With only a few weeks left to go in my first semester here at Sarah Lawrence (Where did all that time go???) I am busy working on my two conference projects, and all of my other assignments. My Fibromyalgia diagnosis has finally started to sink in properly, and I am learning where to place my limits. I am learning when to push myself and when to resign to a tough day. I am looking forward to the Doctor Who 50th Anniversary special this saturday. A welcome break from studying. And in just a few days I will be on a bus headed back to the place where I left my heart....Cleveland.
I never knew you could love where you were so fiercely, and yet ache so strongly for home. For Buckeye candies and the way Tower City lights up at night. For POP instead of Soda. For snow in October. For the way Lake Erie looks when it is freezing. I am so blessed and happy to be here in New York. I love my school. I get this little rush of happiness when I am crossing the gorgeous campus carrying a ridiculously large stack of books back to my dorm, or when I am rushing to the Performing Arts Center right next door. My heart is divided, and probably always will be, and thats ok with me.
Yet, I still want a sign from the universe, some clear sign that I am making the right choices, that I am meant to be here, that I will find happiness and fulfillment here. Sometimes, the universe works in mysterious ways. Today my Theater Outreach class welcomed a really remarkable New York City director and playwright who specializes in "Docu-Drama" and social outreach types of Theater. I was inspired and engergized. I came out of that class just bubbling over with ideas and thoughts. I had more energy in that moment than I have in weeks. My mom noticed this change too (over the phone I might add!) as did two of my teachers. I explained to them, that this is my normal.This feeling tired, headaches, and pain that I have been battling are not normally so severe. I explained to them that normally I am alive with ideas, engaged and passionate about life. I explained that this is me, because...Ladies and Gentlemen, for today anyway, I got ME back!
Wednesday, November 20, 2013
Thursday, November 7, 2013
Held Back, But Not For Long
Some days are harder than others. Some days I feel totally up for a long day of classes, meals with friends, homework and traipsing around the gorgeous campus I am lucky enough to call home. Others I am tired, sore, barely able to make it from class to class. Distracted from my note-taking, because pain is shooting through my arm. Exhausted from a night of disturbed sleep that was hard to get to in the first place. I am coping, I am managing, but not without keeping an eye on what I am missing out on.
For anyone who knows me, they know that sometimes I can be a bit of a homebody. Right now however, I spend almost every evening in my dorm, in bed, resting. For someone who likes to keep busy, and who is itching to capture everything this school has to offer, this is a frustrating reality.
This friday is the Fall Formal, but I will be staying in instead for a night of knitting and netflix, while this is way more my style in the first place, trying to explain myself to others is not so easy. Having to say "I can't today, I'm not feeling well" or "You know what, I don't think I'm up for that" is hard.
On the bright side of things however, I am going to be working with food services to improve my gluten free options in the dining hall, and I am now on the school's medical transport list, so for days when I am especially bad, I can get a ride to where I need to go on campus. Another bright light in my week is the upcoming field trip to trader joe's. Really looking forward to stocking the mini fridges with fresh fruits and veggies and my favorite TJ's staples! And yet another bright spot, in less than three weeks I will be on my way back to Ohio, with my friend from Essex County England in tow! So excited to show her the sights of Cleveland like the Art Museum. And to spend some good quality time with family and friends, not to mention some good homemade food and catching up on all my favorite shows.
Being away from home, and being sick, is probably one of the hardest things I have ever had to do. Its probably one of the hardest things my mom has ever had to do to stop herself from climbing on a bus and rushing to my side to take care of me like she does so well. I am coping, I managing, but my new way of living is going to take some getting used to. This "Fibro" stuff, its just my new normal.
For anyone who knows me, they know that sometimes I can be a bit of a homebody. Right now however, I spend almost every evening in my dorm, in bed, resting. For someone who likes to keep busy, and who is itching to capture everything this school has to offer, this is a frustrating reality.
This friday is the Fall Formal, but I will be staying in instead for a night of knitting and netflix, while this is way more my style in the first place, trying to explain myself to others is not so easy. Having to say "I can't today, I'm not feeling well" or "You know what, I don't think I'm up for that" is hard.
On the bright side of things however, I am going to be working with food services to improve my gluten free options in the dining hall, and I am now on the school's medical transport list, so for days when I am especially bad, I can get a ride to where I need to go on campus. Another bright light in my week is the upcoming field trip to trader joe's. Really looking forward to stocking the mini fridges with fresh fruits and veggies and my favorite TJ's staples! And yet another bright spot, in less than three weeks I will be on my way back to Ohio, with my friend from Essex County England in tow! So excited to show her the sights of Cleveland like the Art Museum. And to spend some good quality time with family and friends, not to mention some good homemade food and catching up on all my favorite shows.
