M.E illness amongst jehovahs witnesses?

by haujobbz 51 Replies latest jw friends

  • glitter
    glitter

    *Gentle!Hugs* to Mimilly

    I've had M.E. severely since I was 14 years old (just turned 21 now). It's ruined my life. It's left me without an education (I never missed school, and was predicted all As in my GCSEs - didn't take any in the end), I can't walk further than across a room (on a *good* day. I used to run every morning), I lost friends because semi-consciousness is not fun (I was popular - made loads of new friends though, but it was very hard to lose the old ones), and I'm almost entirely dependant on help to do almost ANYTHING. I didn't get this dreadful illness to get out of school, or growing up, or meetings (was already attending infrequently), or anything else.

    There's no cure and no proven treatment. And it was *not* self-diagnosed - I was a healthy active child and then suddenly I just couldn't get out of bed - and I'd never heard of M.E. before, I didn't have a clue what was wrong with me or that it would last this long!

    I'm not crazy (it's official!) - genuine M.E. diagnosis is reliant on there being no underlying health problems of any kind that could cause the smptoms.

    *However* I've come across many people with "M.E." who are suprisingly active. If you hang about M.E. support groups you'll see them - "My M.E. is very very severe but I find doing Karate and riding my bike helps" or "I've been completely bed-bound for months - look at this cool pic of me up a mountain on holiday last week!" Both of those actually happened, btw.

    So yes, there are people who fake it, but there are people who will try to fake anything.

    Every person who genuinely have M.E. I've met cannot *stand* those who are just faking it - because if you have M.E. it's *very* hard to get taken seriously by doctors or by disability benefits agencies - *because* they see so many who are faking it.

    You can *die* of complications due to M.E. ---> This girl wasn't faking it, unless she faked herself to death: http://www.ahmf.org/

  • Mulan
    Mulan

    Glitter, I feel for you. My doctor explained one thing to me that made a lot of sense, and I followed his instructions. He said the lymphatic system is affected very badly by this illness, and unlike the blood, which has the heart to pump it throughout the body, the lymph has no pump, except the activity you engage in. So he said NOT to give in to just laying around all the time. He said it was very important I continue doing things, but when I was sick with headaches and sore throats and fevers, not to exercise because it would make it much worse. He said short walks are necessary and inactivity will make it worse.

    One of the other pioneers would tell me all the time, I needed to go for a walk when I got home from service, to get my energy back. One day when I had to quit at noon because my head hurt so bad, she said I would feel better "if you just go out in service this afternoon." I blasted her with my tongue and left. The others in the group applauded! She was and still is, a WITCH!!

    Most critics of this illness are just ignorant. I was forunate to get a doctor who believed the disease exists.

    The company I got involved with, to buy the products that cured me (or maybe it's a remission for 8 years) had dozens of women, in my area, with this disease. None of them were JW's. I was often asked to speak at seminars about my illness and my experiences with that business. As a result, I was able to help many people to get rid of most, if not all of the symptoms. Of those women, most were young home makers, some were professionals, but most were just ordinary women, like myself.

    It wasn't stopping being a JW that cured me. I was done with the illness for 2 years before I learned the truth about "the truth".

    Edited by - mulan on 27 August 2002 0:47:36

  • NewLight2
    NewLight2

    Quote:
    "The company I got involved with, to buy the products that cured me (or maybe it's a remission for 8 years) ". . . . Mulan, would you be so kind as to reveal what company sells these products that helped you get well? I know someone who may be helped by this information. Thanks, NewLight2

  • Mulan
    Mulan

    That company merged with another company, and they discontinued some of the products.

    The one I recommend now, that has also helped many people is called 4Life Research. This is my webpage: http://www.4tf.com/k We have one target product that everyone should be one, and there are fibromyalgia products too.

  • LyinEyes
    LyinEyes

    I went to doctors for years for juvinile arthritis and live with great pain in my childhood. I had surgery for my feet in my teens. I also had mono , that lasted a year, because I had a second relapse that was worse than the original one. I missed alot of school that year, also about the time I had my surgery. I could have caught the virus from the hospital the doctors say. Then in my adult years the muscle pain started with a fury like I had never felt before, pain that I can say feels like a migraine in your muscles. I had to get shots of demerol to stop the pain. I have migraines and they went hand in hand , sometimes one whole side of my body hurt while the other side was pain free. Every test was done and I even believed it was" all in my head". The elders sure didnt understand it. They would make remarks to my husband , "well , Dede seemed fine yesterday , I saw her at Wal-Mart". This really hurt, because I had good days when I was able to do what I needed to do, and days when I couldnt walk. They had no clue what suffering from fibromyalgia was all about, they did think you were using it as an excuse to be lazy and miss meetings. I pushed myself with 3 kids to keep up until I couldnt anymore. Then the Awake came out with an article on this illness, and all of a sudden they started to think maybe it is real......... it took the WT org, to tell them what to think. There was one elder who did show an interest, he even while at the library looked up fibromyalgia to understand how I was feeling. I often wondered if he looked it up to see if it was real or was he really concerned. But regardless, of his reasons, he did understand more than the others did. It is very hurtful for others to make statements as to your health, when you do not want to be sick , you would do anything to be able to do as much as others. I will say in my case, being a JW was very stressful and alot of my physical problems that I had as a child , and still have, are only worsened by stress. But that does not mean the pain is not real, or we make it happen to ourselves. I know that can happen , but why do some judge others, it would be better to be kind and helpful , understanding than saying they are causing it upon themselves. That kind of thinking is so typical of Jw's , towards the end of my borgdom, I didnt care what anyone thought, I knew I felt bad and to hell with proving it to them. I even thought of getting a detailed doctors report, excuse if you will , on why I felt like crap. It is sad, that they make you feel so low and ashamed for being sick.

