Discussion in 'Fibromyalgia Main Forum' started by LizzyBell93, Nov 11, 2009.

  1. LizzyBell93

    LizzyBell93 New Member

    no insurance=minimal meds=pain fatigue and depression

    Its hard to have FMS and CFS at the age of 16 in case any of you were wondering. I have to be at school at 6am and I leave at 4:30pm. At home I do chores, homework, play with my 3 year old nephew, and try to have some time to myself to recover from the long day. Last week I was wimpy and didnt go to school for 2 1/2 days I missed some tests and quizzes which are now made up but not put into the gradebook therefore I have 3 F's so this weekend there will be a freshmen competing in my sophmore spot, the spot that I worked for my entire freshmen year and summer and the beginning of my sophmore year. I have lost it. On top of that there are the usual teenage social problems and family life. I'm really having a hard time sticking this one out I feel so alone. I wrote a poem the other day it explains how I'm feeling.

    So much potential bottled up

    hiding deep inside of me

    My tears drown this coffee cup

    as I sit in agony

    This body has failed my very dreams

    The things I loved

    like joining the Marines

    So I gave up on life

    now all I do is cry

    I may have even used a knife

    but I'm not gonna die.
  2. AuntTammie

    AuntTammie New Member

    Oh sweetie, my heart really goes out to you. I cannot even imagine trying to do all that you are doing with these darn illnesses. I could not do it, and I have no idea how you are managing....and it is extra sad that you are so young.

    Does you family understand at all? Is there any way that you could get them to cut you a little slack on the chores and/or any way that you could be home schooled? I realize that home schooling would mean missing out on seeing friends and sports (when you said your sophomore spot, I assumed you mean a sport?), so it is not necessarily ideal.

    I also know that, in general, homeschooling is done with a parent and yours might not be able to do it, but at your age I do know that there are correspondence types of home school courses. I don't know the particulars, and I know that homeschooling requirements vary greatly from state to state, but that might be something to look into.

    At the very least, could you talk to anyone at your school regarding working something out if you have to miss a few days again, so that you won't lose your spot? (Although, if you are doing really badly, competing might not really be the best idea anyway. I am sure this is not what you want to hear, and as someone who started running when I was 11 and did so for many, many yrs.....and has only stopped bc of being really sick, I do understand.....but I also know that I learned the hard way that pushing and pushing does not work with these illnesses.)

    And, speaking of talking to someone, is there anyone you can talk to in person about how you are feeling emotionally? These boards are great, but when things are really bad, having a live person there can really help. I am worried about you. The poem is a great way to get feelings out and it is well written, and i can relate to much of it......but the reference to giving up on life and using a knife is concerning. (I do understand that cutting is not suicidal behavior, but it can get out of hand easily and the depression can lead to suicidal behavior eventually if it goes unchecked.) I know you said, no insurance, but there are sliding scale and even free clinics or school counseling or even telephone hot lines. Do you fel like you are safe at this point? It sounds like you are, but it is easy to hide how serious something is. If you are completely honest about it, do you feel like you are safe? If not, or if it gets to the point, is there someone you trust to talk to about it?

    Please do not give up hope. Being young with this sucks, but it is also an advantage in that you have a better chance of seeing a cure or at least good treatments while you are still young enough to be able to really enjoy life afterward. I know that might not sound like much rt now, but I hope it gives you some hope. And, I am glad that you had the courage to post this here.

  3. gb66

    gb66 Well-Known Member

    I'm sorry you're having such a difficult time and feeling so discouraged.
    I have CFS/FM now but when I was in high school I had a severe case of mono and was out for an entire semester.

    When I returned to school the next term, the dean of my school worked with me to make it easier for me to get through the days. I was very weak for over a year after the mono.

    They let me have all my classes on the first floor to avoid climbing stairs and also, after lunch every day, I was allowed to go to the school infirmary and lie down for an hour and just rest. This got me through the year. I could not have done it otherwise.

