Highly Unpredictable

5:45 PM chronicmigraineellie 0 Comments

I've been putting off posting, not because I don't have posts ready, but because a year ago around this time was the second time that I became extremely debilitated by my migraines. I had a rough week this week, due to the fact that the current round of Botox is starting to wear off around week 11, instead of around week 12 which is next Friday. After having a couple months where my life seemed almost completely unaffected by migraines, I came back to college feeling like my life had turned around. Then this past week forced me to stay isolated in my room for most of the week, feeling unsure of my health. Between monitoring my health, getting all of my work done and trying to just stay alive, I started having fears that I would not be able to continue at college this semester. While I know that I am capable, it is hard to try and talk myself out of that mindset.
With invisible illnesses, there is an unpredictability that accompanies it, sabotaging dinner plans and appointments as well as daily tasks. As someone who likes planning things out, it's extremely difficult to have to drop all of my responsibilities because I am having a migraine. This spontaneity also leads to many feelings of self-doubt and guilt, for having to cancel plans or feeling like you dropped the ball on something.
I am so lucky to have friends and family who care about me and who not only understand what I'm going through but are able to help me get out of the detrimental mindset that one of my friends has deemed "my world is ending attitude." Even though I know that this is only a passing feeling, in the moment it can feel like the most isolating and hurtful attitude someone has ever experienced. I've learned that I should never make important life-changing decisions in this phase, because I will just end up undermining my goals which non-migraine brain me knows that I can achieve.
Despite individual reassurance that you can achieve your goals and live your life despite your migraines, there is always a constant fear that my life will spiral back to where I was for the past two years. No matter how calm I keep myself or how well-planned out my contingency plans are, there is always that little idea in the back of my head reminding me that this is something that I have to factor into my life. Usually, it's a fear that I keep to myself. I usually rationalize it by thinking that no one will understand what it's like to constantly live in fear of one's own body. But recently, I started talking to my friends about it. I started consciously acknowledging this fact and accepting it instead of letting it fester and cause more anxiety. This is not to say that I am not scared anymore, I still am. I am just more aware of it. The life that I live is far from what I want it to be, but I need to understand and accept that even though I have a bad week here and there that I am an accomplished person who has a life and who deserves to be happy.
Even writing this I feel nervous sharing one of my biggest fears. At this same time a year ago, I was going through an extremely debilitating time where I practically lived at Cedars Sinai because I was there so much. I almost travelled across the country to be put in programs at the Mayo Clinic, Cleveland Clinic or at the University of Pennsylvania. Having so much uncertainty in figuring out what was wrong with me medically has definitely taken a toll on me. Yet this year, I'm going to try and live without being scared. I know that I can take care of myself, (I learned how to give myself shots, I can do anything!) and that I have everything in place for my success in school. I've also learned that I need to be vocal about my fears, and step one is sharing this with all of you. No one will know what you're feeling if you don't tell them. Vulnerability is a very hard thing for me to experience, but in this case, it can be beneficial. Here's to hoping that all the med, dietary, and lifestyle changes that I've made can help me stay happy and healthy during this same period this year.
I'd love it if some of you could share your experiences and feelings, feel free to comment below or message me to talk.
As always, I hope that you all have a wonderful, migraine free week!


New Year New Me? 2015 in Review

4:55 PM chronicmigraineellie 0 Comments

With finals safely over and the holiday season coming to a close, I thought that it would be worth it to do a "year in review post." 2015 was a crazy year for me, filled with emergency room visits, adventures, amazing life experiences, friends and family. I'm at such a stable point right now, that a year ago I never thought that it would be possible. As I'm looking at my past year, I'm realizing how I was able to get myself to this place, and how I think that many people should approach living with chronic migraines.

