Knock Down Those Walls

 

It’s a heavy, unsettling feeling when I think back on all of the instances I’ve shut myself in my room or found a place where I could be alone without worry just so I could sit alone with my anxious, bitter, and angry thoughts. It’s been years since my life with a constant pounding head has began and I fear it’ll be years before I ever see that change.

 

I go through spells, you see. I’ll be doing really well mentally–even if I’m not doing so physically. I’ll put on my front for people that I care about and turn my mind to other things so that I can enjoy life, like I’m supposed to. Sometimes, I even feel OK. But then, as if it’s a routine I’ve made for myself, I hit my spells where I feel it’s best to pretend to be hermit-like. I use the word pretend to make myself feel better.

 

The same people who make my life brighter and with whom I enjoy my best moments with, are the same people I tend to push away or block off when I’m at my darkest. It’s a terrible habit I don’t recommend picking up, but that I know I’m not alone in possessing.

 

I retreat into my lonely “why me” world. I have no desire to see anyone or get out of bed, really. It’s a sinking feeling that I’m not sure quite how to describe in words. The people who care about me tell me to let them in, to open up and talk to them. They tell me they hate that I feel like I have to seclude myself and not speak about how I’m feeling or what I’m enduring. They say they can’t imagine how hard it must be to fight this daily battle and feel the headaches I feel every single day.

 

The thing is, I would love nothing more than to want to open up and talk in those moments. For everyone who has someone in their lives who is battling some kind of fight and acts like I have described myself above, please know, it’s not a choice we make. We don’t like putting up walls, it’s just in our nature.

“Sometimes you put walls up not to keep people out, but to see who cares enough to break them down.”

― Socrates quotes

 

 

I hate that I block people off and push people away in these moments. It’s a double edged sword for me. I don’t feel like talking about my pain, but I also don’t want my support group to feel like I don’t want to talk to them. There’s no winning really in this back and forth game.
All I can say to the people who I’ve kept out with by putting up these walls is, please never stop trying to knock down those walls. Even when I push you away with all I’ve got, even when I seem like I’ve lost the ability to speak, even when I come across like all I want is to be left alone–please never forget that it’s just in my nature to go through these spells and that the last thing I want for you to feel, is unwanted.

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.

 

My Headaches, My Life, My Story.

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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.

Song Of The Week: Grey Street by Dave Matthews Band

How she wishes it was different
She prays to God most every night
And though she swears it doesn’t listen
There’s still a hope in her it might

This song found me during a time years back when I was feeling just like the girl this song is about: empty, a little hopeless and just wanting to change so many things about my life. Dealing with a chronic disorder, or really any type of pain, physical or emotional, takes its toll on a person’s life at one time or another. No matter how strong someone may be, there is still a part of them wanting help and answers.

I know at times that my chronic pain has left me feeling like I’ll never find answers. Like I just want to escape from my body for a little bit and not have to deal with what I’ve been given. It sometimes feels like my prayers aren’t being heard, no matter how many times I speak them.

While this song isn’t one that necessarily uplifted me during a time of need, it is one that made me feel connected to something. It made me feel a little less alone. It made me feel heard, instead of feeling like no one could hear my silent screams. When I heard this song, at the time it felt like this song was made specifically for me. It’s about reaching out to those people who feel like they’re locked away from the world around them and they can’t seem to find an escape.

Songs like this are powerful because everyone wishes to be heard, even if they don’t want to speak their thoughts outloud. Everyone wants to feel like they can relate to something else, instead of feeling like they’re the only one feeling how they are.

Dave Matthews Band does a seriously awesome job at creating songs that do that for people. This song in particular. If you aren’t a big Dave fan (are you an alien??) or you haven’t really ever listened to his songs, give them a chance. You will probably find one you feel like was written specifically for you. If you do know this song, just hit play and click repeat a few times to find a few minutes to yourself, completely blocking out the world around you.

–side note, DMB concerts are worth a trip if he’s ever in town near you and you’re feeling up to a concert–

Stronger Than Superman

A pretty bold headline there, but I’m goin for it.

Earlier today I had to get another MRI, this time with and without the contrast dye so that meant another needle to the arm to deliver the contrast dye. I’m trying to target what’s causing my headaches (as I have been trying to do for the past 8 years.) But lately I’ve been making more momentum with my neurologist and really taking different paths and options to see if I stumble upon any answers. So that meant more testing.

Not only do I hate (and often faint after) being stuck with needles, I also am slightly claustrophobic so being inside an MRI machine isn’t my idea of a Sunday Funday.

However, I didn’t exactly have a choice.

One thing that fascinates me in a really great way, is seeing how strong some people are. Especially people going through a medical problem, people who have chronic pain or a chronic disorder/illness, people who time after time, haven’t been given any answers. These people are the strongest. (I like to think I’m included in this category, heh.)

At times, we break. If we didn’t, we wouldn’t be human. But we have to stay strong through all the poking and prodding because if we didn’t, we wouldn’t be fighting. We have to remain physically strong during treatments, testing, hospital visits, surgeries and periods of time where the pain is unbearable. We have to remain emotionally strong in order to not give in to depression, anxiety and such but also to help support the people who support us. We have to stay emotionally strong for others, because it’s hard on them seeing us go through these things. We have to remain mentally strong during times when we simply want to stop trying, and let life be life and just live with what we’ve got.

People who go through cancer and life-threatening illnesses are superhuman in my eyes. I know that what I go through, while it’s painful, debilitating and frustrating, it still could be much much worse. The people who have it worse and fight through all of that, I give you an everlasting standing ovation.

