Fitness Fun: Trying to be Active with a Chronic Illness

2:00 PM chronicmigraineellie 0 Comments

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.

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The Unknown- Diagnoses and My Life

12:13 AM chronicmigraineellie 0 Comments

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!

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