HAWMC Day 7: Starting My Advocacy Journey

We all need people in our lives who push us to do and be greater. Sometimes it’s hard to accept advice that someone has to offer, but most of the time, it’s worth it to hear them out.

I never even thought about sharing my story about living with chronic daily headaches, because I never thought anyone would really need or want to hear and read about it. The thought never crossed my mind.

That was until one day, during a pretty dark and frustrating period of my life when I was experiencing 6+/10 head pain every single day for a long string of time. I was living with my older sister at the time, so she knew and could see that I was living in constant pain and that I was having a difficult time dealing with it. One day she suggested an idea that turned out to be my motivation behind creating The Headache Heroine. She said “Why don’t you write about all of this?” She suggested I use it as a coping mechanism, since I already had a love for writing. Why not take my love for writing and do something positive with it? She helped me realize that it could be therapeutic for me, which turned about to be very true.

At first, I was worried that sharing my story would just make me sound like I was throwing myself a pity party and was inviting people to bring gifts of sympathy. But that’s not what I was going for and that’s not the kind of vibe I wanted to throw out into the world.

What actually ended up happening, was that I got an outpouring of encouragement and praise for being “brave” for being vulnerable enough to start opening up about my health and really putting it all out there. I had been hesitant to share my blog posts on platforms like Facebook and Instagram, because I didn’t want to bug people and add things to their newsfeed that they didn’t want to look at/read. But then I realized, that if people wanted to skip over what I shared, they would, and if people wanted to read what I wrote, then they would. I eventually created a separate Instagram account for my health journey, but I still tried to tell myself not to worry about what others thought.

After a few months of being worried that people would judge or roll their eyes at the stories I was posting and sharing, I slowly grew much more comfortable with sharing my story. I realized that I was actually reaching people who really appreciated and benefited from my words. I became less concerned with those people who didn’t care about my story, and focused all my attention on the people who did care and who actually benefited from hearing my story and my advice.

While advocating and getting my voice out there actually helps me cope and feel more positive about myself and my life with chronic daily headaches, I also know that I have helped other people who are facing similar health journeys. That fact alone keeps me writing and sharing, and it should help encourage you to do the same!

Thursday Tips & Tricks: Writing Therapy For Chronic Illness

It’s no secret that I enjoy writing. It’s therapeutic for me in so many ways. Writing is a coping mechanism for me–an outlet for my frustrations and thoughts.

It’s also no secret that I love to talk. I have a lot to say most of the time. However, every once in a while, I seem to lose my grasp on how to verbalize the thoughts rolling around in my head. Most often, this phenomenon occurs when I’m having a very high pain day. Sometimes though, it happens when my head is no worse than normal, but I’ve just become so fed up with living such a limited, chronic illness filled life. However in both situations, I find myself in a clouded, distant world away from the real world around me. I fall into weird funks and want to store myself away like a bear hibernating for winter. Usually those funks are spelled with constant “why me’s” and a good deal of blubbering. Instead of talking these funks out, I used to pout about them, but now I write about them. It’s been, what they like to call, “life changing.”

Ever since I can remember, I’ve turned to pen and paper when I need to get out my actual, genuine, and sometimes not so glamorous, thoughts out. My worries, frustrations, questions, and sour words have all come through more clearly through writing. So have my loving, praising, graceful and brighter words.

I know that there have been many instances of me writing to my loved ones about why I’m feeling the way I am, how long I will (most likely) be feeling that way, and what I am able/not able to do because of how my chronic daily headaches are making me feel. It’s not easy for the people around us to understand what’s going on inside our bodies, physically or mentally, because they aren’t feeling it themselves. Chronic illness is such a hard thing for someone who doesn’t have one to comprehend. There’s nothing wrong with that either. It’s just up to us to explain the best that we can, what it is we’re feeling. And for me, it’s easier for me to tell someone exactly what I am thinking and feeling when I write it out, even if the person I am telling is myself.

So the next time you find yourself at an impasse with friends, family or even your own cranium, try taking out a pen or (pulling out your laptop or cell phone, because let’s be real, it’s 2016) and just start writing/typing away. So often I find that my fingers just won’t quit tapping away at the keys in front of me, because there’s so many more thoughts and words pouring out of my mind than I ever even thought I had the room for up there. For those of you who aren’t writers, give it a try. If it’s not for you, that’s OK. But you may end up pleasantly surprising yourself.

writing-maya-angelou

Wednesday Words: Gallimaufry 🌀

This pretty accurately describes the majority of a spoonies life. A confused jumble and medley of things.


Symptoms (and more) are so unpredictable. One day we might feel great and the next day we may feel like we cannot even fathom getting out of bed. Treatments are also unpredictable. Some treatments work, even if only a little bit, and some treatments work so poorly that they may even make our symptoms worse. 