The strongest people around us are not the ones with the bulging biceps or toned six pack. They’re the ones who fight a battle every day even when they lose, keep on fighting.

You may not be 6’3, sporting a strong jaw and a rockin suit with an S on your chest. You can’t leap buildings in a single bound. No that’s not you. Because you, my friend are stronger than that. You are stronger than Superman.

Hire My Headaches

Having just graduated college, I’m among thousands of my peers battling it out in the job hunt. Job application after job application. Interview (hopefully) after interview. It’s a tasking process, but we gotta make that cash somehow right? I know for me, some days I wake up and know that it will be difficult to just sit in a chair and put a smile on because of my head pain. It’s a tough situation to handle because people with chronic illness (and no money coming out of school with lots of student loans) have few options. We could either: A) Face the pain head on (punny?) and go to the interview and do the best we can all while putting on a smile for show. B)Call and postpone the interview, hoping that on the next date scheduled, we won’t feel so crappy or C)Take a hiatus in life and stop going to interviews because it’s painful enough just moving around…but yet be stuck with no money to pay the bills.

Lately I’ve been trying my best to do A but at times have had to falter to B. It’s OK to sometimes have to call and postpone with an interviewer. I struggled at first agreeing with that fact, but it’s life–things happen. For the most part, people understand that migraines are debilitating. And I tell them it’s a migraine because I don’t want them to have to listen to my 10 minute monologue on the background and nature of my life with chronic pain.

That’s one thing that I’m having trouble with facing being an entry-level candidate. Do employers need to know about my chronic pain beforehand, or even at all? Do I need to explain to them that while some days I feel pretty OK and will be able to go through the workday just fine, but some days I feel like someone is squeezing my brain to the point where I think it might actually defy all logic and burst from within my skull? How do employers see this issue? Is it something that will cause them to think twice about hiring me? Are people with chronic illnesses seen as liabilities?

It’s an answer I can only find from people who have experienced it before. That’s why I’m hoping this blog helps me find a community to help me face the questions that don’t always seem to have answers.

We all hope, that one day we can go to work and feel pain-free like the co-workers around us. We hope that we won’t have to take sick days for migraines when we could be using those days out on a lake or dipping our toes in the ocean water on vacation with family or friends. But we know for now, that it’s not the case. Hopefully we can find a happy medium and hopefully our employer (or future employers) can help us do that.

Calling All Spoonies 

Starting this blog and finding more people with illnesses like mine (and just chronic illnesses in general) is already teaching me more than I thought it would this early on. I’ve started an Instagram account (@theheadacheheroine if you feel like takin a gander) and I’ve stumbled upon hundreds of other accounts that show how people are living with chronic pain. But many of these accounts, and accounts similar to them, have the word spoonie in either their handle, bio, or hashtags. I had no idea what it meant, so I overlooked it and kept on scrolling. But the more I saw it, the more my curiosity got the best of me. So I turned to my nearest and dearest friend for answers: Google.

Spoonie is a term that refers to people who live with a chronic illness and identify with Christine Miserandino’s “spoon theory.” To break it down, a spoonie is someone who lives with a chronic illness and theoretically measures personal daily abilities and successes as one might measure the right amount of spoons needed for an event/occasion. Sometimes we have more spoons than we needed, and sometimes we just come up short.

I really identify with this because as a person living with chronic daily headaches, there are some days where I feel better than I expected to and am very productive and truly enjoy my activity-filled day. However, I face many days where I find getting out of bed, doing laundry, running errands, etc to be huge accomplishments.

I think that many people can identify as a “spoonie.” It’s a goofy term, but it’s so relatable. We all have our battles that some days seem to disappear and allow us to live exciting, enjoyable lives while other days cause us to feel like we’re simply coming up short compared to our peers.

When you’re a spoonie though, little victories are what it’s all about!

H20 For Life

I’m sure we’ve all gotten this overused piece of advice from someone in our lives: “Do you drink enough water during the day? You’re probably dehydrated. Just make sure to carry a water bottle with you.”

While our friends and family are usually our #1 support system and are only trying to help, if they don’t have the same illness, they just won’t be able to understand quite as well as we want them to. It’s hard to explain to someone we care about that we are tired of hearing this “you need to drink more water” phrase.

We could drink a Costco sized pack of water bottles and still feel this pulsing, throbbing, picking (insert adjective here) headache. In some cases, we might actually be dehydrated. But it’s 90% of the time not the case. It can be frustrating to hear this same piece of advice time and time again. It can be even harder though, to not get frustrated with the person telling it to us.

I know that I sometimes struggle with getting my thoughts and reactions across to a person I care about in a way that doesn’t seem rude or short, during an episode up in my noggin. We try so hard to not focus on the constant pain, that sometimes we forget the pain we may be accidentally causing someone else when they’re just trying to help us.

May we all realize that the people around us are simply trying to help with our problems that arise and may they realize that we are simply not dehydrated.

p.s. go drink some water after you read this

Raise Your Hand If You’ve Ever Been Personally Victimized By Headaches

I’ve been living with two sure things my entire life. Two things that have never let me down and are always there for me each and every day. My love of writing and my chronic daily headaches. I’ve decided to put the two together to create an outlet for me when I’m feeling frustrated about my disorder and for others who might just be feeling the exact same way. It’s sadly comforting to know that other people out there are in the same pain that you are. We’re all looking for answers, magic cures, and support groups. While I can’t offer the first two, I might be able to offer the last.