Quandary. A state of uncertainty. Aka: the state of my life.
Adj. burdensome, troublesome, or oppressive.
AKA many many things people with chronic health problems face day in and day out. A word we don’t like to use, but can’t help but to associate ourselves with. However, because we identify so closely with this word, it results us to also associate ourselves with words like strength, perseverance, and courage.
I can’t understand why it is I’m feeling the way I’m feeling lately, both physically and mentally. Can’t figure out why I haven’t been able to get out of this funk and can’t figure out why this time is different than others and why my head is doing so bad for so long, so different than times before.
Holding on to the faith that one day I will understand. Hoping you all are doing the same, no matter what it is that you’re trying to understand.
I try to not to think of these days as signs of weakness, but as opportunities for showing my strength and practicing my pain fighting techniques. (Even though it’s hard to keep that mindset steady throughout the day)
In times of struggle, I hope that you all try to do the same 💕
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.
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.
Dreams of realities peace
Blow steam in the face of the beast
The sky can fall down, the wind can cry now
The strong in me, I still smile
This song can be interpreted many different ways, I think. However, I hear it as an anthem to loving oneself as well as standing up and smiling in the face of adversity and hard times.
The song is about someone who feels so small and defeated, yet has faith in God and stills smiles through it all. It kind of asks in a way, when it comes down to it, are you going to give into the fear, frustration and anxiety? Or are you going to stand up against all of that, lift up your head and keep on moving?
I’ve faced times when I wanted to give into my pain, allowing it to take over not only my body but my mind as well. After a while though, I know the right and healthy thing to do for myself is to pick up head and keep moving. To keep trying to find answers and to keep fighting.
This life is too beautiful and miraculous to let the bad stuff suck you in. Lift up your head and keep moving through whatever hard time you are facing right now. You all have so much to love about yourselves. Your beauty, creativity, kindness, intelligence, compassion, empathy and so much more. Love yourselves so entirely that it makes you want to stand up and scream just like Kendrick does in this song, yelling “I LOVE MYSELF!”
As difficult as it has become, I try my damnedest to believe that it’s always darkest before the dawn.
For roughly the past month and a half, my headaches have not left my side for a single moment. They haven’t paused for interviews, social outings or even sleep. Something like this takes a toll on one’s emotional and mental state, not to mention physical as well.
I’m a very social young adult. I have a good group of friends that I really enjoy hanging out and going out with. I have amazing family who I cherish dearly and spend a lot of my time with as well. And I have a guy who has somehow learned to put up with me through thick and thin.
But I also have these headaches that don’t care if I see or spend time with any of these people.
Being cooped up on the weekends and not being able to go out and act like the 22 year old that I am has really started to create this grey, sad cloud around me. I know there are hundreds and thousands of other people who can relate to this in some way, and I feel for them.
I try to keep these posts uplifting and positive, but even I have my moments of weakness.
Anyone with chronic pain or illness has seen the darkest at some time, but the trick is to hold onto the hope that we will one day see the dawn.
I’m in the darkest now, but praying that my dawn is trailing close behind.
This is what someone with an invisible disorder and chronic pain looks like. While it’s not visible on the outside, it’s very much real on the inside. Even though I look like I feel ok, most of the time I don’t. Starting this blog and my Instagram account (@theheadacheheroine) has allowed me to open up more than I ever have before about my health journey. However, it has also left me feeling very vulnerable and nervous of what others may think. Still though, I’m so happy to be doing it because it allows me to spread positive vibes while supporting and reaching other people who may be feeling the same way about something in their life, health related or not. I hope to be able to support fellow chronic pain and invisible illness warriors stay strong through their own journey.
Therefore, I’d like to share my story with you.
I started getting exertion headaches around the age of 12. It was a new and terrible feeling. I played competitive fastpitch softball at that time (and up until I was 16) so I was exercising and exerting myself almost daily. When the heat was bad and the humidity was high, and I was exerting myself out on the field, I would always get terrible pounding headaches.Resulting in me laying down, sitting out games and practices and feeling like a bit of an outsider compared to my teammates. I wasn’t sure what to do about it, so I just ignored it for a couple of years.
By the time I was 14 I started looking into seeing a doctor for my headaches because they hadn’t gotten any better. Between the time I was 14 and 16 I had seen neurologists, ENT specialists, allergists, and general practitioners. I had undergone an MRI, CT scan, allergy tests and IV’s. I had tried a wide variety of medicines as well. Nothing seemed to help.
During my teen years, I also found myself in the ER more times than I ever wanted. Dehydration, repeated fainting, more dehydration, extreme stomach pains, and more dehydration (or what they claimed to be dehyrdation.) I never truly understood what was happening to my body. I was constantly interrupting big plans (New Years Eve parties, Mother’s Day, and surprise parties for family members to name a few) because my health kept sending me to the hospital. It’s a terrible feeling knowing that you’re the reason parties got canceled and peoples nights were ruined due to worrying about and taking care of you. (s/o to my older brother who didn’t get mad when I threw up on his shoes outside the house next to the ambulance, my best friend for sticking by my side in the ER on News Years Eve instead of at a party with all our friends, and for my parents for always telling me they didn’t mind spending hours upon hours in a cold, stale hospital room.)
