Fitness Fun: Trying to be Active with a Chronic Illness

Anyone who knew me before I got sick knew that I lived and breathed soccer. I had been playing since I was 4 and my family loved watching and playing it. When I got sick, however, I had to stop playing because if I over exerted myself, I would trigger a migraine. At first I felt disheartened, how was I supposed to stay active when even trying to run a mile would start the pounding that felt all to familiar in my head? 2 years ago, I gave up on fitness. I had no energy for it and I felt that I could use what little energy I had for more important things like school work or violin.
As I've been recovering over the past year and a half, I've learned how to adjust my fitness and health in a way that is rewarding for me but not damaging to my health. Now, that is to say that I haven't perfected it; in fact, it's quite the contrary. I am still learning what feels good and what is too much.
While I am still not the most active person ever, I've figured out what feels good to me and what fitness goals are realistic and which are not.
1) Listen to your body
I cannot stress how important that this is. Wednesday, I went to a spin class at Flywheel Larchmont with my internship. Usually, whenever I have gone to spin classes I overexert myself because I want to keep up with the rest of the class and with the instructor, usually ending up with a huge migraine by the end of the day. Unlike other spin classes I had been to, Flywheel stressed the importance of listening to your body, and even though Veronique was giving us recommended torque levels, there was no pressure to over-exert yourself, instead it was about finding what felt good to you and even then challenging yourself a bit. Because of this, I was able to enjoy my spin class and despite my sore muscles the next day, I felt almost completely migraine-free.
Me and the other Amplify Interns at Flywheel pre-spin class! (I'm on the far right)

2) Find what works for you
As someone who loves soccer and running, it was terrible to not be able to run. In college, I fell in love with elliptical machines, because they allowed me to feel like i was almost running but not get to the level where my head would start pounding. After a couple months, I was actually able to get on the treadmill and run a mile, pain-free.
I also love doing yoga because it allows me the freedom to really listen to my body, stretch and re-balance myself. In college, I had a monthly subscription to an online video yoga site. This allowed me to do yoga in my room, on my own time, and as much or as little as I needed to.
Furthermore, I found that doing 30 minutes of cardio and a 10 minute ab routine allowed me to feel energized and good but not totally sap all of my energy.

3) Eating in moderation
As someone who cannot live without sugar, I've learned how to tailor my diet so that I can still enjoy my favorite foods (all gluten free of course!) to maintain a relatively stable weight even when I'm not working out as frequently as I would like.

Learning all these things has taken time. Over the course of my illness, I went from someone who exercised 5-6 times a week, to never to a couple times every week or two. The most important thing it that I am happy and healthy, and starting to get back into my favorite sports and activities without fear of triggering a migraine. While I'm still far from my ideal body, I also have realized that loving my body and giving myself credit for how much it's gone through is also important. With chronic illnesses, it is often a full-body experience, and figuring out what feels good to you is the best thing that you can do for yourself. Don't beat yourself up if you can't make it to the gym or to that class you wanted to go to, there will always be another opportunity. If there is no balance between fitness and relaxation when you are taking care of yourself, it is so much harder to recover and live a happy, healthy life.

The Unknown- Diagnoses and My Life

After finishing my freshman year of college, living through a blood clot and starting to get my migraines under control, I was feeling pretty great about my life and how different everything was from the last 2 and a half years. Yet when I went to go see my rheumatologist for a follow up when I got back home, I left that visit feeling just as confused and burdened as I had when I first got my diagnoses of chronic migraines. When I started this “journey,” no one knew what was wrong with me. I was poked and prodded by doctors and needles trying to figure out why I wasn’t a textbook case of migraines and why I was having neurological issues. It was confusing, every time we thought that we had found a solution, however temporary it may have been, something happened that then changed the effectiveness. For example, my body gets used to medications very quickly, so every 6 months to a year I’ve had to change dosages or medications in order to attempt to keep me stable.
I’ve thought a lot about the word “stable.” What does it actually mean? To me, it means that I can live my life to the fullest extent. A year ago, “stable” meant that I could walk at my high school graduation. Now, it means that I can live my life despite the migraines, blood clots and various other medical problems that I experience. My idea of what stability is may be completely different from yours, but it is important to think about this and decide what stability means to you.
Coming out of my rheumatologist’s office, I wanted to break down and cry. I couldn’t tell whether it was from relief or from how scared I was. She was hypothesizing that I may have Undifferentiated Connective Tissue Disease, a term that describes certain lab test results that look like a systemic autoimmune disorder or connective tissue disease. However, the characteristics that are used to define auto-immune disorders and connective tissue diseases are not well-defined enough to fall into one well-defined diagnosis like lupus and rheumatoid arthritis.
While my doctor was talking about referrals, possible medications and more labs, my head was swirling around with emotions and questions. At first, I was so shocked that all I could say was, “But I thought that we ruled out Lupus?” We did, but I did have an elevated ANA, so the UCTD could be a precursor to Lupus.
“Oh,” I thought. Well I guess that makes sense, and I had an ER scare a couple months ago that confirmed that I had Reynaud’s, which also fits with this diagnosis. As I started to do more research, I realized that this diagnosis could actually fit with many of my symptoms, like the extreme fatigue, that had stumped so many of my doctors.

