Winning the Sick Game

9:55 PM chronicmigraineellie 0 Comments

I'm in a period of relative stability right now, for the first time in about 5 years. I am still getting migraines, but it's easier to deal with them, and I do not get as incapacitated and debilitated as I did before. I am so thankful for that. For the first time in years,  I'm planning my future, applying to jobs and internship programs without having to worry if I won't be able to follow through. It's a relief, actually, to actually be able to think like this. I didn't have this luxury for the second half of my teenage years. I mostly just tried to make it through each week.

I'm still a part of many support groups online, and I write for my blog and The Mighty about my experiences with migraines. It's become helpful for me to write, because when I was really sick I basically lost my voice. I lost my ability to speak coherently, write, read, and focus. Now that I have regained my abilities to function, I am trying my best to speak about my experiences because I know how isolating and frustrating it can be to lose things that we all take for granted in life. 

Nowadays, I feel a pang of guilt when I sit down to write. I feel a bit hypocritical sometimes, because I am not as sick as I used to be. I think of all the people who are currently sick, and how I am so lucky to be in the place that I am right now. I get so caught up in comparing myself to other people and their illnesses that I forget that I, too, went through hell and back. Just because I am relatively healthier now than I was then does not mean that my experiences and my feelings are invalid. We need to stop comparing our illnesses in terms of how severe that they are, because chronic illness affects everyone differently. I've had people talk to me and say "Oh, I get migraines, but not as bad as you do." Why do we feel the need to qualify our experiences and apologize just because sometimes we meet others whose conditions are more severe or better than ours? There's no prize for being the sickest, no title or headline for "winning the sick game." No good can come out of negative comparisons. We already deal with enough shame surrounding our illnesses. All of our experiences with chronic illness matter, and we need to remind ourselves of that.

I share my stories about my hospital experiences and the hundreds of med trials that I've been on not to make other people feel bad for me, but to just share my story. Not to compare, not to analyze, just to get it out there. 

I often have to remind myself that for me, my illness was bad. When I was at my worst, I didn't leave my house, slept for 15 hours a day, could barely leave my bed, or even walk down the stairs. I lost everything about myself that I loved. I lost my extracurriculars, my academics, and all of the hopes and dreams that I had growing up. I thought that I would never be able to do anything meaningful with my life because I could barely function. I lost my identity. My chronic illness became my identity.

I've spent the last 2 years rebuilding myself from scratch. Who I am now is completely different from who I was before I got sick. But I went through a period where I had to deal with everything that I couldn't mentally deal with when I was sick. I've experienced the helplessness, the loss of identity and control, and the medical traumas. It's a lot to deal with, for anyone. For me, writing about my experiences were a way to think through my life, a way to cope with the cards I've been dealt in life. I feel very lucky that right now my life is a bit better medically than it was for most of this year, and exponentially better than the last 5 years of my life.

I am alive. That's how I often describe how I'm doing these days. I'm alive. I'm getting through everything, one step at a time.  My experiences are part of who I am, but they have also shaped me into the person that I am today. I've known what it's like to lose almost everything that's important to you. It's such a weird feeling knowing that the world is at my fingertips, for the first time in forever. There's still a part of me that's terrified that I'll lose everything again. But if I live like that, I will never be happy. I'll always be scared, terrified to dream because of how easily it may be taken away from me. One of my good friends has a saying: "if your dreams don't scare you, they aren't big enough." That dream could be mustering up the courage to talk frankly with your doctor about a treatment you've heard about, planning an outing, or for me, looking into summer public health internships. I'm just starting to realize that I can dream again. I hope that you all can too.

As always, have an amazing, migraine-free week!


0 comments:

Yes, I Have Been Moving Around, Thank You Very Much!

1:54 PM chronicmigraineellie 0 Comments

I really struggled with what I was going to write about this week. More often than not, I have a clear idea of what I want to say, and how I want to say it. Today, I am not so sure. As the semester is beginning to come to a close, my workload has begun to increase, and I am faced with the ever present struggle of trying to do work to the best of my ability while balancing my health and happiness.

It's the small things that help me get through it - doing my laundry, cleaning my room, get readings and essays done, and knocking things off of my to-do list while also getting sleep and eating well. But all too often I am overwhelmed by the feeling that no matter my efforts, I will be unable to complete my tasks and do everything that I want to do. This is something that is not unknown to spoonies, as our days are often ruled by how much stress our bodies can take in a day.

Someone recently told me that I looked good physically, like I had been working out or moving. I laughed and said "Thank you, I have in fact been moving!" Yet looking back, on the past couple weeks, I have moved a lot. I have walked up the stairs to get to my room, sometimes gripping onto the railing for much-needed support. I've had to take the stairs to class when the elevator was broken, knowing that there would be a small chance that I may pass out at the top of the fourth flight. I've also danced, and cleaned and stretched. The problem with this isn't that I am unable to move or use my body, it's the fact that I never know when or where my body will fail me. The unrelenting fatigue and pain have become a part of my daily routine, as much as brushing my teeth or getting dressed is. My body is at war with itself, and I am stuck in the trenches.

