Recently diagnosed with ME anyone under 25 in the same boat??

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So I can’t really go into detail with my story or symptoms because I’ve apparently already done far too much and I’m feeling pretty awful. 

But I’m waiting for a referral to see a specialist about being diagnosed with ME I’m twenty years of age and recently given up my education at university to move home in the hope I’ll get a hold on the condition and be well enough to return next year. I’ve read and researched so much over the past few months in order to feel more normal and frankly less alone. My family don’t and can’t understand what I’m going through, what my day to day life is now like .. so it’s a blessing to have you all here going through the same and being able to comment and relate to. I don’t have a problem with anyone responding or commenting below! The more the merrier. But I’m particularly looking for anyone under the age of 25/30 as I’ve not seen many and I’d really like to have someone to talk to closer to my own age smile 

Many thanks 

Meg. 20. Cornwall

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  • Posted

    Meg I am so sorry to hear this.  Please keep hopeful of recovery, I personally know seven people who have had ME and have either completely or substantially recovered.  All seven spent time bed bound.  Two of the seven now rely on maintaining a high level of fitness (can you imagine that???) to stay well.  All seven lead full and happy lives, even if some of them have to live a different kind of life than they might have expected (but nevertheless have families and jobs/businesses).  My sincerest wish is that people close to you can gain some education and comprehend your situation. Anyone who has ever in their life had the flu should be able to understand what it feels like to be weak as a kitten.  I have been told a copy of the DVD Unrest makes a great gift for family.  Personally I have not yet been brave enough to view it.  I am sure you will find friends of your own age through this site or good social media support sites. 

      

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    • Posted

      Thank you for your response Catherine, I too wish for my family and friends to be understanding .. there’s nothing worse than feeling alone in this. 
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    • Posted

      Hi Catherine. Any recommendations or regimens on how they recovered? Did they also have chronic epstein barr virus like me? I may have had mine too long (27 years)for antivirals to work, but I'm giving it a try now . 4 months into it. Sleep is my number 1 help where i feel the closest to feeling almost normal but still feel the "in a different world" feeling all the time, perhaps the encephalitis part. And I also will do too much on those days and have to crash. Thanks for any advice.

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    • Posted

      Let me think. 

      Friend one got sick in his thirties and was bed bound for three months.  I met him in his late fifties and did not know he has ME.  He is super fit.  If he gets stressed, it comes back and he has to stop everything for a day or two. Diet helped him recover, he did a full elimination diet to find his triggers.  Exercise keeps him well.

      Friend two got sick in her twenties, she was a really high achiever. She and her husband came down with a stomach bug and while he bounced back within days, it was the start of ME for her. Yoga was one of the turning points for her, once she could get out of bed, though once she recovered she never did it again.  After six years she had recovered enough to feel life was good, even if it wasn't the life she had had previous to the illness.  She's now in her fifties and the ME is back after she had two concussions a year apart.  Pacing is really important for her now.  

      Friend three tried everything going to recover, but thinks it was just time that made the difference.  She is another exceptionally hard working person who has had to slow down.  I am not sure what she feels keeps her well, I must ask her.

      Friend four recovered in five years.  She was (again!) a super busy high achiever with two young children.  She said just living moment to moment, day to day and focusing on the good things helped her through.

      As I write this and think about my friends, I can see they are all very giving people.  

      Friend five recovered after thirty years (in as much as she leads a normal life).  She's in her sixties.  She tried many things but credits a good therapist as making the biggest difference to her recovery. 

      Friend six is in her early 80's and was ill for some years in her youth after burning out.  She recovered slowly with rest and pacing. 

      My best friend, friend seven,  has just turned fifty.  She was hospitalized a number of times in her 20s due to ME.  She got it after trying to go back to work too soon after the flu.  She really struggled with pacing so fought and fought it.  Macrobiotics helped her, but not until she has recovered enough to actually cook.  

      Pacing is the one common factor! 

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  • Posted

    I have recovered my ME although every day is a pacing day. Also google Michael Crawford, he was famous for his comedy stunts in Some Mother's Do Ave Em and later as a singer in the West End and Las Vegas. He is recovered but he did the same as me and stopped doing everything, in his case he moved to New Zealand. I got a diagnosis from a specialist but that was it, I sorted myself out. 

    It involved pacing and learning to say NO. The later being very important. I used cycling as my exercise, first starting indoors and later into the road. It was a very,very slow progress with quite a few relapses. 

    You have to ignore what other people think and say and concentrate on doing what you have to do. Eventually you will prove them all wrong. There is no magic cure as suggested in one month by another post. We all wish there was 

    Best of luck 

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    • Posted

      Thank you for tour response smile I have too found it best to do things for myself and not rely on anyone whether that be the understanding of my friends and family or the medical recommendations from

      My gp and medical progressionals. The later (learning to say no) is what I hate the most.. I’ve always been so very independent.. have broken my ankle a few years ago now, I was off work for 6 weeks and even that was torture. I need to be up and doing things for myself.. when the symptoms first hit me I was working 30 hours a week as a nursery nurse, studying at university for roughly 12 hours a a week and working out in any time I had spare .. so naturally my body was exhausted.. but it’s how I enjoy living my life. I’m 20 years old and in theory, I won’t be this fit and healthyrolleyes forever .. I watched a very inspiration video on YouTube last night. Her name is Jennifer brea. Such an inspiration and opened my eyes so much. One day we’ll have a cure .. but for now, we must do everything in our power to best it ourselves. And well done for doing just that! 

