Through Hardship Comes A Good Story: My Writing Space

I can’t tell you how many times I’ve had to literally stop what I’m doing, find a notebook, open up a word doc, or start a new note on my phone during times of physical, mental, and emotional struggle. Yes, I often write when I’m happy and have good news to share. Or because something great happened to me that I always want to remember.

But my best writing happens when I truly cannot understand why something has happened, or why I’m feeling a certain way. It happens when I need to try to create an understanding or an answer for myself that I’m not getting anywhere else.

I’ve been doing a lot of good writing lately (toot my own horn, much?) and I owe it all to my headaches. Well, I do have to give credit to all the other health issues I’m dealing with at the same time, also.

It’s been hard to figure out why my pain level has been so consistently high lately. It’s been hard to understand and explain to people the thoughts going on in my head during all of this. It’s also been hard to talk about why my emotions and demeanor have been so completely the opposite of the happy, talkative, weird person most know me to be.

And because of that inability to verbalize it all, I write about. It not only helps me piece together the puzzle that is my life (or at least helps me make a valiant effort at doing so,) but I think it also helps friends and family understand a little bit more about me and journey than they did before.

I find that writing during hardships we face help us get through those hardships in one piece. I find it helps me learn more about myself. And I always feel better when I place the last punctuation mark on my piece than I did before I started.

For example, just the other day, I didn’t find it necessary to leave bed. Curled up, took long naps, felt like “what was the point?” My head hurt too bad for me to do anything fun, so instead I wallowed in bed. Eventually, I forced myself up (or rather my dire need to pee did,) and took my computer outside in the 60 degree winter, opened my laptop, and started writing. I am not lying when I say that it was therapeutic. No, it can’t cure me. No, it won’t solve all my problems. And no, I can’t say I felt truly “myself” afterwards. But guess what, I felt a hell of a lot better.

Writing Space

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.

 

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.

 

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.

 

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.

 

 

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. 💖

Chronically Grateful Challenge Day 2: What Are You Most Grateful For On Your Healthcare Team?

  
I’ve seen a wide array of doctors and been to countless offices. While they all have tried to give me a diagnosis and treatment, I’ve only felt truly attended to and comfortable at a few of those offices. My neurologist and headache doctor is incredibly smart and transparent. Transparency isn’t always comforting in the healthcare world, but it’s so important and crucial to good and effective communication with your doctor. These doctors are exhausting all they can think of in order to help me. They answer my messages in a timely manner and they are able to sympathize and understand (or at least try their best to understand) my concerns, emotions, and symptoms. Patients like myself get frustrated pretty often because I have yet to find any answers, but these doctors don’t take it personally and they do what they can to help ease my frustration. I’d be nowhere without them! 

Song Of The Week: “Lost Stars” by Adam Levine

This is one of those songs that gave me very real chills the first time I heard it. I stumbled upon it while listening to Spotify one day. Since then, it still gives me chills each and every time I listen to it. Those songs are rare for me. Songs that allows your mind to find something new from them every time you hear them.

Every time I listen to this song, I feel like I’ve escaped to this new and different land or place. Is anyone else able to relate to that feeling?

  
Adam’s always angelic voice is the first thing that had me hitting repeat on this song, but it’s the following line that truly captured my heart.

Are we all lost stars trying to light up the dark?

This song reminds me that no matter where our journeys may take us, we must always shine our light on this world. That’s why we’re here: to use our light to light up the dark.

That’s why I write about my journey. I never really talked about it with anyone except friends and family until I started this blog. But I wanted to be able to share my experiences and shine my light in the hopes that I may help light up the dark for someone else. Maybe my words can help light the way for someone else who is having a hard time seeing which way to go.

You all are capable of lighting up the dark in your own unique ways. It’s how we use our light that really matters.