I have CFS and it sucks!

Posted , 12 users are following.

Hi there! I'm 15 and I've been diagnosed with CFS it's really really horrible because I haven't been able to attend school for the past year and I love school (I know weird right!) I also love individual sport which I also haven't been able to continue with in my state but the worst thing isn't the constant pain of sickness I feel everyday it's having your friends forget you even exist. I can't get out much because I never feel well enough so that means I have to rely on my friends to come and see me and every time I ask they shut me down and say that they're busy but it's always the same exuse - I have school work to do but you wouldn't know what that's like because you don't even come . I feel as if I am a burden on people for something I can't control if anyone can relate give me a shout because I could do with some friends who understand how awful it is sad none of that probably made any sense but it's nice to get it out in the open

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  • Posted

    It's very sad to hear that someone so young is having the same experience as me--and I'm way way older than you. I wish I had words of wisdom. Us older types are supposed to have that, right? I've found that people, including many of my closest friends, just don't get it. I even once wrote an email to several friends describing what it's like to live with ME/CFS. They still didn't get it. The best understanding you'll get is from people going through the same thing, like those on this forum. So keep posting here. Also, I cope with this illness by focusing on whatever I can do on a given day, and not thinking about all the things I can no longer do. That just makes me too sad. As you've maybe already learned, it's not good to push. So I do quiet things like read, listen to music, and watch movies. 

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    • Posted

      Thank you very much for your lovely words I really appreciate the support here I hope we can help each other out in the future x
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  • Posted

    So sorry you’re stuck at home , I know how sad it can make you feel . Take heart that many many teenagers who get this condition make a full recovery. Look at your diet and get out int the sunshine when you can . Get a good naturopath to help you on this road , take care 😉

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  • Posted

    I was diagnosed at 17, however was and still am a video gamer so i always spoke to my friends online. Two big things, however harsh this is, a friend is not a friend if they do not support you through hard times. If they simply do not believe your current state and think you're just being lazy or crying, show them this https://emerge.org.au/ good for raising attention. Inform them of the diseases real name and the severity of it.

    I think in events like these you begin understanding the basis of friendship and who is/is not your actual friend. Take it as a good life lesson and learning curve, find the positives in the negative. I was told that i could not go to school because i had severe fatigue, chronic diarrhea, GERD, night sweats, insomnia and was severely underweight yet i came out of Y12 with an ATAR of 96 and am currently studying a double degree in Phys and Commerce. The message i am trying to get is don't let things hold you back, remember you are the most important person here, not your friends. Focus on yourself, friends come second in my opinion.

    The more you share your experience the more people understand, try many ways to explain it. Some people are ignorant and i just tend to disprove them until they get angry because i find an odd satisfaction in, it stems from me never complaining and trying to make everything out as if it is fine, so people feel as if i'm and just a sook or lazy but in the end you know what is right.

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    • Posted

      Good comment! Social media is the greatest thing for me! I actually prefer it more then actual visits becuz they exhaust me! The talking. I cant even talk on the phone for long. Ive recently dissolved a friendship because she always stopped by to tell me oh i could get better by taking this or that and that i was just unhappy. Then she had the nerve to tell me i probably wouldnt get disability! Well i knew the difficulty but didnt need to hear negative stuff from er as i was scared shitless as it was!!! So i just deleted her from Facebook and never return her texts or calls. I did get disability so i dont need any toxic people! Its all moving up from here on. Lol, well trying at least. I think i have gotten better then 2 years ago.

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    • Posted

      Well shoot. I said the s*** word and my whole story is being modified. Isnt there a way to get it back to fix?? Ugh!!
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    • Posted

      You are so right also coming through this my friends have messed me around and have not been good friends and if it comes down to it I would rather have no friends than bad friends 
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  • Posted

    Hi Aries,

    How frustrating that your friends aren't being supportive right now. It's hard when you can see them getting on as normal and you need to rest. However, not having the school pushing you to attend is a bonus. I can only imagine how boring it might feel having to rest so much when you were so active with sport before. Do you still contact your friends on social media? I know it's not the same as seeing them in real life but can keep communication open for when you can all get together again.

    Beverley

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    • Posted

      Hi Beverly, God the boredom is so bad especially having been an active person in the past I'm very restless a lot of the time although being tired it's just the sitting around and doing nothing isn't fun for me I've been going on a lot of chat rooms and things like that recently which is nice because you get to meet lots of new people! Lots of my friends don't actually talk to me but I always find a way to start a conversation going smile 

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    • Posted

      Hi Aries,

      Yes-can identify with that! Having to rest and feel so ill when very active before is something a lot of people have with this condition. I used to be really active too, did alot of walking etc takes some adjusting to.

      The body is a wonderful and also strange thing! I get restless legs sometimes when the rest of me is just totally exhausted! Or my mind is ok but i can hardly move or my brain is mush but physically i don't feel as bad. I try not to question it too much. I saw a muscular skeletal specialist on monday and we talked about the sympathetic and para sympathetic nervous system. It's all very interesting just my brain was starting to fizz by the end smile

      Sounds like the chat rooms are a good idea and widens your friendship circle.

      Beverley

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    • Posted

      Hi there

      I never feel bored. frustrated yes. I think with Me/CFS it is frustratration rather than boredom. We don't have the luxury of feeling well enough to be bored x

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  • Posted

    That is so tough.  I am really sorry to hear about your cfs and I can definitely relate.  My daughter got cfs when she was 15.  She was unable to attend school, homeschool, read a book, use a computer, play her guitar, do kung fu.  She has just turned 17 and even though just a couple of months ago she was seriously unwell, she is now doing great.  It really does suck and it feels like it lasts forever at the time, but you WILL recover.   
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  • Posted

    I hear ya! Sometimes i wonder if they may be afraid of catching something. Heck i guess we could offer masks if they are that paranoid. I mean it is a mysterious illness and i do wonder why members in the same famiy can get it sometimes. Luckily my children are healthy so far. Best of luck. Have you tried antivirals? Ive heard they can help some if it started with an illness.
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    • Posted

      Hi Tracy, hmm maybe we should give out masks (just in case ) smile but yeah people get weird about it sometimes like they will catch it if they touch me it's really odd if I'm honest, maybe it has something to do with genetics? Or maybe it's just a random lottery of CFS haha! I haven't tried antiviral s  it may be an option in the future though thank you very much best of luck to you too smile

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    • Posted

      Funny you say about fear of catching something Tracey . I was ill for seven years from around 13yrs old. Never went to school at all from that age. Housebound, even bed bound for a while. My mother once saw a group of girls from my class in the street. One of them asked if it was catching . Tends to be the first thing even a lot adults ask let alone children .
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