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 🌸✨ 

What’s the Word? 💭

  
What’s The Word? 💭

🔅jaunty 

A word I used to describe myself in the following way: majority of the time, I believe myself to be a genuinely cheerful, lively, and confident person. Proud of who I am and not afraid to show it in a positive way to those around me. ✌🏼️😊💃🏼 But then there are the times I force myself to appear this way. Where I fraudulently come off as jaunty, when behind closed doors my head is throbbing, my mind is racing, and my frustration is bubbling.
Even people who are truly happy, lively, bubbly, and confident can face hardships and times where even when they aren’t feeling jaunty on the inside, force themselves to show it on the outside to avoid questions/judgement from others, or just to make themselves feel better. 

Spoonies know this to be true. Sometimes our disposition is organically happy and lively–representative of a version of ourselves we are proud to be. And sometimes behind our smiles is something we try never to show–physical and emotional pain we try so hard to battle against. 

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.

 

What’s the Word? 

HARMONY: a pleasing combination or arrangement of different things. 

  

 As someone with chronic headaches, episodic migraines, narcolepsy, and severe food allergies, plus other medical mysteries that arise, harmony is a word in rarely use. I’m sure other Spoonies and people with chronic health issues can say the same. It always seems that my health problems exasperate at one time, so more of an unpleasant combination of different things. 

However, it’s a word I hope to use more often and it’s a feeling I’ve come to truly recognize and cherish. I try not to overlook the fleeting moments of harmony in my life, because I know they’re something special. 

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. 

Monday Mantra 

  
Trying to adopt this and implement it in all aspects of my life today, next week, and beyond. 

Fear is inevitable (for most people. Superman, Morgan freeman, and Chuck Norris excluded, obvs). There’s nothing wrong with feeling fear. It doesn’t make you weak or inferior. It makes you human. Don’t let people tell you to not be afraid. Frankly, because no one else besides you knows what you’re up against.

However, don’t let that fear take over your life. Instead, let it fuel your fire and push you toward learning how to strike that fear from your life.

Don’t let fear hault your progress. Don’t let fear make you stop in your tracks, because what’s life if not a journey? Fear is just a small part of it.