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1,281 days: A journal of recovery from severe ME/CFS

Discussion in 'My Optimal Journal' started by Hollyrebecca, Mar 4, 2019.

  1. Hollyrebecca

    Hollyrebecca New Member

    After two months of waning energy, strange neurological symptoms, and swollen glands, I finally collapsed on August 29th 2015. I had just graduated. It took me awhile to get a diagnosis, but when I finally did, the consultant said it was the most severe case of ME/CFS he had ever seen. I could not move any of my limbs and I could not speak. I could not comprehend more than three words at a time. I couldn’t tolerate touch and I had continual visual disturbances and a feeling of pressure in my skull. I also had severe light, noise, and movement sensitivity.

    I was too ill to research anything, and I didn’t know what to do. I had no help. I lay in a dark room for two and half years. After 2 1/2 years I finally had a little bit of energy to speak. I used this energy to ask my sister to research things. It was a slow process. Around this time I caught a snippet of something on the radio downstairs in my parents house – the chief medical officer saying something about cases of fatigue increasing due to low vitamin D.

    My mother had skin cancer when I was a child. I was paranoid about the sun. I wore sunglasses at all times and SPF even in the winter. Before getting ill my immunity was poor and I was particularly prone to urinary and sinus infections. My skin was bad. Both of my parents have auto-immune illnesses. My digestion was terrible. I was on the contraceptive pill for years.

    I started taking vitamin D. 10,000iu a day. My muscle strength improved a little bit after a few months. I asked my mother if there was a way I could go outside. She bought me some dark wrap around sunglasses and, for the first time in years, I went into the sun. I stayed out there for about 15 minutes, and when I came in I was so disorientated that I couldn’t walk straight. But gradually, over the course of that summer, I began to stay out for a bit longer.

    I hadn’t read anything about ‘primal’ living. I didn’t know it was a movement or anything, but all my instincts at this point were primal. I knew I needed light, sun, company. But it was so difficult because I was so sensitive to these things.

    As I became stronger, I started to do my own research. I switched to a paleo diet and started taking key supplements such as, high dose B12, probiotics, vitamin K, and methylfolate, selenium, and iodine. I took Epsom salt baths and sunbathed whenever I could.

    Now. I am perhaps 40% recovered. My muscles are stronger and I can cook. I’ve moved to the countryside and my partner grows fresh vegetables. My cognition has improved enough to read and write. I can go out 2 to 3 times a week, and these trips are BLISSFUL! I never thought I would leave my bedroom. I usually go to the woods, or to the beach. My sleep has improved and my mood is good. Asthma and allergies have disappeared.

    This month I found this website. I think I got the captcha wrong three times in a row. The information here is dense and I’m still getting my head around it. I have started: grounding, getting AM light, wearing blue blocking glasses, eating seafood, and drinking spring water. In just a month I have noticed that my light sensitivity has decreased.

    This illness is a vicious circle. The very things that make us better are difficult for people with CFS to access. By going very slowly I seem to be able to access these things, and I really hope that I can improve more. I’m learning a lot from you guys.
    Last edited: Mar 4, 2019
  2. Jack Kruse

    Jack Kruse Administrator

    Welcome. Lose the sunglasses fast.
    Karen & Glen C. likes this.
  3. LieselK

    LieselK Titanium Member

    Welcome! Sounds like you are making some great strides!
  4. Hollyrebecca

    Hollyrebecca New Member

    They’re gone ~ it’s an old photo! I’ll update it soon. I do still have to use sunglasses when I reach my light tolerance for the day, or I get migraines and cognitive problems. But gradually I am trying to increase the time without them, and I never wear them in the morning.
    John Schumacher likes this.
  5. ElectricUniverse

    ElectricUniverse New Member

    Best of luck to you. CFS is more widespread than you might think, and it is believed to have many co-factors contributing to morbidity.

    There is a large body of research on CFS that has been accumulating over the years. Much of it points to causation by infections/immune dysfunction (mainly the usual suspects-- retroviruses- e.g. EBV and HHV-6, as well as genetically encoded endogenous retroviruses) and a predisposition due to a number of contributing factors, including genetics and environmental exposures. When the terrain is right, diseases come on in and make themselves at home.

