HELP...no one understands

Discussion in 'Fibromyalgia Main Forum' started by addie_dunn, Mar 15, 2007.

  1. addie_dunn

    addie_dunn New Member

    Hi I am new here. I have cfs, I was diagosed last year but I think Ive actually had it since I was 18 (Im 24 now). I remember being 16 and full of life and then I have mono at 17, and since then Ive been tired. Ive been able to manage through college (Go Big BLue PSU). Ive fallen asleep in class or had to miss to sleep or because I am frequently sick, but my professors had been cool about it and no one said anything. I made good grades and graduated thisclose to with honors (darn calculus class freshman year!). My parents were pretty supportive about me being tired and sick all the time, I mean they did accuse me of being lazy at times, but they knew that I was overworked and stressed. It has only become a major problem now. I am currently in nursing school and I frequently doze off in class. I used to drink coffee to stay awake but Ive also developed kidney stones and can't do that any more. So about a week ago I feel asleep during a guest speaker and my instructor called me into her office to talk to me about it. She was totally not understanding. I explained to her that I have cfs and there is very little I can do. They turn out the lights and turn the heat up, and unfortunately that is prime for sleeping. She told me that I have to stand in the back of the class if I am starting to doze off. I am in shock and embarrassed. There are 14 people in my class and they already rag on me for dozing off. This is to me singling me out. Believe me I know that it is wrong to sleep in class and its very disrespectful, and Im not using cfs as an excuse. I have asked repeatedly to keep the lights on or the blinds open. I dont want them to make special circumstances for me and I dont know a solution, but I just want some support or an acknowledgment of understanding! We learn about how to therapeutically communicate with patients, how about with each other! The other problem arises from my roommate. She is one of my classmates. According to her I am lazy and all that other stuff people say about us. She does not believe that I have this or that it even exists.

    So ultimately, my questions are: what works for you all to stay awake? How do you deal with ignorant people?

    And thank you for being here, this is the first time Ive felt like people get what I have to deal with!
  2. Shalala

    Shalala New Member

    I am so sorry to hear you are going through all of this at such a young age (I am 53). I have FMS. I do not have your problem (falling asleep in class) but I sure have plenty of ignorant people to deal with ... lol. The hardest to deal with is my family. They could care less about me or my health. Other ignorant people I just try to laugh and move on. They are not worth wasting any of my time or what little energy I have on them. You are in a whole different period of life though. Have you found any support groups or talked to a counselor? It may help you to deal with people. I would get a note from your DR to give to your teachers. Good luck :)
  3. Elisa

    Elisa Member

    I can't imagine having cfs and going to school...it must be very hard.

    Anyway there are two things that come to mind...I believe CFS is a disability - as is any disabiling medical condition. Because of that you would be protected under the ADA - Americans With Disabilties Act. Thus, it may be a good idea to locate your disability advocate at your school - explain your circumstances and that way insure that this professor won't negatively bias your grade or performance because of a medical disability. After all this professor may be doing this to others too. In addition, they may have you speak with a counselor, par for the course with you have a fatiguing illness. The counseling dept or your physician can write a note to vouch for your circumstances. Either way I would think you need to protect yourself - because standing up in class is not the answer, is tiring and unfair and inappropriate for someone with cfs.

    Think of your self as an advocate for yourself and others with this illness!

    GOOD LUCK,

    Elisabeth
    [This Message was Edited on 03/15/2007]
    [This Message was Edited on 03/15/2007]
    [This Message was Edited on 03/15/2007]
  4. clerty

    clerty New Member

    It is terrible yes some kind of letter would be good
    it is about time we got some respect no one knows the battle we have to get up in the mornings they dont see us
    when we are bed ridden or pacing the bedroom at 3 am in pain.

    They need to be educated lol!!! honestly support is what you need.

    good luck
    Clertyx
  5. Febricula

    Febricula New Member

    I agree with the above commenters that you should find the disability office at your school and talk to them. I used to teach and students would go through the office in order to get extensions on assignments, etc., and it was never a problem for me. In fact, the student disabilities office never even told me what the specific disabilities were that the students suffered from ... I think this has to do with medical privacy.

    Also, I think you should pat yourself on the back for managing to get your degree and now attend nursing school when you're suffering from such a difficult illness! If you were really lazy, as your rooommate thinks, you wouldn't be pushing yourself so hard to get through a challenging program despite your health limitations.

    I'm sorry that even in a medical environment you're encountering people who don't believe in CFS. From what I've seen, most nurses think CFS is a malingerer's disease, unfortunately. Very frustrating!

    good luck getting disability accommodation
    -febricula[This Message was Edited on 03/16/2007]