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Re: Teen with CFS?
Jun 11, 2016

I am also a teen. I don't know who you are, if you've actually even got CFS, or if you will read my reply- but I want to help you. I know what's it like- not knowing.

Over four years of the doctors not being able to diagnose my symptoms and being named a 'strange anomaly' by various consultants finally ended when my illness (I knew nothing about it- only knew I'd become so sad over it that I was SERIOSULY depressed) was named CFS eight months ago.

Anyway, I'll tell you about my story first...

In school, I'd been one of the most intelligent people in my class; I was the high-flier who, though not popular, pretty or athletic, was known for her wit and wisdom. Perfect grades, Perfect attendance, perfect attitude. Now, I struggle to work in class, have a 60% attendence (probably less), fall asleep during school and sometimes when I'm working I forget how to spell my own name.

I also had many friends that I'd often meet up with and play with during school. Needless to say, they stopped being friends with me long ago when I missed over half a school year and came back looking like death incarnate.

Besides this, I was a star water polo player- a girl training with teenage boys and adults! Every training session was like a bootcamp- brutal and exhausting... I loved it all! I cried when I reluctantly made the decision to quit. The team wanted me to play and my parents objected my decision despite my strange illness coming back (not yet diagnosed) but we all know there was no way I could play when one week I had moved down to help with the five year old swimming group and I almost collapsed in the shallow water after doing only a width. I told everyone I'd only be gone for a short while "recovery time, ya know?". That was eight months ago.

You're probably wondering how the doctors cracked the puzzle which is me, right? A group of unathletic girls and I were doing athletics up on the track. We all hated running, and that morning it was really cold for summer (lol I live in the UK) so the air was more difficult to breathe in whilst sprinting. Despite this, I'm a good runner (and remember this is the point where I thought I was healed and healthy many months ago) so I wasn't worried when my teacher said we were being timed to do 400m.

When it's my turn, I start running at a good pace- but I notice I feel really nauseous like I'm gonna be sick. I can't breathe properly,I'm not running fast, my legs are failing, my head hurts and.... 300m in I bend over and start choking. I'm stubborn though as always and I'm nearly there- I can see all my classmates and teachers at the finish line. So I run faster, despite feeling like I'm going into cardiac arrest. As soon as I pass the line, I realise that I failed to hear the time of my run that the teacher called out. I look over and her lips are moving but all I can hear is the rushing of blood in my head, the throbbing of my entire body, my heart beating too loudly and everything's painful. I think I choked out a "Miss, I don't feel well" before I keeled over, vision going black.

I was out for about three seconds and I open to my eyes to feeling like I'm having a heart attack and not being able to breathe. The teachers escorted me back to the changing room where they left me because I thought I was fine, when I promptly fainted again. My mum came to pick me up and she had to carry me to the car to go to the doctors. At the doctors, they were worried so they referred me to a paediatrician who I would later meet. I spent the next week and a half at home, not moving and barely speaking. If I had to sit up, I got out of breath. It took me over ten minutes and multiple crying fits every time I needed to reach the top of the stairs. I still have some weeks where I'm like that now.

September rolled around, bringing with it an amazing paediatrician who turned out to have been my old one from four years ago who I had stopped seeing when everyone thought I was better. He recognised it for what it was immediately because he'd known me several years and with my more profound symptoms I could explain ,ore easily what I was feeling. I was referred to a therapist on a special team that helps young people with CFS at the local hospital. I also received a doctors note, excusing me from all physical education at school and if I ever need out of class becuase it's too much I have a room where I can study or rest on my own in.

I see my therapist every six weeks and she is an angel. Straight away, she helped me. You see, there are some things I have figure out from having CFS: one- it's chronic, so you're in it for the long run which means you gonna need to learn to live with it, two- there's no medical cures to ease it, so you have to learn other methods to not flare your illness up and three- just because you're ill doesn't mean you can't live your life.

