I don’t know what to do for the best ?

Teenagers NEED extra hours of sleep even if not dealing with the confusing symptoms of CFS/CE.

Most (almost all) doctors do not understand the syndrome (caused by a virus that can't be detected by generalized blood tests) nor how to treat the symptoms since there is currently no cure available. Your parents, friends, etc. have no idea how devastating on your body, mind, and emotional struggle you face every minute of every day.

I spent most of the first 2 yrs. in bed and cut off from interacting with anybody, including family who couldn't understand why I couldn't "JUST" follow their "advice" for feeling better or acting "normal". No offered treatments that supposedly has been effective works. Those offering treatments, even doctors, are only going to give false hope and an empty wallet for their "cures".

Learning how to live with your disease by pacing your activities and resting after EVERY type of exertion (mental or physical) is part of the solution.

Finding drugs that help you wake up mentally (such as Aderral) in the morning can help but must be carefully administered and never overdosed because it feels so much better than being brain-dead can't be overstated. Mostly, you need to be in charge of stress factors. Avoid stress like an enemy. Also, get your parents to read what others who suffer with CFS/ME are saying about how they deal or are not dealing with the absolutely lonely, painful, and misunderstood reality you and they live with every day AND night. Their advice is NOT what you need. Try experimenting with dosages of Aderral from 10-20 mg. in the morning, See how you feel. Then add 10 mg. in the early afternoon so it won't keep you up at night. Some light pain meds like Tramadol help with the body aches and headaches (Tylenol won't help).

Most of all see a good psychologist who has experience working with people with chronic pain or long term illnesses. Find strategies for taking rest times after activities, and don't let anybody tell you how you "should" feel. Keep talking to fellow sufferers for coping skills.

Hi Anya,

what you are describing it extremely common to be on the receiving end of - family and friends that don't understand.

It is very hard for anyone to understand where we are coming from because it so so complex and overwhelming for us and them to be honest. It not easy to watch a loved one go through what we are going through. Having said that we are not there to support them in this! We need them to support us!

I find it a huge problem to fall asleep at the "normal" time, and can take hours to fall asleep, and as you say have to sleep in longer the next day to make up for a lack of sleep earlier in the night. It is a very common symptom.

You are right arguing isn't the way to go.

It will drain you emotionally and physically.

My suggestion would be to write down what you want them to know.

And try and describe it as best you can - it may take you a while to get it right.

Then read form headings so when you tell them, you have the headings to remind you what you want to say.

I wouldn't hand them a piece of paper detailing it, as what we write can be taken in different ways whereas spoken word isn't so easily mistaken.

All the very best.

This is NOT an easy journey we are on and need some kind of support around us.

We didn't ask for this not do we want it.

Take care

Hugs