Breathing is something that is natural to humans. We breath in and out, taking in oxygen and expelling carbon dioxide. It is a simple reaction. I breathe to push through pain, through fatigue, through emotions that I have no control over. Sometimes, it is the only thing that I can control in my life. It's something that is so simple, so easy for most people to do. By doing breathing exercises, I am able to help center my body. When I wake up, when I go to bed, and any other time during the day: In, two, three, four. Out, two, three, four. Repeat.

This small semblance of control keeps me going, in a life where I do not control anything. My body is not my own. As much as I try to fight it, my body remains in the control of my illness. However, I will never give up hope. I may be sick for the rest of my life, but I will always fight. It is in my nature to be a fighter. I have always been headstrong and confident, always willing to question authority and the "normal way" of doing things.  I don't think anything will change that, and that's a good thing.

As always, have an amazing migraine-free week!

0 comments:

An Open Letter to America's Health Care System

2:09 PM chronicmigraineellie 0 Comments


To whom it may concern, 

This entire week, I've sat down trying to write something intelligent about the outcome of our election.  As a woman, as a person with a disability, and as an ally to the POC and LGBTQ communities, it is up to us to make sure that we hold fast to our ideals with hope and activism.  While there are so many more problems that I want to address in terms of the deep hatred and pain in our country right now, I am choosing to write this blog about a community that has not been talked about as much: the disability community. 

I woke up scared on Wednesday, that my illness and disability would not be validated, that I would not be able to get the medical care that I need in the coming years. I have already fought my insurance so many times just to get the medication that I need, and I am lucky. I am lucky to be in a privileged position where I am able to afford the doctors and medicine that I need, and I have the ability to fight for it. Others are not so lucky. As it stands, too many Americans are unable to get the medical care that they need. Whether it is being able to see specialists, run tests or afford ER visits, too many people suffer because they cannot afford the necessary tests and medicine that they need. This is inexcusable. 

As sufferers of invisible illnesses and chronic pain, our voices need to be loud and clear in the next 4 years. We are heading into a political climate where we are looked upon as weak, as people who just take from the system, regardless of our pain or our inability to function. Now more than ever, we must speak up and we must force others to see our pain. We will not be invalidated, and we will not be marginalized. 

Regardless of political affiliations, race, gender, sexuality or anything else, it is important that we continue to raise awareness and rally for our rights. I've been thinking more and more about my own future this week. I realized that I love being able to voice my opinions, and to help others feel like their voices are being heard as well. The reason why I started this blog was to help others feel like they are not alone, but this week it has become apparent that I am doing so much more. I plan to be a voice that talks about issues that America does not like hearing about. Listening to accounts of pain and illness scare many, as it reminds them how they too are susceptible to illness at any time. This is why it is so important that we continue to support everyone. My fight is not just limited to migraines, even though that is how I personally fit into the puzzle. It will take all of us, everyone in the spoonie community, to affect change. Whether it's about the prescription of opioids, lessening harassment and hate crimes of people with physical disabilities, or fighting to make sure that everyone has equal access to healthcare, it involves all of us. We are all responsible for shaping how this nation's healthcare will be shaped in policy. We know about the red tape, the corruption, the defeat that goes into navigating this system. I hope to be someone who will affect this change, and I'm hoping that you all will support me and also yourselves in this fight as well. We are strong, but we are stronger together. Every action counts. I know that this is much more politicized than any of my past posts, but I felt that it was important to address this, regardless of political affiliations. 

As always, have an amazing, migraine-free week. 

0 comments:

The Path to Nowhere: Dealing with Loss and Emotions

5:31 PM chronicmigraineellie 0 Comments

As I'm sitting down to write this, I'm realizing just how hard the past month or so has been on my body. I've experienced loss, happiness, and exhaustion. As much as I wish I could, it's been extremely difficult for me to put my feelings into concise thoughts. I feel a bit scatterbrained- like there are fragments of my thoughts and emotions going around my head. Maybe it's because I've had a couple migraines this week, or the emotional stress that I've been under, but lately I've felt like I've been trapped under a rock. I'm a fighter- I've always been a strong person. It takes a lot for me to feel like I'm struggling, but this was one of those weeks.

I felt so much physical exhaustion, the only thing that I wanted to do was press pause on life and sleep for weeks until I felt better. I did all of my readings, turned in assignments on time, I was doing everything that I set out to do. Well, everything but feel healthy. I started thinking a lot about the fact that I can't really remember what it was like to not be sick. It sometimes feels like I'm running on a trail, but there's no end in sight. I can enjoy the beauty of the world around me and relish the feeling of being free, but sometimes I have to stop and catch my breath or I'll collapse.

I think that there's a strong correlation between my emotions and the frequency of my migraines. When I have a migraine, I lose all ability to rationalize. It's like my emotions become a deep, dark black hole that you can't get out of. Something as trivial as forgetting a pen in class, or putting on a piece of clothing inside out will reduce me to tears. It's not exactly a great feeling, it's feeling intense anxiety and depression to major extremes, but only for a couple hours or a couple days. It's hard, though, because I often forget that I'm allowed to feel emotions. I try so hard to be strong all the time, to myself and to others, that when I get lost in these vortexes, I forget that they are just my amplified emotions.