  • petespal2002
    petespal2002

    MIMILLY-

    Thankyou for your great answer, you saved me saying it!

    People who talk about M.E. in disparaging terms should try having it for a while, it'll soon scare them rigid and have them reassessing their lives and priorities.

    To all of you who were negative in your remarks- I thought this site was about mutual support, not Witness bashing. Oh, and by the way whoever remarked about clinical depression and demonic overtones, you are well out of date, pal. Don't proliferate that old chestnut.

  • ballistic
    ballistic

    Scully, I knew you didn't mean it like that - don't worry.

    This thread has brought it all back to me. There was a different viral agent to what some of you mentioned which ME was attributed to and I proved positive for but I cannot rememeber the name now.

  • Scully
    Scully

    Petespal:
    >>>Oh, and by the way whoever remarked about clinical depression and demonic overtones, you are well out of date, pal. Don't proliferate that old chestnut.<<<

    I believe you're addressing me.

    At the time, in 1993-95, that WAS what happened to me, regardless of whether it was 'out-of-date' or not. Maybe you should phone up my former congregation and give them hell for sending someone snooping about my house to check for demons.

    You are probably very well aware that even when the WTS recants on certain points of view, there will always be a few die-hard, hard-nosed dubs out there who will not let go of the old fallacies. Old chestnut or "New Light" be damned.

    Love, Scully

  • petespal2002
    petespal2002

    Scully,

    I'd love to phone them. This one really sticks in my craw, as it was never an officialy sanctioned view. The 'old-guard' should try having clinical depression and find out the truth for themselves. They had NO RIGHT snooping around your house pushing personal opinions, and I hope you threw them out! Coming from an organization that actively seeks new members it should spend more time caring for the ones it's already got insted of bringing people in the front door whilst shovelling others out the back. Did not King David suffer depression at his sin with Bathsheba, and Moses due to the tiresome Isrealites? They both recieved loving help of a practical nature from the Almighty himself. If they'd been in your or mine congregation I suppose they'd have been counselled about a wrong lifestyle and encouraged to fall off the fence they were sitting on.

    Love and apologies,

    Petespal

  • CC Ryder
    CC Ryder

    I missed this thread. I didn't recognize the illness. I read all about this and many other illnesses back when I became ill with an unexplained mallady that came on me over labor day holiday 17 years ago. I went through a drastic physical change overnight. Originally I thought I was experiencing heart problems as I had severe chest pains. Later I found out there was nothing wrong with my heart. I went to Brigham and Womens Hospital in Boston, Ma. Over a six month period I had 16 visits and they finally gave me the diagnosis of Fibromyalgia. I went on suffering from pain, fatigue, lethargy, irratable bowl, everything under the sun. I was never put on anti-depressants but was given almost every anti-inflammatory drug on the market. Nothing helped. I stopped going to doctors about it and just lived with it. After I moved South and met Tink, she talked me into going to Baptist Hospital and trying it again with the doctors. I went to a Rhuematologist at Baptist in Nashville. He ran tests for Lupus, Rhuematoid Arthritis, and Lymes Disease all of which I had 10 years prior to this. The tests again were inconclusive. I had done my own reading and research at libraries to try and come up with some other clues on my own. I did not except the diagnosis of Fibromyalgia as the medical journal I looked it up in had, at the time, only a small paragraph on it. It basically said it was sore muscles and ligaments, well, damn I knew I had that. I found from my searching that the immune system is primarily the culprit for almost all diseases and unexplained disorders. Viruses, severe stress, and severe trauma will start the immune system into a syndrome called Auto-immune disease or disorder. The immune system, made up of white blood cells, antigens, and a primary steering mechanism the researches labeled as a "T" cell. The 'T" cell is supposed to steer your white blood cells to the germ or foriegn bodies in your system. It was explained that after the "T" cell attaches to the germ it makes itself look like the germ and the the antigens combine with it and thus draws the white blood cells to destroy it. When the "T" cell goes awry, it attaches itself to good body tissue and your own immune system attacks your own good body tissues. The resultant deseases they attribute this to are Multiple Sclerosis, Lou Garrigs (ALS), Lupus, Rhuematoid Arthritis and quite a few more that I do not remember right now.

    I told the doctor at Baptist that I felt it was not a syndrome but something real and physical attacking my joints and muscles. After looking at my medical records that I had forwarded to him he asked me if I was ever treated with Steroids. I told him no. So at the time while I was visiting him, I was suffering so bad I couldn't drive and could not even get my shirt off for him to examine me. So he prescribed Prednizone and Naproxen (Naprocin). In two days I was like new. A drastic turn around. When I went back he said that it probably indicated I had some sort of Rhuematoidal illness but it was still in a stage of undetection, which he said sometimes occurs. He said he would treat me for Rhuematoid Arthiritis even though the tests were negative for it.

    That was 5 years ago. I still take Prednizone only for bad flair-ups. Whenever the weather changes from a High pressure to a Low, the day before a storm comes, thats when I get the worst pain. The spring is the worst for me because the weather is constantly changing. I feel that doctors are limited, and can only diagnos something when it is obvious. When it is illusive they usually use "syndrome" or "dis-order" to describe it rather than call it what it really is, a disease. Stress is really bad. Many things cause stress and the WTS sure has it's share in inflicting stress on those who are caught up in it or who's lives have been destroyed by it. I feel that diseases like ME and CFS and others are real diseases that the medical and science fields have yet to pin-point. Hopefully they will in my lifetime and for the sake of others who suffer with these diseases that illude medicine.

    This is my own personal opinion. I have a lot of articles somewhere in boxes. I'll try and find some of them and scan them for those who may be interested.

    CC

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