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They call this youth...

Posted , 5 users are following.

amycathy
amycathy

I turn 19 at the end of this month, and my idea of a 'night out' is sat in front of the sofa with a few friends watching films with hot chocolate and popcorn. The fact that it's at another friends house classes it as a night out. I will be home by 10, 11 at the latest. If I stay out any longer, I'll suffer within the next couple of days and it will take me weeks to get back on my feet again.

It’s reached the point where I’ve got to make compromises I’m not willing to make. Do I see my friends and actually have some form of social life, or do I sleep? Do I say I can do so many hour at work and potentially let them down? Or do I just not commit myself and save the disappointment? Do I sleep all day and maybe feel better tomorrow? Or do I go for a walk and potentially regret it?

These are choices that I shouldn’t have to be making. Most of the time, my choice is sleep because I don’t have the energy to do much else. When I feel better, I get a bit excited and I go overboard...  then I sleep.

I’m a teenager. I shouldn’t be held back by these things. I should be able to have a night out on the town - not that I drink anyway - but just to be social. If I do that, then it’s likely I won’t be able to work for a good few days, maybe even a week. It’s an endless cycle that I can’t escape. It’s been 4 years; something needs to change. 

1 like, 10 replies

10 Replies

  • lauren1992
    lauren1992 amycathy

    Posted

    Hi Amy,

    I completely relate to what you're saying. I'm 22 and was diagnosed during Uni when I was 20. I don't go on nights out or spend much time with friends, I don't drink because it's like toxic to my body and makes me very ill. If I do spend time out with friends or whatever, I suffer terribly from it.

    I'm qualified as a nurse but I've actually been signed off at the moment as my GP feels I may have had another relapse, which I also suffered from in July. Things are hard at the moment and it's hard to find people who fully understand. That's why these forums are good - people have had different experiences with this condition and it's helpful to explore all the different options you have got. I hope you start to find some answers on here, if you have any question for me, don't hesitate to ask.

    Lauren x

    • amycathy
      amycathy lauren1992

      Posted

      Thank you so much for your response. As horrible as it may sound, it's really comforting to know that there is someone else who struggles with social stuff. I feel like some of my friends don't really understand.

      I hate feeling like I regret spending time with them, but I do, because I feel do terrible after. 

      Wow, you must have worked seriously hard.. And it is hard to find people who understand; it's even difficult trying to explain things to my family. I hope you start feeling better again, and no more relapses... we need good nurses who understand people smile I'm here if you ever need to talk...

  • JulieBadger
    JulieBadger amycathy

    Posted

    Your night out sounds lovely to me.  But then I never was much of a night clubber.  It sounds like you've got yourself in a boom and bust cycle (I am very good at it).  You bust and sleep all day and then boom and try to catch up with all your friends and work.  Not greatrolleyes it can be done short term but doesn't really achieve much long term.  It needs to be done when there is something special that you need/want to attend but not a balanced way forward and really hard on your emotions.  You get the high when joining in (and trying to feel 'normal' for your age) but then the really low all on your own in bed, especially for a whole day. 

    My personal recommendation is not having such long rest periods.  The idea of pacing which is what they recommend for us is to rest before we drop - this I personally find hard cos if I haven't dropped I want to do things, cos I can right then.  However, they compare it to a mobile phone battery.  If you use it a bit, then recharge it, then you can quickly start using the energy again.  However, if you run the phone battery down until it is flat then you have to wait longer until it charges enough to use it again and then it will quickly run out again unless you wait longer for it to chrage from flat (maybe a whole day in bed?)

    I personally feel emotionally more depressed if I let people down and feel pressure if I now I need to be well enough for something.  I would recommend not putting yourself forward for more work because they can get more cross at you letting them down cos they have to rush around suddenly to find someone to do the job at little notice.  When it comes to firends things I would say 'I'd really like to come but can I let you know on the day if I have enough energy?' I would also not stay for the whole time out with your friends.  If I had the energy on the I would go but only stay for 2 hours.  Then I hopefully be able to go to more (cos I'm pacing myself), yeah I wouldn't stay as long but I would see them more often. 

    In terms of extra work could you ring them on the day to see if they need you when you know you have the energy?

