisiswhatmigrainelookslike #notalwaysinbedbutusuallyinpain #migraineur #migraine #chronicpain #auntylife #auntie
Me today, too. But my shoulders aren't bricks, they/one is an ever tightening cord, or a winch. This one came on SO gradually that I recognized the early warning signs yesterday afternoon. But I didn't take my triptan, and last night it got worse. And this morning it got better, and tonight it got worse worse. Why I didn't take the triptan is complicated: one part was denial - maybe I'm actually yawning and rubbing my neck for some normal person reason? I didn't want to be having a migraine. The other part was the classical triptan dilemma - I wanted to "save" my 3/week doses for a day when I "needed it more". And last night I found myself blaming myself for it getting worse - should've taken the pill, shouldn't've gone on 2 walks, should've eaten better, shouldn't've gone back to work right after camping, etc etc etc. This morning T made me breakfast, held me, and reminded me that migraine is a disease, that it is never my fault. That I get 3-5/week no matter what I do or don't do. And that managing this chronic disease is A Lot. 💓 Today I didn't take a triptan, because they work best at the early warning signs. So I had T put on tiger balm for me and my shoulders, and he had me take my high dose of ibuprofen for the head pain. Today I didn't take a new CBD interruptive treatment, because I was at work and don't want to experiment on the clock. So I wore a hat for the light sensitivity and relied on my partner for thinking skills. This evening I didn't take a med because my brain fog was too thick, I didn't know what to take, so I used a heating pad for the weird tension around my eye. And when I got home, T held me, made me a snack, and chose and brought me a med and put me to bed. Chronic Migraine is A Lot. #migraine #chronicmigraine #migraineur #notalwaysinbedbutusuallyinpain #chronicpain #thisiswhatmigrainelookslike #notjustaheadache
My monthly retreats to a tent in the woods have begun again! Thrilled camping season is here to help me unwind, reset, and ground myself. Connecting with myself, with my love, and with the textures and rhythms of earth help me to disconnect from the hustle and bustle and frantic energies of modern living. Did you know that I get less migraines on these little retreats? Hhmmm... #mnstateparks #camping #tentlife #migraineur #chronicmigraine #chronicpain #invisibleillness #notalwaysinbedbutusuallyinpain #thisiswhatmigrainelookslike #ricelakestatepark
This is giving me all of the feels. 😻😻😻😻 Love it so much. Living with chronic pain and disabling disease inherently brings with it depression and anxiety. Painxiety, painger. Weekly visits with my psychotherapist is part of my treatment plan for migraine, because migraine isn't just a headache. Much of the stigma and public response to invisible illnesses are the same whether the illness is physical or psychological. I'm working on growing that protective bubble. #chronicpain #endthestigma #migraineur #chronicmigraine #paingry #painxiety #notalwaysinbedbutusuallyinpain #thisiswhatmigrainelookslike #mentalhealth #mentalhealthawareness #Repost @wonder_doodles (@get_repost) ・・・ Happy mental health awareness month! Sadly, as a therapist, I’ve heard so many of the unkind, insensitive, misguided and uninformed responses to the topic of mental health. I see the way it breaks people down, causes them to feel shame and isolation, destroys trust and relationship. Be kind for everyone you meet is fighting their own battle. Learn to listen rather than fight to fix or speak. A simple “I’m here. How can I help you?” Speaks greater volumes than you know! #mentalhealthawareness #breakthestigma #mentalhealthawarenessmonth #ichoosebeauty
If you are ever wondering what kind of day I am having with my health, you can tell based on my Pinterest activity...Yeah, I went back to bed today. #thisiswhatmigrainelookslike #restingpainface #chronicpainface #migraine #notalwaysinbedbutusuallyinpain #chronicmigraine #migraineur #chronicpain #brainfog #fatigue #invisibleillness #pinterestingmyemotions #spoonies #socialmediasupport #spoontheory #paingry #painsomnia #painxiety
8 days without migraine in April. Seasonal transitions are rough, y'all. No wonder I am behind at work and home. No migraine today! Last night's thunderstorm returned some stabilization to this region. No more waffling into summer, let's stay in spring for a spell. (Believe it or not, after a year of the great app Migraine Buddy, detailed tracking became overwhelming and I went back to minimalist paper.) #chronicmigraine #migraineur #migrainebrain #chronicpain #thisiswhatmigrainelookslike #notalwaysinbedbutusuallyinpain
