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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Is it possible to get your life back? Has anyone here done it?

Discussion in 'General ME/CFS Discussion' started by silky, Jul 21, 2017.

  1. silky

    silky a gentle soul here to learn

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    I don't mean running marathons or even light jogging and yoga. I just mean being able to work a decent office job, find a good guy, and enjoy simple things like TV shows and movies without every second being a nightmare. I'm mainly housebound right now, been sick around 9 months.

    And I know nothing is guaranteed, and things can get worse but I'd really like to hear some modest recovery stories if they're out there.

    It seems so impossible to me right now.

    Thanks!! :)
     
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  2. mrcitrus

    mrcitrus

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    Never never never never give up. Winston Churchill

    Where there's life there's hope. Hang in there believe things will get better.

    Alan
     
  3. JayneM

    JayneM

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    Yes, it's possible. Even in long-term sufferers like me (10+ years).

    I've gone from severe - bedbound/housebound to moderate/mild and work a desk job from home.

    I met my husband prior to getting sick but he's stayed with me the entire time and gone through the worst of it with me. Pretty amazing since we were in our 20's when I was severe and could barely get myself into the shower, so normal couple things like going out to dinner etc was not possible. Most people wouldn't stay under those circumstances but there are some decent guys out there - and he still wanted to marry me!

    Plenty of Netflix binges in our household. I think it's also a good excuse for him to get some downtime as well. Simple things like going out for coffee etc we are both grateful to be able to do now. Have a rock solid marriage despite this illness.

    I second what Alan said, nobody knows how this illness will play out for them but keeping the hope alive that things can get better is important and not unrealistic because it can happen.
     
  4. maybe some day

    maybe some day Senior Member

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    Yes, its possible. Very possible. The first stages of cfs can be barbaric. However as time goes, it many cases it levels off and begins to recede. I dont know of anyone feeling 100%. I made it to 80%, got a cold and smashed me brutally for 6 months with a relapse. On my way back though..hopefully see that 80% again.
    9 months may feel like forever, but accept limitations, and only live one day at a time.
     
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  5. silky

    silky a gentle soul here to learn

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    Thank you for the encouragement and stories. It is a comfort to my heart to hear
     
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  6. JayneM

    JayneM

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    Something positive to help you cope with this is that you've had it for 9 months so you're still in the initial stages of it, though I know it's super hard to deal with no matter the timeframe BUT there seems to be a subset of people that can get a handle on it and provided they've not had it for longer than 5 years, there seems to be a good amount that recover. At this point there's nothing to say that you can't be one of those people and with more progressive research (and high quality researchers) the future is looking more bright.
     
  7. gregh286

    gregh286 Senior Member

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    Yes, its possible.
    I got back 90% of life after 4-5 years. I function almost normally now. Stamina still lacking slightly.
    Never thought I would say that.
     
  8. thijs

    thijs

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    My sibling recovered 100% after meeting CDC criteria.
    But he started recovering in his teens. Research has shown that adolescents recover more often than adults.

    To answer your question: we don't know what causes recovery. So we also don't know your chances of recovery.
     
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  9. msf

    msf Senior Member

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    Yes, it is possible. I was largely housebound like you for the first year after I fell ill, then things started to improve gradually (the major improvements coincided with dietary changes and KDM´s treatment regimen), and now (three and a half years after I fell ill) I have enrolled to study for a master´s full-time next year. I think office jobs are hard because there is a lot of sitting in a fixed position for a long time, but I managed to work for 10 days as a teacher in February (after the latest round of treatment) without any immediate ill-effects (I am not quite where I was in February at the moment, but I don´t think this was because of the teaching). Most importantly, I am not able to enjoy my life again, which I wasn´t able to for the first year of my illness, but this slowly changed thereafter. As for dating, I hope to do some of that when I go back to uni!

    Another thing to bear in mind is that it is quite likely that some effective curative (or near-curative) treatments will become available in the next three years.
     
  10. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    Since you are relatively new to CFS, heres a few things I would travel back in time to tell myself.
    CFS seems linked directly to adrenaline surges causing crashes. Egg or chicken, I dont know.
    Body always tired in morning after cortisol spike, things like that. CFS very close to Gulf War Sickness, Yuppie Flu,
    seems to be more prevalent in high adrenaline people, ultra athletes, adrenaline junkie etc. Spikes in teenage years and 30-40 group does suggest a stress related timeline, but nothing ever conclusive.

    So, look after after your adrenals, don't do adrenaline surges and maintain a "I don't give a shit attitude", don't stress about what others think about you, f@@k em. Concern yourself about your wellbeing. Actually, you almost have to be selfish in that regard. It goes against my and probably most of us personality, as we are givers. Need to switch to taker.

    Keep diet clean, the makers diet with seafood works best for me, but we all differ. Essentially nothing processed.
    I found D, B vits and Aminos acids worked best, but male and female not similar in amino profiling.

    Treatments are coming sooner than ever, keep faith.
    It can be a dark road, but remember there are always people worse off. Keep things in perspective.
     
  11. silky

    silky a gentle soul here to learn

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    Thank you all, it is so good to hear these stories
     
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  12. aquariusgirl

    aquariusgirl Senior Member

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    They are stories. Where are the damn treatments?
     