    Perhaps they can help you find ways to cut back on activities so that you can continue to attend your classes. Good luck and let us know how you do. GB66
  4. hannahfaid

    hannahfaid New Member

    babygirl I am so sorry you are having all this at such a young age... is there a way you can have classes at home?? I know its so hard getting up and trying to get going on a schedule.. It sucks ! then u have a lot of things at home do your mom and dad support you? is this something u push yourself to do at home even when ur beat??
    I didnt really read the others' replies but I hope you know that we are always here A bunch of insomniacs and homebodies.. I am very lucky to be able to have my own business and do what I can when I can
    we love you we support you.. anytime day or night we are always here!!
    love and hugs
  5. misskoji

    misskoji Member

    Aunt Tammie and everyone else here has given you wonderful advice. I don't have much to add, but I'll try.

    I just feel so badly for you and worry that continuing school and chores, ect. will only cause your health to deteriorate more. Being so young and ill...I cannot imagine. But you are strong, stronger than you know. You seem very mature and intelligent, never short change yourself. You are a beautiful person with a purpose here. I know it's easier said than done, but put those self-doubts aside and know you are a great person.

    Here in Minnesota there is a school that is totally online, and it's a public program, it costs nothing. Is there anything available like that to you there?

    I am considering putting my son in that program, but right now he wants to continue trying regular school. He is 14 and I fear he has these illnesses as well. Right now we have no Dx for him, but he has many symptoms. Thankfully, he is not as severe but I fear that too.

    If you're having problems with your school understanding, perhaps it would help to present them with Dr. Bell's CFSAC testimony where he talks of this very thing...children with CFS who cannot attend school. Print out articles and send them in.

    Do you have a doctor who stands behind you and is supportive? He or she should be able to help you talk to your school and make them realize your health is important and your condition is real.

    Many hugs girl

  6. AuntTammie

    AuntTammie New Member

    I certainly don't want to add more to your already crazy schedule, but please let us know that you are ok (I know, obviously you're not, based on what you wrote, but I think you know what I ok as possible)
  7. LizzyBell93

    LizzyBell93 New Member

    I guess I should have added a few more things. My mom also has FMS and CFS we are struggling through this together. My parents are divorced and I dont see my dad very often so he still doesnt quite understand it. (starting to get a little personal but...) my mom and her significant other struggle to keep us living under a roof they lost their job when GM shut down last December we are going off of unemployment and a little bit of under the table cash. My mom is trying to take online college courses. My dad i struggling worse and also has no insurance. With all of this we can not do any kind of homeschooling. I am going to try to talk to my guidence counceler about getting help though. I dont get to talk to my doctor much because without medical insurance it costs an arm and a leg to go see him but he has been very considerant in our money issues. My mom is doing all she can to find a way to get our medicine she is a very strong willed and hard working person for not having a job. I believe in her, we believe in eachother and thats what gets us though the day.

    Health Update: I hurt so bad today I tried to mke myself go to school but I couldnt. So yet another missedday of school.
  8. AuntTammie

    AuntTammie New Member

    It sounds like a really tough situation, but I am so glad that your mom understands. I am also happy that you are going to try to talk to your guidance counselor. There are definitely sources of assistance out there; hopefully he/she will be able to connect you to some, and/or be or find someone you can talk to. I understand the marine type of mentality somewhat, having a very close friend who was in the marines, so I get it if it is hard for you to ask for help....but with these illnesses, we can use all the support we can get, and asking for help takes a certain type of strength of its own. (If you don't have trouble asking, then just disregard that.)

    Anyway, I will keep you in my prayers (and your mom, too), and I really hope that you can find some solutions that bring you a bit of reassurance and hope. And, please keep us updated when you can.
  9. ladybugmandy

    ladybugmandy Member

    how can anyone go to school with CFS AND FM? that is insane!!!! there must be part time options or home tutoring you are eligible for. i am sure i have heard of parents fighting for that for this disability and winning.

    if you are 16 and your brain fog isnt too bad, you should check into online courses as suggested above. you should NOT be worsening your condition with all that stress and traveling and trying to socialize!!!

    in a few years, they will have great meds for the condition and you can catch up with school then. in the long run, you will be better off!!

    you arent supposed to push yourself at all. it worsens the condition and spreads the infection.

