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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Hi My name is Myalgic Encephalomyelitis… some friends who have known me for a very long time call me

Discussion in 'General ME/CFS News' started by Countrygirl, Dec 29, 2017.

  1. Countrygirl

    Countrygirl Senior Member

    This anonymous piece is doing the rounds::)

    Hi my name is Myalgic Encephalomyelitis… some friends who have known me for a very long time call me M.E …... I'm an invisible inflammatory disease that attacks your sympathetic nervous system.

    I am now velcroed to you for life. If you have M.E you hope for remission but there is no cure.

    I'm so sneaky--I don't show up in your blood work, in x-rays, MRI’s can’t detect me, basically there is no test to prove you have me. There are only test to rule out other things.

    Others around you can't see me or hear me, but YOUR body feels me.

    I can attack you anywhere and anyway I please. And, I will. Constantly.

    I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.

    Remember when you and energy ran around together and had fun?

    I took energy from you, and gave you exhaustion. Try to have fun now.

    I can take good sleep from you and in its place, give you brain fog and lack of concentration.

    I can make you want to sleep 24/7, and I can also cause insomnia.

    I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

    I can cause one limb to change color, look bruised, feel super sensitive randomly for seemingly no reason.

    I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.

    OH, and just because I started off in one part of your body, don’t think I can’t travel and effect other parts of your body I so choose to torment. I can, and likely I will.

    I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That's me. Crying for no reason? Angry for no reason? That's probably me too. It is hard to not feel hopeless when you have me beating your body up constantly.

    I can make you scream out loud, anytime of day or night, anywhere you are because I can create pain that makes you sure someone just stabbed you with a knife. Making you look crazy is fun for me.

    I can make your hair fall out, your nails become dry and brittle, cause acne, cause dry skin, the sky's the limit with me.
    I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don't discriminate.

    If you have something planned, or are looking forward to a great day, I can take that away from you. You didn't ask for me. I chose you for various reasons.

    I hear you're going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can even try to help you effectively. Most of them will make you feel like you are to blame, or worse, it is all in your head. I’ll convince them that you are crazy because normal people know that you can’t have all those symptoms all over your body and still walk around looking normal.

    You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
    There are so many other ways I can make you sick and miserable, the list is endless - If your body is all of a sudden dealing with things that were never issues before...yep…. that's probably me.

    Shortness of breath or "air hunger?" Yep, probably me.
    Bone density problems?
    Can’t regulate body temp and poor circulation?
    Constant ‘electric jolts’? Yep, probably me.
    I told you the list was endless.

    You may get massaged, told if you just sleep and exercise properly I will go away.

    You'll be told to think positively, you'll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you've seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these 'understanding' (clueless) doctors, to see a psychiatrist.

    I will make you question your own sanity at times. I will make you contemplate unthinkable scenarios.

    Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.

    Even after explaining to those you interact with regularly that I’m the most painful disease known to man, and there is no cure, they will say things like “I hope you have a speedy recovery”. Those who don’t know me well have no idea how cruel and unusual my punishment can be.

    Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago.
    They'll also say things like, "if you just get up and move, get outside and do things, you'll feel better." They won't understand that I take away the 'gas' that powers your body and mind to ENABLE you to do those things.

    Some will start talking behind your back, they'll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a "normal" person, and can't remember what you were going to say next. You'll be told things like, "Oh, my sister had that, and she's fine on her medication" when you desperately want to explain that I don't impose myself upon everyone in the exact same way, and just because that sister is fine on the medication SHE'S taking, doesn't mean it will work for you.

    They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ can be effected.

    The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can understand and even then, everyone suffers differently
  2. echobravo

    echobravo Keep searching, the answer is out there

    My suggestion, when things look hopeless, forget about western medicine, your illness, go to India (if you are able), have 4 weeks of ayurvedic therapy with daily body-mind treatment, then feel the effect of having your hyperaroused sympathetic nervous system rewired to a calmer state. Hopefully, like me, on day 18-19 you will start smiling again. And you will be able to walk, like 5 km again, without exhaustion!

    It’s a leap if faith going. But once there you will understand how this holistics approach will take care of your dysregulated autonomous nervous system in ways western medicine is just beginning to investigate (EMDR, PTSD treatment, yoga for trauma resolve etc).

    The healing will continue when you get back home, provided you find ways to reduce the triggers of your sympathetic arousal - meditation, yoga, therapy, massage, walks ++ Maybe that’s the hardest part, to avoid focus on illness and symptoms, let all the anxiety go and to get on with life.

    The ANS regulates most body functions, and it is clearly dysregulated in ME.

    Edit: I will invite my doctor in Varkala, @Abin, to comment on the approach he has developed to treat ME.

    Edit 2: During the 2-3 first demanding weeks of my stay (jet lagged, dizzy, sleepless) I was privileged to have the support from @62milestogojoe, who was in Varkala for his second treatment. Also, his account of tge amazing results of his first treatment, was the sole reason I decided to go to India - as a "last desperate attempt" at trying to do something about a declining situation.
    Last edited: Dec 29, 2017
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  3. 62milestogojoe

    62milestogojoe What's a forum then?

    Second that echobravo, having returned from 'second stage trials' with Dr Abin I am back in the gym, swimming pool and cycling. Also working again 2 or 3 days a week. Ayurvedic treatment (especially for me in conjunction with nootropics ) works very effectively in combating CFS/ME.

    I guess it's worth remembering that some of the Ayurvedic tablets contain dozens of tried and tested plant medicines. Will post a detailed account of round 2 of treatment in the alternative therapy section.

    Loved the accurate description of ME country girl...hits the nail on the head. ME/CFS is a monster.
    BTW, Dr Abin's website can be found here for more information-
    Last edited: Dec 29, 2017
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