Do Only What You Can Do Today to Create The Reality You Want for Yourself Tomorrow.

 

I have a very hard time accepting my own reality. I’m sure many people experience that every once in awhile. Like when you were younger and you were grounded but you really wanted to go to that party, so you convinced yourself that you weren’t grounded and you went anyways, only to get into more trouble. It probably would’ve been better to just stay home, accept your punishment and wait for the next party. Or like when you know you have a million things on your to-do list, but you still go out and grab drinks with your friends or binge watch all of the real housewives episodes, only to then stress yourself out even more knowing you achieved nothing. We would be so much better off if we just accepted our reality as it is in that present moment, rather than pretend we are living some alternate reality that we daydream about.

 

Currently, I wish that I could be more physically active than I know I can be. I listen to friends talk about their workout routine and how they’re losing weight and growing stronger and more confident. I’m happy for them. I am. And after the few minutes of acting like Eeyore knowing that my body can’t do all of the the things that theirs can, I then convince myself that I actually can do what they’re doing. Why should my life be any different? They all face difficulties themselves. They pull muscles, tear ACLs, herniate a disc, etc and they all end up recovering and getting back into their exercises weeks or months later. So what’s stopping me from doing the same?

 

This is when I need a pretend slap in the face to wake myself up to my reality and the fact that my reality is not anyone else’s reality. My headaches intensify not only when I lift weights, or run or do yoga, but simply even when I walk up stairs, bend over, or push furniture around. My exertion headaches have no mercy on activity level. It’s something I’ve been dealing with since I was a teenager. I half expected them to be gone by now, but again, I was only kidding myself, right?

 

While I know I can’t squat big weight or run on the treadmill in order to lose weight and gain muscle quickly like “normies,” I do know that I can do just what I am capable of and no more. I have learned to endure the headaches throughout a workout and stop myself when the headaches grow to be more than I can handle. (It helps that I can handle more than someone else may due to the longevity of my illness.) Each day I have to remind myself that my routine will be very different than anyone else’s. I am unique and that’s ok. I won’t be as physically fit as I dream of, but I can do what I can to get close to that dream. I’m learning to accept my body and it’s limitations, but it’s something I have to remind myself of and teach myself daily.

 

So, just today, I’ve created a workout plan for myself. Two days of weights (more reps, less weight-in order to keep the impact low), three days of yoga (check out Yoga With Adriene, she’s awesome!) and two days of rest. Now, I know that this is an ideal plan. I know that my illnesses will throw curveballs at me and that there’s no way I will be able to stick to this routine as strictly as another person may be able to. I’m bound to have a migraine or narcolepsy spell come in and make me miss a day or two. It’s inevitable. I can’t control that. What I can control is how I accept the fact that I can make a routine, stick to it as best I can, not push my body more than I need to, and be cognizant of the fact that there will be days when my illness throws my schedule out of whack.

 

We have to learn to accept our realities as just that–our realities. We can’t compare ours to anyone else’s, just as someone else shouldn’t compare their reality to ours. We must constantly adapt, though the frustrations will want us to do otherwise.

June is Migraine & Headache Awareness Month!

June is Migraine & Headache Awareness Month! This month is dedicated to advocating for patients like myself who suffer from an invisible illness that is much more debilitating, physically and emotionally, than most people know.

I’ve lived with migraines & exertional headaches for a little over 10 years now. They have changed the way I live my life entirely. I had to stop playing sports, start avoiding the hot/humid weather, try to accept that I can’t live as active a lifestyle as I wish and overall adapt to the diagnosis.

I’ve lived with chronic daily headaches (meaning no days with a “0” pain level) for around 3-4 years now. This has had a much bigger impact on my life than my migraines, because while my migraines are extremely painful, they only happen on occasion. These chronic daily headaches have become my new norm–they’re like my shadow, always there. The only time I don’t feel them is when I’m sleeping. My chronic daily headaches have resulted in many mental health ups and downs, anxiety, relationship/friendship strains, tons of forced FOMO, many days at home missing the fun, etc.

But this is not meant to be a sob story post. Instead, this is meant to be a post that opens peoples eyes to the debilitating nature of migraine and headache disorders. There is an urgent need to increase awareness of the impact migraines and headaches have on a person’s quality of life. Let’s spend this month (and every month after) shining a light on these disorders and advocating for everyone who deals with them.

Mary vs. the MRI Machine

My Neurologist doctor is like that super fancy 5 star restaurant where people are on waiting lists for months just to get a taste of their high-class plates–He’s got a lot to offer, in super high demand, and has to be booked six months out.