I, for one, used to dismiss people who told me that I should really look at the food that I eat and the possible triggers there. I had already been soy and tyramine free for a while, but when it was suggested that I go gluten free for the first time last February, I didn't take it very seriously. How was not eating gluten going to help my migraines? Besides, carbs are my comfort food, how am I supposed to live without that? I was gluten free for about 4 months, and then I became "gluten-light" over the summer, meaning that I had at least one gluten free meal a day. While I still wasn't completely stable, I was feeling much better. When I got to college, brunch was my vice. Every Saturday and Sunday I would eat either french toast or a waffle and absolutely love it...until I had to go lay down for a couple hours. It was then that I realized that maybe I did have a problem with gluten, and it wasn't just some fad diet suggestion that so many people had said I should do. Almost 4 months into being completely gluten free, I am feeling 3 million times better and as a result am having less inflammation, which leads to less migraines. I've also seen a decrease in pain level, which I don't know if it is connected to gluten or not but it's something I noticed. The difference was my commitment, my ability to say that I was going to do everything in my power to control my triggers.

With this updated attitude, I was determined to not have my migraines control my life. I pushed myself to do things that I normally would be scared to do, both medically and academically. Last January, I would have been terrified to give myself shots and would have most likely opted for an acute hospital stay. In early November, I got over my fear of shots by rationalizing what I would miss in college; ranging from hanging out with friends to stress over missing classes and homework.

Taking a more rational approach revolutionized the way that I approach my migraines. No longer do I freak out at the onset of pain, or spiral into what ifs about what I'm going to miss. By staying calm and taking care of myself first, I was able to be more productive and feel better about myself. You can't take care of yourself if you're putting other duties in front of your health. For years, I always pushed and pushed in an attempt to get my schoolwork done, often sacrificing my health and inducing more migraines because I was scared of the retribution I could face by not doing my work. However, I realized that sometimes, deadlines are arbitrary. If I don't finish all of the reading for a class, I can do it later, the most important part is making sure that I can actually get to the class. That reading/essay/response can wait a couple days, and talking to my professors about what was going on allowed me to do my work on my own terms, and allowing me to take care of myself.

I talk to a lot of migraineurs who struggle to balance school with their migraines, and something that I've learned is that creating administrative channels to protect you academically is the best way to succeed. I encourage you to reach out to your class dean, dean of disability, or anyone who can help you by being a resource and helping facilitate a discussion with your teachers and professors. It is necessary to talk to your professors about your condition, even though you may feel like it's embarrassing or hard to talk about. They will not know if you don't tell them, and most of the time they will help you with deadlines or making the work fit to your health and ability. Also, it's okay to cry in front of professors and friends. Migraines are hard. Living with migraines is hard. Sometimes you just need to let it out, even in situations where you feel awkward about talking about your condition. I've definitely felt weird trying to explain what I go through, but I've learned what to say and what to keep to myself. For example, my usual talk goes something like this-
"Hi Professor X, I have chronic migraines. This means that sometimes I will be physically unable to come to class and complete some of the work on time. However, I will be in contact with you when this happens and will get notes from other students and make up the work as soon as possible."

Short, sweet and simple. I explain my condition without actually having to explain the confusing nuts and bolts. Through this conversation, you create a rapport with your professor, allowing them to see that you are a committed student who isn't just slacking off, but instead going through something and sometimes will need some flexibility.

While this has been a long post, I hope my revelations will help some of you through a tough time in your life. A year ago, I never thought that I could go 22 days migraine free, as that is how long I've been migraine free as of today. Through the right medication, diet and outlook, I've been able to live despite the fact that I have chronic migraines. I still have to protect myself from triggers, but I'm challenging myself to do things I never thought was possible. Currently I'm in Maui and yesterday I went scuba diving! With the pressure, I never though it was possible but I came up migraine free and happy. 2015 is over, and I'm welcoming a 2016 full of new experiences. I'm hoping that I continue to stay this stable, but I know that there is always a storm on the horizon. Yet I've learned to live every day to the fullest despite the possibility of a migraine. I hope that you all can to, and that everyone will have a pain-free 2016.

Thanks for listening to all my ramblings! I hope to continue this blog through the year, let me know if you have any suggestions for posts!