Dealing with the loss of a very important doctor and friend of mine, I've been faced with a lot of questions surrounding my illness and my life. What would've happened if I had never met Dr. Graff-Radford? What would my life be like now if he, too, had given up on my case? How do I deal with the loss of someone who truly believed in me, even when I was constantly in pain and couldn't function? I don't know the answers to any of these questions, but over the past two weeks, I've reached other solutions.

I was so lucky to have a doctor who believed in me so much. I would not be where I am, academically, medically or personally if not for him. I can remember the first time I met him how he looked at me and said, "Let's get your life back." No doctor had said that to me before, and I had seen at least a dozen at this point. I wasn't just a patient chart, or a bunch of symptoms, I was a person. The work that I'm doing now, raising awareness about chronic migraines and invisible illnesses, is for exactly the same reason why I loved Dr. Graff-Radford; because I want to help others realize that you are not your illness. It is a part of you, a part of your life, but it does not have to be the thing that defines you. The fact that we are still standing, still walking on this path leading nowhere, means that we are so strong. There is a light at the end of tunnel, an end to that trail. It just takes the right person to make you realize it.

I'm still exhausted. I'm still sick. I'm still an emotional person. But I'm also smart, strong and resilient. I am more than my illness, and so are you.

As always, have an amazing, migraine-free week.


0 comments:

For the Flare-Ups that Feel Like I've Lost My Life, Again

2:24 PM chronicmigraineellie 0 Comments


I'm sitting in bed after a week with minimal sleep, a four day migraine, and a tsunami of emotions. I postponed an essay, fell back on readings, and cried more than I slept. I was incapable of giving myself a shot because the pain was too bad. I felt like a zombie, just trying to make it to my classes.

I'm tired. There's no other way to put it. I'm exhausted. I'm tired of pretending that I'm okay and I'm tired of feeling surprised when I get a bad flare. Why should I be surprised? This is my life. It's not a glamorous or happy thought at all. My life is made up of moments where I am preparing for the worst. This week, after getting an abortive shot, I was talking to my Dad. I actually made a plan to check myself in for a 3-day acute treatment this weekend if the shot didn't break my four day long migraine. There's nothing that hurts more after being relatively stable for months than being in so much pain that you can barely function.

The worst part is that I actually second guessed myself this week. I worried about my life, and everything that I've worked for in the past year and a half, being taken from me because I wouldn't be able to function. I worried about what will happen when I am living alone after college, when I can't give myself a shot, but can't function enough to find a way to get to a hospital or my doctor's office. What about all the times when I struggle just to walk back to my room? What about I tell my friends that I'm fine, I'm alive, but really I can barely make it out of bed, let alone my room? How do I mentally prepare myself for a reality that I've already lived through?

I've already lived through the worst. I was one of those migraine cases where doctors turned me away because they didn't know how to help me. I lost all sense of stability and structure in my life, and my entire world went from anything that my mind could imagine to the four walls of my house. The things I loved, playing violin and soccer, became just a memory because I didn't have enough physical strength to even walk downstairs. I was basically on bedrest, at 17 years old. I wasn't sure if I was going to graduate high school with my friends, let alone go to college. I know that I can, because I'm here. But sometimes, it's not the fact that I have been able to get where I am, it's the fact that in a second, I could be lying in bed sleeping for 15 hours a day with absolutely no memory for months until my brain recovers from the trauma that is getting 7 migraines a week for months at a time. It is trauma, because it takes my body days, if not months, to recover from these flare-ups. It's not just a headache, but god do I wish it were. Sometimes, I wonder how my life would be if I wasn't sick, because sometimes I forget. Every once in a while, I forget that I am a chronically ill person and feel normal. It's a blissful but fleeting moment. How do I move on with my life when I'm constantly reminded of everything that I lose if my illness flares up and spirals out of control?

I don't know the answer to the question, but I wish that I did. I know that I'm a strong person, because I have lived through some of the worst parts of my life already. I know that if I lived my life expecting the worst, I really wouldn't be able to function, because I would never see any reason to. I would lose all hope. Hope isn't what gets me through my day, though. I get through the day because of my own strength, and because of the strength of my friends, my family and the online community of spoonies who, like me, have started writing and blogging about our experiences. I get hope from all of you, because your support of me and my blog gives me a reason to keep doing what I'm doing. I am the happiest that I've been in a long time. I'm also exhausted. The two are not mutually exclusive, and neither are my health and my life.

As always, have an amazing, migraine-free week!

0 comments:

Dating Myself: How Learning to Love Myself Allowed Me to Date with My Invisible Illness

11:12 AM chronicmigraineellie 0 Comments





This week, for Invisible Illness Awareness week, I wrote an article for Health Bloggers Community Magazine. It's a very personal post, and something that I've been thinking a lot about lately.

"Letting someone into my world becomes like a game of battleship: I never know at what point they will become fed up with the challenges in my life"

Read more at http://magazine.healthbloggerscommunity.com/dating-invisible-illness/

As always, have a lovely, migraine-free week!

