This Is What Invisible Illness Looks Like

As invisible illness awareness week wrapped up yesterday, I think it’s important for people to see who we are advocating for. The real faces of the people who aren’t invisible even though their illnesses are.


I’m what someone with an invisible illness looks like. There’s nothing visible that shouts for attention, yet for me there’s a constant invisible pain inside my head. I have become a master of disguise, hiding my rollercoaster of symptoms behind blue eyes & soft, sometimes strategic, smiles. 

Whatever illness you are facing, I hope I can remind you that you are not alone. There’s always somewhere you can turn and someone you can talk to when you feel like you’re losing your fight. 💓

But for my invisible illness soldiers, remind yourself every day that just because your illness is invisible, it does not mean that you are. We have a tendency to put on a front for others when we don’t feel well, but we don’t have to do that all of the time. It’s ok to frown instead of smile sometimes. It’s ok to cry when you’re hurting instead of putting on your suit of armor to protect yourself. 

You are not alone nor invisible. Keep your head up and your heart strong 💛

Vote For The Headache Heroine in the 5th Annual Health Activist Awards!

I’ve been nominated for three award categories for the 5th Annual WEGO Health Activist Awards this year! The categories I’ve been nominated for are below:

  • Best in Show: Instagram
  • Best in Show: Pinterest
  • Rookie of the Year

Please take a quick minute or two to vote for me on my nominee profile!

I truly appreciate all of the support and am very humbled and excited to even be thought of for these awards! It’s extremely touching and motivating to know that I’ve at least reached and helped one other person over the past year through The Headache Heroine.

Thank you in advance ❤

By The Ocean With My Thoughts

The sound of water says what I think.

― Zhuangzi

 

There’s this feeling I get whenever I walk onto a beach at night time. The darkness everywhere, the unspoken strength and mystery of the strong ocean ahead of me, the stillness of the air, and the intimacy felt when I’m sitting on the sand. The inevitable introspective thoughts immediately take up residence in my head the moment my feet hit the cool sand. It’s as if I’ve opened up a door to a different world. I’ve left my reality for only a bit and everything from my everyday life is no longer apart of this temporary world I’ve stumbled into.

 

There’s a reason I love the beach so much. Because the feeling I described above cannot be replicated, for me, by anything else. No matter if I go to the beach for a day, a weekend or a whole week, I try to save at least 30 minutes of my trip to step down to where the ocean meets the sand after the sun has gone down.

 

I’ve sat with friends, with family, with my boyfriend and at times just myself. No matter what, there’s always meaningful conversation and deep thoughts that I hadn’t been able to find before.

 

I’ve found inspiration, grew closer in faith, came to realizations, wondered endlessly and learned a lot about myself by the water. I’ve also argued, been blue with sadness, made mistakes, ignored true happiness, pushed people away, and built walls by the water.

 

No matter what it’s been about, no matter who I’m with or if I’m alone, the water has always been able to tell me what I was already thinking–no matter if I was aware of it or not.

 

The Lotus Flower

It wasn’t planted in a bed of full soil among other lucky seeds. It wasn’t given what others were blessed with. It was born an underdog.

I was not built to live in a fully healthy body like so many others around me. I was handed cards that others have been blessed not to have received. I was born an underdog.

It grows within muddied waters and it has to push its way out to get some light in its life.

I continue to grow despite each new obstacle that life throws my way. I push my body to whatever helps it feel healthier.

It reaches the light, blossoms and thrives despite its unfavorable beginnings. It is a Cinderella story.

I push myself further and harder each day so that I, too, can blossom. So that I may reach my sun and come out on top, despite the unfavorable circumstances I’ve been given. Despite the never ending headaches and the on-going speed bumps in my journey to find treatments that help. Despite the wear and tear that my heart, mind and body have undergrone throughout it all.

I will become the Cinderella story.


 

 

Monday Mantra: Adopt The Pace of Nature

Some views and experiences change our outlooks on things. Being in the presence of pure, natural beauty is humbling and I always take a minute to myself, even in a crowd, to soak it up, close my eyes and just be still. 

Niagara was one of those places that changed my outlook on how I move through this life and through my health journey. I spend a lot of time rushing through things and then getting bad anxiety and frustration when things happen late or don’t go as planned. This goes for my personal life and my life with chronic illness.

I aim to live a more patient life where I can react in a calm manner to things that go not originally as planned. Instead of rushing to a conclusion without consulting a doctor, instead I will try to sort out symptoms and have a conversation about possibilities. Instead of worrying and growing anxious when my headaches continue to thrive, I will try to calmly take a set back to look at everything I’m trying and doing and then talk to my doctor about my next steps.

These types of goals I will try to transfer over to my life in other areas as well: work, relationship, family, etc. 

Adopt the pace of nature: her secret is patience.

-Ralph Waldo Emerson

Things I’m Good At, Thanks To My Chronic Headaches & Narcolepsy

 

I’m really good at:

