Community Responses: The Things You Miss

The things you truly enjoy in life tend to be nothing more than fond and vivid memories in the back of your mind when you live with chronic migraine. For many migraineurs, the pain and triggers that seem to lurk around every corner, prevent you from fully relishing in the daily blessings. Simply put, you no longer can be the YOU that you once were and yearn to be.

So we asked the community, what are things that you miss?

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The #1 response was spontaneity (what’s that again)! For so many, being able to feel reliable, plan ahead (even just the next day), make plans and honor that commitment was echoed by nearly all in the community.

  • Being reliable for my family, career and being seen as a hardworking dependable person
  • Checking things off (and maybe even finishing) my “to do” list
  • Being my old fun, energetic and confident self
  • Simply having ANY fun
  • Really loud rock concerts
  • Red wine
  • Caffeine
  • Being able to say that I’d never be reliant on prescription medications
  • Travel
  • Laying in the grass just feeling the sun on my face
  • Cranking the radio in my car and jamming out
  • Staying up late and wearing myself out while feeling good about it
  • Going to the movies
  • Perfume
  • Exercise
  • Dancing
  • Eating anything I want
  • Speak and think clearly on a consistent basis
  • Sleep
  • Being anywhere there is a large group of people gathering
  • Shopping or eating out anywhere/anytime due to fluorescent lighting (BIG trigger)

Lastly and most importantly, the final and consistent sentiment expressed by the community, was missing what could have been and all the little things in life that others are able to take for granted.

Thank you again to the Migraine.com community for always being so open and honest when you take the time to share these heartfelt comments!

We would love to hear more! Are there any other things that you miss that you would like to share with us? Please comment below.

Comments

View Comments (11)
  • Gto
    3 years ago

    I miss close to everything on this list. Could barely read 1/2 war thru
    ,then, starting to get shaken. So frustrated by my condition. What is person supposed to do when used to lead fairly active life, family , sports, work, socially – quality of life these days is quite frankly “Zero”. What is left to do , but, plug on thru another boring day, praying u don’t receive headache attack. Really sucks !!!

  • harryhill8240
    3 years ago

    Really helpful information, thanks. But when I was looking for more information about the condition I really find interesting article saying that migraine can also cause heart diseases. http://goo.gl/h9pTYh

  • H
    3 years ago

    Hi Joanna,
    Thank you for responding! I look forward to receiving my migraine.com newsletter and it has helped me to feel less lonely. Since most people don’t know what it is like to live with chronic migraines, it is so nice that there are caring people here who are going through some of the same things. It is comforting. Thanks again for taking the time to respond!
    H

  • Claire
    3 years ago

    I’d like to say I miss being normal and okay in crowds and all that, but I’ve never been able to do any of that. I guess what I miss is being able to pretend I’m okay. When I was younger I was so scared of being an outcast I would pretend to follow conversations and just zone out the overbearing noise in classrooms. Now I can’t do that anymore.

  • Wimidwife
    3 years ago

    I was at a party. I’m pretty introverted, so parties are a stretch. Anyhow, I found someone to talk to, and we went outside on the screen porch. Breezes are soothing to me. I didn’t have a migraine (I thought) but I was careful to sit with the sun at my back. After awhile some ladies joined us. Uh oh, one of them is wearing perfume, but the wind is blowing in the right direction. We were having fun, more ladies joined us and it started to get loud. I felt like I was in a cafeteria, I wanted to put in earplugs! Then another lady sat next to me, and she was wearing LOTS of perfume. That was it, I had to leave. I miss just being a normal person.

  • Nonster
    3 years ago

    I miss all that everyone has already said-which is I miss my ‘used to be life’ . The unpredictability of my headaches, having to cancel events and/or plans repeatedly . Being the Mom and wife who could do anything and everything with my boys and my husband without having to save up energy days beforehand. Basically I miss ME

  • H
    3 years ago

    Being able to plan a real future. Not only can I not plan short-term plans, but as so many migraineurs can empathize with, I can’t really plan a long-term future. I can’t plan to have children because I probably can’t take care of them. I can’t plan to work again because I don’t know if I will ever be able to again. I miss travelling and eating at restaurants and shopping in stores and going to festivals and concerts and plays and movies and so many things.

    I also miss miss having friends. As so many people have said, it is so hard to keep them when you are unpredictable and when your life is so different from every one else’s.

  • Joanna Bodner moderator author
    3 years ago

    Hi there H,
    Thank you greatly for taking the time to join in on this important topic. I hope as you read through the article and the comments which were made, that you are not alone in this struggle of all the big and little things in life you miss. We are grateful to have you part of our community which is creating and building on a stronger support system by members like yourself who take a minute to share their personal pieces of their migraine journey. We appreciate it!

    Warmly,
    Joanna (Migraine.com Team)

  • Tamara
    3 years ago

    I miss so much at this point and it looks like it’s only going to increase :'(

    -horseback riding and jumping : this makes me cry every day not being able to
    -being able to just move around without pain spikes
    -being able to plan events and not having to say “if my head behaves”
    -not be afraid during my road trips for work for a migraine to strand me on the side of the road
    -being able to play with my pets as much I want
    -being able to clean the house in one day and still have energy to do errands
    -having friends …. There is no one left
    -not having to deal with all this at only 28 years old
    -walking at sunset, driving at sunset through forest – glare and shade to sun to shade is a killer

    Might lose
    -ability to work, at least at the job I like or full time
    -my house if I can’t work full time
    -my goal of being a nutritionist
    -being able to treat myself – bare minimum budget is needed to survive
    -losing basically everything fun and I love to do

  • CarynHathaway
    3 years ago

    I live on the coast, the OuterBanks of NC with frequent pressure/weather changes . I miss being outside☹️ I miss hopping on my horse and GOING without being monitored , I miss driving around, being able to hold a conversation lasting more than small talk….

  • Holly H.
    3 years ago

    Driving and also being able to walk somewhere.
    All three types of migraines that I have are chronic/constant, but one of them is exertion/exercise-spiked, plus I can fade-out or pass-out.

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