0 comments:

I'm Not Superwoman, I'm Just Me

3:12 PM chronicmigraineellie 0 Comments

Recently, my life has felt like a whirlwind.  I'm back in college, I'm taking 4 classes, running my acapella group, writing for my blog, seeking out public health internships and pursuing advocacy efforts. A year ago, I wouldn't have even dreamed to be where I am today.

Every three months, I get my Botox redone and like clockwork, the two weeks before bring my life to a complete and total stop. I missed classes, couldn't leave my room, and I felt like the whole world was crashing down on me. I was on the phone with my mom, crying, because I was worried that I was over-doing it. I had planned my schedule so carefully, I was trying to take care of myself, why was this happening to me?

It's not unusual to have ups and downs with a chronic illness. In fact, that's just our lives. In the past couple months, I've been more stable than I've been since my diagnosis. Yes, I've had some scares:
blacking out in class, false positive test result for a heart condition, new migraine symptoms, but overall I've been happy. So happy, that I actually am starting to look towards my future.
I haven't done that since before I got sick. I had dreams, but I quickly put them aside because if I couldn't even get to class, how would I be able to get a job? I had big dreams; I wanted to go into politics, I wanted to be a diplomat, maybe even work my way up to Secretary of State. The sicker I got, the less I held onto that dream. How could I ever hold public office with this dark secret following me around? I needed to be accountable, and in my eyes, then, I wasn't.

Periods of stability are amazing, but they can also be harrowing. This summer, I thought about the possibility of going to medical school after college, maybe going into public health, but either way, I am so passionate about raising awareness about invisible illnesses and migraines, why shouldn't I pursue it? Just as soon as I was beginning to get excited about my future, my emotions came crashing down to try and keep me in check. I don't know how I am going to be in a year, let alone 3 years. I need to pace myself, do things a step at a time. Slow down.  Just wait a minute. My life has built in caveats, disclaimers for everything that I do. No matter how big my dreams are, I'm hit with the reality that this is my life and I have to take my illness into account. Every once in a while, I feel like my old self. I have energy, I can run around from meetings to rehearsal, from events to homework without having to stop. These days are so few and far between, that when they do happen, I forget that I actually am sick. I feel capable. I feel alive. I don't feel like I'm just trying to get through the day, I feel strong and proud.

I should feel like that all the time. I should feel proud of myself for everything that I'm doing, but sometimes I forget. I can be a bit headstrong, which is great sometimes but when it comes to emotions it is definitely a flaw. Brain fog and headstrong opinions are two things that should never come into contact with migraine emotions, and when that happens, no matter what I do, I cannot convince myself that I am the strong and capable person that I am today. I know that it's not true, but there's something about my emotions when I migraine that pull me into this emotional vortex. I underestimate myself and my resilience all the time, which I shouldn't, seeing that I'm still alive and fighting 5 years after my life was completely up-ended.

Maybe this is just the ramblings of an intense week, and the aftereffects of a couple bad migraines and the botox, but for anyone who feels like they are not enough, like they aren't capable, or that they're useless because of their illness, you're not. To be as strong and resilient as we are, we have to have some off days. It's hard to be strong all the time, it's exhausting. It's okay to feel upset, but just remember that you are amazing. You are capable and you CAN do whatever you set your mind to. So do those power poses, listen to that song that makes you want to dance and sing, take that bubble bath. Even though it's difficult, embrace the moments that make you vulnerable. You'll only come out a stronger person, I know that from experience.

As always, have an amazing migraine-free week!

0 comments:

Interview with The Migraine Girl!

4:18 PM chronicmigraineellie 0 Comments





Janet Geddis, aka The Migraine Girl, is one of my favorite migraine bloggers. Born and raised in Georgia, Janet has dealt with both chronic migraines as well as autoimmune disease for more than half her life. In 2011, Janet opened Avid Bookshop, which is a community-focused, independent bookstore located in Atlanta, Georgia. She writes for migraine.com and recently, her phenomenal blog was moved there in its entirety.  
As a migraine blogger, I have wanted to branch out to other bloggers whose writings have helped me through my own struggles. Reading Janet's blog helped to motivate me to start my own blog! Hopefully, this is just the first interview of many migraine and spoonie bloggers! 

What do you always carry with you in case of a migraine?
I always have my water bottle, a Zomig nasal injection device (for migraines I wake with or ones that approach very rapidly), a triptan pill (Imitrex or naratriptan at the moment), and some Tylenol (which my doctor has me take in conjunction with whatever triptan I take). 

What changes (if any) have you made to your daily life because of your migraines?
It's hard to enumerate the changes I've put in place over time. I've been living with migraine for 23 years (though I wasn't diagnosed until 8 years into my struggle). A handful of changes include keeping a very steady sleep schedule, drinking way more water than I used to, and learning to scan every new environment for potential triggers. For instance, when I go to a restaurant, I am careful not to stand too close in line behind a woman with perfume on, and I know not to sit under the ceiling fan (as it will cause a strobe effect if the overhead light is behind it), and I avoid really loud places. Every new place I encounter, I'm on the lookout for potential triggers. 

How did you start blogging about living with migraines? 
My blog started as an anonymous outlet for me about eleven years ago, and in 2010 I was the first contributor to join migraine.com, which was about to launch at the time. 

