Posted by: Shira Danin | March 30, 2010

Raising Awareness to Fibromyalgia


About a week ago I opened a new page (group) called “Fibromyalgia – A New Life”, in Hebrew. My goal is to allow all the Fibromyalgia sufferers and their families in Israel to support each other and share content and stories on the subject.

The first reason that made me think about it was, when I looked for a group or forum on Facebook for Fibro so I could invite my Israeli friends to read my blog in Hebrew. I could not find one group or page in Hebrew.

The second and more important reason I realized only after opening the group. This week I heard a number of stories about people who didn’t know their parents or friends had fibro. It made me think about a central part of life with Fibro: coping with unawareness and lack of understanding.

Almost every person I started talking to about the pain was completely unaware of Fibro’s existence. “Fibro-WHAT?” was the most common response. When I have enough energy I explain about the illness and life with it, considering the person’s level of interest and his listening capacity.

My closest friends (and family) learn quite a lot from me about Fibro and coping with it. They have to learn so they can handle my different moods and lack of energy. Due to all this learning they became quite the ambassadors for Fibromyalgia. So, I’m proud. I’m Proud that I’m doing my part to raise awareness.

But, I guess I still have more to do. As of now, there are 33 fans/members (including me) in my group, and I hope this is just the beginning. Israel has about 7 million people residing in it. As is publicly known about 2% of the population has Fibromyalgia. Simple math brings us to the conclusion that there are roughly 140,000 Israelis with Fibro.

I see all the awareness that exists in the US, which still isn’t enough and you could say “I have a dream…” I believe that as more people in Israel know, and more of them understand, our lives can only improve. Obviously, having people understand doesn’t make the pain go away but, it does help coping. I write here a lot about the importance and significance of support when it comes to coping, whether the support is from the closest people to you or strangers and acquaintances you meet through life.

So these days I try to locate all sorts of information sources, coping stories, pictures and videos related to Fibro and life with Fibro. I want most of the content to be in Hebrew because that is the point of the group. Most Israelis find it easier to read Hebrew than English. I want to develop the group and encourage communication between the fans. I hope that in the future the  fans will add their own content and links to other sites they find.

There’s a famous story in the US called “The Spoon Theory” which explains in a clear and creative way the everyday battle with an “invisible disease” (it was written about lupus but fits the explanation for Fibro and CFS as well).

I contacted the write to ask permission to translate it to Hebrew. There are some copy rights issues so she didn’t permit me to translate, publish and link to the original. She said you can translate it with a click of a flag button (which uses Google translation). Sadly the translation is completely incomprehensible, makes no sense and is unreadable.

For example, I translated part of the translation back to English in order to show that this story is not available in Hebrew despite the author’s suggestion:

“When I walked to take part my medicine with snack as is my habit, she looked in me inside awkward of look, in place to continue the conversation. And then she asked me suddenly how is feeling to be lupus and to be sick. (male speech) I was shocked, not just because she asked the question random, but also because I assume she used to know the all from what is to know on lupus…I was spoons in order to pass the dot this. The life they used to know once. If I was in control, and you took from there the teaspoons. And then she will know what the feel there is someone or something other, this case lupus, to be in control”

When Tomer and I tried to read it we cracked up from lack of logic…but that makes me sad because it is such a powerful and sad story and I shouldn’t be laughing.

I’m still working on it and I hope I will be able to make it legible to Israelis and somehow make it available (maybe by link) to the Israeli fibro page I opened.

I’ll end this post with Passover, which we are celebrating this week. Yesterday was the first time I was in Israel but not with my family on the Passover Seder.  We went to tomer’s family for the Seder (the meal) with the uncles and grandparents and cousins. I’m used to my family where every event is highly documented by pictures. Tomer’s family doesn’t really take a  lot of pictures, but I did. So here are a few pictures from last night:

Tomer and Shira Passover 2010

Tomer is serious about reading the Hagada


During the Passover Seder (for anyone who isn’t familiar with Jewish customs) we start with reading the “Hagada”, the Passover story with all the prayers, customs and songs. We then eat the meal, and then are supposed to go back to reading the Hagada and singing the rest of the songs.

It was a really interesting experience to take part of another family’s Passover Seder. Only yesterday I realized how important it is for me to keep reading the “Hagada” after the meal. There are some songs that my late grandfather, Hiram Danin, used to sing every Passover and after he passed away my father would sing in his place.

I missed my grandpa so much yesterday (he passed away 5 years ago) so I sang his songs to myself. I sang two other long songs that I always made my family sing all the way through, despite the repetition. All of a sudden it was 11:45 pm and we had to drive all the way to Beer Sheva (1.5 hours away)

So thank you for reading my blog, I wish you a happy Passover, happiness, health and Love!

For anyone who missed it: my story of Being a Student with Fibromyalgia

Pipkalach - some sort of meat sauce

The Seder Table

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Responses

  1. Wishing you nothing but the best in your journey of translating the spoon…..i had to laugh also as I read it. I think it is a great thing you are doing….

  2. There was some new research released today on the effectiveness of exercise to reduce symptoms of fibromyalgia

    http://www.healthhabits.ca/2010/03/30/fibromyalgia-is-no-match-for-exercise/

  3. think about speaking with a sleep specialist. i have been greatly helped by brad@sleepsd.com, who has been prescribing xyrem for me these last 3.5 years. i have progressed and now, after more than 25 years with fibro, can exercise, get a good night’s sleep, drive again, see friends, shop and read books. Xyrem has made all the difference in my prevailing over this horrible illness.

  4. I don’t believe I’ve seen this said in such an informative way before. You actually have clarified this for me. Thank you!

  5. Hi,

    Good Luck with informing people about Fibros. What do you say about how you manage? What advice would you give? I’ve just written my 5th post on my blog which is titled ‘I hate fibromyalgia’. Maybe a little over the top as I write it again. But I’m sure u understand that feeling.
    Will be following your blog now. I’m glad wordpress came up with the related blogs.

    http://www.anchalprasher.wordpress.com


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