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!

I Was Supposed To Be Healthy, Instead I Have A Chronic Illness

I was supposed to spend my college years carelessly moving on excitement, dreams and adrenaline…Instead I spent my college years dancing wildly and living an excited life only when my headaches allowed me to.

I was supposed to put my money towards seeing the world, paying off debt and buying every day necessities like a vacuum…Instead I’ve seen my money be handed to doctor after doctor and burying myself in even bigger debt due to all of the medical bills I have yet to pay off.

I was supposed to be a physically active young adult with living in the years where I would see my healthiest, most fit body…Instead I can’t exercise because of my throbbing head and instead see a body filled with insecurities and unrealistic expectations.

I was supposed to be partying while I’m young, out with my friends every weekend letting loose after a hard week at work…Instead, I still work hard every week but often find myself with heavy cases of FOMO laying on my couch looking at Snapchats of my friends out on a Friday night.

I was supposed to have a world of options and opportunities at my hand…Instead, I am limited to that which I am able to do without exhausting myself and putting myself in more pain than is already present.

I was supposed to live a life where I only got headaches due to hormones, stress, exhaustion, hunger or recovering from a night of partying…Instead I have a headache just sitting here typing this out, and when I do literally anything else.

However, the funny thing about the whole “I was supposed to thing,” is that none of us know what lies ahead. Life changes direction without warning all of the time. What we may one day have thought we were supposed to do or be, may be completely different than we think we are supposed to do or be the next day.

 

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.

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.


 

 

Beautiful Irony: A Spoonie Takes on the Town 

   
Finding it ironic (but ironically beautiful) that I felt well enough and excited to go out on #NarcolepsyAwarenessDay 😌👍🏼 My lifestyle now is so different than the lifestyle I was able to lead a year ago in college. Not being able to adventure out every weekend anymore due to health shenanigans sometimes makes me sad, but it also makes it much more exciting and gives me more to look forward to when I actually make it out now. 💃🏼 

We have to take advantage of each and every day that we feel good enough to spend time with our friends and family and when we feel good enough to embrace our choice of fun.

 

Spotlight Saturday: Describing What It Feels Like To Have An Invisible Illness 

  
Again, the mighty site does a superb job at sharing stories that raises awareness along with supporting people with disabilities and illnesses. This piece has people describe what it feels like to have an invisible illness. As a person who has an invisible illness myself, I know how hard it can be to describe to others and how hard it is for some of my friends and family to understand how I feel. This piece does a great job at helping spoonies feel like they’re not alone while also helping others understand a little bit more about how it feels to be someone suffering from invisible illness. 

Click on the link below to give it a full read! 

Describing What It Feels Like To Have An Invisible Illness

Wish You Were Here

I get these types of postcards sent to me on a regular basis. Not the tangible kind, mind you. The mental kind I create in my head. I’ve got a whole stack of em that I sift through every once in a while.

Throughout the many years (which seem like a lifetime, quite frankly) that I’ve had these headaches, I only experienced fleeting moments of self-doubt and another thing that we spoonies so often feel called FOMO (fear of missing out.) My headaches weren’t daily until I was about 20 or so years old. Up until then, my headaches were only bothering me every time I did hard cardio, when my hormones were increased, or when my occasional migraine came to visit. So, I really only felt like an outsider every once in a while. It was only occasionally that I was missing out on trips, adventures with friends, parties, birthdays, etc. It never really affected me emotionally or mentally at that time. At least it didn’t affect me enough for me to dwell on it. Everyone misses out on things sometimes. It’s part of life. What right did I have to complain about it?

This past summer though, my headaches took a turn for the worse. Not sure what triggered this major change with my health. Trust me, I’ve backtracked to try to find out. My investigative skills are better than most, but even I couldn’t solve this case. But really, that’s the strangeness that comes with headaches. It’s all too often that headaches cannot be traced to a particular cause. At least, that’s what I’ve been told by the flock of doctors I’ve visited. But back to the main story… Starting this past summer I was hit by this train that didn’t stop moving once it hit me. Yup, a classic hit and run, folks.

All of a sudden, I was missing out on weekend nights with my friends, birthday celebrations, brunches, concerts, etc. I was missing out on things that I was so frequently doing just months before with all my friends at college. While my case could clearly still be worse, it’s very hard to accept such a drastic lifestyle change, especially one that you didn’t voluntarily make. Even more so when you’re as social and outgoing as I am.

Instead, I was staying in alone, taking tons of naps (s/o to my dear friend, narcolepsy), praying my head didn’t defy science and spontaneously combust, and eating way more ice cream than the average person would be told is healthy by their general practitioner (PSA: please don’t use me as an example by comparison when asking your general practitioner what amount of ice cream consumption is considered to be healthy. Chances are your doctor probably already knows me anyways, so HA! Joke’s on you)

I told myself that things would turn around. That I just needed to give it a few more days until I was back on my feet again, so to speak. They always did turn around when I ran into long flares like these before. I would experience a string of weeks and weekends where I had to refrain from the activities I normally took part in, but then something would change and I’d be back to my normal, low grade, every day type-of-headache self.

