Posted by: Shira Danin | March 13, 2010

Being a Student with Fibromyalgia – Part 3

If you haven’t read my story from the beginning, you can click here to start at part 1

I once wrote in my blog that the key word regarding life with Fibro is “Balance”. Balance between rest and action, checking where I should “waste” the little energy I have. How much will I gain knowledge and interest wise if I come to class compared to how much energy and concentration it requires. To balance between the support the elastic bands give me when I need to work with my hands, compared to the pressure they exert on my skin and the pain that comes with it. To sum up, every time I leave the house by car or by foot, is extensively calculated with regards to energy demanded vs. benefit.

Even a shower, eating, going to the bathroom, it’s all calculated, it’s all done in the most energy efficient way. I really have my very own energy crisis.

During the third year’s  second semester I met my boyfriend Tomer, through facebook, the “R U Interested?” application.

When I met Tomer I was in relatively better situation, pain wise,  in the first months of the relationship. Since the beginning I told him about the fibro. As time went by I explained more and more about what it means and how I feel and how much I hurt.

Tomer and I at a Soccer Game

Tomer and I at a Soccer Game

At first the pain didn’t really restrict us in any special way. We managed to go on a weekend in the dead sea,  go see some Soccer games, visit a lot of friends and family and more fun things for “him and her”

He always helped me with the dishes and organizing, and anything I asked for around the house. He accepted me with all the pain and always takes care of me. He can hear over the phone in my voice how hard my day was and how bad my pain is.

Tomer and I just met at the same time he got himself a new game and a new playstation. The game is Guitar Hero. You actually get to play a band with guitars, drums and a mic. I happily joined in on the guitar hero fun and my main job was to be the Drummer. Our band was called “Fibro Fun” (a sarcastic name of course). It was fun and also a bit like therapy. The drums work my back (because I have to sit straight), my hands mostly and also my right leg (which works the bass). At first I felt the drums were strengthening me. But, after a few months I couldn’t play the drums anymore, due to the pain, and I moved on to being lead singer. Despite my name which means singing in Hebrew, I’m not very good at the actual act. I really enjoy singing even if all my band mates end up deaf. So I don’t really know how to sing but to succeed at the game all I need to do is match the intonation to what is show in the game, and I can manage that.


During the summer of 2009 my sister and brother in law offered me a full time or almost full time job. It was really exciting because I really enjoyed working with them and I was glad they were please with my work and wanted me to do more. I immediately started working hard and managed to work maybe two days for about 6 hours straight each. The excitement, stress and physical overload crushed me. After a couple of weeks I had to stop working. My hands hurt so bad and still do that it is hard for me to write and work on the computer while concentrating at the same time. It was very hard for me to takea break from HRD. I enjoyed working there so much and it is always so interesting learing from Morit and Yakov (my bosses). Since that flare up I haven’t been able to go back to work. I hope with all my heart that after school I can go back.

During school I know there is no way I can work. I can barely get all my school work done because of the pain and mostly because of the difficulty to concentrate they cause.

And so, finally at last my final year at school (really, this is the last one).  An exciting event, that still worries me because I never know how I will handle the challenges  I face in combination with the pain.

If you look at my grades since I was inflicted with fibro, up until the end of the third year, you can see a gradual decrease which I feel is caused by the pain. Because my hands hurt so badly, it is very hard from to write with a pen or a pencil. I prefer the computer because typing is easier and faster than writing.

Everyone who knew me suggested I ask for some additional time or some other kind of help for the tests. For two years I withheld from doing that because I didn’t want to deal with the bureaucracy. Also, the only help I knew I could get was extra time. For me extra time meant torture. I felt like they don’t have a way of helping me. In the second semester of last year I may have passed all my tests with the first try but the grades were very low. I knew they would be low because most of my energy during the test went to working my hands and not working my brain. It was very hard to concentrate or think.

This previous first semester of my final year I enlisted in four classes. I realized it couldn’t hurt if I tried to get some help, and maybe they do have a way of helping. I contacted the Dean of Students office. There I talked to Maya Pankar that explained to me what the process is with the medical board and when I should expect to get an answer. The first answer I got was “extra time”.  At first I got scared because for it’s a punishment. I started to feel a little helpless. I went back to Maya and she explained I can appeal and ask to use a laptop in the exams. She explained I have to write a letter and specify why extra time won’t help me and why a computer would. I wrote the letter and got a positive response a couple of weeks later.

I was happy but I wasn’t sure who actually gives me the laptop to use for the test (it has to have only word and excel on it, no internet). Because Yifat was always so nice (the head administrator in the Dept. of Management) I called her and asked. She explain the Dean of students take care of that too. I went back and got Yeela Piterberg who explained really nicely what I need to do and how the whole computer thing works.

I go to her before each test and she gives me a laptop and a portable printer. Luckily I have a good friend, Omri, who comes to help me with each test. Just carrying all the equipment and hooking it up to power would have exhausted me towards the test. Omri helped me carry, hook up and unhook everything. The ladies who watch us during the test and make sure we don’t cheat realized I had a physical limitation and were very nice to me. The last test season that ended a couple of months ago went by much better with grades above 80.

I know it’s long but please click through to part four

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Responses

  1. Wow! I can so relate…I am 36 and have lived all my life with fibro…I dont know what its like not to have a flare up… cause everyday is pretty bad fo me. I hope you will find comfort and thank you so much for your story….very touching.
    Mary


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