Frankly, CFS is a pain and if I could ever get rid of it, I wouldn't even hesitate. But being chronically exhausted and in pain does have negative affects on your body, so you have to learn to work with your fatigue. There's this thing called "boom and bust": it means if you're having a good day, don't go and exert all your energy because you have more that day (if you do you'll feel even worse later), but instead save some for later so you can use it when you really need it. Also, don't hesitate to just stop and take a breather.

Here's some tips that my therapist has really helped me with. (Whether you have CFS or not this is gonna help, so listen up..)

--Always eat breakfast. That sounds stupid, I know, it's so basics and simple but oh boy does it work. I know you might need to get to school or go somewhere and you might be late but you always need to have breakfast. You need that energy and if you deprive yourself of that, you're making your CFS worse.

--Sleeping properly. For a lot of people suffering with CFS, sleeping is a MAJOR issue. For some they can never stop sleeping, others they can't sleep and some have both. The point is, often people with CFS have crap sleeping schedules. Falling asleep during the day, getting to sleep at God knows when. Hell, I'm typing up this response at God knows when because I can only sleep when the sun comes up now. (I'm still working on this part- managing CFS is a slow, gradual process). Anyway, every night go to sleep at say 22:00 and every morning wake up at 6:00. This way you have a proper body clock and you'll feel a bit better.

-- that brings me to my next point: EMOTIONAL MANAGEMENT. That sounds crap and you may not believe me when I say that physical exertion isn't the only thing that can cause a 'flare' ( a bit like when you training caused you to get ill again). Emotions can get you exhausted. Excitement, anger, anxiety, sadness- anything that's strong will drain you completely. Every year at Christmas for example, I come down with a really bad flu and my CFS flares becuase I get excited so my immune system is low. This also applies to getting stressed out or angry- you need to calm down, drink some tea, watch TV or something to help you relax. It is not good to tire yourself out. Another good tip is don't think your not going to get better. Negative thoughts in this case, literally do wreak havoc in your body.

And now, loving life when life has screwed you over...

Don't let chronic fatigue rule your life. You said you were feeling pretty blue about not training right? Then don't stop. Learn how to manage it, know what makes you worse, write down what helps and what doesn't, remember to just stop sometimes. You need to learn your limits before you push yourself too hard. Go out with family and walk for 10 minutes and if you're too tired stop in a cafe. If you can go further, try. But always rest. Don't overdo yourself. Maybe you could go watch training- participate in the bits you can, rest when you want. Have fun! you can't let this bring you down. A month ago, I went away for a week in Spain on a Spanish exchange trip where I had to walk everywhere, do everything, I was constantly tired and excited. It hurt like hell. Sometimes I couldn't breathe when walking around the city. The doctors were so worried I'd overdo myself. And do you know what? I don't regret a second of it. I wanted to do the trip so I did it. I'm paying for it still, but I loved it. You can't hesitate to do the stuff you love, be with the people you love becuase of CFS.

But also, if you don't want to do it becuase you'll get real,y tired and you honestly really really really don't want to do it; don't. You are ill. Don't try to act like you're okay all the time, eventually the mask will crack.

Perhaps most importantly, remember that you're gonna have dark days (I might sound positive, I've spent half my day depressed and crying) but it gets better. You might feel like the whole world is against you, that no one understands how you feel. A bad day, bumping into a rude person, running out of your favourite cereal- it can end up with sleepless nights, endless pain and horrible exhaustion. But eventually there will be a time where you'll get better and you will have learned to manage your CFS. Until that time, keep going. You're doing great and you're stronger than you know.

I hope I've helped. Thanks, Hannah. Xx

{p.s I'll mention some other symptoms that I forgot to mention: headaches, achey joints and muscles, extreme fatigue, bad appetite, dizziness, sore throat, difficulty controlling body temperature, bad concentration, stomach problems, Balance issues, depression, panic attacks, sleeping issues, cold extremities, sensitivity to certain lights, sounds, smells and foods, painful lymph nodes etc.}

If you feel you can relate, just holler.

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