What is one stereotype about migraines that you wish people knew more about? 
I wish people understood that migraine is highly individualized. For instance, I'm not lying when I say I have a migraine but still remain at work, mostly functional. Though many of my attacks do leave me in bed in a dark room, there are others that allow me to maintain a somewhat normal semblance of life. And just as migraine changes in me from attack to attack, it changes from person to person.

When you’re recovering from a migraine, what are your go to foods?
 I usually crave salty foods high in carbs. Lately, any kind of potato-based snack has been what I go for as I begin to recover: tater tots, McDonald's fries, and even gnocchi!

What’s the best advice that anyone has given you?
Though I can't remember the eloquent way this advice was put to me, I know it was something about how I need to be less hard on myself and focus on all the amazing things I have done in spite of (and because of!) migraine instead of focusing on all that the disease has stolen from my life.

What are you excited about this year? 

 I am the very proud owner/founder of Avid Bookshop, a community-based independent bookstore here in Athens, GA. This fall, we will not only celebrate our fifth birthday at our original location but will also be opening a second location of the store. This is a huge feat, and I'm so excited. To be able to do this at all is pretty thrilling, but to have done it despite chronic migraine is really quite amazing to me. Thank goodness for my very supportive friends and family and my absolutely incredible team of booksellers at Avid--thanks to them and our loyal customers, my bookshop business is expanding year by year and I couldn't be happier.  

Thank you so much Janet, for letting me interview you! I wish you the best with your second location and with your journey! 

If you loved this interview, follow Janet on social media! Follow her on Twitter, Facebook, Instagram and her blog on migraine.com!

If you're a migraine blogger who's interested in being interviewed, contact me through Twitter, Facebook or Instagram. 

As always, have a lovely, migraine-free week! 


0 comments:

In the Company of Others

4:26 PM chronicmigraineellie 0 Comments

Hi everyone! This year, I participated in In The Company of Others, an orientation program that shares experiences from college students to incoming freshman. As I have a not so typical freshman year story, I figured that I should do it and share my experiences. After a week of writing and rewriting our scripts, we performed them. Here's my performance. I will put the text below so you can read it as well. Hope you all enjoy!

Hi, I’m Ellie and I’m a sophomore.
When I first think of February 8th, 2016, my mind goes to laughing with my best friend while watching Hannah Montana at 4 o’clock in the morning. It seems so normal until you take a step back and look around at our environment. We’re in a hospital ER room, with white walls and fluorescent lights waiting to find out whether I had a blood clot in my arm or not. This was 4 days after I had been in the ER for pain and swelling in my arm and was sent home with a wrong diagnosis and a dismissal because I was “too young” to get a clot. Watching TV with my friend, I forgot about the IV digging into my vein, or of the potential consequences of the test results that I was waiting on, or even the fact that my parents were frantically trying to find a red-eye from LA to anywhere close to Hartford so they could come and make sure that I was still alive and breathing when my dad landed 8 hours later. Watching this TV show from my childhood about living a double life, I realized that I also live a double life, not as glamorous as Miley’s, however. I wear two masks; that of a healthy college student, and that of someone living with a chronic illness- constantly sick and fatigued.
February 4th, I was taking notes in my social psychology class and suddenly got this intense burning pain in my right arm. I figured that it was just from fervishly writing, and there was only about 15 minutes left and I could probably tough it out. The pain got worse and worse, and finally I was able to go back to my dorm and call my parents. I called my doctor at Yale, because Davison couldn’t see me until 3 hours later, and I feared that I had a blood clot. See, I’m at risk for blood clots because I take birth control to manage my hormones for my menstrual and non-menstrual migraines. However, when I went to the ER, they blew me off. I told them my medical history and that I knew I was at risk of clotting. Then, I was lead to a room for 2 ½ hours, alone while the pain migrated from my right upper arm to my hand, making the area around my thumb blue and swollen. I could barely touch my thumb to my index finger. There was no one at the nurse’s station, and when the doctor finally came in, he dismissed my symptoms. I was too young to get a clot, it definitely wasn’t a clot, my hand definitely wasn’t swollen, but they might do an ultrasound “just to make me feel better.” At this point, I had been there for 3 ½ hours alone, I was tired and I didn’t know what was going on. So they discharged me with a wrong diagnosis that they all knew was wrong. 4 days later, I was brushing my teeth, about to go to bed when I feel a shooting pain in my hand. I knew that the clot was back and much worse than before. When I called PSAFE, I told them to call an ambulance. I didn’t want to walk in and be disregarded again. However, the ER doctor saw the note from that Thursday and refused to do any tests. I had to threaten to go to another hospital because they said that I would have to wait 5 hours to get an ultrasound and that they wouldn’t run any other tests. After an hour of arguing, phone calls and pleading, they finally gave me a CT angiogram with dye, showing that I did in fact have a clot in the right brachial vein of my arm. The doctor apologized, saying that she was wrong to dismiss my symptoms and that she was inspired by how well I advocated for myself. Do you know how common it is for women to get clots blood on birth control? 3%. 3% of women develop clots, and I just so happened to be in that 3%.
5 years ago I was diagnosed with chronic, intractable migraines. Chronic meaning that I had more than 15 headache days per month and intractable meaning that they couldn’t be stopped by medication. Migraines, contrary to popular belief, are not “just headaches.” They’re a complex neurological condition that has many symptoms triggered by various factors. For me, my worst triggers are bright lights, high sounds, vibrations, gluten, soy and anything with tyramine, which is most commonly found in aged cheeses and red wine. Which sucks because everyone likes cheese and wine.
Now, Everyone memorizes different things about their lives, whether it’s lyrics from their favorite song, their favorite poem or something else that they enjoy and hold onto. For me, it’s my medical history. I can give you the names of all 10 of my doctors, and yes you heard that right. I have 10 separate doctors who oversee my medical life and their office addresses, and that’s not even including the ones who gave up on me because my case was “too difficult”. I can give you my entire medical history in under 5 minutes because I’ve gotten used to fast intake meetings with doctors who did not bother to read the information in my charts, whether they’re at an ER or a doctor’s office. I can tell you every medication that I take and have ever taken, including dosages. Today, the number of pills I take per day is 7. A couple months ago, I was taking 12 a day. This doesn’t include my abortive medications either, that I take when I have a migraine. The funniest part of my medical life is that if you put my file in a nursing home and just changed my age, no one would question it! That’s because I am the youngest person in the US to have ever been put on an anti-Alzheimer’s drug for migraines, and up until 3 weeks ago I was also on a blood thinner. I also take Centrum Silver daily vitamins. My friends joke that I am a Jewish grandma though, because I love naps and am always prepared for everything. I always have snacks, aleve, lipstick, band-aids and usually whatever else is needed at that time.

