Posted by: Shira Danin | October 25, 2009

Fibro Awareness

I started my blog (in Hebrew) two years ago after my first hospitalization ever.

At first I called it “The Life of a Student with Three Cats”.

About three months ago, with the recent flare up of my fibro, I decided to change the name to “My Life with Fibromyalgia” and to focus on the subject more than before.

I felt it was the right time for me to talk about this crazy weird life at 26 – A Life with pain.

This post is semi translated from the post I wrote in Hebrew upon changing the Blog’s name.

So, imagine it’s three months ago, and..:

“Yesterday I met a friend from my distant past in Computer Sciences. (After finishing half the Degree I realized it wasn’t really my thing, so I switched to Management)

We both got stuck in Beer Sheva (Uni. town) for a few years passed the common three years it takes to finish a B.A.

We talked a little about what held us back from finishing with our friends…

I told him about the pain I have in my joints.

He said, kind of jokingly: “what, you had fibromyalgia?”

I was shocked, but said yes.

The reason he knew the syndrome is because his brother faked it while serving in the army in order to get released.

Obviously it’s upsetting that people fake it because it just makes it harder to explain and prove to others for people who do have it. I say people but mostly it happens to be women.

The reason I was shocked is that no one has ever guessed I have Fibromyalgia when I mentioned the pain.

99.9% of the time I have to explain it.

Explaining it is always a challenge.

Telling someone about for the first time I feel two obligations regarding my explanation:

  1. Not depict myself as pity worthy or a charity case
  2. Convey what it’s like to live with fibro โ€“ in order to raise awareness

The challenge is keeping it short; after all you don’t want the person in front of you to get bored or lose focus.

Rarely does it happen that when I mention it to someone, that person knows of Fibro or knows someone living with it.

As I said, most fibro patients are women. From what I read it’s about 90%.

Since it also seems to be a genetically transferred syndrome, the probability that I or any other fibro lady will pass the syndrome on to her daughter, is quite high.

What I learned over time is: It is possible to live a normal life.

It’s challenging.

One of the challenging aspects as I mention before is the social aspect. Explaining about the pain & difficulties and about the limits I have to put down for myself.

It’s especially hard to answer the common question: “why does it happen, what causes it?”

The reason it’s hard to answer is that I do not know the answer. Not really. I can only guesstimate. My guesses are mostly based on my personal experience so they are not scientifically proven.

The magic word in my life is Balance.

It may be important for everyone (fibro or not) to balance one’s self, in different aspects.

But it is so much more critical for me (and I’m guessing other “fibroites”). When I fall out of balance, mental, emotional and/or physical, I really fall. It becomes even more impossible to function.

The pain isn’t caused by mental or emotional stress but they are affected by it.

When I am stressed or really upset, it may increase the pain or make the pain sharper

So I know I need to keep myself calm and happy, as much as possible.

In the Physical aspect:

I learned to brush my teeth with my left hand, and do many other things I used to do with my right hand.

I do this in order to balance out activities I have to do with my right hand, such as writing or brushing my hair (can’t brush with my left hand yet, it’s just not effective)

I still have to type this post with elastic bands on both my elbows and wrists. And still I have shooting pain in my right shoulder and under my right arm.

As I wrote in my previous post about humor and sarcasm, I try to cope via laughter. My tool against fibro sadness is to do something fun, funny, or crazyโ€ฆas long as I make myself laugh, it’s worth it.

for example:

Making myself laugh

It’s my way to not sink and wallow in thoughts of pain, limitation and changes forced on me and my supportive family. “


And one last thing:

Please feel free to share my blog with anyone you know who might be interested.

May we all have a happy and easy week!

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Responses

  1. Hi, uh… Boker Tov? (I speak a tiny bit of Hebrew.. ๐Ÿ™‚

    Anyway… thought you might like reading this woman. She’s Canadian, a great blogger and all-round bright light on the net. Has lots of posts on fibro.

    http://thistimethisspace.com/fibromyalgia/

    Cheers,
    ian in hamburg

    • Thank you Ian, it’s not really morning here but it’s the thought that counts:)


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