#Batcat is grumpy about migraines, too. Back home with my person and my puppers and able to hide at home again from my weather-induced migraines. The first conference day I had relatively low pain, gratefully, so my info retention will at least be neuro-typical for half of my learnings. These intense temp, pressure, and humidity changes are hard on my system! I need us to pick a season and stabilize. #migraineur #thisiswhatmigrainelookslike #notalwaysinbedbutusuallyinpain #travelingwithmigraine #chronicpain #chronicmigraine #migrainebrain #brainfog
T and I went North to the #gunflinttrail for our 10 yr anniversary and caught a ride with a dogsled team! This was last month, when it was still winter and the undisturbed snow was up to my knees. Remembering the freeing feeling of being on vacation with the person I love and the winter wonderland of @gunflint_lodge_mn . I'm working to manifest the wonder and beauty of this trip into my every day life, whether I'm having a painful or or less pain day. Moving at my own pace, doing what I love. Easier said than done in our productivity-driven world, with an easily stressed system. #mindfulness #chronicpain #thisiswhatmigrainelookslike #notalwaysinbedbutusuallyinpain #dogsledding #upnorth #winter #anniversary #migraineur #travelingwithmigraine
It me! Well sorta. I don't have daily headache, but I have chronic/intractable migraine: migraine more than 15 days/month. And "normal" headaches frequently. Learning the different nuances between specific diagnoses, how to survive them without taking too many meds (cause that causes more...). And has me thinking of looking into inpatient intense treatment options, which is intimidating and inspiring at the same time. Still really run down from that long migraine run, so am only kind of absorbing this. @migrainesummit #migraineur #chronicmigraine #chronicpain #thisiswhatmigrainelookslike #notalwaysinbedbutusuallyinpain
#thisiswhatmigrainelookslike Day 4 of this one, the worst day yet. No break in the pain since yesterday noon, and now it is bad enough to miss work. Despite trying all sorts of different med combos, sleeping til 2 pm, heating pad or icyhot, here I am. Trying to watch the annual @migrainesummit talks cause they are only free for 24 hrs, but hurts too much to think. Resorting to comfort food of pb toast, and a homemade latte hoping the caffeine will help even while it makes me restless. Finished my audio novel, now to try watching Queer Eye to distract me from pain. #migraineur #sickday #gratefulforpto #migraineworldsummit #notalwaysinbedbutusuallyinpain #chronicpain #chronicmigraine #whenthemedsdontwork
#thisiswhatmigrainelookslike I had to leave the bout early. The photogs were using mounted bright flashes at every corner of the rink, and they went off so often that they started triggering a migraine like a strobe light would. @northstar_rollerderby I love your push for gender and queer inclusion, your embrace of kids and families, and I love the energy and atmosphere of bout day. And, this was really disappointing. I didn't expect to have a strobe problem during derby bouts! #migraine #migraineur #chronicpain #lifewithchronicpain #sensorysensitive #environmentaltriggers #flashinglights #notalwaysinbedbutusuallyinpain #strobelightsareeverywhere #lightsensitivity #migrainetriggers #rollerderby #northstarrollerderby
If you haven't heard, I've been really bummed about my new car Ellie the #hondaelement . I spent months researching and measuring vehicles to find what I wanted, and the Element was everything, and was a car I'd wanted for a long time. Within the first month, I realized that the seat style was causing me pain. I bought a seat cushion for sciatica, but it didnt help enough. The seat height and tilt are not adjustable, so I couldn't get relief. Hip, leg, back pain, contributing to neck pain and sleep troubles, which contribute to #migraine. Within 2 months, I had to swap cars with T, because the pain was now bothering me all day and night. I started massage, my cranial sacral bodyworkers helped with it, I started stretching, I adjusted my sleeping and sitting habits. And I fought hard to not blame or shame myself for buying a "dream car" instead of one that worked for my so easily pained body, when I knew that I needed lots of adjustability. Even T says it is an uncomfortable seat, and it was supposed to be our road tripping car. But good news! I'm buying more cushion types, using a TENS machine regularly, and with the other stuff I am doing, I've started driving her again. I don't know if it will last, I don't know if I can ride her all the way to Glacier National Park this summer, but I now have hope. And isn't it so damn cute?!? #hondaelementownersclub #chronicpain #thisiswhatmigrainelookslike #migraineur #notalwaysinbedbutusuallyinpain #lifewithchronicpain Ps. Broken camera lens 😢