But 4 words have come to typify my life: “But You Don’t Look Sick.” I don’t look sick because I don’t tell others how I feel all the time. I use makeup to cover up the bags under my eyes, and balance my skintone because if you saw how pasty white bordering on green my face is when I’m feeling badly, you’d ask me if I was okay. And that’s just the thing. I am okay. I’m okay until I’m not. I can function decently well with a pain level of 4 out of 10, but I’ve learned how to fake it and to hide my fatigue, memory and word finding issues. You don’t what it’s like to lose control of your body until you can’t control it anymore. I’ll be in class, taking notes and listening, when suddenly I just get this feeling. I get really tired, like the kind of tired that you get after pulling two all nighters in row. I start to feel my body go weak, as if I can’t support my own weight. It suddenly becomes hard to find words, let alone even put together coherent sentences, making communicating what I’m going through much more difficult. I start feeling like I’m going to faint. Add together those feelings with intense nausea and dizziness, with a serving of pounding, intense pain, and that’s my typical migraine.

I’m not sure if it’s good or bad that I’ve gotten so good at hiding my symptoms. Yeah, I can get to more classes and appear like I’m a functioning human being, but at what cost? In the chronic illness community, there is a term called “spoon theory”, and it’s used to explain why we become so easily fatigued.
 I’m tired all the time, even everyday actions like taking a shower become something that takes monumental effort. In a day, there are certain things that most people do, like showering, doing dishes, getting dressed and going to classes. Spoon theory explains that each activity uses up a certain amount of spoons, of which you only have a certain number per day, which I’ll say is about 10. There will be some days where 10 spoons will be enough, but other days when you come up short and can’t do certain activities because you don’t have enough spoons left. See, it became necessary to create a theory in order to talk to non-ill people about our illnesses. That’s because people don’t like hearing about invisible issues. In their eyes, I don’t look sick, therefore I can do everything that an able-bodied person can. There’s a certain shame that’s associated with having an illness, be it mental or medical. I used to be scared to tell people about my migraines, because I thought that they would not want to be my friend if they found out this deep dark alternate person that I become when I have a migraine. It’s true though, I do have a different persona when I migraine. One of my exes called it “Ellie’s world is ending” attitude because everything becomes extremely negative and depressing and because of the pain I can’t think or rationalize anything. I get stuck in these anxious spirals that just add onto the physical pain that I already experience. I don’t usually let anyone see me. Even my family rarely sees me during the worst parts of a migraine. When I’m starting new relationships, I don’t trust easily. I may tell the person about my migraines, but just the bare minimum. Not the fact that I spent my junior and senior years of high school visiting the Outpatient Pain Center at Ceders-Sinai 3-4 times a week, instead of being in class. I don’t tell them that I lost almost all physical ability for almost two years, that even washing the dishes was enough to force me to get back into bed for 4 hours just to recover and be able to sit up again. I don’t tell them about the nights that I can’t sleep and how I cry at 2 o’clock in the morning because sometimes, dealing with this illness is too much to handle. I often feel like I’m burdening others if I ever need help, and this includes romantic partners, and no matter how much that they try and assure me that they want to help, it’s hard to believe them. I’ve been in too many situations where their actions don’t match up to their words. See, I’m difficult. High-maintenance. I have numerous food allergies making it difficult to eat out sometimes. I used to not be able to go to the movie theatre because the sound and lights would trigger migraines for me. I can’t keep all of the plans that I make, because I never know when I’ll be incapacitated. I live in the unknown. It’s a disturbing place for some people, but recently I began to appreciate it because that is my normal. Every morning starts with the question of, “Can I get out of bed this morning?” or am I in too much pain to move. I live my life with contingency plans carefully thought out, so when something happens, I already have a plan of action and can deal with it. Living with an invisible, chronic illness isn’t fun. But not having people to talk about it with makes it so much worse. It is already an isolating, solitary experience. So, if someone you know who has an invisible and/or chronic illness, I’m asking that you listen to them a little bit more carefully and try to see it through their eyes. The people that have done that for me are some of the most important people in my life, and they have helped me be able to actually live my life instead of living in fear of my migraines.  Thank you.



