I have had this weird and yet not fully explored or treatable illness called ME for 22 years. It took the doctors, 25 specialists, 9 years to tag me with that specific label, and I guess it's as good as it gets.
Sometimes I wish I could walk around like Steve E and say, "Hey, I'm Felisol and I'm an ME."
The problem is, since there is no definite cure or rather; no cure at all, ME people are the targets of every snake oil salesperson in the world.
I have no account of the amount of money I have spent on so called alternative treatments.
Last weekend this self established Guru Ms. S, made 29 hope seekers pay 1500 solid NOK to attend a 10 hours course containing nothing new at all. She performed a T'ai Chi sequence like a lousy ballet, and luckily didn't try to teach any of the participants her fake version of the honorable Chinese combat sport.
She introduced Qigong as if it was her own invention, and of course I got over-trained, even if I did practice the movements for some years, before I found out it was too tough for me. I am a born overachiever and don't have a built in brake button.
Finally she put in a Feldenkrais crawling sequence. Been there, still practicing.
Why do I bother writing about this?
1. Because I feel cheated and angry on behalf of all the snake oil buyers of the world.
2. Because some arrogant lady has the incredible boldness to "steal" old techniques and sell them as her own research and invention.
3. Because I also bought her book, as did most of the participants.
4. Because I'd love to own the ancient Italian monastery where one can attend a 20 hours course for 20 000 NOK.
5. Because I've been crashed, bedridden since the course ended, swallowing antibiotics by the score against several old inflammations which have popped up again.
We were warned that might happen. "Just a sign that the exercises are working."
I guess I'm not cut out to be a disciple or a milking cow.
"The proof is in the pudding," the English saying goes.
12 comments:
My dear sister/friend .. my heart and prayers are lifted up to God for you and this condition you suffer from. What a horrible affliction to have to endure .. may God give you peace as you recover from your latest episode. I had no idea the extent you suffered. Gentle hugs and prayers from the North Woods.
xxx
I'm sorry you have had such terrible experiences, and your disease has plagued you for so long.
I'm glad you are writing about it - at least you can share with us, so perhaps we can understand a little better how you feel.
I too am so sorry that you are dealing with ME condition. I have not heard of it, and it sounds like one of those that are hard to define and treat. Just the experience of going to one doctor after another must be frustrating! I will be praying for you Felisol... no one wants to feel sick or weak or bad in any way, so I am sure it's been hard. I pray you will be guided in exactly what you can do about it all. I think you are like me, you want things to be black or white, and the gray areas are much more difficult.
Thanks for sharing so honestly. I do love the statue you began with, it is heart warming.
xo
Dear Ladies,
please don't feel sorry for me.
There are people who are far worse off than me.
I have developed to become kind of a treasure seeker. I turn every stone to see what can improve my situation.
Sometimes I find snakes underneath them.
That makes me angry and made me write this post.
God has been my support and helper all my life and I've had a good life.
T'ai Chi, Qigong and Feldenkrais are part of my weekly routines, I feel happy to have been introduced to these techniques.
My hiker friends, who let me explore new paths and new neighborhoods all the time are some of my greatest inspiration and motivators.
Gunnar,the best among husbands (why did King Solomon never write about the properties of a good husband?), he still is my daily inspiration, love and support. (Oh, I do hope he gets something in return from me).
Serina alone is a reason for living.
And my Mom and Bro are cornerstones in my life.
My blogfriends, who are there whenever I have some surplus time, broaden my horizon, are empathic, wise, intelligent and inspiring persons I cannot do without.
It seems I cannot stop my list of praise. I know I am blessed and I feel happy about it.
I guess I just needed to blow off some snake oil steam today.
Thanks for listening.
Yours Fel
P.S: All prayers are highly appreciated.
That's the one thing I cannot live without.
Dearest Felisol, I am so sorry to learn of the extent to which you suffer. Am I correct in understanding the ME is also known as Chronic Fatigue Syndrome? If so, I have a couple of other friends who suffer with this condition as well. I am familiar with what it can do to your body and to your life. I too am angered by the charlatans who take advantage of those who suffer for monetary gain. I pray your body will recover quickly and applaud your persistence in seeking help. Praying dear sister!
Many hugs.........
Diane
ME: Myalgic Encephalomyelitis. Has something to do with the Central Nervous System.
Heck, that's EXACTLY what Ethyl Alcohol (Beer, Wine and Booze!) attacks, the Central Nervous System.
I read that maybe 6% have a chance at a 'cure'.
So Dear Felisol, rest...rest. I ask God to free you of all but the most necessary anxieties. He IS still in charge, I hear!
Bless you, many are praying now that you have again let us know what it is you must cope with daily.
PEACE!
Dear friend,
I didn't know you had been suffering from ME... and until you wrote about it, didn't know there was such a thing. I googled it, and now I am a bit more informed about Myalgic Encephalopathy...
The money and hours you spent, coupled with the hope of possible alleviation, would all have been worth it, if only they had worked.
But now, as you suffer the "aftermath" of the deception you went through, please know I am praying for you.
Be at peace... play classical music... eat bananas (for the happy hormone it contains, called serotonin)... and lots of homemade chicken soup.
Above all, speak life, and joy to your entire being - this is the prayer I am saying out loud for you as I type these words: "In the name of Jesus I speak life to you Felisol... and I call forth healing to arise from within your spirit. You are loved, you are precious. God the Creator is drawing you with cords of compassion. I call forth joy from the depths of your being, and call it to strengthen you and nurture you to full recover. The joy of the Lord is your strength."
Zephaniah 3:17
The LORD your God in your midst,
The Mighty One, will save;
He will rejoice over you with gladness,
He will quiet you with His love,
He will rejoice over you with singing.
Much love
Lidj
Dear Felisol, I can sympathize with you, as I suffer from a painful disease too. These days after my hospitality spree, my knees are very painful and swollen too.
i 've also suffered at the hands of snake oil people - all sorts of oils and pills - mainly herbal and strong modern medicine too.Only one herbalist helped me - and I was so cynacle of him in the begining.
We are praying for you Felisol. Prayers have brought me such relief - otherwise I couldn 't tke a step without my cane.I had forgotten how to walk .
God is with you Felisol and your faith is very strong.Take rest and do things slowly.With me stress inflames my condition.
You are very brave to try all these exercises - I just don 't have the strength.
Be embraced in the Lord my friend.
Dear Felisol, these snake oil people who prey on good people and their pain. Will one day reap what they sow!
Praying for you my dear sister. Sharing your life with an such awesome husband and loyal friends...I find gets us through our down times.
~Hugs and lots of love,
trish
Hi Felisol,
I followed your ME link and read about it because I'd never heard of this before. Sounds terribly debilitating.
Not to make light of your disease, but did you know that here in Florida, we brew the best snake oil in the world?
Your post explains so much.
And your Peter Pan photo is a delight.
John
Chronic Fatigue is a truly baffling condition. My sister suffered from it many years ago and with time, it went away. The cure involved lots of rest, gentle exercise, and patience. Beware of snake oil salesmen. They prey on the desparate. So sorry this happened to you, dear friend.
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