Check out the Prodome - can last for several days. Days! One of the reasons it is so hard to identify triggers, because they can take place days before the migraine. For us chronic folks, who get 15+ migraines/month, it's near impossible to have a day with zer0 crummy feelings. Every day I am feeling at least one symptom or side effect of my migraines. #morethanjustaheadache #notalwaysinbedbutusuallyinpain #thisiswhatmigrainelookslike #migraineawareness #migraineur #chronicmigraine #chronicpain
...my monthly health budget is $300. #thisiswhatmigrainelookslike #migraineur #chronicmigraine #Repost @migraine.buddy (@get_repost) ・・・ Migraine does not "just" impact our daily life, activities, work or social life. It has a real impact on our finances as well! 😩😡😱
When I'm on day 6 of an on again off again migraine, and have reached my max of all my meds, and it gets worse than the days before. Sick day in bed! Tried Excedrin since I can't take my usuals, remembered why I never take it - the jitters are bad, the buzzy awake feeling won't let me rest, and the pain is still so bad that I really need to rest. Ibuprofen for life...except when it's too much. Thanks no thanks to the IUD induced cramps for using up all my monthly ibuprofen allotment. #thisiswhatmigrainelookslike #medicationoveruseheadache #migraineur #chronicmigraine #chronicpain #iud #mirena #ibuprofen #reboundheadache
Like seriously. What would I do without quality coverage employer funded health insurance? 63 claims in 2017. $2,250 cash spent by me on copays for appointments and prescriptions. I had zero special procedures in 2017. This is the annual cost of being me, medically speaking. This does not include monthly bodywork or massage or otc nsaids and supplements. $250 short of my annual out of pocket max. For existing. . (2016 thanks to kidney stone and sleep study I for sure hit and surpassed that max and got more coverage, phew). This is why I work 30 hours/week. . #thisiswhatmigrainelookslike #chronicmigraine #chronicpain #iamapreexistingcondition #migraineur #healthpartners #healthinsurance #employerprovidedhealthinsurance
Today I was sick/in pain without realizing it for several hours. I eventually realized that I was struggling to get myself ready for work, change tasks, etc. I was stuck, as I call it. Even once showered and dressed, late for work, I was dragging. I heard myself say "Ugh, you can't even feed yourself, what is wrong with you, get it together", as I stared dully at food that wasn't making itself. That shaming toxic tone is what alerted me, thankfully. "What's wrong is that I am ill. This is how people normally act and feel when ill," I realized. Nothing is wrong with who I am, and, something is wrong in my body. And I spread the pb on the bread, the one food I can make and eat when I am stuck, and asked my body what felt ill - and got multiple answers. And can we talk about the overlap of chronic pain and depression? One of the pros/cons of living with chronic pain is the separation of mind from body, realization from reality - at times, it's the only way we can survive the pain to push through whatever "must" happen. But it means I am so disconnected and dulled to my own body's experiences that I spent hours with a building migraine and cramps without acknowledging them. I can't respond with care if I don't acknowledge them, nor can I intervene with aid. I also can't fully feel them, which will enable me to release the held tension of surviving/ignoring them, if I'm not allowing myself to connect with them. I turned on the British baking show to lift my spirits, and gave myself permission to be late or call in sick to work, even though I wasn't "that" sick. Eating my pb and validating my body's experience didn't make my pain, brain fog, or fatigue magically disappear. But it did give me a glimmer of light in the depression of illness, and it did gently turn the shaming tone toward compassion and lovingkindness. And that is how I will thrive. #chronicpain #brainfog #dysmenorrhea #thisiswhatmigrainelookslike #mirena #pelvicfloordysfunction #vulvodynia #migraineur #migraine
#DiggerRoo says it is time to stop lying on the laundry and go to bed. Today I was low key and unproductive mostly by choice - so rare!! My IUD adjustment cramps varies between mild and moderate, and I could've folded that laundry. And I may get a headache tomorrow from lying around. AND I get to enjoy the good days in the ways that feel good to me - today that meant intentionally being unintentional, and just chillin. And the choice to chill is a wonderful and entirely different experience than debilitating pain keeping me at homettin bed/on laundry. Good days don't always have to mean being productive or social. THEY may look similar to sick days by action, but are entirely different by experience. Choice matters. Cheers to a good day! #thisiswhatmigrainelookslike #migraineur #chronicpain