0 comments:

How I Deal with My Lack of Spoons

8:50 PM chronicmigraineellie 3 Comments

I've had some of the best weeks of my summer in the last 3 weeks. I finished an amazing internship, visited friends, made spontaneous plans, and even was a tourist in my own city with friends. I was surprised by the amount of energy I had, and decided to try and use it as much as I could. Yet, as spoonies with a limited amount of spoons, how do we know when to stop? I know that there's been days that I've totally overdone it and have paid the price the next day. Here's a couple of my tips to make sure that you're getting the most out of your activities but also taking care of your health.

1. Plan out your day ahead of time
If you know that certain activities tire you out, try and cut the amount of activities you do. For example, driving tires me out. Instead of trying to drive all around my city and do things all over, I planned a couple days of activities that were all centered around the same area, allowing me to go do fun things, but not totally sap all of my energy.

2.  It's okay to say no.
I know that when I'm with friends, I won't always voice how tired I'm feeling, fearing that I was going to ruin the day or the plans that we had set out. Here's a small bit of my wisdom- it's okay to say that you need to rest. Your friends/family/significant other will understand why you need to take a break. I know, it's easier said than done. It never feels good to have to cancel or cut plans short, but honestly, it's better to keep yourself healthy and take the time to recharge so that you CAN do more activities the next day. It's all about balance.

3. Contingency plans are life-savers.
So here's a real-life situation that I've had; I'm out with friends in Santa Monica, we're doing a beach day after going to a museum. I'd already been feeling exhausted due to the heat and all of the walking, and wasn't sure how much longer I would last. So, after spending some time at the beach and grabbing dinner, I opted to take an uber home and recharge while my friends enjoyed the walk from Santa Monica to Venice. Having multiple options, like public transportation or mapping out all of the what-ifs, allows you to actually enjoy yourself even if you're a bit worried about your energy or health. I know that when I'm out, I am always worried about getting a migraine and not being able to get home or even be functional. Making plans with multiple options allows me to go out and do fun things without having to worry about making split second decisions. I know that if I am with friends and I don't feel well or can't handle an environment, I have already planned a couple options of how to get home  or somewhere comfortable safely.

Furthermore, sharing your contingency plan with your family and friends makes it easier for them to react and help you when you get sick. I have trouble talking and making sentences when I get migraines, so trying to make plans is extremely frustrating and difficult. However, if I've gone through the plans with them before, they can easily help me do what I need to do, whether it's taking my meds or finding a taxi or uber to get home.

4. Be Prepared
I never go anywhere without my rescue meds. Ever. If I go to the gas station down the street, you know that I'm going to have my meds with me. You never know where or when you're going to get a migraine, so why not be prepared? My friends joke that I'm a grandma, because I also have 3 million things in my purse. Need a bandaid? Need lipstick? I've got 5 different shades. I also carry Aleve and tylenol with me at all times. As a reminder, never give anyone your prescription drugs because those are only for YOU. Furthermore, always have earplugs or noise cancelling headphones. ALWAYS. For years I couldn't see movies in theaters because they were too loud and I would trigger from them. Now, I always have earplugs, and it's allowed me to go to concerts, movies and any other activity that I want because I don't need to be worried about not being able to handle the sound. I never know when I'm going to be affected, so I over-prepare, and this has saved me so many times and allowed me to continue to have fun.

5. Have Fun!
Not having enough spoons sucks. Not being able to get out of bed is a terrible feeling. Try and do small things when you can, even if it's having a friend over to watch a movie, or going out to lunch. You are the only one who knows how many spoons you have and how activities affect you. Do things that make you happy, because even if it's a small activity, you can feel happy and feel like you have fun, even if you need to spend some time to recharge.


Find what works for you and stick with it. You are the only one who knows how your body is feeling. Even though it feels shameful and embarrassing, it's okay to say no. In fact, I know that when I say no, I usually end up feeling better and am able to reschedule and be fully present then. There's nothing fun about feeling like a zombie when you're at a museum!

What do you do to deal with your lack of spoons? Comment below and let me know what works for you!

As always, have an amazing, migraine-free week!

