It’s Not Bragging if it’s True 

  
Well I’m on day 3.5 of this ongoing, debilitating migraine.

  And even when I try to silence my brain to give it a break, I can’t stop the ever flowing thoughts. Because that’s how it works, right? So today I started thinking: 

What’s one thing all spoonies hear almost every single day?

For me, it’s “I can’t imagine how you do that. I wouldn’t be able to handle that.” 

Hearing this has become as familiar as hearing “how are you” or “good morning” for me. From strangers, friends, family, co-workers, and if my dog could speak probably from him too.

Most of the time I think “yep. It sucks.” But sometimes I think to myself: “You know what. That’s a compliment, and it’s very true.” 

When they say “He wouldn’t put you through something you couldn’t handle.” I guess it’s actually true. Us spoonies were given our illnesses because we are strong enough to handle them. Do we still break down in absolute pain and misery? Well yeah, but who wouldn’t? But I look back at so many times of my life (final exams, competitive fastpitch softball games in the summer heat, driving an hour home at night, running the mile in high school, making it through a work day full of loud co-workers and staring at a computer screen) that I fully and willingly participated in while I had full blown migraines. 

Do I think other people would be able to do the same had they been in my shoes? Some people, sure. Other people, no I don’t think so.

So during long migraine (or other chronic pain or illness) spells, while it’s very easy to wish you were someone else in a different body, I think it’s more effective to focus on how strong we truly are. Not many people could deal with this type of pain on a daily basis. Do I think I’m stronger than other people? In this situation, I do. And I’m proud of it.

It’s not bragging if it’s true, right? 

 

What’s the Word? “Fortitude”

  
Fortitude. 

A word I love. A word I repeat in my head day in and day out. A constant reminder that I am stronger than any difficulty I am facing. 

Physical strength is great. Without physical strength I wouldn’t have been able to get up to bat every time I had a migraine during a really important game. I wouldn’t have been able to endure the multiple nurses and endless prodding by needles when my veins were being stubborn during blood drawings. It’s a strength I’ve learned how to control and can be seen by others around me.

Mental and emotional strength takes a much stronger person to master. How many plans do you have to cancel, trips you have to miss, crying breakdowns you have to endure, anxiety attacks you have to conquer, etc, does it take for one person to truly give into the mental and emotional pain of chronic illness and pain? 

I wish I could count on my hands the number of times I’ve broken down in extreme frustration, anger, sadness, the like due to health issues that piled on top of me until I felt like I was suffocating. But I can’t, because I don’t have that many hands.

It was worse in the years prior. With age, and experience, comes maturity. Lately, I’ve displayed more emotional and mental strength than I thought was capable of. It helps to have an encouraging support system who constantly tells you how strong you are. But instead of feeling like you’re getting an ego boost, you feel proud.

Proud that you are still fighting. Proud that you aren’t letting the difficulties that pile up, win. Proud that you are mentally and emotionally strong enough to show the world that no matter what, you will continue to walk through your journey with your head held high.

Fortitude is a word I repeat in my head every single day. I’ll be damned if I let my adversities beat me down. 

Time Stops For No Man

A not-so-friendly reminder for anyone who lives with a chronic condition or a continuous hardship that often keeps them holed away inside: The world keeps spinning, the clock keeps ticking and the years keep flying by.

This thought makes a continuous loop in my mind, driving me almost mad. Have you been driven mad by it before also? If you’re thinking to yourself “no I haven’t,” then please share with me your secret.

I’m in a period of my life where I’ve been handed multiple bad hands all around the same time. Do I think I’m the only one in this position? Of course not. Am I grateful that my situation is not worse? Always. But do I still lose myself to an overpowering feeling of frustration and helplessness sometimes? If I said no, then I’d be lying to all of you as well as myself.

Today I woke up with a headache that I knew was going to stick around for the rest of my Saturday. As my body and mind awakened, I couldn’t help but think”here we go again”–A thought I’m usually very capable of pushing away, making room for much more encouraging and positive thoughts to fuel my day. But I’m only human and we all have our moments.

A day of pre-planned activities, of seeing family, of changing out of my sweats and leaving the house, all slipped from my fingers before I even had a chance to attempt to keep my grip on it. My bed was my companion today and my thoughts were that friend in the group who always shows up unwelcome and then sticks around until you show them the door.

