Posted in #teamhadley, Beating Hemiplegic Migraine, Chronic Migraine, Daily Migraine, Health Blog, Hemiplegic Migraine, Just Keep Keepin On, Seizures, Today I Win, Uncategorized

#28 “It’s Real.”

To those who make us feel doubted, lonely, crazy, devastated, pathetic, and embarrassed,

We have something to tell you. We consist of the people you have let down. We are the patient that “just has headaches”, not the next that has something serious. We are the patient that does not fit your checklist, so of course we are crazy. We are the patient you checked your watch and walked out on after 15 minutes, while we were in mid-sentence, because you had your next client. We are the client that’s symptoms just “don’t line up”? That is us. The American Migraine Foundation knows us as the 36 million migraine sufferers in the United States, that is over 10% of our population. We are the 90% of chronic migrainers unable to work on some level. The 14 million U.S. sufferers of chronic daily migraine, they are our peers. We are the ONE in every ten thousandth person to have Hemiplegic Migraines, familial or sporadic. And it is our turn to talk.

The Mighty recently started a conversation via Facebook. This hot topic quickly received the input of 494 migrainers. The question? “To our readers who live with migraines, what do you wish people could grasp about this debilitating and often invisible condition?” The status immediately had hundreds of people, all commonly in pain, describing their biggest insecurity linked to their disease or bad health. I quickly read the polished article with a carefully picked 15 comments we wish everyone could understand. I know I, and so many others, appreciated the honest depiction of something so commonly dismissed.

So, Dr. Big Wig, mean “friends”, gossip greedy townies, and family that refusing to understand; the top five answers are what we usually want to slap in your face.

  1. “It’s not just a headache.” Stephanie Richards
  2. “Chronic Migraines are on a totally different level than the occasional migraine. You end up living in fear of when the next one will hit.” – Joey Caylor Spencer 
  3. “It’s not something I can control, and it’s not my fault.” – Sara Byk
  4. “When I know it’s coming, I get desperate for anything that will stop it.” – Melissa Goodman 
  5. “Excedrin Migraine is a complete waste of time if you have an actual migraine. And yes, three days later, I’m still on the same migraine. And no, I can’t just tough it out.” – Jen Briggs 

It’s still weird to me when I read a comment from a person states, or countries, away from me and they are describing my attacks to a perfect T. That’s how much we struggle. It takes just one physically incapacitating day to wreck our emotional well-being, leaving us miserable, in pain, and feeling lonely. Until we read again comments of those in the same place as we are, that is when we can grasp some sanity and mental relief. Surely I’ll adjust at some point and not keep getting impressed by someone understanding me. Is this just me? lol

I clicked the link that brought me to the Facebook original post and an impressive amount of comments to read through. Every time I read “put your own thoughts here” chats within my support groups, especially my HM group, I get this odd hollow cringe feeling deep in my stomach. It’s like I’m nervous, hoping to find others to relate to, but also feeling guilty that I’m hoping for someone else to have these scary experiences. Silly, yes, I know. Reading each of those comments, so many hitting too close to home, I kick myself for letting it make me emotional. However, it never fails to get me a little each time. Though it made me so close to tearing up(…maybe I did), post after post exposing some of our hardest insecurities was amazing to read. Discussions with fellow migrainers= story comparisons, doctor references, success stories, and learning more. Even though it took me a million screen shots to pick just five favorites, I finally did so. I felt like these people’s comments even went with a tone similar to my own…

  1. “They are the worst. Anyone who says different has never experienced a migraine where it feels like your head is about to split open and some alien is going to pop out.” -unknown
  2. “Even light and air hurt. “My skin feels like somebody sand papered it. It’s not something one can just snap out of.” – Theresa Belcourt
  3. “If you tell me to take excedrin one more time I’m going to pull my hair out…after I finish getting sick and crying.” – Ambra King
  4. “I’m not faking when I still go to work or try to be productive. I still have to try to live my life, even though I have a chronic condition.” – Trina Theisen
  5. “Complicated(usually hemiplegic) and debilitating lasting two days w/o abortive treatment. My MDs prepare me with abortives to prevent ER trips. However, sometimes the pain and symptoms can be as severe as a craniotomy w/ cortical resection. And dehydration can be severe.” –FB comment   *although this isn’t worded the best, and I have no idea what a cortical resection means, The point is still direct to HM*
  6. “It’s different for everyone. So your sisters cousins uncle’s ex fiancé that had them, they ARE NOT the same as mine.” – Kim Robinson

The honest emotional support is vital to all of us. But we are also always craving new information and the latest updates. It’s nice to have people to pass around conversation for those little knowledge points, too. We are always learning more. We could bet all of you know-it-alls and doctorates with who knows more about our condition, or migraines in general and we’ll win every time.

Sincerely,

Those of us who are tough, brave, fighters and migraine know-it-alls.

Check out The Mighty’s article here👇🏼

http://themighty.com/2016/03/what-migraines-really-feel-like-from-people-who-get-them/

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3 thoughts on “#28 “It’s Real.”

  1. This is powerful. During my recent hospitalization, my neurologist from my medical center actually went to the hospital I was at to collaborate with the doctors there. It really was one of the most beautiful things I saw, and something I will always appreciate. She has been helping my family so hard, A thank you is not enough. I am glad this place has treated you so right!!!

    Liked by 1 person

    1. Thank you! I spent the last 13 days in the hospital feeding tube and all, got to go home for 4 days and they brought me back in for another 5-7 days. BUT, they’ve all worked hard and together so well, a few have even started reading my blog. When you find a good medical team we all know to hold on tight!! I hope you’re on an up side, for now. Good luck to you!!! 🙂

      Like

      1. Oh wow. Sorry you had to go through that; could not imagine it. You are truly an inspiring young lady; a true trooper!
        Glad your team is on it! Positive vibes your way

        Liked by 1 person

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