Being away from home, and being sick, is probably one of the hardest things I have ever had to do. Its probably one of the hardest things my mom has ever had to do to stop herself from climbing on a bus and rushing to my side to take care of me like she does so well. I am coping, I managing, but my new way of living is going to take some getting used to. This "Fibro" stuff, its just my new normal.
Saturday, November 2, 2013
Fibro-what?
For a little over a month, I have been having symptoms like muscle and joint pain, tension headaches, fatigue, sensitivity to noise, light, and temperature, lower than average body temperature, unexplained weight gain, sensory overload, cognitive fog, trouble concentrating, anxiety, and depression. Some of these symptoms I have had for 10+ years, like my anxiety and depression. Others, like the joint and muscle pain, fatigue, weight gain and sensitivity to light, sound and temperature, have been ongoing for years. Others are more recent. These symptoms make daily life difficult, and are as unpredictable as the weather in Cleveland.
I was diagnosed with Fibromyalgia and a significant Vitamin D deficiency on Tuesday afternoon. Fibromyalgia is something I have thought might be the possible diagnosis for a while, but the confirmation of this is still overwhelming and scary. There is no cure for Fibromyalgia, but there are medications, treatments and lifestyle choices I can use to help treat my symptoms. Very little is understood about this enigma of a syndrome, and the cause of this disease has only very recently been thought to have been discovered. My anger is setting in. Anger at the ways that this illness is impacting my life, and my happiness, Fibromyalgia is less common in young adults. Anger that I can't be nearly as active as I once was. Anger that this syndrome is so hard to explain and so misunderstood.
I have wanted few things other than to go to college, and be in a place where I am accepted and feel happy. When I am finally here, when I am finally have one of my life's dreams in my grip, I am being confronted with a chronic illness that is threatening to take over my world. I am angry because I want to be soaking up all that Sarah Lawrence and New York have to offer, but instead I am lucky if I can complete the tasks I have to. I want to be able to take the train into the city and explore, or even just run across campus to hang out in a friends room. I am scared, because I don't know if when I wake up, my symptoms will be better or worse.
A way that I have discovered to explain the toll this takes on me physically and mentally is called The Spoon Theory (I attached the original to the bottom of this page.) Basically, lets say that every day you get a different number of spoons and each spoon represents the tasks you have/want to do that day. Some days you have more spoons that others. Some days you barely have any. There are some days where, in order to accomplish everything, you can steal a spoon from the next day, but knowing that tomorrow and the day after, could be even harder because of that. Like I have said, its scary and overwhelming, and I am just trying to make it all make sense in my head, let alone on paper.
I am sad because I am just at this high point of my life, and I feel like this is holding me back. I want to cry and scream and throw things because this, like so many things in life, just isn't fair. It really isn't. I have so much I want to do, and see and experience, but now this is just one more obstacle in my way. It isn't insurmountable, or manageable, but it seems that just when I think I am beginning to get my life figured out, another curveball is thrown my way. But this is a big curveball, and I am going to need a lot of support and compassion to get through this.
But just because I am angry, and sad, and scared doesn't mean I stop trying. I am not going to let Fibromyalgia control me or my life. I am going to let it steer the course of my ship on some days, but I am the captain of my own ship. I am going to keep learning and educating others about myself. I am going to be researching ways that I can raise awareness about this misunderstood syndrome. I am going to do what I always do, continue to Keep Calm and Carry On.
That being said, below I have written some quick tips of what you CAN do to help me. I also attached some articles for more information on Fibromyalgia, and living with an "invisible" illness.
Thank you all for your support, love and empathy.
-Katrina
What not to do:
One of the hardest things to handle right now is telling people how they can help, because even if you might want to, you can't take on my pain, and some days even a hug hurts.
-Instead trying to play "topper" with me, acknowledge that there are different levels of pain, and what I am feeling is an almost constant and nearly every day is spent in some sort of pain.
-Instead of trying to give me advice, listen to what I am doing to take care of myself.
-Instead of trying to make me feel better by pointing out that things
-Instead of assuming that just because you have never heard of Fibromyalgia then I must be making it up. Look it up, ask me questions, but don't tell me what I am going through is not real.
-Anything small, because support is what I need in order to cope with this.
-Offer to help or to listen. I may not take you up on this for whatever reason, but knowing it is an option, is a real comfort.
-And if prayer is your thing, feel free to do so.
-Give my symptoms and feelings validity, this is scary and overwhelming, and when others show in small ways that what I am going through is valid, it makes it a little less so, and easier to cope with.