As relieved as I was that there was a possible name to the medical insanity that I had been through, I also realized that there was also the possibility that this would not be a correct diagnosis. I was entering into the “unknown,” one of my worst fears. Navigating medical issues that are not textbook is difficult, because it means bearing the burden of information while also trying to keep your emotions at bay.  I’ve learned that I have to be my best advocate, to remind doctors of the specifics, in order to get the best care possible. No matter how much I try to keep myself rational, I need to allow myself to feel my emotions. The “unknown” is scary, especially when you feel like everything has just started to fall into place. I joke with my friends that it’s not my life unless something is going on, which is a sad truth. Luckily, I have my friends and my family who support me. When I’m in these periods where I don’t know what is going on, whether my blood clot was due to my birth control or whether there’s a larger issue at play, or I’ve had multiple migraines and can’t function, I have people who will help me, no questions asked. That’s the only way that I’ve been able to get through this whole ordeal. As I’m about to embark on another journey into the unknown, I like to think of myself as The Starship Enterprise, venturing into unknown territory. Somehow, I’ll always come back to Earth, slightly banged up but okay.
As always, have a lovely, migraine-free week!

The Importance of Healing

Recently, I have barely posted new blogs or even updated my blog's Facebook page. I've struggled to find topics that I would consider "good" or "interesting." For three weeks after my last post, I couldn't even open up my blog and look at it. I felt guilty, of course, for my readers who checked my blog and found nothing new, and for myself as well because I felt like I was failing myself by not posting. Yet I realized that sometimes it's important to heal. Living with an invisible illness and all of the complications that come with it isn't easy. The pain, distractions and emotions are like a never ending rollercoaster that almost never evens out.
After my blood clot, I felt like my life was out of control. Here I was, a second semester freshman, struggling to advocate for myself to my doctors, feeling abandoned and overwhelmed no matter how much I organized myself. I had lists, too many actually, that detailed what I needed to get done. This ranged from doctor's appointments, to scheduling when I could pick up prescriptions, to when I should start taking said prescriptions, figuring out my current class work on top of the extensions from when I was in the hospital to trying to be a functional human being. I was exhausted. I was done. I spent too many nights crying before I went to bed for reasons that I couldn't vocalize. I couldn't bring myself to open up my blog and write, let alone allow myself to even start to process my emotions. That's the problem that I have. When my life feels chaotic, I push down my emotions so that I can function at "peak levels." While this allows me to get my work done, what I never account for is the fact that there is a crash. There is always a crash. And that crash is one of the hardest things that I've ever had to deal with.
Just as I was starting to deal with the fact that I was living with a blood clot, I had to deal with the surrounding emotions of my mortality, my ability to function and my happiness. When someone would ask me how I was doing, I would say "I'm okay." But I wasn't okay. I wasn't okay at all. In fact, I was probably the farthest from being okay, but I realized that not being okay was acceptable. Not only that, it was normal, good even.  The fact that I wasn't okay means that I was (and am) resilient. If I didn't deal with the darkest of my emotions surrounding my health, I never would have been able to process what was going on in my life.
My spring break was uneventful. It was wonderful. I was able to sleep, relax and be with my family and friends. Furthermore, I was able to process and think about my health problems with people who supported me and loved me. I had long talks with my parents and even confessed at one point that I had thought about potentially taking a medical leave this semester because I felt like I was not able to do my coursework. I remember sitting at our kitchen table talking when my parents told me that at no point during this trying period of my life did they feel like I was incapable of being in college or being away from home. They were proud of me, for how I had fought for myself and how I conducted myself.
It was exactly what I didn't know I needed to hear. That's when I realized that I needed to take some time for myself. I needed to start healing before I could even start to think analytically about what happened. I needed to not be okay in order to become happy again.
As migraineurs, our lives are filled with days and weeks where we're not okay. So often we push down feelings of pain in order to just get through the day. I've been in class and felt like I was about to pass out due to the pressure change and the pain that comes with that, but stayed in the class because I felt like it was imperative that I didn't miss the class. So despite all of our heroics, we need to take a step back and evaluate our emotions. We all need to realize that it's okay to not feel okay. We're only human. We can only deal with so much. Yet what I've realized recently is that I needed to learn how to cut myself some slack and not be so hard on myself. I needed to realize that sometimes it's okay that I only got half of my reading done that day, because I didn't sleep and it was raining or whatever had happened. I learned that being flexible and knowing that there is space for me to move things around made me happier, and in turn, I was able to get more done because I wasn't constantly pressuring myself.
If anything, this post is about learning how to not be okay. I needed to not be okay, to take a month off from blogging, to go home and sleep while my friends travelled, in order for me to feel better. Give yourself the time to heal. Have a nice cry, a hot shower, your favorite food. It's okay to not be okay, I promise. It's hard to accept that, but it's true.
Take time for yourself this week. Do something that makes you happy. And as always, have a lovely migraine-free week.

