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.


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.