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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Thanks Cort, your story has been really thought provoking for me. I had a large amount of anxiety when i relapsed over a year ago now and found that like you i was always the wired but tired type. You explianed this so well, because for me this is always a difficult thing to explain, most people seem to think it means just being anxious - but its clearly not. I also have MCS which i have had to varying degrees all my life, worse now though in this relapse.
I started meditating about a year ago and it has really been the most empowering thing i could have done for myself. I am much calmer now and have an increased quality of life. I am still sick though and unable to work etc, but i can now go to school events with my kids etc without getting really ill as i seem to tolerate the everyday stresses a bit better.
Yesterday i attended a Zen Buddhist Sangha, set up by some local people in our very rural community and i had such a lovely time. It was the first non family "social" occassion i have been to since my relapse and it was just so wonderful to feel so calm and happy and accepted amongst strangers. I realised i could start to build a life WITH M.E. I dont have to keep waiting to get better to start my life again. With mindfullness i can see that this is my life and it has a lot of good in it.
All so true Cort - thank you.
I chose my forum name 'PictureofHealth' to make sure I was focused on what I wanted and it would make me think of health. Now you have reminded me that it is the inner heart feeling too, that could benefit from a positive focus every minute of the day. Perhaps I will rename myself 'Pleasure'! - that brings a warm inner glow and light, and would certainly bring a smile to the heart of anyone I met - 'Hi, what's your name?' = instant warmth. (After all, some people are called 'Joy').
I had been practising Transcendental meditation for a decade by the time I got ill, and considered myself pretty adept at it. Although I found a profound peace from doing it morning and night, I was not able to carry the benefits into my day to day working life. And once I got ill, although I was already v practised at it, I was unable to physically sustain sitting and the meditation. I tried to do it lying down but what my body needed overwhelmingly was profound sleep bordering on coma.
The same with Tai Chi - I had already been enjoying this for years, but became physically unable to stand upright and do the gentle movements once I got ill. To me this has always been about hyperstimulation of the nervous system and immune system. I too did the Lightning Process, Amygdala retraining (bought Ashok's home DVD set) as the hyperstimulation and perhaps hyper adrenaline model made so much sense to me - but in the end, although I had great benefits, it did not touch my physical condition and was not remotely curative.
I have also previously tried a number of other healing modalities including Theta healing, Perrin technique (lymphatic clearing), osteopathy, herbs, etc etc etc etc etc.
My current approach is Ho'oponopono, a traditional Hawaiian healing system: "I love you, I'm sorry, please forgive me, Thank you." Didn't someone always tell us that these were magic words???!!!! (Joe Vitale and Dr Hew Len wrote a book "Zero Limits" about this practice). I love this approach and it has brought a profound sense of feeling connected to parts of me I thought I could not communicate with. In fact, I love it!
It reminds me of the Japanese scientist (?Dr Emoto), who bottled water in a number of different containers and labelled them with different words such as 'Love', 'Joy', 'Thank you' and negative words too. The water which had been bombarded with damaging emotions and thoughts looked polluted and dead, whereas, astonishingly, the other water, in the 'I Love You', Joy, 'Thankyou' and other positively labelled containers produced the most beautiful crystals - all of which he photographed and can be seen on his website.
Bearing this in mind, I will continue with Ho'oponopono. I feel good on mental and emotional levels, yet my body has remained, so far, 'unrepentant'!!!! Perhaps the body is the densest level of existence and the hardest to reach - but I hope its possible eventually. "I love you" sounds like a great vibrational medicine for me and is perhaps, ironically, the one I have always resisted.
So yes, thank you Cort - I can relate to all your wise, wise words and observations.
nowhere either in depression or anxiety is post-exertional malaise ever mentioned.
In the abscence of a cure what is left? Improving ones quality of life as best one can...
Now I'm looking into the Buddha's Brain Book
After that it just seemed CFS sent irritations my way constantly...little eruptions..big eruptions....the peace was gone.....Even if I can't regain the other stuff - the physical grace and well being - and all the cognitive functioning - I do think I can regain some of the peace... I don't think it's necessary that that is gone. It's a real test for sure....at least some grace and peace came naturally then - now it's a function of generating it or clearing a place for it to arrive.....
Maybe we were the people who needed or wanted, for some reason - a real test this time around..
I have thought this for years..........
I hope you have a good experience with this seminal figure and I hope we hear about it
I went to a workshop with Rick Hanson a few weeks ago at the NY Insight Meditation Center. He said what dramatically boosted his own practice was the conscious focusing on increasing happy states on mind. With meditation I often get into the mindfulness aspects, but don't cultivate the pleasurable. This practice (called Metta in Buddhism) actually rewires the brain and dramatically increases our happiness in life. This whole idea dovetails perfectly with what you were saying.
Another thing that your story triggered Cort, was that many of us get some good results with a supplement or diet, and then it disappears. I messed around with thyroid for 4 years, determined to get the dose right, cuz I had glimpes of tremendous vitality and sunshine in my brain...I even ran up two flights of stairs to my 3rd story apt.