3 comments:

Why I'm Unapologetic About My Chronic Illness

8:22 PM chronicmigraineellie 4 Comments



When I first got sick, I was ashamed to talk about my illness. It was hard for me to ask for help, and I felt like I was inconveniencing everyone around me. It's been about 5 years since I first started getting migraines, about 3 years since they became chronic. I used to apologize for having to ask for accommodations, or for substituting something that I can't eat at a restaurant. Maybe I'm just growing up, but I've realized that I needed to stop apologizing. I never asked to have a chronic illness. I never wanted to live my life with the uncertainty that I may not be able to make plans or live my life the way that I want to. Yet that's what happens with chronic illnesses- no one asks for it, but it's something that we have to learn how to deal with. It's  like riding a bike- except for the fact that your bike has a flat front tire making it impossible to control. Every step of the way is bumpy, even when your life seems to be sailing a little bit smoother.

So why was I apologizing for something that I didn't even have control of? First of all, I'm a chronic apologizer. I even apologize to inanimate objects when I bump into them. "Sorry" became a filler word for me. When asking a question, I would start with "Sorry," instead of "Excuse me" or the question itself. "Sorry" became a word synonymous with distancing myself from my illness, adding shame to requests that were perfectly reasonable.

Once I realized what I was doing, it was easy to change my attitude. There is no reason why I should be ashamed or embarrassed about my illness. It is as much a part of me as my passions and interests. I always felt that I had to apologize because I was "different."  I said "sorry" because my case was difficult and seemed to have no concrete, long-term solutions.  I had to learn how to deal with doctors, insurance companies, and medication side effects for a misunderstood illness that still needs a great amount of research to be fully understood. I was never a textbook case, nor will I probable ever be (ex. my blood clot). Now, I don't say "sorry." I talk to doctors about my case calmly and clearly, because I have nothing to be afraid of or "sorry" about. I've already been through the worst.

By not saying "sorry," I'm taking control of my illness. To say it clearly, I'm living my life instead of apologizing for letting my chronic migraines make my life decisions. Chronic migraines don't define me. They don't define my passions, my hopes and my dreams. Rather, they've helped me to see how strong and resilient I am, what my body has endured and how I've come out okay. If I never got sick, I would not be doing what I am today. I would not be writing this blog, or working to raise awareness about chronic and invisible illnesses. So no, I'm not sorry. Even though my life has been a rollercoaster with no end in sight, it's made me into who I am. I am a headstrong, passionate girl who doesn't eat gluten, tyramine or soy and is set on changing the world.

As always, have an amazing migraine-free week.



4 comments:

Finding Dory: My Experience with Memory Loss

7:16 PM chronicmigraineellie 1 Comments

I can't really remember the spring semester of my junior year of high school. No, really, I can't. The last memory I really have is watching Annie Hall on New Years Eve, and then my next clear memory is my junior prom in May where I went home directly after the dance. There's a couple sparse memories here and there, but the rest of it is pretty grey and cloudy. 

 Over July Fourth weekend, I saw Finding Dory with my family. There was something about Dory that reminded me of how I felt when I was very sick. There were multiple periods of time where I struggled to read, write and focus. As a consequence, my memory was heavily affected to the point that I couldn't recall information. Sometimes, I would be talking to someone and forget what I was talking about mid-sentence. Like Dory, no one really understood what was going on or how to help me because I couldn't remember or finish my thoughts. Sometimes I would be reduced to tears trying to find words just to make a simple sentence. It was frustrating, confusing and scary. I never realized how much I took my ability to talk, read and write for granted until it became almost impossible. As much as I tried to keep going, I felt incapacitated and discouraged.

 Neurologists did full work-ups, sending me through test after test finding nothing as to why this was happening to me. I was sent to doctor after doctor trying to figure out why my migraines were causing me to lose all quality of life. When I was in school, I would try and keep quiet so I wouldn't be called on in class and have to talk in front of others. Talking became a chore, something that I dreaded doing in front of people who didn't know the medical details of what I was going through.To cope, I became increasingly better at ways to find words when I would be unable to find the right word. I would keep on throwing out words until I found the right one, or my friends and family got the gist and filled it in. As someone who loves words, (I talk and write A LOT), losing my speech and memory made me feel like I had lost my life to my illness. 

 Memory loss is scary. It's frustrating and unnerving. Imagine a day where right after you do something, you forget what you just did. Even just creating simple lists becomes difficult. For me, I could encode new information (basically make memories) but I could not retrieve them from my memory. Studying for a test was infuriating because I could learn the information, but then forget it right after I said it. I honestly thought that my dreams of becoming a diplomat or running my own business were gone. Now, I know that I can achieve anything that I put my mind to. But then, my world as I knew it was gone. 

 The Spring semester of my senior year, I was put on an anti-Alzheimers drug called Namenda (generic name Memantine). It sounded crazy at the time, a 17 year old girl who didn't have Alzheimers on an Alzheimers drug. However, this drug made it possible for me to start to remember, encode and retrieve information. Namenda contained glutamate, which, through receptors, aids in memory formation, neural communication and learning. This off-label usage of Namenda, first used in a study by Dr. Andy Charles, allowed me to get part of my life back. While I still have migraines, my ability to remember and encode is less impaired than it was almost two years ago. Losing my memory and my words has made me a stronger person. It also made me thankful that I am able to speak, read and write again. Just like Dory, I kept swimming and finding my own way to function in order to live my life the best that I could. 

1 comments:

Subscribe to: Posts (Atom)