Most often, I see my Physician Assistant–who is super awesome, has exponentially furthered my forward progress finding help for my headaches and I love seeing her. But, seeing the actual doctor is a different type of visit. He’s just so intelligent and has a different way of thinking, so there’s always something new that I learn and he always suggests a new path to try.

Today, I continued to explain my symptoms. I told him how my atlas orthogonal treatments (post all about that coming soon!) has helped decrease the intensity of my daily headaches, but hasn’t helped my exertion headaches. Nothing has. I still feel the intensifying pounding when I do yoga, lift, run, walk up the stairs, bend over, etc. From heavy workouts to mundane every day tasks like walking up stairs–my headaches intensify and the pounding begins immediately.

Apparently, patients who experience that same type of thing (headaches intensifying by coughing, bending over, walking up stairs, etc.) often have a blockage in their venous channel. So perhaps I am among those patients. Of course, it’s a very uncommon occurrence, but people close to me know I’ve never been one to exactly fall into the “norm” category, esp. when it comes to my health.

So what does that mean? It means I have to get another MRI–but this time an MRV. It’s an MRI that looks specifically at your veins to look for blockages. If it’s positive, there’s a treatment where they put a stent in to clear up that blockage and open up flow. If it’s negative–well, then more MRIs will be taken and more serious tests need to be addressed.

So here’s to hoping that this MRI is positive (I don’t normally wish for that, nor do many people.)

Let me ask you this: how annoyed and frustrated are you when you’re not able to exercise because you’re sick, or you have a concussion, or you pulled a muscle, etc? Probably pretty frustrated (for the most part) because you want to feel active and youthful. Well, I haven’t felt active and physically youthful in about 7 years. I’m 23 years old and simply walking up the stairs and briskly walking across the room makes my head feel like it’s about to blow. It’s extremely discouraging. All I want is to be able to do yoga, run around carelessly, start  lifting again, doing anything really. Being unable to exercise or be active makes you feel lazy, large and lame. It starts to eat at your self-confidence and self-image. I say this because before my headaches became the way they are today, I was physically active every day and loved it. I loved being active and working to stay fit. It’s not even an option for me anymore.

So knowing that a positive MRI and implanting a stent in my veins could possibly bring me my old lifestyle back makes me oddly wish for a positive MRI result.

 

Anyone else out there experience exertion headaches like me? Or in any way, shape or form?

I’d love to hear your stories, advice, etc! We’re here to support and encourage one another 🙂

A Farewell Letter To My First Love: The Softball Field. From A Girl With A Chronic Illness.

I grew up with you. Loving you, caring for you, constantly visiting you and sometimes, quite honestly, despising you.

You brought me some of my closest friends, fondest memories, funniest stories, and some of my most valued life lessons. You also brought me some of my first curse words, toughest frustrations, and inevitable girl drama.

You taught me that winning is fun, but that losing will happen too. To never give up, even when you’re far behind. That the underdog can be a champion. To never underestimate people. To stand up for myself and the people I care for. You taught me what it means to be mature when you want to be anything but that. You taught me how to learn but also how to lead. You taught me loyalty and what it means to be a team-player. You taught me love and you taught me loss.

The first time we met, I was too young to recall. And now, all these years later, just the sight of you brings a warmth to my heart that not many others can claim.

Each time we met, the fire within me started. There was always an excitement that couldn’t be fulfilled doing anything else.

When I walked away from you, I either felt satisfaction and joy or disappointment and anger.

Before all this happened, I never expected to one day walk away from you feeling nothing but emptiness.

I never knew something I loved so deeply and valued so greatly would one day make me feel hopeless, sad and defeated.

Every now and then, though, I tell myself that this time it’ll be different.That I will put on my glove and run around the outfield, feeling as free as I once did. Weightless and immortal.That this time I’ll take the bat in my hands and feel the rush as I connect with the ball. Run around, passing my dad waving me toward home plate with a look of pure joy and pride. That this time I’ll step out on your dirt and not worry about how bad I’ll want to tear off my head this time around. That I won’t feel the excruciating pain inside my skull.

And each time, I’m let down. My thoughts become dreams that just need to be put to bed.

We’ve been taught that we will experience love and loss in our life. However, no matter how much we’re taught it, we’re never prepared for it. We know that we will enjoy victory but also suffer defeat. The victory will never feel sweeter and the defeat never more bitter. We will learn what it feels to be completely alive but also what it’s like to be completely numb.