Most of the time, I give myself an hour or two before I kick myself into gear and start acting like my normal self again. But there was one thing my brain just couldn’t let go of today: The idea that I have wasted (and will continue to waste, as it’s looking right now) so much of my little time here doing nothing fun, nothing of significance and nothing that will make memories, due to my headaches tying my hands and my feet to my bedposts. I’ve spent so many mornings, afternoons and evenings wondering what other people are up to while the next episode of Friends automatically starts playing on my laptop. It leaves me feeling so full of resentment. It leaves me feeling like I have to play such a large game of catch up with the rest of my family and friends the next time I’m feeling up to getting out of bed.

If you’re reading this and rolling your eyes thinking “Girl, lose the drama because you have it nowhere near as bad as other people” Then please, keep thinking it, because you’re absolutely right. I still have a functioning body, an intelligent (boastful, much?) mind, and all of life’s necessities at my fingertips. I don’t live in the hospital, I merely just make my friendly visits there. I take medicines to help me get along, but I would be able to survive without them. My life is wonderful in comparison to thousands of others. I’m incredibly lucky to be able to do so many every day activities on a pretty routine basis. So I apologize in advance if my venting offends anyone. My problems are so minute and I resent myself for thinking those thoughts of resentment and for sometimes adopting that “woe is me” mindset. It’s a terrible cycle to jump into. Grab a hold of the rails before you accidentally fall into it as well.

I don’t enjoy sharing these thoughts with others, mainly due to the fact that I don’t want to seem ungrateful for what I’ve been blessed with in my life. But, why have this blog if I can’t write about what I am honestly experiencing, feeling and thinking? My purpose of starting this all was to reach others who might possibly be feeling something similar to what I am feeling. I’m sure other spoonies out there, and even other people who may be facing something in their lives that are keeping them from doing everyday things they hope they could be doing, know this feeling of losing time to something that so often takes control of their lives.

I didn’t mean for this post to be a buzzkill, per se. It’s one of those days, though, where writing has been the only outlet that has helped start to set my mind right again.

I wish I could practice what I preach more often and focus on the positive things every day of my life, but as many things are, it’s much easier said than done.

A goal of mine now, after having spent the day angry about the lost time in my life, is to spend every waking moment that I feel healthy enough to be doing something other than lying in my bed, doing something new, exciting, adventurous, fulfilling, thoughtful, and memorable.

There’s no real way to know what tomorrow will bring. But I do know that I’m going to take full advantage of every moment that I can. I don’t want to be afraid to hear the ever-present clicking sound of the minute hand ticking away on that clock on the wall.

 

Song of the Week: “Pursuit of Happiness” Covered by Lissie

I’m on the pursuit of happiness and
I know everything that shines ain’t always gonna be gold
I’ll be fine, I’ll be good

Although I’m a Kid Cudi fan for the most part, I really like Lissie’s  version of this song. Her covers are always pretty awesome.

What gets me most in this song are just the vibes that it sends out. The “I’ll be ok. What will be, will be” kind of vibes.

It’s about living your life to the fullest without worries of what others think and also without worries of what may happen to you the next day, month, year, etc. Now, everything in moderation people. Not saying to go cliff jumping or to go do something illegal and dangerous. Just saying that we can’t live our lives worrying about what may happen next. What we need to do is live in the current moment. To seriously live with a live free type of mentality.

That saying “life isn’t fair” is one of the truest things I’ve ever heard. But even though things won’t always go our way and often life will throw things our way that are less than ideal, we have to get up and embrace life. When life gets rough, we shouldn’t “lay awake in our beds full of sorrow.” We should get ready to face tomorrow.

Things in this life won’t always shine with gold, but we’ll be good once we learn to stop letting those bad things put our life on hold.

Song Of The Week: “I Want It All” by Cam

I want it all
Don’t want no rocking-chair regrets
I got that fire and it’s burning in my chest
Gonna keep on living ’til I hear the last call
And I, I, I want it all

While she isn’t super well-known yet, she’s got such a great voice and songs worthy of performing your own personal concert in your car driving home from work (…guilty).

This song came into my mind as a good song to post on New Years Day because the first day of the year is when most people feel at their peak levels of ambitious, inspired and brave. We adopt a “go getter” attitude and tell ourselves that this year we actually can have it all if we put forth enough effort.

There will always be the nay-sayers who tell you that you’re being overambitious or that you’re just lying to yourself. Well ya know what? Who needs those people?

