Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Reason to live?!

Discussion in 'General ME/CFS Discussion' started by notmyself, Mar 1, 2017.

  1. notmyself

    notmyself Senior Member

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    I wassant sure till today that i have cfs..i was still hoping is something else,i was keep lying to myself..i make a CPET test today with one of the few doctors in my country that have any knowledge about this illness..and after checking all my other tests and symptoms plus the CPET test result he concluded that i have cfs..a mild one..My question is ..Do mild cases have a better chance of recovery?..i had been sick for one year or maybe a little more without realising..Do i have a chance to recover..becuase i refuse this life..even if i want to keep going i cannot work ..so how i will be able to buy the stuff i need..i am to young for this..i am 25..i don t have wife or kids or anything..there is no one to take care of me beside my mother..but i don t want to live a disabled ..i jsut can't..there is a real chance to recover from this???.or should i end my misery
     
  2. Keela Too

    Keela Too Sally Burch

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    I think the milder you are the better the chance of recovery, from the stories I've heard.

    I also think treatments are being researched more determinedly right now, so it should not be long until there are more treatment options than currently.

    I agree it is a shocking diagnosis, and it makes the future look uncertain, but things can and do change, so for a while be kind to yourself. Take one week at a time, and give your body and mind space peace to heal itself.

    Think of this period like careful financial budgeting - for now you are on a restricted income, but that does not necessarily mean things will stay that way always.

    xx
     
  3. Cheesus

    Cheesus Senior Member

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    I haven't seen any evidence that is the case, unfortunately. In fact the studies I have seen do not find any correlation between severity and recovery (source).

    Having said that, I do not think that means @notmyself has any reason at all to lose hope. There are people on this forum who have been ill for decades, but people who are only getting ill now are very unlikely to share that fate. Over the next 2 to 3 years we will likely make huge leaps in our understanding of the disease and possibly have effective treatment options. Our current best evidence indicates that there is no permanent damage, so the condition is likely reversible.

    In the meantime, probably one of the best things to do for increasing your chances of a natural remission is to not push yourself. So many people on this forum pushed themselves too hard in early stages (despite what the psychobabbler psychiatrists will tell you), and it hampered their chances of making decent gains.
     
    Last edited: Mar 1, 2017
  4. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    What cheezus said, added to the fact that you only live once, so one might as well stick around and end up a motivational story.
     
  5. Dainty

    Dainty Senior Member

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    I was 13 when I got a "mild" case of CFS and MCS. I was a gymnast with a shot at the Olympics. I was a singer and dancer, who was doing a 6 week singing tour across the west coast of the US, doing 1-2 concerts daily. Vivacious, outgoing, I had my whole life ahead of me.

    I had one summer of remission at age 16. This allowed me to finally get caught up on my schoolwork for the first time in years, as I hadn't had the energy to concentrate. But that fall, I became sick again with various infections, and before I turned 17 I was mostly bedridden, in severe agony every day. Within 6 months I was fighting for my life, the only food i could eat was the stuff they put in feeding tubes, and my MCS meant I could barely breathe and was constantly on the brink of death.

    I lived this way for YEARS on end. My mom was my primary caregiver, and our relationship was fairly fraught.

    I tell you this because:
    • When I was mostly bedridden and roombound, I still made lasting, deep friendships online.
    • I took several years to do it, but at the age of 23 I finally graduated high school from self-taught schooling online, taking my time.
    • I gradually got well enough to escape an abusive environment, living on the streets in a van.
    • I met the love of my life.
    I now live without symptoms most of the time, so long as I live carefully and do not overdo.

    I am not yet well enough to be fully independent, but my boyfriend genuinely doesn't mind taking care of me. There is no resentment, no power imbalance, He does not think any less of me for it.

    I am well enough to work a few odd jobs. This only started last year! I am so excited to gradually begin making enough to support myself. Very slowly. I keep living expenses very low, so that I do not need to earn as much to survive. Currently my boyfriend cannot work either, and yet we somehow make it through.

    I've never been happier in my entire life than I am right now. I'm 27, nearly 28.

    I know it can seem hopeless. I've been there. And I just want to say - YES - there is life while disabled. It is different. But different is still worth living.

    I never got to be the athlete that I dreamed of. I don't have enough energy to sing enough to train my voice. Dancing is a rare luxury I can't do enough to get good at.

    BUT....

    When I do my yoga-like, slow dancing stretches at my local community center, dozens of people stop and stare in awe at the performance art I unwittingly create. I've actually become known for it in my local community. My boyfriend loves it when I sing, even when my voice isn't warmed up. And when we hit the dance floor together - I need him to hang onto me at all times for balance - we've created our own version of dancing that's the goofiest, sexiest, weirdest fun thing ever, that makes us and everyone around us have such a good time you'd think there's nothing bad in the world at all.

    (Our second date ever I collapsed on the dance floor - oops. Poor guy carried me out and stayed with me all night and the next day, canceling work to care for me. He knew what he was getting into!)

    I'm just sayin'. Yes, it's worth living. No, it won't be what you imagined. But that's just because you never imagined all that good stuff could happen to folks who are disabled. Can it? Yup. :D
     
    Last edited: Mar 1, 2017
    Puppyoongis, Dechi, Sidereal and 30 others like this.
  6. fiesta

    fiesta

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    Hello Dainty (and others),

    I rarely write on this forum, your story captured me, thank you for sharing.

    greetings
    fiesta
    Europe.
     
    rebar, Jennifer J, alex3619 and 4 others like this.
  7. notmyself

    notmyself Senior Member

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  8. hellytheelephant

    hellytheelephant Senior Member

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    @notmyself - the straight answer to your question re recovery from mild ME....is that this illness is different for everyone. You are young and that is a positive. Many things are ahead for you and if it's one thing I have learnt, it's that this illness is changeable- and changes can be favourable too.

