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!

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