This song emits the feeling of empowerment. She sings about promising to herself to have no regrets when she’s older and looking back on her life. She’s not going to listen to any people’s doubts or rumors. She’s moving on with her life full steam ahead, and no one will be able to slow her down.

I love the attitude portrayed in this song and it’s an attitude I’m going to adopt as my own this year. It’s an attitude I think everyone should adopt this upcoming new year. I challenge you to keep on living until you hear the last call.I urge you to drown out the doubts and negativity of your peers. You have to accept that sometimes you will lose, but I encourage you to never let your inner fire die down despite that fact.

If you’re gonna go for something, better make it everything.

 

Headaches Always Steal The Spotlight 

There are many tough truths that spoonies have to accept after dealing with a chronic condition throughout their life. Even when you accept these truths though, they still can be hard to swallow.

One truth that I’ve recently learned to start accepting is that headaches and migraines present themselves whenever they want. Headaches don’t care if you’re at work, a social outing, in class, at a concert, or just hanging at home with family or friends. Headaches don’t care if it’s an anniversary, your birthday, a holiday, or just what you had anticipated to be a relaxing Saturday evening.
How do I know? Experience and the knowledge that headaches have taken over the control room.

This year on Christmas Eve, I got a migraine. Whoopee, right?

This led to a few hours of frustration (but that was already higher than usual due to other health problems) and tears. Yeah, I would admit that I didn’t hold up as well as I would’ve liked to.

My migraine controlled my emotions and mentality for a few hours that day. I thought, angrily for a while, “Seriously? Christmas Eve?” Had to spend a few hours napping, away from my family. I felt isolated in so many ways. Felt like this only would happen to me. “Just my luck.” Felt like I wasn’t able to turn my thoughts from negative to positive ones. Felt defeated and like I had zero control over my life at the moment.

After moping, napping, crying and laughing at my situation,I mentally reminded myself that if this is how bad I have it on Christmas Eve, than I am the honestly one of the lucky ones. I thought how there are so many other people out there who have incredibly worse situations than my own and who are dealing with things beyond my comprehension. I thought about the many people who don’t have a roof over their head, who are enduring illnesses that keep them on bed rest and worse, and people who don’t have family to share their Christmas with.

These thoughts not only humbled me, but gave me the physical and mental strength to get up and move on with the night.While I know I sound dramatic, at the time it didn’t seem possible to get myself out from under the covers.

Even though the head pain was still there, (not as bad as it had started out as, but still there) I was still able to turn my night around and ended up having a wonderful time with my family that consisted of laughs, smiles, and tons of delicious homemade snicker doodles (made from scratch by yours truly.)

The truth is: headaches, chronic pain, or any chronic disorder, etc. will remain in control of your body, probably more than a majority of the time. You, however, can be in control of your mentality and good spirit. Learn to take control and turn your “woe is me” moments into “glad to be me” moments.

It’s advice that I need to learn to take more often, myself.

 

 

The Most Typical of Mondays

Yesterday was a test of my patience, perseverance, and temper. What started out as a classic “Monday Mishap” escalated into a “Monday Mayhem.”

I experienced those typical “ugh” moments that everyone faces pretty often-losing your wallet (temporarily, thankfully), dumb drivers on the road, timing mishaps and office troubles–but there was one segment of my day that just really set me over the edge.

While I’ve been making some progress with my headaches and narcolepsy situation, I’ve only seemed to take numerous steps backward in my journey with food allergies.

After ending up in the ER two weekends in a row, I’ve been eating really “safe” foods because it’s nerve-wracking to eat when you aren’t 100% sure what your food allergies are. So yeah, the anxiety is continually on the rise. So I did what any normal person would do (after a year…whoops.) I made a follow-up appointment with an allergist–optimistic that the doctor would be able to ease some of my anxiety, answer some of my questions, and bring even a tiny bit of peace to my mind. Yet, I got just the opposite.

I’ve seen my fair share of doctors and I’ve seen a few who I didn’t exactly see eye to eye with regarding treatment plans. However, I’ve never seen a doctor who made me feel so belittled, frustrated and generally pissed off before. He looked at me like I had ten heads when I asked him questions and told him things other doctors have told me. For reference, I’m very new to the food allergy world. It’s not like I’ve had a peanut allergy my entire life and know how to manage it–no I recently developed a seafood allergy–which he thinks is not even possible (what?) He spewed his BS at me, shook his head like I had told him I got my information from “The Onion” rather than from accredited doctors, and sent me on my way to get a blood test for only crab and salmon (to my knowledge, there is other seafood out there, but what do I know right?) Times like these I wish I had been ballsy enough to tell him his word meant nothing to me and walked out, but I politely left the office and went to go get stuck by another needle. (although the guy who took my blood was awesome, so super grateful for that. I’ve never had such a painless experience getting blood drawn. props to him.)