  1. Sleeping. My spirit animal is sloth.
  2. Making plans and then backing out last minute. Just because I hate doing it, doesn’t change the fact that I’m awesome at it.
  3. Collecting. I collect prescriptions, vitamins, test results, and doctor business cards
  4. Talking. About anything–doesn’t have to be health related. I’m just really good at talking.
  5. Showing compassion. Having endured years of chronic pain, health issues, emotional roller coaster rides, mental hardships and more, I find it really easy to feel compassion for other people and their journeys and struggles. I also just really like seeing people smile, so that’s more motivation.
  6. Surprising people. With my unexpected knowledge of various medicines, methods, symptoms and diagnoses. I promise I won’t walk in and pretend to be your doctor though.
  7. Enjoying time by myself. Because of how often I have to cancel plans or stay in and rest, I’ve learned how to truly enjoy and appreciate my own company. It actually kinda confuses me when people say they don’t like spending time alone. Like–I think I’m super cool, why wouldn’t I want to hangout with me?
  8. Picking myself up after a fall. More often than not, I’m the only one who can get myself up again after I’ve taken a hard fall in my health journey. Everyone will fall down in life, but we only truly live when we’re getting back up again.
  9. Managing pain. I don’t like to toot my own horn, but I’m pretty damn impressed by myself and my strength. I have continued so many activities while enduring my worst-pain level headaches/migraines and I never know how I did it once it’s over.
  10. Really enjoying life in all of it’s beauty. Life will never be full of only sunshine. There will be storms and we will get rained on. But each time the sun comes out, my smile gets brighter and my love for this world gets greater. Enjoying the simple things in life, putting more of my time toward seeing people who lift me up and doing more of what sets my soul on fire are all things I have seen myself get better at doing.

What’s This Feeling I Feel?

Is it anger? Resentment? Envy?

Maybe a mixture of all three?

I don’t really have the right to feel any of them, honestly. I’m angry because it’s like I took three steps forward and ten steps backward. I’m filled with resentment because my peers are out drinking, socializing, and filling their lives with excitement on their days off, while I’m sitting inside brainstorming and researching ways to bring my pain down even just a notch. I envy people who can do things even as simple as sit around the dinner table with their families and only worry about when to get up for seconds in order to not miss out on the really good food everyone wants to devour.

I should replace my anger with disappointment, my resentment with understanding and my envy with good will. I just need to remind myself that I’m allowed to be disappointed and frustrated at my situation, but never angry. I can’t be angry because today I woke up, opened my eyes and kept on going. I can’t resent others for doing what I wish I could be. We were all given different battles to fight, and I have to understand that my battle is just different than my friends battles. I shouldn’t be envious, because I know I have good things in my life too. I should be happy that my friends are able to enjoy a life without constant physical pain. I never want to drag anyone and would never wish my situation upon even my worst enemy. I think it’s alright for me to be jealous every once in a while, because I’m only human. But I will try to push envy away from my side when I can.

 

A Farewell Letter To My First Love: The Softball Field. From A Girl With A Chronic Illness.

I grew up with you. Loving you, caring for you, constantly visiting you and sometimes, quite honestly, despising you.

You brought me some of my closest friends, fondest memories, funniest stories, and some of my most valued life lessons. You also brought me some of my first curse words, toughest frustrations, and inevitable girl drama.

You taught me that winning is fun, but that losing will happen too. To never give up, even when you’re far behind. That the underdog can be a champion. To never underestimate people. To stand up for myself and the people I care for. You taught me what it means to be mature when you want to be anything but that. You taught me how to learn but also how to lead. You taught me loyalty and what it means to be a team-player. You taught me love and you taught me loss.

The first time we met, I was too young to recall. And now, all these years later, just the sight of you brings a warmth to my heart that not many others can claim.

Each time we met, the fire within me started. There was always an excitement that couldn’t be fulfilled doing anything else.

When I walked away from you, I either felt satisfaction and joy or disappointment and anger.

Before all this happened, I never expected to one day walk away from you feeling nothing but emptiness.

I never knew something I loved so deeply and valued so greatly would one day make me feel hopeless, sad and defeated.

Every now and then, though, I tell myself that this time it’ll be different.That I will put on my glove and run around the outfield, feeling as free as I once did. Weightless and immortal.That this time I’ll take the bat in my hands and feel the rush as I connect with the ball. Run around, passing my dad waving me toward home plate with a look of pure joy and pride. That this time I’ll step out on your dirt and not worry about how bad I’ll want to tear off my head this time around. That I won’t feel the excruciating pain inside my skull.

And each time, I’m let down. My thoughts become dreams that just need to be put to bed.

We’ve been taught that we will experience love and loss in our life. However, no matter how much we’re taught it, we’re never prepared for it. We know that we will enjoy victory but also suffer defeat. The victory will never feel sweeter and the defeat never more bitter. We will learn what it feels to be completely alive but also what it’s like to be completely numb.

Every time I used to walk away from you, there was no goodbye, only the unspoken promise that I would be back soon. But the truth of the matter is, I never expected my headaches to last this long into my young life. I always was hopeful that something, someone, somewhere would cure me or find a treatment for me that allowed me to be active again. To play again. To truly be one with you again. As you know though, that’s not the case and I don’t think it ever really will be.

So now, I leave you with no return date, only the hope that one day we may meet again.

It’s hard to leave a first love behind. But, maybe we have to sometimes. Maybe in order to move on, we need to find something else to replace the hole where that love once was.

But this statement I know to be true: You never forget your first love.

softball diamond

 

What’s the Word? “Kindred” 🌸

  
I started this blog to help myself and others feel less alone in this life. I used to feel like I was the only one for miles and miles who was battling such chronic and numerous health issues while everyone around me was living normal lives. But I have found a community that makes me feel so supported and not alone. We all are connected even if we’re strangers. The things we share in common help us provide support to one another in order to continue to fight our daily battles. 

There’s a reason we all share our stories here and keep coming back to support each other day after day. It’s because even though we may all be strangers, we are connected through our journeys. We share the similar battles, frustrations and experiences. It’s great to find and feel connected to other people when before you felt like the only one on earth going through what you’re going through. 

Soulful Sunday

   for all of you who just can’t understand why things are the way they are right now. Keep holding on to the faith that one day we will understand. 

I can’t understand why it is I’m feeling the way I’m feeling lately, both physically and mentally. Can’t figure out why I haven’t been able to get out of this funk and can’t figure out why this time is different than others and why my head is doing so bad for so long, so different than times before.

Holding on to the faith that one day I will understand. Hoping you all are doing the same, no matter what it is that you’re trying to understand.