    I spent all my twenties and early 30's bedbound/housebound and I felt I would never have a life.
    I was unbelievably lucky, as I then improved considerably and travelled in S America, lived abroad and got married. All stuff that I thought I would never be capable of.
    I am really ill again...and married to a lovely man who is sharing this difficult journey with me.

    so is my story depressing or positive? Answer: it is both! Trust life and yourself to keep hanging in there and we your PR mates will be hanging in there with you. I am 48 now, and the only wisdom I have gained is that you can never predict what will happen in life. Most of the good stuff is unforseeable...and it is waiting to be discovered.
     
  9. notmyself

    notmyself Senior Member

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    i don t wanna make a drama..so this is my last message here..i'm goona choose the easy way..i live all my life healthy and strong i can t live this life and i don t want..if god exist he will need to make me understand why he did this to me..goodbye ,maybe a cure will come around for you ,i just don t have patience..take care
     
    Kina likes this.
  10. Dainty

    Dainty Senior Member

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    Hey @notmyself, most of us end up finding things that improve things for us. Many find it's worth sticking around for, no need to wait for the research to catch up.

    Do you need to talk to someone?

    I highly encourage you to read this. It doesn't take long and can help make sure that you really want to do this before actually doing it.
     
    Last edited: Mar 1, 2017
  11. wastwater

    wastwater Senior Member

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    You might just have post viral fatigue that can last upto 2 years so you're most of the way through that,if not the research is gaining a pace at the moment so stick with it.
     
  12. Jesse2233

    Jesse2233 Senior Member

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    Dude you're gonna be ok

    First off if you get on the right treatment you may go from mild to barely any symptoms. Second there will be new treatments to address the issue at its core. Worst case scenario you lose a few full bodied years but gain an immeasurable degree of inner strength and character

    But don't take my word for it...

    - Fluge and Mella are showing great promise with Rituximab and Cyclophosphamide, and based on the reports coming out of Kolibri and OMI, we have strong reason to believe Phase 3 will be a success

    - Ron Davis, Robert Naviaux, and co are making breakneck strides in identifying a biomarker, explaining the underlying metabolics / genetics, and finding existing treatments to repurpose existing drugs

    - Jared Younger, Nancy Klimas, Kenny De Meirleir, Daniel Peterson, Derick Enlander, John Chia, Peter Rowe, Suzanne Vernon, and others have ongoing studies poised to show further breakthroughs

    - Francis Collins and the NIH are increasing funding and studies

    - The FDA is poised to speed up drug approval and reduce regulation increasing the odds that Ampligen and other drugs are approved

    - More broadly the converging forces of Big Data, expanding biomedical research, increased philanthropic spending, artificial intelligence, nanotechnology, personalized medicine, and genetic therapy all point to an environment where new treatments and cures are more likely than ever before
     
  13. caledonia

    caledonia

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    If you're feeling suicidal, please contact a suicide hotline or mental health professional immediately.

    I did have a therapist during the first few years of being sick and it was very helpful for coping with having the rug pulled out from under you.

    As far as this disease, if you have to have it, this is the best time in the history of the disease, with the most hope for good treatments, in my opinion.
     
    Dechi, Jennifer J, rosie26 and 7 others like this.
  14. Cheesus

    Cheesus Senior Member

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    I'm so sorry you feel that way. As @wastwater said, you might not have full blown ME/CFS. It is very possible you have PVFS, which would result in complete remission within a few years.

    Even if you do have full ME/CFS, it is really not the end of the road. I really understand how bad you feel right now. I remember not long after being diagnosed I curled up into a ball on the floor of my kitchen and wept for hours like I'd been recently bereaved. In a way, I was recently bereaved.

    But the way you feel right now is not the way you will feel in a month, 6 months, a year. Humans have this terrible habit of thinking however they are in this moment is how they will feel for the rest of eternity, but the reality is that that hasn't happened a single time in the entire history of humanity. Things always, always, always change. It is just the way things are.

    If you make such a significant decision based on how you feel right now then that would be a terrible mistake. Do not extrapolate your emotions about this right now to the future. You will lead a full life, either because you enter full remission naturally or because science catches up and we gain real treatment. None of us are doomed to live this way. I am very severely sick, but I fully intend to ride my bike again, find meaningful relationships, start a career and have children. You can too.

    Don't use impermanent conditions to make a permanent decision.
     
  15. Cheesus

    Cheesus Senior Member

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    I don't think that is just an opinion. It is objectively true!
     
  16. Jesse2233

    Jesse2233 Senior Member

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  17. TigerLilea

    TigerLilea Senior Member

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    Don't give up! You have only had this for one year. I'm entering year 26 this month and I still love life, even with CFS/ME. There are a lot of good researchers working on this illness now, and I truly believe that we are going to be getting answers in the very near future. If you really feel like you can't go on, then talk to a therapist. You are too young to give up and quit.
     
  18. daisybell

    daisybell Senior Member

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    Hi @notmyself
    Please don't decide that life is not worth living. You might get well again, and even if you don't get well spontaneously, the research is so nearly there in terms of understanding how to give us some effective treatment...
    I truly believe that things are changing for people with ME/CFS and there is real hope for a better life. Just hang on in there, and please keep talking with us...
     
    dangermouse and Jennifer J like this.
  19. mrquasar

    mrquasar Senior Member

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    So, so true.
     
  20. Wolfiness

    Wolfiness Activity Level 0

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    The answer to your question is YES. An ME doctor told me he expects an effective treatment within 18 months. Find something worthwhile you can still do and wait. How annoying would it be if they found a treatment 3 months after you died?
     

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