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 💛

Be Kind, For Everyone Is Fighting A Battle Of Their Own 

When you’re walking down the street and breeze by the people moving past you, how often do you glance up at the faces that are blurring by? How often do you take the chance to look a stranger in the eyes and really try to read their story? There’s a story behind every face you see, each one unique and different than the story walking beside them.

Stories are more often than not, unpredictable. We don’t know who the characters are until we get to know them. We don’t know when the plot twists will turn up. We can’t know in advance if or when an antagonist will make an appearance, short lived or prolonged. There’s no telling when the happy ending will wrap everything up and tuck us snugly into bed.

Every person you come across has something they’re not sharing, some battle they’re facing, some story they’re a part of that we as outsiders, have no insight on. You see, life isn’t fair. It throws us curveballs we swing and miss at, it throws us off our paths, it presents the unexpected and its hardships discriminate against no one. 

As someone with a story of your own, the human and compassionate thing to do, is to be kind to every person you meet because you have no idea what phase of their story that they’re in.

“Be kind, for everyone you meet is fighting a hard battle.”

I’m battling daily chronic headaches, narcolepsy and chronic pain that has yet to be diagnosed. There is a constant pounding within my skull that strangers I see would have zero reason to expect me to be feeling. With my chronic migraine headaches along with my other medical mysteries comes anxiety issues, emotional lows creating a hermit like version of myself, unnecessary guilt, frequent frustration and so much more that I choose to hide either behind a smile or under my covers.

Even though I surround myself with people who are loving, kind, compassionate, generous, supportive and reliable, it’s just a fact of life that I will stumble upon people every once in a while who are less than kind to me. I’m only human and can’t help but make a sour face when sour words or thoughts are tossed my way. But I always turn back and tell myself that it’s the right thing to do to give that person the benefit of the doubt. They don’t know me. They don’t know my battles, my fights and my journey. They haven’t been given the book to start reading my story.Just like I don’t know their battle and their journey. Perhaps they are facing an uphill battle and are having a bad day filled with frustrations. So even if they may not have thrown the kindness my way, it’s all I can do to throw it back their way.

We’ll never understand what someone may be going through unless they open up to us about it. I promise you though, that any and everyone you meet is facing a battle that you know nothing about. All you can do, is be kind and show them the love you know that they need to keep fighting whatever battle that they’re up against.

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 ❤

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.

 

My Anaphlyaxis Story

For those who may have seen my previous post, the post below is the story I wrote for the Food Allergy Resource and Education website:

I was at a restaurant and had made my allergies very well known to the waiter and the staff. However, they didn’t take my allergy seriously and made all of my food on the same station that they had made their famous fish menu item. I had an anaphylactic reaction about a minute after having a tiny bite of what I thought to be a “safe” cucumber with tzatziki sauce.

This was my first reaction since I had been diagnosed and I wasn’t sure when to use my epinephrine auto-injector and decided to wait because I thought mysymptoms were getting better. I told myself if I calmed down, breathed deep, and didn’t think about it, that I would feel better. I am so lucky and glad that I was with a close friend who drove me to the closest ER. She had actually tried to use my auto-injector on me, but didn’t know how to use it correctly. She, in the heat of the moment, forgot to remove the safety cap. And honestly, I don’t blame her. It was probably a terrifying moment for her as well. So that’s when I decided to wait out my symptoms.

I now know that when in doubt, you use your epinephrine auto-injector. I learned that you should NOT wait out your symptoms. Since then, I have taught and continue to teach all of my friends and family how to use an auto-injector. The most important thing is that you educate yourself on the symptoms and treatments, and you educate your loved ones as well.

Always carry your epinephrine. Always read labels. Never feel embarrassed or like you’re annoying someone when you ask to read a label, or you ask how they cooked something, or you ask how they cleaned their kitchen ware. Do not feel like you are burdening anyone, because it is your life and safety at hand.Know that you are not alone, also. There are always a tremendous amount of support and resources out there for you.

Tackle Your Tuesday 

  
It’s the first day of March, y’all! Where the heck does time goooo (cue the cliche reminiscing and questioning of how time flies so fast)
For me, February was a month of stress, anxiety, ER visits, painful and long headaches, and lots of trying to keep myself positive. 

Well, this month I am going to try my best to remind myself every single that that no matter what happens, that things will work out. Even if things seem scary, overwhelming or impossible, things will work out. 

Gotta keep the faith and battle on 🌸✨ 

Stress Relief Tip: Find a Meditation Method That Works For You

  
Stress relief tip: find your own method of mediation
Every day we experience new stress and come across new bumps in the road. Spoonies specifically face unpredictable days every day. The best way to deal with this stress and life’s complications, is to find a way to meditate, relax, and bring peace to your mind. 
One way for me is to do yoga. Even though I can’t always practice yoga because of my headaches, when I’m feeling well enough, I try to find time to get on my mat. It helps me quiet my mind, strengthen my body, and push aside things that are worrying or bothering me. 
Do any of you all use yoga as a method of personal meditation? What do you do for yourself in order to find peace of mind during times of stress?

Song of the Week: “Lean on Me”–Bill Withers

 

If there is a load
You have to bear that you can’t carry
I’m right up the road, I’ll share your load
If you just call me

This song of the week is for all of the people who have stood next to me in this health journey of mine. For the people who said without hesitation “lean on me,” “I’m here for you,” “how can I help?” For the people who have helped me carry the load when I’m too weak to carry it alone.For the people who ask how my doctor visits are going (if they’re not there themselves), who check in to see how I’m feeling that week and if I’ve made any progress. For the people who will read this and know without a doubt that they’re the ones I’m talking about. The ones who whether they’re sitting beside me, or sitting miles away in another state, are there when I need someone.

This song is also for all of the people like me,  on my side of the journey. The ones who have felt troubled, pained, sorrowed, and frustrated (aka every single one of you.) For the ones who have needed someone to lean on. For the people who too often let their pride get in the way of asking for help. To the fighters.

 

What’s the Word: Generate

  
To cause to arise or come about.

Any spoonie knows that a lot of the journey involves waiting around for a diagnosis, test results, treatments, answers, and seeing if treatments are even working. Sometimes (too often) doctors can’t figure us out. 

We wait around for positive things to happen in a world where we run into so many road blocks.

Sometimes, though, it’s up to us to take control of our own journey. Be the captain of your own ship, as they say. 

We need to generate positivity in our lives. If we wait around for the positive things to happen to us, they rarely will. 

This is your journey–you’ll be amazed what you can do with it when you put your back into it.