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.

 

Daydreaming 

  
My life trend seems to go like this lately: 

Weekdays– head pain average, works 9-5

Weekends–head pain increases, high intensity, pulsing, etc. create well thought out plans that become just that: “well thought out plans.” They never become “put into action plans” 

Everywhere is on my list. It’s just going to take me a while to cross it off.

Now accepting all forms of encouragement

What’s the Word? –Intrepid 

  
What’s the word?

📍Intrepid
People with any physical, mental, or emotional struggle who put themselves out there and share their stories–they can be described as intrepid. 

In any case, those of us who put ourselves and our stories out there are fearful of the future and fearful that we’ll never see progress, find answers, or be judged along the way. However, we are living boldly, bravely, and fearlessly. 

Keep on, keepin on 👏🏼

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. 

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 

💛