    Good luck 

    • amycathy
      amycathy JulieBadger

      Posted

      Yeah I've been trying to pace myself, I just need to really focus on it more I think; and try not to go completely overboard when I feel okay.

      Thank you for your reply, you have no idea how useful that has been. 

    • JulieBadger
      JulieBadger amycathy

      Posted

      My pleasure.They say if you get it young and do the resting you have a higher chance of getting it under control, maybe even almost disappearing?  Don't know if it's true, but wouldn't it be worth doing the resting/pacing if it is?  Wish I had, mine wasn't disgnosed when I was young (14) so I didn't do the recommended stuff.  I still have it at 37 and they say it won't go now cos I've had it too long. So I advise doing loads of research and try to work out how to get rid of it.  Your friends now are great but most of them won't be around as your friends in 20 years time.  ME/CFS could be if you don't work out how to calm it down.  It will affect your future family and work life.  If possible try to think of the future and how you could improve it if that means reducing your social situation now, it might just be worth it in the long run.  However, don't cut-off all your social time now or you will feel depressed and too lonely.  It's that hard thing of striking a balance. Good Luck from someone who's been there x
  • tiara416
    tiara416 amycathy

    Posted

    Hi Amy. My name is Jewel and im 22 years old. Ive been battling with this terrible illness for 4 years since i was 18. My whole young adult period has been layin in bed in different pains no fun no hanging out. Just like you i never could get the energy for it. Or i was always in pain or just emotionally and mentally tired thinking of all I would have to do to even begin getting ready.

    This is not fair! You are absolutely right. Its torture. I just want to get better so i can hang out once in a while. I haven't been on a date since my bday in April. O man and thats even worse guys dont seem to understand that im tired all the time or hurting. They might think im lying or lazy. Its just so frustrating. So i stay to myself. Even tho I would like a boyfriend. Anyways feel free to inbox me anytime or email me. take care and hold on! Your definitely not going through this alone.

    Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service .

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • olivia3636
    olivia3636 amycathy

    Posted

    Hi Amy, my name is Oliva. I'm 19 and I've been sick for 6 years. I have never encountered another female my age with the same problems as me. This is actually really exciting to me. Maybe if you want to contact me. I literally feel the SAME exact way as you. My family doesn't fully understand and just stresses me out more. I don't feel like I get the support I need in the mental and emotional well. Anyway, I would love to hear your story and everything you've been through. Perhaps we could learn something from each other. It's not fun to have your youth stolen away from. We will never get it back and never get to experience it. Very sad thought. I've never known what it's like to be a teenager. My Mom and I fought about me going to school and hanging it with friends when I was in high school. Just about being sick. Anwyay, like I said, I would really love to hear from you and just talk to someone else in the same situation. 

    Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service .

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • olivia3636
    olivia3636 amycathy

    Posted

    Hi Amy, my name is Olivia. I'm 19 and I've been sick for 6 years. I honestly have the same EXACT problems as you do. I feel the same way about it. If not having probably really similiar symptoms. My friends and family do not fully understand and only end up making me more stressed out, which makes me worse. I'm really interested in hearing more about what you've done and your symptoms in general. If you want to share, just private message me because we're not allowed to publically share email addresses. Anyway, hope to hear from you and that you get better. 
    • amycathy
      amycathy olivia3636

      Posted

      Thank you for your reply my dear, I've sent you a private message. It would be nice to hear from you, I too would find it comforting to talk to someone else in the same situation as me.
  • Kristy21
    Kristy21 amycathy

    Posted

    Hi Amy,

    I saw your post and have to say I feel completely the same! The thought of going 'out out' and having to decide on an outfit and bother with any makeup just drains me before I've even started.

    I'm 21 and have only been diagnosed within the last few weeks after seeing a specialist, before that i've been back and forth to the doctors and had more blood tests than I ever believed possible...

    It's nice to know that there are other people my age that suffer too. I just want some form of a normal life back!

    For me, the worst symptom (apart from constant exhaustion) is the pain - my leg's and hips feel as though i've been beaten!! I've started a low carb diet this week as have read that this can help with the condition. I've also been prescribed medication to help and am in the process of arranging CBT therapy.

    If you have any advice it would be great to hear back...

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