LINKS:
http://www.mayoclinic.com/health/fibromyalgia/DS00079
http://communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/oct/17/fibromyalgia-solved-pathology-not-mind/http://shadowsoffibromyalgia.wordpress.com/2010/07/28/how-to-explain-fibromyalgia-to-family-and-friends/
http://shadowsoffibromyalgia.wordpress.com/
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
http://www.youtube.com/watch?v=NEL6puqRd-I
I was diagnosed with Fibromyalgia and a significant Vitamin D deficiency on Tuesday afternoon. Fibromyalgia is something I have thought might be the possible diagnosis for a while, but the confirmation of this is still overwhelming and scary. There is no cure for Fibromyalgia, but there are medications, treatments and lifestyle choices I can use to help treat my symptoms. Very little is understood about this enigma of a syndrome, and the cause of this disease has only very recently been thought to have been discovered. My anger is setting in. Anger at the ways that this illness is impacting my life, and my happiness, Fibromyalgia is less common in young adults. Anger that I can't be nearly as active as I once was. Anger that this syndrome is so hard to explain and so misunderstood.
I have wanted few things other than to go to college, and be in a place where I am accepted and feel happy. When I am finally here, when I am finally have one of my life's dreams in my grip, I am being confronted with a chronic illness that is threatening to take over my world. I am angry because I want to be soaking up all that Sarah Lawrence and New York have to offer, but instead I am lucky if I can complete the tasks I have to. I want to be able to take the train into the city and explore, or even just run across campus to hang out in a friends room. I am scared, because I don't know if when I wake up, my symptoms will be better or worse.
A way that I have discovered to explain the toll this takes on me physically and mentally is called The Spoon Theory (I attached the original to the bottom of this page.) Basically, lets say that every day you get a different number of spoons and each spoon represents the tasks you have/want to do that day. Some days you have more spoons that others. Some days you barely have any. There are some days where, in order to accomplish everything, you can steal a spoon from the next day, but knowing that tomorrow and the day after, could be even harder because of that. Like I have said, its scary and overwhelming, and I am just trying to make it all make sense in my head, let alone on paper.
I am sad because I am just at this high point of my life, and I feel like this is holding me back. I want to cry and scream and throw things because this, like so many things in life, just isn't fair. It really isn't. I have so much I want to do, and see and experience, but now this is just one more obstacle in my way. It isn't insurmountable, or manageable, but it seems that just when I think I am beginning to get my life figured out, another curveball is thrown my way. But this is a big curveball, and I am going to need a lot of support and compassion to get through this.
But just because I am angry, and sad, and scared doesn't mean I stop trying. I am not going to let Fibromyalgia control me or my life. I am going to let it steer the course of my ship on some days, but I am the captain of my own ship. I am going to keep learning and educating others about myself. I am going to be researching ways that I can raise awareness about this misunderstood syndrome. I am going to do what I always do, continue to Keep Calm and Carry On.
That being said, below I have written some quick tips of what you CAN do to help me. I also attached some articles for more information on Fibromyalgia, and living with an "invisible" illness.
Thank you all for your support, love and empathy.
-Katrina
What not to do:
One of the hardest things to handle right now is telling people how they can help, because even if you might want to, you can't take on my pain, and some days even a hug hurts.
-Instead trying to play "topper" with me, acknowledge that there are different levels of pain, and what I am feeling is an almost constant and nearly every day is spent in some sort of pain.
-Instead of trying to give me advice, listen to what I am doing to take care of myself.
-Instead of trying to make me feel better by pointing out that things
-Instead of assuming that just because you have never heard of Fibromyalgia then I must be making it up. Look it up, ask me questions, but don't tell me what I am going through is not real.
- Instead of saying "I'm sorry" or "I wish I could help", because I know, I see it in your eyes and your face. Saying "I'm sorry. That must be really scary, let me know if there is anything I can do" or something of the like is more appropriate.
-Drop me a line every now and then to check in. Knowing that I have support can make a rough day a little brighter.
-Send me a funny or inspirational picture.-Anything small, because support is what I need in order to cope with this.
-Offer to help or to listen. I may not take you up on this for whatever reason, but knowing it is an option, is a real comfort.
-And if prayer is your thing, feel free to do so.
-Give my symptoms and feelings validity, this is scary and overwhelming, and when others show in small ways that what I am going through is valid, it makes it a little less so, and easier to cope with.
LINKS:
http://www.mayoclinic.com/health/fibromyalgia/DS00079
http://communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/oct/17/fibromyalgia-solved-pathology-not-mind/http://shadowsoffibromyalgia.wordpress.com/2010/07/28/how-to-explain-fibromyalgia-to-family-and-friends/
http://shadowsoffibromyalgia.wordpress.com/
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
http://www.youtube.com/watch?v=NEL6puqRd-I
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