(Part 3, see previous posts) . I accepted that my life would not be as fun, active, outgoing or social as it once was. Fighting my new reality was more draining than living it. I tried to stay active, to do fun things, and often found myself injured, and back in some other physical therapy. I cancel plans a lot due to pain. I found a new Neurologist, and decided that my migraines were one pain I could try to change. I spend 2 years with her experimenting with preventative and rescue meds, holistic methods, and experience a lot more pain and a little relief. But it feels good to be trying. Until she runs out of ideas, and says she doesn't know what to do with me anymore. Unexplained excessive migraines, no cure. . And then, cranial sacral, energy bodywork. Beautiful, terrifying, gentle, affirming, bodywork. It barely involves touch. It is so vulnerable, and so safe. Trauma-informed healers who encourage me, my body, in learning to relax, to release the held traumas. To stop sucking it up to survive, to focus on being, and knowing. To name my traumas, my pains, my needs. To be honest about its toll. To connect with my body, instead of put up walls between us. . Then I start to see a trauma & pain informed therapist. And slowly, I began to release, to grieve, to rage, to feel, to free. . And here I am today, with a trauma-informed GYN, who speaks soothingly, who honors my pain. Who treats the pains. Who wants to help with as little intrusion as possible. Who tells me I can go slow, I can stop. Who assures me. Who sedates me for a routine IUD insertion. She reminds me to breathe, to not suck it up to survive, to be present. . T made special breakfast, and came with today. He held my hand as I cried from the fear of setback, the hellish pain, the disappointment that I still felt the pain even through the sedating meds. Together I felt the pain instead of fought it, I felt the feelings instead of walling them off. Tomorrow I will visit my therapist, next week I will my bodyworkers. Together I will be ok. I will relax, I will connect with my body. Maybe this time, my pain will decrease. Maybe this time, my bleeding will slow. Maybe this time, my tensions will ease.
SRSLY. Do you see how these 2 meds, valium and percocet, are not supposed to be taken together? Do you see the "very bad" side effects that combining an opioid and a benzodiazepine can cause? I was prescribed both to sedate me for a mirena IUD insertion today (more on that later), so I will be calm and pain free. The Dr didn't say anything about these warnings, the pharmacist didn't say anything about these warnings, they both said to take them together. A simple statement if "now you'll see these super serious warnings, but you can ignore them because..." would be nice. Thanks to my paramedic partner who will be with me and who also gives these together in the field, I feel ok about it, but still. It's the principle. . ALSO. I take a variety of meds if I have a migraine, and neither the doctor nor the pharmacist said anything about whether I need to avoid my muscle relaxant, or my barbiturate, or my triptan, when I take these before the procedure. Narcotics and benzos are no joke, but I feel like they aren't taking this seriously. . ALSO ALSO. I was given 30 percocet, which has a huge warning sticker on it about addiction. My DR only prescribed 1 dose. 1. Not 30. So what's this about taking addiction and drug schedules seriously in the medical field? . I guess I'm grateful that I haven't received the stereotype of being a drug seeker and told I can't take the meds I need, like my fellow migraineurs have. . #chronicpain #mirena #dismenorrea #iud #drugsideeffects #contraindications #migraineur #thisiswhatmigrainelookslike
My low tech version of tracking. I have to make sure I don't get #medicationoveruseheadache (yeah, that's a thing...the one Rx that helps, #Maxalt, can only be taken 2-3 times a week, or it causes #reboundheadache, and so can #ibuprofen!). Since my brain can't be depended on in pain, I use scrap paper. Now debating whether it is worth the effort to update #migrainebuddy app so its stats are more accurate....gah. #unreliabledata #thisiswhatmigrainelookslike #migraineur @migraine.buddy
When the migraines are so overwhelmingly frequent and painful that I stop tracking them... #migrainebuddy is a great app, but it doesn't help when it thinks I've been living the high life for two months. #trackingfail #migraineur #thisiswhatmigrainelookslike @migraine.buddy
I'M SAYIN! #thisiswhatmigrainelookslike #migraineur @migraine.buddy #migrainebuddy
In other news, #thisiswhatmigrainelookslike also. Got myself outa bed and into the finance office and finalized my purchase of a 2010 Honda Element! Happy to be a member of the cult #hondaelementownersclub. Grateful I planned ahead for all thr thinking & deciding before today. Now to go back to sleep. #notalwaysinbedbutusuallyinpain