Every time I used to walk away from you, there was no goodbye, only the unspoken promise that I would be back soon. But the truth of the matter is, I never expected my headaches to last this long into my young life. I always was hopeful that something, someone, somewhere would cure me or find a treatment for me that allowed me to be active again. To play again. To truly be one with you again. As you know though, that’s not the case and I don’t think it ever really will be.

So now, I leave you with no return date, only the hope that one day we may meet again.

It’s hard to leave a first love behind. But, maybe we have to sometimes. Maybe in order to move on, we need to find something else to replace the hole where that love once was.

But this statement I know to be true: You never forget your first love.

softball diamond

 

Chronically Grateful Day 17: What Major Lesson Have You Learned From Living With a Chronic Condition?

 
After close to 10 years of dealing with my chronic and exertion headaches, I have learned that I truly can do anything but not everything. I’ve pushed through terrible headaches during fastpitch tournaments in the blazing heat 🔥, hiking miles up and down a mountain🏔, working a full time job💻, and smiling when it seemed impossible. After all that, I know I can do anything.

However, after having to quit playing the game I loved, skipping the group hiking trips, calling in sick to work sometimes, and often missing out on some of the adventures and activities my friends have planned, I know that I can’t do everything. I’ve learned to prioritize my health so that I don’t push myself when I know it would only lead me to feel even worse. I’ve learned that my headaches come during times I find inconvenient and disappointing, but I know that when its all said and done, I need to look after my health before all else ☝🏼️. It was a lesson learned after much stubbornness and denial, but it’s one my body thanks me for now. 

Chronically Grateful Day 17: What Major Lesson Have You Learned From Living With a Chronic Condition?

 
After close to 10 years of dealing with my chronic and exertion headaches, I have learned that I truly can do anything but not everything. I’ve pushed through terrible headaches during fastpitch tournaments in the blazing heat 🔥, hiking miles up and down a mountain🏔, working a full time job💻, and smiling when it seemed impossible. After all that, I know I can do anything.

However, after having to quit playing the game I loved, skipping the group hiking trips, calling in sick to work sometimes, and often missing out on some of the adventures and activities my friends have planned, I know that I can’t do everything. I’ve learned to prioritize my health so that I don’t push myself when I know it would only lead me to feel even worse. I’ve learned that my headaches come during times I find inconvenient and disappointing, but I know that when its all said and done, I need to look after my health before all else ☝🏼️. It was a lesson learned after much stubbornness and denial, but it’s one my body thanks me for now. 

Chronically Grateful Day 16: How Do You Turn To a Positive Place When You’re Having a Bad Day?

All too often we can find ourselves in bad places. Throughout my journey I’ve seen numerous days of endless head pain, emotional distress and mental worry. It’s hard to get yourself to turn your frown upside down 🙃 when you are in these kinds of moods. However, I try to remind myself that while a good cry every once in a while is warranted and good for the soul, no good will come from sitting around sulking all day long. ☝🏼️ I find reaching out to a few good friends to make me laugh always gets me smiling. I like watching my go to comedies (aka Friends and The Office) because those are guaranteed to lighten my mood and make me laugh no matter how many times I’ve seen the same episodes. Also, I’ve found ice cream and pizza work wonders. 😊🍕🍦

Chronically Grateful Day 12: What Is A Fear You’ve Conquered Despite Your Chronic Condition?


Having to always cancel plans, be left out of activities, know that you can’t do some of the things most people can, and always having to explain yourself, it’s easy to become worried about what others think of you. I wonder what they think when I try to explain why I can’t go on the hiking trip with everyone (for example) because my head will start hurting just five minutes in and the rest of the time will be like a living migraine filled nightmare for me. I used to fear people would think I was just making excuses or something. I’d fear that they would judge me for what I couldn’t do, and not for what I can do: which is fight a debilitating battle against head pain. There have been multiple instances where people don’t understand the severity of it and will say something like “oh come on! Don’t be a baby!” In which case I try my best not to get upset and defensive, knowing some people wouldn’t last an hour with a migraine while hiking 7 miles up and down a mountain (and from experience I know it feels like you would rather pluck your head off than continue hiking)

I’ve gotten over that fear though, because I know I don’t need to explain myself to everyone. The people who are close to me understand and don’t need an explanation anymore. The people who are close to us won’t demand an explanation. I also know that everyone has their own battles. Why should I judge them when I don’t know what they’re possibly going through? The saying “you can’t really understand a persons experience until you’ve walked a mile in their shoes” couldn’t be more true.

If you get over the fear of what people think of you, you will do so much more in your life and feel so much more comfortable and confident 🙌🏼✌🏼️