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  13. Basilico

    Basilico Florida

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    Yes, definitely possible as others have said. My husband has periods of time where he's feeling better, more productive, able to go out and do some things he enjoys, etc... When he's going through a worse period and is mainly couch-bound it's hard to remember that those times can return, but so far they do. Sometimes not as good as he was, but his ups and downs seem to be cyclical, it's just that the cycle sometimes takes a long time to change so it's hard to remember that the present state isn't permanent.

    I, myself, went from being completely couch-bound to the point where I would have starved to death if he hadn't been there to serve me meals, because I just couldn't even handle walking to the refrigerator and microwaving something. Now, I am fairly functional, I do dishes and laundry and grocery shopping and some cooking, I'm able to enjoy some things and work part-time from home. I still have ups and downs, but my baseline now is much higher than it was at one point. No matter how bleak it seems, things can change on a dime.

    One thing that helps us is to always have something new to try - it feels like we aren't giving up. Most things are a bust, but a few things surprised us and have made a difference. For example, liposomal glutathione makes a noticeable improvement in how much activity my husband can tolerate without crashing. It's expensive, so he can't take it too often, but seeing that glutathione makes a difference for him, he's now taking a probiotic that produces glutathione endogenously. It's too soon to tell how effective it is (early signs are promising) but the fact that we have new things to try gives us hope that we can get better, even if not cured.

    After being mostly couch-bound for about a year, he was able to take a 1200 mile mini-road trip for his birthday and had an amazing time. It required A LOT of overplanning and back up plans to account for potential health issues, but we made it happen and it was one of the best trips ever. I try to remember that when I get too focused on what we can't do (because there is plenty we can't do). I know 9 months of being house-bound is awful, but it's not necessarily your destiny forever. As hard as it is, I think it's helpful to focus on one day at a time, and try to find as much humor and joy in little things as possible until you are hopefully able to gradually do more.
     
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  14. msf

    msf Senior Member

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    My story included treatments.
     
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  15. maybe some day

    maybe some day Senior Member

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    I didnt have any. I wish I knew, trust me. I would share it
     
  16. aquariusgirl

    aquariusgirl Senior Member

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    That's my point...,no research....no diagnostic markers.....no protocols.......no mainstream help ......
     
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  17. lnester7

    lnester7 Seven

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    I have had a few remissions and I am about a 70% now (not this week, but the past few months). Going up everyday. I know a few people who are ok not longer around much. They all have had different things to make them well: Literally all different: antibiotic, antivirals, supplement and natural stuff, another with peptides, another with gcmaf...
    I was trying to learn from the people that got better and I am having success with analyzing my own issues, and removing physical triggers and body stress (physical things that trigger my body to feel worst). And doing more of the things that work and make me feel good. Took me a while to get where I am.
    But to be honest if you understand 2 things:
    1) Inmune system: do you do better on modulators, boosters or suppressors?
    2) OI: does your body likes vasodilation or vasoconstriction ?
    3) If food intolerance are present then a whole process for that.

    Once I understood this, and every food and every tea I took would make me react bad or good, then I started to see progress. At first I would google each food and each drink with both (example: is green tea inmune booster or is green tea vasodilator or vasoconstriction?) at first I didn't know any of it. But as I learn: I do well on inmune modulator and on vasoconstriction (vasodilators made me very sick). I take meds of each now and works great in my case.
    Hint: I knew the sun made me feel awful, alcohol, hot showers....... That was my hint on vasodilators issues. Felt good: cold showers, some other teas...
    Hint: I felt horrible on echinacea tea, zinc, and high of anything that was supposed to be "healthy that would increase the inmune system. Felt great on acai tea (inmune modulator)
     
  18. pamojja

    pamojja Senior Member

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    Compare that with other irreversible diseases.
    Got a collection of diagnosis of those on account of well researched diagnostic markers: PAD, COPD, T2D, NAFDL, CKD1, stroke, etc.
    And pretty extensive surgical and pharmaceutical protocols all paid by insurance. With the only caveat ...all that just wouldn't really help in respect to my terribly increased mortality. Though it is a business model... - I could refuse only.
    So back on my own, now additionally with CFS/ME, again. Maybe, the fear of impending death and no real help from conventional medicine with my former diseases did something to me, so that finding myself on my own again with this disease too, doesn't seem so odd and hopeless anymore?
     
  19. confetti11

    confetti11 Senior Member

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    I'm in a relapse now, but I've gone in and out of up to 80%+ over the last 17 years. (This is from a mostly housebound condition.) From February 2012 to February 2017, I was working full time. Not at a desk job though, that's a death sentence for me. I'm much more functional in an independent contractor fashion. I do better on my feet than sitting. (Not working like construction though of course).

    I've had tons of treatments with a doctor who in holistic in nature the entire last 17 years. Lots of supplements, IVs, some antibiotics, treating adrenals, etc. etc. etc. Tons of money out of pocket and it has cost me a ton financially. I don't think I would have had the same progress at all without this help.
     
  20. silky

    silky a gentle soul here to learn

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    These stories are really great :) thanks everyone
     
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