#crankyface at being on day 3 of migraine that just. won't. leave. And I forgot to refill my rx so can only use my plan B, C, & D meds to fight it. Couldn't stop at life for the last 48 hrs either, but today I get a break for a handful, so instead of catching up on things here I am! #migraineur #thisiswhatmigrainelookslike
He gradumatated! Paramedic Anton! and also #thisiswhatmigrainelookslike #notalwaysinbedbutusuallyinpain
I am 32 yrs old. I have owned this iron for 10 years, as long as I have been living on my own/with T. Today is my 3rd time using this. My housemates took it out of the package for its first use 5 years ago. idk what I am doing. #sendmartha #wheresmartha #pleasedontburnmyclothesorhouseorself #thisiswhatmigrainelookslike #notalwaysinbedbutusuallyinpain
The maybe if just I pull my hair the pain won't be as bad myth I try every time. Because even hair feels heavy and adds pressure to the #migraine. #thisiswhatmigrainelookslike #migraineur
When #oldladydog is having a needy anxious evening but I am in the migraine thralls and want her to leave me alone 😐 #doggydementia #migraineur #thisiswhatmigrainelookslike #halfahusky #bordercolliehusky #DiggerRoo
When I had enough sense to stay home sick with the migraine but can't think clearly enough to decide which medicine to take...i just sit here zoned out without medicine. someone put the right one in my system for me? #chronicpain #brainfog #migraineur #thisiswhatmigrainelookslike #migraine
Do you see me? 1. On a hike, lovely scenery. #migraine, low energy, trying to still enjoy myself, but depressed by the pain & fatigue and their limitations. Had to lie down for a rest while T kept exploring the rocks. Pending storm. 2. By the campfire, lovely scenery. No migraine, full of energy and positivity. Jumping for joy in the sunshine, storm came through the night before and cleared overnight. It is hard to live in 2 versions of my self. #thisiswhatmigrainelookslike #chronicpain #migraineur
Hashtag when the migraine won't go away or decrease at all despite meds, rest, heat, etc for 3 days...but isn't severe enough to fully keep me from going to work (I will function well enough, but be distracted by the pain, have to try harder, and be a bit discombobulated). Obnoxious and depressing. Almost wish it would get severe, I call in sick, and it ends same day. At least my hair matches my glasses and my pillow, that's cool and all. #thisiswhatmigrainelookslike #migraineur #migraines #rainbowhair
At least I've got cool hair #rainbowhair #migraineur #thisiswhatmigrainelookslike #migraine #gimmeallthemeds #highhumiditysucks
Sometimes migraine care involves Rogue One and chocolate. Other times it involves cancelled plans and survival. Only these 2 in the last 10 days, though! Power to the #botox, perhaps. #thisiswhatmigrainelookslike #migraineur
Follow your energy, therapist says. So no, I'm not out shopping for the glasses I still need and can't seem to find right, I'm curled up under a blankie with Rogue One and Ben & Jerry's. And it's good. The optical stores will be open tomorrow. And instead of making my mild migraine worse by forcing myself to be productive, I'm keeping it mild. And I'm in no state to make decisions anyway, it would be a stressful and fruitless attempt. Follow your energy! My body knows best. #thisiswhatmigrainelookslike #migraineur #rogueone #starwars #ben&jerry'sicecream #femaleempowerment #undoingoldhabits
This sucks. Migraine flare / attack has been lingering all week but at least yesterday I could function. Grateful I'm not missing anything important but fearful I'm going to land back in the ER - last time was a month ago which puts me back on my monthly pre-CGRP intractable schedule. X (12) said "What if you never get better?" Zo (8) said "She won't. There's no cure." I understand what both of them were getting at - X is afraid I might never be able to get out of bed again. Zo realizes that I will be able to get out of bed but will always have the disease. #ThisIsWhatMigraineLooksLike #IWillSurvive
When you are stubborn and love camping but have a horrible headache when it is time to head out... #thisiswhatmigrainelookslike #notjustaheadache
I kinda stood out at the traditional Catholic wedding... 😍 #ootd #thisisme #rainbowhair #genderbent #womeninmenswear . And also, #thisiswhatmigrainelookslike. I went because I was stubborn and wanted to dress up and go to a barn reception, not because I felt great
#thisiswhatmigrainelookslike - sometimes. aaand it also looks like me attending my employee annual review with a smile and professional presence, and teaching a class. Sometimes it looks like both in the same day. #migraine #migraineur #Migrainedisease
Auntie says, "Yeah, neeph! Let's go to an indoor bounce park for your birthday, I'll tale you , awesome!" #Migrainedisease be like "What?! Bouncing and jostling the brain around in flickering fluorescent lights, what were you thinking??" #thisiswhatmigrainelookslike #whoopsy