Winning the Sick Game

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!

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

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!

An Open Letter to America's Health Care System


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. 

The Path to Nowhere: Dealing with Loss and Emotions

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.

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


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!
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