Frustration to its fullest

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kisses_from_cat
Regular Member


Date Joined Sep 2006
Total Posts : 36
   Posted 10/2/2006 12:38 PM (GMT -7)   
Hey guys.
I'm feeling so frustrated and alone right now.  I'm seventeen, and well i have never been formally diagnosed with CFS but i feel as if that is whats wrong with me.  I've went for so many tests a few years ago..and everything came back negative.  I get tired really easily all the time, but the severe fatigue comes in spurts.  Afew months i'll be ok and all my symptoms are manageable but then a few months the symptoms will be severe.  It's difficult for me, because I am in grade 12 and have dreams of becoming a doctor myself one day. And when the symptoms become severe, i can't focus in school. i come home and im just exhausted.  I collapse to my bed and im not able to do any homework or study.  So i guess... a rush of reality kinda hit me when i realized there is no way i can make it through med school if i am still suffering from this.  this is my fourth year suffering from this.  some years are worse than others.  I really need and want to go to the doctors. but this is where the frustration comes in to play.  I asked my mother to take me to the doctors. and she refused.  therefore, i cant miss school to go ..and i have no way to go.  My own family doesnt even understand what Im going through. I'm in bed almost 24/7.  Im struggling with school and work.  and its like they don't even notice.  I don't know what to do to help myself.  Is there anyway at all i can make myself feel better on my own?  Its just so frustrating that no one really understands hwo you feel. and u can't really blame them..because i know that if u've never experienced this fatigue you wouldnt really understand.  Any suggestions would be helpful.  i really want to put this illness behind me.  I've looked into Adrenal fatigue as well. but the thing is.. my symptoms will turn severe all of a sudden with no warnings signs, it has no relation to when i am stressed or not. The whole experience is just horrible.  I don't know what to do with myself.  its just so.....frustrating
 
Cat<3
 

ruggedtoast
Regular Member


Date Joined Apr 2006
Total Posts : 44
   Posted 10/2/2006 2:37 PM (GMT -7)   
Hi, sorry to hear about your problems. It sounds like you have a lot going on and are getting quite overwhelmed with it all on top oh having poor health.

I'm concerned about what you said about your parents. Is it possible they dont really understand how sick you feel? Can you tell us more about why your parents wont let you see a doctor and what happens when you ask them to? Im in the UK and over here your legal guardians arent allowed to deny you medical care, I cant imagine the States would be different.

If it really is a problem you should have a word with a teacher you trust or your school nurse who should be able to arrange for you to see a doctor independently of your parents. If nothing else if the school is aware of your health problems they may be able to make specal arrangements for you regarding exams and coursework.

Post Edited (ruggedtoast) : 10/2/2006 3:40:49 PM (GMT-6)


shami86
Regular Member


Date Joined Sep 2006
Total Posts : 128
   Posted 10/3/2006 9:24 PM (GMT -7)   
you need to be tested for Lyme

Shami

kisses_from_cat
Regular Member


Date Joined Sep 2006
Total Posts : 36
   Posted 10/4/2006 12:30 PM (GMT -7)   
Yah.. my parents deffinately don't understand what im going through..and can i really blame them? it's hard to describe how awful u feel right. They'll always say comments like "oh you're not too tired to go on the computer .. but you're too tired to clean your room". I dunno...maybe they think i'm making it up but why would i make something like that up for 4 years! Like i'm out of ideas right now. Im breaking down. I mean, if i told my teachers or principals with how im feeling...they'll probably just think im overreacting like everyone else. and i doubt any of them would do anything without a diagnosis.
I guess i just have to learn to except the way my life is, but i dont know if i can. I know what i'm capable of without this stupid illness. It's so unfair. I was so healthy--> I ate good food, exercised a lot, laughed. I was a good person. i don't understand why this is happening to me. Why me? do u guys ever ask yourself that?
Cat<3

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/4/2006 1:58 PM (GMT -7)   
Cat, I'm really sorry this happening to you and that you don't have any support. I really wish your parents would at least let you go to the doctor and get a physical with some bloodwork done to see if anything shows up. I would think they would know it's not normal for a teenager to stay in bed as much as you are and to not go out and do much.

