I have CFS and it sucks!

It feels so unfair to be so young and ill. The good news is that you're young and ill.(which means that even tho it feels really unfair to be so young with CFS/ME, the fact that you're so young is very much in your favor! You have a good chance of recovering). Knowing that you have CFS is something I wish I knew at that age but didn't, so I wasn't equipped. (I thought all my life I was just strange or lazy so I would take care of myself and start to feel better and then went back to pushing myself). There was no internet at that time, tho I had a grandfather who was a naprapath/chiropractor and somehow he always really helped me get back on my feet but I still didn't know what I was dealing with. I'm 61 now and just was recently diagnosed. Grandpa has been gone for 20 years and I'm much older now so it's a whole different ballgame.  But because I have finally been diagnosed I am able to say "OK! So I'm not just strange or lazy!" And I've been doing the most research I've ever done in my life and I practice whatever works. Even if it works just a little. You can do that too! CFS/ME forces you to become very tuned-in to your body. You'll learn what you can do and you'll become very familiar with how to respect the signals that your body is giving you. Focus on what you can do. Try to minimize crashing as much as possible but be kind to yourself if you crash. Scour the internet for RECOVERY stories and get ideas and slowly implement whatever helps. Body work can be really helpful (massage, acupuncture, reflexology, chiropractic). Meditation can be crucial. Don't count on recovery being linear. It's very much like a roller coaster for a while. Eliminate any foods and late night activities that are stimulating so your system can "rest and digest" and your adrenals can heal. This didn't happen overnight. My grandpa always said "It took time for your body to get sick, it takes time for your body to heal."

Hi aries

Sorry to hear you are enduring all this. It is hard enough being 15 without this wretched disease devastating your body and life .Im much older than you and have had ME for 22yrs. Lol longer than you have been on this planet. Gosh i really am old !!

I won't go on about all my own issues with ME. I have been housebound for years. I do know how people drop you though. When I had to leave work (paediatric nurse) it was as if I fell off the face of the earth. People get on with their lives while you feel like your',s has become static even stopped completely. The world carries on rushing around you whilst you sit unable to participate. I only have one true friend from work who still is in regular contact. We chat on phone most days. She is chronic illness issues too and we try to help each other .

I can relate to your age group though. I was ill for 7 yrs from around age 13. Was housebound and even bed bound bound for a while. It is horrible I know. One classmate took it upon herself to visit me each week after a while. It was really sweet of her. Although I think her mother had encouraged her. It can't have been easy for her. If lasted a few months then it gradually dropped off to nothing.

Something you must never think is that you are a burden on others. You are certainly not. It is not your fault you are unwell. And feeling bad about yourself is not helpful towards your hopeful improvement and even more hopeful eventual recovery. The way you handle things in the early years can make a world of difference to your eventual outcome. The stress caused by people dismissing you is not worth wasting your already depleted energy on. They may be uninformed and ignorant of the facts.You can attempt to educate them but it often falls on deaf ears. Not your problem but their's if they don't want to know.

Even if some of us here are ancient compared to your age group, we all do have a mutual understanding of what it is like to live with this disease.. So never feel you are alone. I have a friend of many years I met in a fishkeeping forum of all places, years ago. She also has chronic health issues so again we have a lot in common and chat weekly on phone and keep in touch online too. There are lots of groups on Facebook where you can meet many people in similar situations to yourself. From that I have made some lovely online friends. Unfortunately there are less decent people too. ! The written word is very powerful. And things are easily misconstrued.

Wishing you feeling better before too long. Hang in there, take it steady , don't feel guilty and stay as positive as you can. Never feel you are being selfish either. If is self preservation. Take care x

I just spent over half an hour responding to aries. It contained nothing disallowed yet has not posted. I usually copy just incase . On this occasion not. If really isn't fair. We are unwell people for goodness sake admin. I can't even remember most of what I wrote and do not have the energy to write it again.

Hi there,

Sorry to hear your having a tough time after diagnosis but just want to say don't give up hope of a recovery.

My daughter was 13 when she was diagnosed and like yourself had to give up school. Her friends gave up on her and she became isolated as her illness progressed to severe where she was bedridden and lay in a darkened room with no energy to talk or eat.

It hasn't been easy it's been two steps forward one step back continuously and was only well enough to get her first job at 21.

Now she is 22 and set off to backpack around Australia on her own and she's loving it.

She knows the signs of when she needs to rest more and may get a little more exhausted than others but this hasn't stopped her living life to the full.

She is now fulfilling the dreams she had when she was bedridden. She has sky dived, dived in the Great Barrier Reef, drove a 4x4 car on safari and been whale watching to name but a few activities she's done this year so far.

So good luck to you don't give up hope as I never thought my daughter would be able to do what she is doing now following her dreams to see the world after being confined to four walls.

Best Wishes x

Hi Aries, I’m also older and have been diagnosed with this for about 7 years. I really feel for you. It’s very very difficult for people to understand what’s going on inside our bodies and our mush minds when we look well. I’m having an episode with my CFS now and even after all this time my family doesn’t get it. And I hate that I’m tired all day and can’t sleep at night. I’m still experimenting with foods to help me feel better. But when I crash, I crash. I agree that it totally sucks. But hang in there sweetie. You WILL have better days.