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Chronic Fatigue Syndrome
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Posted 5/13/2006 10:51 PM (GMT -8)

Hi, im new to this forum, but i really needed somewhere to go and talk to other people who know exactly what im going through. my family and friends are great but even then they dont understand the extent at which i suffer. In terms of how bad my cfs is it could be worse but still, its a horrible thing to have regardless of how bad it is. Im 16 and ive probably had cfs for  just over a year and a half.. i didnt know until the end of last year. i was always "sick" like on teh weekends i would just crash and i never wanted to go out and if i did i would pay for at least 2 days and i would have to stay in bed or on the couch. When i got diagnosed i suppose it all made sense why i had all the funny little symptoms i did and why my marks at school were suffering a little. im just really upset at the moment being a teenager and not being able to hang with your friends. i have good days and when i do i try and go out and be 'normal' but my normal isnt what everyone elses is. What frustrates me the most is that sometimes i just can't concentrate and i can't apply myself to school work, and i try SOOOO hard but i just can't do it. Im a good student and it makes me so upset to let my teachers and parents down. but mainly  i suppose i feel like im letting myself down. Anyway i was hoping i could chat to a few people who understood that feeling and that i could get a bit more support from...

Thankyou

Elise

xo

Posted 5/14/2006 5:03 AM (GMT -8)
Hi Elise and welcome to HealingWell. I'm so sorry you have to deal with all of this at such a young age. It must be really hard not to be able to do the normal teenage kinds of things. My illnesses all started when I got mono when I was 18. I was a senior in high school and was really never the same after that, but at least I was healthy most of my teenage years.

It is really hard for other people to understand just how bad cfs is and how much people suffer from it. I'm giving you a link to a page on a website called butyoudontlooksick.com. There is a thing called the Spoon Theory and it is a great way to describe to family and friends what it is like to deal with chronic illness everyday. It is written by a woman who has lupus, but it can apply to any chronic illness. I printed out several copies of it and gave it to my family and close friends. Here's the link (I couldn't figure out how to make it clickable, so you'll have to copy and paste it):

http://www.butyoudontlooksick.com/2006/02/the_spoon_theory.php#more

Please try not to be too hard on yourself, but I know it's easier said than done. I'm hard on myself too and feel like I am letting my kids, family, and friends down.

I'm glad you joined. Hang in there and feel free to ask any questions or just vent if you are having a bad day. We are here to listen and we do understand what it is like to live with cfs.

Take care
Posted 5/14/2006 9:40 PM (GMT -8)

Hello, and sorry to hear you don't feel well.  Let me tell you a little about myself before I say anything.  I'm 23 and I got CFS at 19.  When I was 19 I felt exactly the same as you. (still do at times)  I've always been bright and pretty athletic most of my life, so everyone always expected so much from me.( Teachers, coaches, friends, parents) Then out of the blue, I stoped preforming at the level I did before.  Especially the concentration and physical ability. All I can say to you is to read the link given to you above and show people.  The ones who love you and care about you might not understand at first, but they will.  Be proactive, be as healthy as you can, that always helps me.  Eventually you will learn how to deal with this illness.  Just remember you have an illness, the illness doesnt have you.  Even though its really hard to, be as positive as you can.  Remember your not alone, there are many of us going through the same struggles and you can get through them too. I wish you the best, and I encourage you to keep asking if you have questions because people on this forum are nice and many people know alot of different resources.  Take care.

Johnny

Posted 5/19/2006 9:13 AM (GMT -8)
Don't know if this will help or not, but feel free to read my blog

www.myspace.com/fallenangel311

The blog titled "Please read!!! (Understanding...)"

You're not alone, and it is quite frustrating. I've had CFS since I was 14 or 15 years old, but didn't get diagnosed until this past February. Take comfort in knowing you KNOW what's wrong... and learn how to live your life again. No matter what, keep your chin up. No matter how dark the skies are, or how many clouds there are,... the sun is still shining. The more aggravated you get with what you can't do, the more you're missing out on what you CAN do.

Hope that helped ;) And if you need anything, feel free to email me or something ;)
Posted 5/20/2006 5:01 PM (GMT -8)
Thankyou all for your words of advice... All of it has helped. Thankyou!! I will be back and updating you and asking questions soon!. Thankyou all so much

Elise

xoxox

Posted 5/21/2006 4:55 AM (GMT -8)
Hello. An old lady grandma here but unfortunately I developed CFS when I was 20 and pregnant with my first child.
It has never disappeared completely but I can go for a year or more sometimes leading a fairly normal life.
I have found that North American or Siberian Ginseng give me a bit more energy when I am at the bottom of the pile. Chinese ginseng is not as good at it.
Learn to pace your life. If you have exams plan on doing nothing too strenuous while you are studying for that dreaded week.
Always get out and get some fresh air each day. Even if it is just taking a lawn chair out and sitting outside for a bit. Or walking to the end of the driveway or around the block.
Fresh air is wonderful. My grandmother used to tell me to get outside and blow the stink away well I don't know about the stink but it sure does help blow the cobwebs out of the brain.
I know it is a hard thing to accept but once you do accept you are sick, you will start to feel better about yourself. You will be able to say no to things since you will know that you will crash if you don't.
pamper yourself as much as you can and when you can't pace yourself.
Don't dump on yourself as others will do that very well for you so you don't have to.
When you get down in the dumps figure out something that you really want to do and do it. Don't care about the consequences. If you crash then you will have the good feeling of having done something you wanted or have accomplished.
Live life to the fullest you can make it.
Grandma advise there. as well as friendly advice from one who has been there and still is.
Posted 5/21/2006 2:02 PM (GMT -8)
faye, thanks so much for the wonderful advice. There are some things I don't do because I know I will crash and then there are some things worth doing even if I am going to crash. If there is something I would truly regret not doing, I try to find a way to do it if at all possible.
Posted 5/27/2006 7:16 AM (GMT -8)
I feel bad for you...but hey, Im only 14 and I got have what you have...accompanied by light headedness. If just the light headedness was gone I would be fine, but nooooo...
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