  10. ilovepink4

    ilovepink4 Member

    there is a law that states that all students have the right to an equal matter what type of disablility they have

    Your school district HAS to provide you with an education....they have to work with your need to have your parents talk to the principal and request a meeting....then a plan will be made for you...a plan that is individual to you....

    it could include going to school for a shorter day, or less days per week, or going to a different type of school in the district that caters to kids who can't attend regular school (due to pregnancy, poor attendance, etc...), or they will provide you will an at home tutor...

    In Minnesota, kids are put on a plan called an IEP....those are for kids with a disablility....maybe this would fit....

    if you have a short term problem like a broken leg, you might get on a plan called a covers kids with less severe problems....even like a kid who might be transgender and needs to use a private restroom....or locker accomodates your needs...

    get your school administrator involved....this could solve everything...they WANT you in school somehow....the districts need the funding to function so they want as many students enrolled....

    if your school won't work with you, call legal advocacy or a legal advocate for the disabled...they can help you for free to force your school district to meet your needs....

    Now, go get 'em !!!!

  11. LizzyBell93

    LizzyBell93 New Member

    Thanks ladybugmandy but I'ma fighter not a quitter born and raised thats why I'm posting on this board in the first place.

    ilovepink4 thanks for the good advice I will try that.

    At this point I'm searching for options, once I have found all the options I can find i will explore them ferther and eventually come to a conclusion as to what I am going to do. I have talked to the following: my parents, my teachers, my counciler, and a truency officer at my school. My parents are behind me 100% they will be helping me with my final decision. My counciler wasn't much help she said all she could tell me to do is talk to my individual teachers for help nd mabey get me a tutor (costs money). The truency officer gave me brochures for online schooling I have not yet looked at them very much. I'm still researching other possibilities. I'm going to get a letter from my doctor to all of my teachers explaining y situation to see if that helps for now. This may be a life changing decision I have to make and I'm almost glad it happened to me and not somebody else because at least I won't let FMS and CFS win like some people might.
  12. AuntTammie

    AuntTammie New Member

    Thanks for letting us know how things are going....too bad that your counselor wasn't more of a help....what ilovepink suggested re getting your administrator involved may be the next step (and the rest of what she wrote is very true, too.....they HAVE to work with you)

    I am so very happy that your parents are supportive. It's important to have them in your corner, esp at your age. The letter from your Dr is a good idea, too. Make sure you keep a copy for yourself and get one to the counselor and administrator, too (in addition to, as you already said, giving it to your teachers).

    I am glad to "hear" your fighting spirit, but I would caution you again that there is a very fine line between not giving up (giving up altogether is the only way you would be "letting FM and CFS win") and learning when you need to slow down. If you pace yourself, it can make it possible to do a lot more than if you fight these illnesses with everything you have. Ironically, fighting too hard actually helps them to win. Learning when to back off and give yourself a break takes strength, too. It's a really tough balance to figure out. Personally, like I've said before, I found that out the hard way. You can do it, though. Your posts show your courage, strength, and determination shining thru.
  13. AuntTammie

    AuntTammie New Member

    I would be very very cautious about this possibility. Though some people do have positive results with them, many do not, and so many of us with ME/CFS react very badly to meds (worse depression, worse CFS symptoms, weight gain, bad side effects, etc). When you are young, there is also something about the way that the body processes antidepressants that often increases the risk for suicide (hence the black box warning on antidepressants that is usually aimed at anyone under 24....not sure exactly how they determine that cut off age, but it is there with good reason - antidepressants have been shown to cause worsening depression in many people, but esp in teens and young adults)
  14. gapsych

    gapsych New Member

    You are getting some good advice.

    Aunt Tammie is right about some of us not being able to tolerate ADs. however, I wish they had them when I was your age.

    The important thing is to get an evaluation by a good psychiatrist. Maybe find one by talking to other people, your PCP. If you call ask the receptionist what kind of treatments they do,how you will be monitored which is a biggie, etc. Just remember psychiatrist are not therapist.

    While it is great that you are going to be strong sometimes being strong means that you are going to do whatever it takes to get well. For some people that may be ADs or pain medication but the main thing is to become informed. It sounds like you are doing this.

    Is there a support group where you live? These can be very helpful as well as this board.

    Ilovepink4 also had some good advice as well as others.

    Take care.