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
Katrina, a brave and stunning piece, and I've forwarded it to two friends who have/are confronting equally challenging diagnoses. Thank you for your willingness to put this out there for us all to learn from.
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