    Glad you found this forum on your healing journey.
    Last edited: Mar 5, 2019
  6. Hollyrebecca

    Hollyrebecca New Member

    Thank you very much. I’m following the research with interest; I only wish there was more money behind it! I know some patients have been following a retrovirus protocol with some success. It was posted by Dr MyHill in the UK.
  7. Inger

    Inger Silver

    Welcome Rebecca :)
  8. shah78

    shah78 Gold

    there is no need for more money for reaserch..... dr bat shit crazy gave me /us all the answer years ago.come to the yucatan and sit in the water until you are cured. I had cfs/fibro for over 13,000days.......let that sinkin......13,000 days.. gone in a few days. :) my disease was older than mostof you!! :)
    Anne V, Phosphene, Inger and 2 others like this.
  9. shah78

    shah78 Gold

    try pinhole glasses instead.
    John Schumacher, Phosphene and drezy like this.
  10. Hollyrebecca

    Hollyrebecca New Member

    I might just do that... :)
    Phosphene and shah78 like this.
  11. shah78

    shah78 Gold

    dr. myhill. great intentions...... knows nothing about curing CFS. like teitlebaum. 400 pg. book. I tried 100's of his ideas. ALMOST WORTHLESS!!!! stop reading CFS "gurus"........ Follow "Quantum Belichick". come to the chicxulub crater and become a "Quantum Brady". !! :)
    Anne V and Inger like this.
  12. ElectricUniverse

    ElectricUniverse New Member

    I have watched a video or two by Dr Sarah Myhill on CFS (they call it ME in UK). She is a smart doctor and worth listening to.

    Another expert's research I follow is Dr Dietrich Klinghardt. His specialty is Lyme and Autism but his expertise runs gamut of human infectious disease. Like Dr Kruse, he has been sounding alarm on RF/MW radiation for many years.
    Hollyrebecca likes this.
  13. Jack Kruse

    Jack Kruse Administrator

    Nature must touch your parts chronically as a hungry lover would with CFS/ME........crave her touch and the problems of circumstance cease to be a problem.
    If you have CFS/ME/Lyme you need nature to lean in to kiss you in all the places where the aches are found....... this is the most special of Rx of touch nature provides when we get out of her way of communication.
  14. Hollyrebecca

    Hollyrebecca New Member

    That was strangely moving.


    I do crave her touch. Badly. And she healed me once before. I wasn’t as ill then. But her touch is already beginning to heal me in some ways.

    I’m scared that 5G will ruin nature’s ability to heal. Scared that I won’t be able to find these little wildernesses anymore.
    Phosphene likes this.
  15. Hollyrebecca

    Hollyrebecca New Member

    MyHill is smart and kind and gives so much so for free. She’s open-minded and always willing to learn from her patients. She talks about EMF, light, etc... I’ve directed her to this site and posted about it in the support group.
    Linz and Phosphene like this.
  16. Jack Kruse

    Jack Kruse Administrator

    Touch moves us strangely by design.

    Is mother nature your mistress? If not, you best engage with her daily. Her game is all that matters in life, death, and love. She is the nurse that heals the infirmed of the mind and body.

    The reason life can hurt us so much at times when we are ill is that we have separated our souls from the invisible forces nature wields over us and this forces us into a disconnected existence in life. This discomfort is how she touches you back wireless to give the information that your choices are not wise for you. What matters most is how well you walk through the fire of a challenge, with respect to disease.
    Phosphene and Hollyrebecca like this.
  17. Hollyrebecca

    Hollyrebecca New Member

    Yes. I feel that. She is my mistress now. I splashed barefoot in puddles this afternoon and it made me giggle like a girl.

    Funny, I felt the pain of separation in my soul before I felt the pain in my body. I felt so heavy then. So disengaged. Then my body gave up.
  18. Phosphene

    Phosphene Gold (finally)

    shah78 and Hollyrebecca like this.
  19. ElectricUniverse

    ElectricUniverse New Member

    Nature is representative of the Universal Goddess, and she is, in her most benevolent form, full of grace, beauty, healing, and auspiciousness. And females of species are a physical manifestation of her creative glory-- never forget that.

    All is well whether we realize it or not. There is a lot more going on behind the scenes than our senses would have us believe.

    For good mental hygiene, I try to remind myself that despite constant threats to our health and well being on all fronts these days we should lighten up a little, see beauty and wonder in everything, and pause for a moment to be thankful of any good that has appeared in our lives.
    Last edited: Mar 6, 2019
  20. Jack Kruse

    Jack Kruse Administrator

    Today is the day after Mardi Gras and it was a pretty epic stretch here. Today the streets are loaded with neighbors who have foreheads filled with ashes.......the sun illuminates their faces as they walk by my porch.........

    Lent PSA for the Black Swan: the time when ashes touch the forehead. Is it a cipher for how our dead ancestors can inform us to listen to the wisdom of the voices of our intuition? Remember that we are but stardust sparked to life with the touch of sunlight........

    Do not be an angel on the sidelines for your flock. Touch them in any way you can right here and now. #mitochondriacwisdom

    John Schumacher and Phosphene like this.

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