For some mystery reason, this time, that didn’t happen. Yep, to this day I continue to turn down invites. I continue to yell (internally of course) at Netflix when it asks me if I’m still watching (stop judging me Netflix, you don’t know my life!) I continue to spoon another bite of Häagen-Dazs into my mouth while watching the Snapchats of my friends out on Friday nights.

I remain an optimist (about 85% of the time, because I’m not Giselle from “Enchanted” ok?) and I come up with so many well thought out plans for the next weekend, thinking “Next weekend I’ll feel good enough to do “fill in the blank here.” But these “well thought out” plans stay just exactly that: “well thought out plans.” I very rarely get to put my well thought out plans into action. And as someone who was labeled the “plan-maker” of my friend group time and time again, this is a hard pill to swallow. It’s awfully discouraging to daydream about road trips when in reality you wake up feeling too crappy to even make a trip to the kitchen.

Seeing all of my peers take advantage of their free time by crossing items off their bucket lists, visiting new cities, and trying new things just has me feeling like, (even though it isn’t my fault), I’m doing nothing with my time and wasting so many of my days doing what my dad would label as “diddly-squat”. Yeah, most of the time I can take control over my pain and turn my “woe is me” mentality into a “smile and wave” mentality.  I take one for the team and go out and do things pretending there actually isn’t wrecking ball having its way with me inside my skull. But there are so many times lately, where I just can’t physically do that anymore.

This isn’t meant to be a “depressing” post. It isn’t meant to be discouraging or sad. It’s not being written to score sympathy or words like “Wow, I could never deal with that. How do you do it?” While those words are often taken as compliments (to a certain degree, I will say) it’s just not what I’m looking to gain from this. I’m really not trying to gain anything other than relief for myself. It’s a selfish post with an underlying goal of reaching other people out there who are feeling just like me: stuck, helpless, and like I’m wasting these beautiful days away unwillingly.

I’m ambitious. I’m a dreamer. I’m a wannabe world traveler. I’m a foodie (with certain diet restrictions of course. Shout out to my food allergy friends. Epi-pens 4lyfe) I want to visit new places, do new things and meet new people. I want to see the works of God’s hands– the mountains, deserts, oceans, rolling hills and waterfalls instead of just “liking” the ones I see on my Instagram feed. I want to drool over and then devour all of the delicious food I can afford to (both financially and physically without getting sick) in one sitting.

Therefore, being tied to my bed, or the couch, or being blinded by the back of my sleepy eyelids just leaves me feeling like those ambitions and dreams will take me nowhere new. Like I’m wasting the days, hours and minutes that I could be spending experiencing a new culture first-hand, seeing a sunset in a new city or meeting a Scottish group of friends at their go-to pub and tuning everything they say out because I’m just too mesmerized by their accents.

I put an extreme amount of effort into keeping myself out of the dark places, so that I can spread light to other people who may be feeling this feeling of “wasting away” themselves. I’ll admit, on days like today, it’s hard to do that though. Sometimes I allow myself to be on the other side of that line. Sometimes I’m the person who needs someone else’s light to be spread to me.

So for now, I’ll keep flipping through all of these postcards from the different places that I wish to be. So even when I’m in bed with all the lights out and a have a cold compress on my head, in my own little world, I’ll actually be in Italy with pizza sauce spilling on my shirt, or in California driving down Highway 1 with the windows down, or even just down the road a little ways sipping on a satisfying mimosa with my friends talking about the weirdly wonderful things we talk about with one another.

Yeah, that’s where I’ll really be.

 

Even Big League Pain Meds Won’t Help This Hall of Famer 

It’s been a full week since this  pounding, throbbing, pulsating, evil like migraine has started. 

With no end in sight, I went to the ER for acute treatment to at least get rid of it for a while.

After 4, yes 4 tries to get an IV in me, I was administered the big pain killers. 

Sidebar: I’m sorry but even if I don’t have the greatest of veins, it shouldn’t take 4 very painful tries to get an IV. Also don’t ask me “are you usually difficult when it comes to IVs?” Lady, even when I’ve been very dehydrated, people have gotten my vein on their first try. This is the second time at this same hospital that they have take 4 times to get a vein. And mind you, they hit the wrong place a couple times cuz it was much more painful than normal.

Ok sorry, to continue:

I was hopeful that at least this would get rid of my migraine until tomorrow.

Well, I felt relief for all of an hour. And then dude hammering away in my brain started hammering away again.

The pounds. The thuds. The beating. 

It all is back. 

So now what? What’s a girl to do now? 

I’m trying very hard to trust in God’s path for me. Trying very hard to keep the faith strong when the entirety of me is weakened to a pulp.

My fear is an ocean and my worries are a swarm of gnats in the summer heat.  

  
Will try to sleep now and pray that tomorrow brings new hope, new relief, (and once science gets there, a new brain 😁) 

In high need of good thoughts, prayers, advice, hugs, and puppy cuddles. 

I accept any or all of the above 

💛