Under Pressure

As a human barometer, I feel every single pressure change that goes on. This phenomenon, or curse, allows me to feel whenever the weather changes from sunny skies to dull greys, and when it is going to rain. Now, many people are afflicted with this problem, not just migraine sufferers. Some people get terrible sinus headaches, or just a bad headache. Yet for me, the smallest pressure change can set off the plethora of symptoms that accompany a migraine attack. I get nauseous, I can’t focus and often times I’m so fatigued that the best way to describe it would be to say that I had been hit by a bus. So how do I deal with these symptoms, and stop them from progressing into a full attack? Well read on, because I am about to divulge some of my most helpful secrets.

1) Caffeine.
What? Caffeine? Can’t that trigger migraines? The answer to that is yes, it can. But it can also alleviate migraines and migraine symptoms.,I drink decaf coffee, which has only 5% of the original caffeine in the beans. In order to be classified decaf in the US, 95% of the caffeine must be stripped. In the EU, that percentage is 99.9%. By drinking decaf, I can safely have a small amount of caffeine without having the jitters and jumpiness that I feel when I drink regular coffee. This also helps on those days where there's pressure changes and you don't have a migraine but you still feel the brain fog and fatigue. You can also drink tea as well. Peppermint, while herbal, has a calming and re-energizing effect that helps me stay focused when I'm feeling tired.

2) Ginger Ale
Oh ginger ale, my best friend. If you ask any of my friends in college, I practically live off of ginger ale. It is my go-to for nausea when I don’t want to take Zofran,. I usually keep at least 10 in my room at all times for when I need it, which is fairly often. As much as I love East Coast weather, the pressure changes have not been kind to me, and I deal with nausea all the time. Luckily, a bit of ginger ale and relaxing can often help. When I’m nauseous I like curling up into a ball because it alleviates the pain in my stomach. Every person is different, but try and find a position in which you are the comfiest. Curl up with some fuzzy blankets, ginger ale and Netflix and rest until you feel a bit better.
**A word of caution, many diet drinks contain aspartame which is linked to causing migraines. Personally, I stay away from it because it can trigger me, but again, every person has their own triggers so just be aware of your sensitivity to it!

3) Snow is fun, but be prepared to be rest and recuperate
I had my first snow day ever in January! I had so much fun with my friends, but I also became very fatigued due to the pressure change. Sometimes I remind myself that I need to slow down and take a breather, and push some of my work onto other days. Rest and relaxation days are key to being fully recharged mentally and physically. If you're having trouble rationalizing rest over doing work, remind yourself about spoon theory. If you use up all your spoons, you are possibly hurting your chances of having enough productive spoons for tomorrow. Spacing out your activities is necessary, but make sure that you can schedule some time to do something that makes you happy. There is no shame in staying in with blankets and Netflix instead of going out when you feel like your energy is low.

4) I love the rain, but my body hates it
Since I'm from California, I absolutely love the rain. I love walking in it, splashing in puddles and falling asleep to the sound of rain. However, I am a human barometer, I actually feel physically affected for a couple hours, nausea and fatigue, before it starts raining and I usually feel fine after it starts! (It's like I have ESPN or something!! okay enough with the Mean Girls references) I usually follow the same protocol as I do when it snows or is any pressure change. For example, today it rained a lot, so I had a large iced chai tea which even though I felt exhausted was a treat for me!

Dealing with pressure changes is something that I've gotten better at as I've gotten better at managing my migraines. Instead of flipping out when I feel a pressure change, I just take a deep breath and look at what I need to get done that day. If I can move something so I can spend some time relaxing, I do. If I have somewhere I need to go, I grab coffee/tea/ginger ale and try my best to be a functioning human. Just remember that sometimes you need to balance your health with what you need to get done. I always struggle with this, but I know that if I spent an hour recuperating and relaxing, there's a better chance that I will finish what I need to get done than there is if I just try to push through it.

Pressure changes are difficult because they are unpredictable, much like migraines. Take it day by day, and just remember that if you don't finish that one reading assignment, the world will not crumble. If you take care of yourself, you'll feel better and in the long run be happier too. I struggle with this too, which is why I write about it. I hope my guide helps all of you when you're dealing with pressure changes!

As always, have a lovely migraine-free week! 

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