      Meg x 

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  • Posted

    Hi Meg, I'm 22 and from Cornwall too and have been diagnosed with CFS/ME for just under 3 years now. I too had to give up university and am now living at home trying to recover. I've felt very isolated too as I've not seen any one else our age with the condition, but my mum was searching online and found your discussion thread! If you want to chat more just let me know! I hope you get a referral soon to see a specialist, the process can be really long, I remember when I was waiting for an appointment it seemed like years. I always find that during the darker months my CFS is so much worse, just can't wait for spring/summer when its warmer and I can spend more time outside as at the moment it is too cold and wet and I just sleep all day and am in constant pain sad 

    I'm really glad I find someone else my own age that understands the condition, hope we can talk again!

    SJ 

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    • Posted

      Hi Sarah, wow that’s crazy. Not too much in age and from the same county! I’m definitely hoping to be referred soon, though it feels like forever since I started my journey I don’t feel I’ve waited half as long as everyone else.. I’ve read a lot of stories and heard a lot about people journeys.. some waiting 8-12 years before they were even diagnosed .. 😫 couldn’t bare the thought of waiting that long.. most bad days are worse just from the stress of not knowing.. not knowing what I’m going to wake up feeling tomorrow, how much I’m going to be able to do.. will I have time to nap if I eee to? Then there’s my job, my education and my friends I left behind .. all wanting answers ‘are you coming back?’ ‘For definite?’ Answers?! I don’t even have answers myself .. so frustrating. It would be great to talk with you about it! I’m sure we’ve been through a lot of the same already.. and we might even have some friends in common. 

      I look forward to hearing from you. 

      Meg x 

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  • Posted

    Hello meg

    How are you doing? Hopefully a little better from this post :-) 

    Im 28 years old and it had took me 9 years to be diagnosed with CFS. All i got off docs family friends literally i knew what people thought oh shes moaning again ? What hurts now ? 

    But when i finally got diagnosed i knew i had to try and accept that this is me ( by the way iv not fully accepted as i always think when im mad and low what if it isnt) , i cant change anything only listen to my body and i know im so lucky to still be able to work and be a mum to my son so i just carry on majority of days i struggle i have odd couple days where i wake up and im thinking oh yes i feel good today go meet a friend or grab extra shift at work then within couple hours i feel like im being drugged people will never understand this illness untill they themselves have gone threw the dreaded days we have . Hope your ok 

    Take care x

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    • Posted

      It's a hard road Zoe and I am so glad that you can accept yourself for what you are.  Acceptance doesn't mean nothing will change, whereas denial means nothing CAN change. Some people will never be able to understand, but others will take the time to learn, and a few special people simply have empathy.  I hope more people around you will gain compassion.  Wishing you the best.

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    • Posted

      Im near enough there just some days im like damn you silly illness why cant they be something to show someone lol with having CFS its made me want to do something so people are more aware of what their loved ones are going threw. And for people who have nobody like who do they turn to as id be lost without the help of my mum grandad and sister and even my 9 year old nos more about this than alot of adults will :-)  i dont know its a lonely one in its self due to no actual visibility x
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    • Posted

      Hi Zoe, thank you so much for your reply. 

      Though it’s taken me 45 minutes to just read it( I’m yet to find a way of concentrating on anything that’s not moving on the screen.. I can watch tv or a film fine but not read anything without the pressure in my eyes and the words scrambling around the screen) 

      I’m grateful nether the less. My parents as we speak are watching a video on our condition, I have faith. But I have since moved out of my mothers house, it’s not her fault she doesn’t understand but I can’t be under the same roof as something who doesn’t understand and expects me to get up daily and be my usual self .. it’s difficult for her and I wish I didn’t have to out her through this .. but it’s just as hard if not harder for me .. 😩 

      I very much question whether it is ME on a good day too.. but then on a bad day I’m well aware it’s ME.. it’s so hard. But I’m a lot more hopefully today. Thanks to all of you who are helping me feel normal and less alone xxxx

      Meg 

      Take care 

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    • Posted

      Hiya. 

      Its hard for us to understand mind anyone else. It really is frustrating but nothing we can do.

      I am the same with reading oh its torture i can watch tv most of the time but sometimes i cant do any on a bad day i get angry as i cant concentrate :-/

      If youv moved out of ur mums does this mean u live alone and having to cope ‘on ur own’ :-(

      Me and my mum have had numerous arguments threw my illness but i understand her side too as if this was my child poorly every day or every other it must be so frustrating not being able to do anything for your kids :-) xxx

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    • Posted

      Hi Zoe, 

      Have been experiencing pressure behind my eyes excessively for the past few days .. every time I try to concentrate on even the tv I’m sytuggling to ignore the pain.. admittedly it’s all I’ve been able to do recently as I’m too exhausted to move .. don’t know what else to do or try I’m really at a disappointing stage of my diagnosis ..( as if it weren’t disappointing enough) any reccommendations from anyone?? 

      I’ve moved out of my mums house and into my uni dads wher  he lives with his girlfriend, I am not alone they are easily coming to understand my condition faster than my mum. Whom I’ve spoken to and smoothed things over with today.. 

      thank you for your response and care once again 

      Meg xxx

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    • Posted

      Hiya 

      Thats great that ur family are getting more understandable of ur illness :-) you will get there. Im having more ok days than usual but i really think its because iv slowed down alot more and listen to my body when i feel like im getting tired. 

      Get netflix on and watch a film thats what i do :-)  i no its hard with the concentration tho xx take care 

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