Life is a rollercoaseter for everyone. Ups and downs, unforeseen curves, etc. For people living with chronic illness or disabilities, life is a completely unstable rollercoaster. It’s a gallimaufry. 
 Spot on 👍🏼

Thursday’s Tips & Tricks: Podcasts & How to Create Our Own Positive Reality

While I’m a huge advocate of music being able to heal the soul and effectively pull at our heart strings, I’ve recently become a huge fan of podcasts (I know, I’m behind, but no one arrives to the party on time, right?)

So here’s my tip&trick for this week:
Listen to podcasts, and start with this one!

I’ve started listening to podcasts to and from work in the car and today I listened to this one on the way home “What Reality Are You Creating For Yourself?” by Isaac Lidsky. It’s about how we let our fears and anxieties create realities for ourselves, and how to avoid that. So often, we let our unexpected and unfortunate circumstances decide our fate. By doing that, we are creating a doomed reality for ourselves. But the fact is–that reality that we create does not have to be our reality. In this Ted Talk, Isaac “challenges us to let go of excuses, assumptions and fears, and accept the awesome responsibility of being the creators of our own reality.”

Isaac explains this way better than I do. Give it a listen!

After you give this one a listen, browse around and find a different podcast that helps lift your spirits, inspire you, and teach you new things!

 

 

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 💛

Hope For Progress, Rather Than Fear The Disappointment 

I have gone through months where I’ve effectively given up, only to give myself a wide wake up call that I needed to pick myself out of my funk and continue to try to find an effective treatment. No matter how walls I ran into and how many failed attempts there were, I had to keep trying.
I hope that you keep fighting to find an effective treatment. Or if you’re in a funk and you’ve lost hope, that you find the strength to try again. Because hope is the only thing stronger than fear. Hope that there is a treatment out there, rather than the fear of never finding an answer.

Monday Mantra: Look For The Rainbows 🌈

It’s easy to get caught up in all of the setbacks we face in our life–I myself am guilty of doing this all the time. Instead, let’s look for rainbows when we see rain, and stars when it’s dark out. 
When we’re feeling crappy or reverting with our symptoms, it’s the natural response to get sad, frustrated and lose hope. Let’s, instead  try to put our energy toward searching for the positives that could possibly arise from another speed bump in our journeys. It will help keep you hopeful and strong when your body is telling you to be anything but that. 

Knock Down Those Walls

 

It’s a heavy, unsettling feeling when I think back on all of the instances I’ve shut myself in my room or found a place where I could be alone without worry just so I could sit alone with my anxious, bitter, and angry thoughts. It’s been years since my life with a constant pounding head has began and I fear it’ll be years before I ever see that change.

 

I go through spells, you see. I’ll be doing really well mentally–even if I’m not doing so physically. I’ll put on my front for people that I care about and turn my mind to other things so that I can enjoy life, like I’m supposed to. Sometimes, I even feel OK. But then, as if it’s a routine I’ve made for myself, I hit my spells where I feel it’s best to pretend to be hermit-like. I use the word pretend to make myself feel better.

 

The same people who make my life brighter and with whom I enjoy my best moments with, are the same people I tend to push away or block off when I’m at my darkest. It’s a terrible habit I don’t recommend picking up, but that I know I’m not alone in possessing.

 

I retreat into my lonely “why me” world. I have no desire to see anyone or get out of bed, really. It’s a sinking feeling that I’m not sure quite how to describe in words. The people who care about me tell me to let them in, to open up and talk to them. They tell me they hate that I feel like I have to seclude myself and not speak about how I’m feeling or what I’m enduring. They say they can’t imagine how hard it must be to fight this daily battle and feel the headaches I feel every single day.

 

The thing is, I would love nothing more than to want to open up and talk in those moments. For everyone who has someone in their lives who is battling some kind of fight and acts like I have described myself above, please know, it’s not a choice we make. We don’t like putting up walls, it’s just in our nature.

“Sometimes you put walls up not to keep people out, but to see who cares enough to break them down.”

― Socrates quotes

 

 

I hate that I block people off and push people away in these moments. It’s a double edged sword for me. I don’t feel like talking about my pain, but I also don’t want my support group to feel like I don’t want to talk to them. There’s no winning really in this back and forth game.
All I can say to the people who I’ve kept out with by putting up these walls is, please never stop trying to knock down those walls. Even when I push you away with all I’ve got, even when I seem like I’ve lost the ability to speak, even when I come across like all I want is to be left alone–please never forget that it’s just in my nature to go through these spells and that the last thing I want for you to feel, is unwanted.

Etsy Shop Listings! 

Hey all! Happy Tuesday! 

Taking my own advice and trying to tackle my Tuesday by getting out there and promoting my Etsy shop.


I take the visual posts I doodle that I post here and on my Instagram (@theheadacheheroine) and bring them to life in 3-D and then sell them on my etsy shop. 

They are pieces to inspire, motivate, remind you of daily love, and are made to encourage.

Check out my etsy shop here!! 😊