It had come to a time where I had to decide that my health was more important to me than playing the game that I had such a passion for, which was softball. I was an athlete at heart. Since my dad was the head coach, him and I were the glue that kept our team together. Therefore, my quitting resulted in the disbanding of a team that had been together for 7 years.) It was the hardest decision of my life at the time, deciding to quit playing for good. It definitely had a significant impact on me mentally and emotionally. It led me to a sad period of my life. I didn’t know how to fill the hole that was once occupied with the love of the game and my teammates that I considered family. After a year of being sad, I decided to take charge of my health and see more doctors. This time, I was prescribed Topamax (an anti-seizure drug that is sometimes used to prevent headaches and migraines.) I was hopeful that this medicine would help me, but it did just the opposite. I experienced major negative cognitive side effects. I couldn’t retain information, my short term memory was crap and I just felt foggy and dumb. After a while I knew I couldn’t be on that medicine anymore. But this only lead to more disappointment and being unsure about the future. While I was still upset to not be playing softball anymore, I knew it was in my best interest and that it would open up new doors for me. Which it did. Instead of trying to get recruited to a school to play ball like most of my teammates were doing, I ended up at Virginia Tech. Which was the best thing that had happened to me in so long. I met lifelong friends and made incredible memories that I will never let slip from my mind.
During my time at Virginia Tech, I did trial and error with a number of prescriptions given to me by different doctors. Beta blockers, blood pressure medicines, anti-seizure drugs, OTC meds,etc. You name it, I tried it. I’ve gotten multiple blood tests done (one time 8 viles of blood at a time, to which I of course passed out during the process of taking my blood.) None seemed to do anything helpful. It was getting frustrating and redundant. At school, I ran into my other fair share of medical problems that either landed me in the ER or another type of doctor’s office. Thankfully, I had family and seriously amazing, loyal friends who sat by my side in waiting rooms and who drove me when I couldn’t drive myself. (You all know who you are, and I am seriously forever grateful and blessed to have you in my life.)
It kind of became my “thing.” You know how people have “things?” Some people have a singing talent, some people are always the top of their class in school, etc. Well my thing was always being in a doctor’s office or hospital. My thing is that I’m always getting blood taken. My thing is that I have a fainting problem. One time I called my dad from school and he answered with “What hospital are you at this time?” (Granted he was saying it in a joking manner…I think…but to his credit I actually was sick at the time.)
It’s not a “thing” I’m very proud of. But it’s something I’ve embraced.
Flash forward to now and I’ve kind of started from square one again. I’m consistently seeing my neurologist, trying out acupuncture, sleep studies, allergy testing, eye doctors etc. It’s such a trying process, but I don’t want to just give up even when I don’t see results. The thing is, I know there are people out there fighting for their lives. People who live at the hospital. People who have to deal with chemo and things so much worse than what I’m going through. People who are so much stronger than I’ll ever hope to be.
While I constantly pray for those people and hope with all of my heart that they find the answers and cures they deserve and need, I’m still proud of myself for fighting my own battle.
I’ve learned a lot about myself throughout this whole process. I’ve learned that I can get knocked down and get back up again. I’ve learned that no matter how many times I get blood taken, I will never get over my uneasiness and hatred of needles. (seriously, I get weak every time.) I’ve learned that it’s ok to cry. To feel sad and frustrated. Defeated and broken. But in contrast, I’ve learned how to make myself keep being proactive and not to give up. I’ve learned coping methods and survival techniques. (AKA I’ve learned how to really binge watch Netflix and how to match my mood with a fitting ice cream flavor.)
I’ve learned a lot about the people around me as well. I’ve learned that people come and go and that that’s ok. Some don’t understand while the others try their best to. I’ve learned that I have the most amazing parents and siblings who go to doctor visits with me, check in on me, encourage me, and do whatever they can to help me feel better. I’ve learned how to tell who my really close friends are and how to never let them go. Meaning, I’ve learned who my “people” are. The ones who encourage me when I’m discouraged. Build me up when I’m feeling broken. Be strong for me when I’m too weak to be strong for myself. They can say the words I need to hear even when I don’t want to hear them.
I’m not sure what I really expected people to think about me and my thoughts when I started this blog. I obviously knew I was letting people, friends, family and strangers, into my mind after I published my first post. People will have their thoughts and opinions, I’m ok with that. I’m ok with people reading every post, looking at my blog once in a while and I’m also ok with people not ever even taking a glance. That’s because I started this for two reasons, and two reasons only. I started this blog to help me find solace through writing. To really create an outlet for myself as I continue to go against this obstacle that doesn’t seem to have an end in near. Secondly, I started this so that I could maybe reach other people who are struggling with something similar. I hope to encourage other people and create a support system for someone who may not have the support they need. I do this to hopefully help people stay positive even when the day seems to have nothing positive in it.
So I thank you for reading, supporting and encouraging me.
Maybe now, someone else will find inspiration to take their own personal story and struggle and turn it into something positive as well.
Having one of those days where it feels like I’m stuck in limbo. Feeling foggy and unsure of how to use my time. Wanting to be productive, yet wanting to also just lay in bed with Netflix and my two favorite men (Ben & Jerry). The ability to find the happy medium between caring for and looking out for my health but not feeling like a couch potato and having a productive day without straining myself too much is getting tiring and too repetitive.
Feeling like I need a new outlook on this problem.
Feeling like I need a refresh button for the day
–wouldn’t that be awesome? Don’t feel like you’ve had a great day? No fear! Just click refresh and you can start right on over!
…But it just doesn’t work like that (get on that, Apple)
Need something to refresh my energy and motivation. Recommendations are welcome!