I understand that there are times when people have bad experiences with doctor visits. However, for spoonies such as myself who see doctors more often than they see most of their friends, it’s extremely frustrating. It wasn’t so much that I was sad, I was just genuinely pissed off at this guy. It was a waste of my time–and spoonies also know how valuable time spent in a doctors office is when we’re trying to find answers.

I sat in my car afterward cursing the doctor wishing I had told himself to stick his handshake where the sun don’t shine, until my dad kind of set my mind right. He made me realize that there’s really nothing to cry about. I’m allowed to be pissed off, but I have to be able roll with the punches. I have to be able to take the annoyances and learn from them. I have to try to find even the tiniest positive thing from the experience and move on to what’s next.

We’ll all have days that make us want to break things and scream to the skies yelling “Why me? What did I do in a past life to deserve this shit?” But at the end of the day, we can’t change what just happened. We have no control over what and how much gets thrown in our path. We do, however, have control over how we handle those days. We can throw in the towel and walk away cursing under our breaths. We can rage until someone fixes their wrongdoings brought upon us. Or, we can take a deep breath, calm ourselves down, figure out the next step and move forward. We can gather our patience, grab a hold our temper, and persevere on.

It’s not the destruction that’s tearing you down that will define who you are or where you go in this life. It’s how well you step over the rubble and walk through the fire.

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Chronically Grateful Day 12: What Is A Fear You’ve Conquered Despite Your Chronic Condition?


Having to always cancel plans, be left out of activities, know that you can’t do some of the things most people can, and always having to explain yourself, it’s easy to become worried about what others think of you. I wonder what they think when I try to explain why I can’t go on the hiking trip with everyone (for example) because my head will start hurting just five minutes in and the rest of the time will be like a living migraine filled nightmare for me. I used to fear people would think I was just making excuses or something. I’d fear that they would judge me for what I couldn’t do, and not for what I can do: which is fight a debilitating battle against head pain. There have been multiple instances where people don’t understand the severity of it and will say something like “oh come on! Don’t be a baby!” In which case I try my best not to get upset and defensive, knowing some people wouldn’t last an hour with a migraine while hiking 7 miles up and down a mountain (and from experience I know it feels like you would rather pluck your head off than continue hiking)

I’ve gotten over that fear though, because I know I don’t need to explain myself to everyone. The people who are close to me understand and don’t need an explanation anymore. The people who are close to us won’t demand an explanation. I also know that everyone has their own battles. Why should I judge them when I don’t know what they’re possibly going through? The saying “you can’t really understand a persons experience until you’ve walked a mile in their shoes” couldn’t be more true.

If you get over the fear of what people think of you, you will do so much more in your life and feel so much more comfortable and confident 🙌🏼✌🏼️

Chronically Grateful Day 10: What is Something You’ve Done That You Might Not Have Otherwise Done Without Your Chronic Illness/Disorder/Pain?

Simple answer: this blog. 

I would have never started writing this blog had I not been going through this journey. I’m grateful to be writing again, and so often at that, because it’s an emotional release and a creative outlet for me. One that I had a hard time keeping up with in the past. Now though, it’s become part of my daily/weekly routine and I love it. I’m not always able to write about positive results or about getting answers to my headaches, but at least I am able to find positivity and relief from writing about it.

Since I’ve started my blog and my Instagram account (@theheadacheheroine) I’ve connected with some truly inspirational and strong people. I’m motivated by others to keep fighting for myself. Before I started this blog and that Instagram, I felt very alone in this medical journey of mine. Now I know that I’m nowhere near alone. 

Chronically Grateful Day 9: What Are You Most Grateful For About Yourself?

  
Being positive about yourself is never a bad thing, so be proud of who you are! ☝🏼️Despite the past 10 yrs (or so) of dealing with these headaches, I still have a lot to be grateful for. I’m compassionate, kind and goofy 😁I’m resilient and strong💪🏼. I dance wildly in front of crowds and don’t care what people think💃🏼I smile even when it seems impossible. It may come across as boastful, but really I’m just grateful for how I’m able to stay myself throughout this crazy ride. 💖