I understand your hesitation to talk to school personnel, but is there a school nurse or even a school counselor who might be more understanding than a teacher or principal?

As far as the "why me?" question, yes, I have asked that many times, but I know I'll never have an answer.

I wish there was more I could do for you. It must be really frustrating to want help, but to not have it. Take care and know that we are here for you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain;

 

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Tru
Regular Member


Date Joined Sep 2006
Total Posts : 116
   Posted 10/6/2006 12:10 PM (GMT -7)   
Cat, I can relate to you, and you are not alone. When I was in High School I went through the same thing that you are going through. I couldn't concentrate and I had trouble remembering what I studied. I was always tired too.

I'm now 28 soon to be 29. I refuse to listen to doctors, because all these years no doctor has helped me yet. I do my own research, and I'm helping myself. If I have to do it all by myself I will.

My family said the same things about me...and I'm sure that they still are. This illness is not loud it's quiet and to other we look normal and we act normal. What make things worst it that they want us to look like hell and act like hell all the time and if we don't then we can't be sick...but that is not how this illness work. Sometimes I get energy and I don't know where it came from.

I'm always on the computer too, but most of the time I'm doing research. My quest to find out what was wrong with me started with my hair. My hair wasn't acting right...and I didn't realize it until I came across my pictures as a little girl. My hair was shiny, and it looked soft as opposed to looking dull and coarse but feeling soft. I stayed on the computer for hours on a hair forums and the web researching hair problems etc. My family thought...and thinks that I'm obsessed with my hair, but I'm not.

Now, I'm realizing what could be wrong and I'm not leaving it alone until I fix it or manage it.

I said that my quest started with my hair, because at that time I was older enough to figure things out without parents. When I was your age my hair was dull, and I had many other symptoms but doctors always treated the symptoms and not the problem. Today, I still have all those symptoms. I've always believed that my condition was hormonal (even when I was younger than you), but doctors always told me that it wasn't...that's why I refuse to listen to them now. My intuition was always good...I just knew that it was hormonal...I just know.

What I meant by "this illness is not loud it's quiet" is that if we where vomiting all the time and turning colors etc, then doctors would take notice and would not dismiss us.

Post Edited (Tru) : 10/6/2006 1:17:37 PM (GMT-6)


ruggedtoast
Regular Member


Date Joined Apr 2006
Total Posts : 44
   Posted 10/9/2006 3:41 PM (GMT -7)   
Its really difficult to get across how tough life is with the cfs to non sufferers. I found that if I wasnt reminding people all the time I was sick then they'd presume I felt was better, but then when i did remind them they thought I was complaining and making a meal about it.

I felt like pulling my hair out sometimes when my wife was messy and left stuff out because it was such a big overextension of my limited energy reserves to do extra chores and it would have been so minimal to her just to put them away herself but I could just never really explain it and she always thought I was nagging her or overreacting.

Im continuing to improve on the paroxetine and have just started to feel able to do limited exercise again.

johnnyboy
Regular Member


Date Joined Mar 2006
Total Posts : 51
   Posted 10/11/2006 3:54 AM (GMT -7)   
Cat, I'm 23 and got CFS around 18. So I know exactly how you feel. It's very hard, especially since nobody really understands how hard it is. Just keep on trying new things, different people get different results. What I had to do is use my energy only for important things (which is super hard at 17) and I try not to fight it to much. I grew up playing many sports and it was very natural for me to want to fight through the fatigue. Sometimes that is not the best way for everyone. Take it easy and never stop looking for things that may help.

P.S. You CAN finish med school! It might take you longer then most, but don't give up your dream.

I hope you feel better.

-Johnny
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