How do I fight a battle for all of us when I’m focused on my own fight?

I’ve been at a pretty high pain level for the last 2 weeks.  My Botox started wearing off about 6 weeks ago and it was like a switch went off when it wore off.  I have had it a few times over the years but totally sporadically due to the costs of insurance not paying, getting pregnant, and other life events.  The last time I got it, my face drooped like I had had a stroke and I wasn’t overly ambitious to try it again.  On the other hand, it works for me.  The only reason that I had migraine surgery was because I have had some sort of success.  With that said, to me success is defined as having fewer intense daily headaches and less frequent “knock my socks off” migraines.  I will never be cured or headache free so keeping my expectations realistic is important.  So the last few weeks have been tough.  While I was down and out I saw the world pass me by, as usual, but this time I missed my migraine community and blogging.  I saw an important issue of stigma pass by with little I could do and now I’ve seen the topic of advocacy arising.  The crazy thing about Migraines is that it and the people who have them are so misunderstood.  The question arises, why don’t we do more for ourselves?  Well, I am a perfect example.  I have had migraines since I was 5 and for 25 years I did nothing but concentrate on my own condition and didn’t realize the world of suffers like me.  These last 2 weeks I was able to only focus on my pain level and how to survive.  I put all my efforts into my children every day.  I focused on them and when they were napping or asleep I focused on medicating, icing, and above all resting.  So how do I change the stigma and advocate for myself when I’m just focused on making dinner, standing up straight, playing with my babies without showing my pain or simply putting the silverware and dishes away while making as little noise possible?  The ironic thing about me writing a blog is that when my pain level is high, I can’t read, write, or have screen time.   I don’t think that I am the only person facing daily headaches and how to survive.  So how does it change?  While we each fight our own battles every day we need to collectively find a way to change as a group.  I think the loved ones who are supportive also focus on the individual who suffers and are unaware of the millions of others who are affected like I was for so many years.  We don’t have huge fund raisers, we don’t have charity walks in every city, and we don’t have tons of ways to “help.” I know that my loved ones are as sick of my migraines as I am but they best support the cause by helping me as a person, not the migraine community as a group.   At the end of the 2 weeks my husband came home from a business trip and I was so sick of my pain. He arrived home the day I had my Botox injections.  They seriously hurt along with weeks of being exhausted from pain and the fear of it traveling and freezing my face so it was a tough day.   He had no clue about the pain level I was in while he was gone and by the time he came home I was just so sick of myself, my bed, my foggy painful brain, and everything else that came with it that I simply just wanted to move on.  So how do I help others when I’m so focused on helping myself?  Once my pain level lowered all I wanted to do was rejoin life in a more active way.  I made a list of 20 things to do and worked on it all week.  I not only made up for things that I needed to do and was too sick to do, but I did things to get ahead of the ball before it rose again.  I didn’t want to sit around typing about my pain, I wanted to live with less of it and took full advantage when I did.  So I guess the question is, how do I fight a battle for all of us when I’m focused on my own fight?

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6 thoughts on “How do I fight a battle for all of us when I’m focused on my own fight?

  1. Great article! You sound just like me. I want to fight for everyone with headache disorders, but struggle so much with either my pain or debiltating symptoms that comes from my migraines and cluster headaches.

    I have a LONG list of what I’d like to accomplish and make every attempt to complete every tasks. I did stop beating myself up over the days I can’t physically get out of bed. I just accept that there are limitations and stay positive the next day will be a productive one.

    I truly believe a major shift in how headache disorders are handled by society and the medical field is on the horizon.

    Like

  2. Well written Sarah Very insightful, I think you do make a difference in your blogs I know it is helping me understand your world – one I am not at all knowledgeable of so Celebrate yourself today, feel good and well and loved- Debbie

    Sent from my iPhone

    Like

  3. Sarah,

    Great post! We all have times when we simply can’t “fight,” and it’s all we can do to hang on. IMO, we should all advocate when we can, and not worry about it when we can’t. If we all do it that way, there will be some Migraineurs able to advocate at any given time. Advocacy efforts don’t have to be huge, time consuming, or exhausting. Sometimes, it’s as simple as explaining Migraine to someone you know or taking a minute or less to sign a petition.

    You most likely do more good than you think because of the people who come across your blog and learn from you.

    take care,
    Teri

    Like

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