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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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  1. Marigold7

    Pondering what STARTED my Fatigue problem...what about you??

    Kicking yourself will not help matters and does stress really cause M.E? Be at peace
  2. Marigold7

    Stressful events but feeling better. Why ?

    a thousand HUGS. I always had multiple cats so that there would be no total void. Always those who needed me.
  3. Marigold7

    Pondering what STARTED my Fatigue problem...what about you??

    "Ah yes, I remember it well.." It was early 1969 and I was teaching full time. Around the time of the mock "O"level exams.. which made me very popular. NOT ! Caught flu, REAL flu and was so ill they sent me home. I remember ghosting through M and S convinced I was going to die and that I had...
  4. Marigold7

    Stressful events but feeling better. Why ?

    I was always the one who coped and more than coped in even terrible emergencies. Kept folk together and calm etc. then after all was sorted would fall apart dramatically. People rarely understood of course and before I knew what was wrong?
  5. Marigold7

    Stressful events but feeling better. Why ?

    PS so very very sorry about your dog. A hard, hard thing.
  6. Marigold7

    Stressful events but feeling better. Why ?

    adrenaline and shock is my idea. I have known the same so many times. We rise to crises. That is how i managed the house move from hell six months ago. We are "wondrously made" ...
  7. Marigold7

    No increased risk of chronic fatigue syndrome after HPV vaccination

    I had not seen it described as post vaccine CFS before. Would that alone skew stats given that so many GPs in the Uk and Ireland still do no recognise ME? ie take other side effects out of the stats?
  8. Marigold7

    No increased risk of chronic fatigue syndrome after HPV vaccination

    We have here in Ireland a group called "Regret" ' parents of teenage girls damaged by the HPV vaccine/ I had thought the effects read like M.E See https://www.regret.ie/ The victim stories make hard reading. Needless to say our health services here deny and deny and deny...
  9. Marigold7

    I feel I could have fully recovered

    Of little use looking backwards? We will all have regrets like this and I certainly do. Look forward.
  10. Marigold7

    What is the deal with diet?

  11. Marigold7

    What is the deal with diet?

    Indeed yes. I will not let this dominate my life to that extent either. I went through the food avoidance lark many years ago and it was useless and a total bore,
  12. Marigold7

    What is the deal with diet?

    Well if I followed YOUR ideas I would starve to death simply. Unrealistic and excessively limiting. I lived on my own produce, goat milk, eggs from my hens for years and was no better for it. Chocolate is great, Period... And the next wave of ideas will be different. Also like many I...
  13. Marigold7

    What is the deal with diet?

    Agree fully but honestly I have no time or energy or money re diet. I think too that so many of us would walk upside down if someone suggested it would help us, so desperate are we. So motivated are we to get any alleviation. My own diet is fairly basic and staple now. And probably to many...
  14. Marigold7

    What is the deal with diet?

    Wise words. I stopped eating meat more than a very very few times a year way back. This was reinforced by the more recent scares with the oesophageal narrowing ( Hey ; been six months since my last episode so I am getting it right!) I eat what I need and what I enjoy; and on a very very...
  15. Marigold7

    Dealing with shame

    I was thinking in the night; yes re American pressures on people. Yes re the modern psych social mores. And yes also that the word I grew up and was shaped by was a very different one. Harder physically as we walked everywhere, played running and jumping games for hours outside. .I trained in...
  16. Marigold7

    Dealing with shame

    Interesting angle BUT! I do wonder what we each thought of folk "like us" before we were ill? I remember when I was at senior school, thinking similarly of one girl who would be absent yet we would see her out walking when we were on the bus going home. It was my big brother who told me off...
  17. Marigold7

    Allergy in bed/sleep?

    Thanks. As the OP said it was only abed she suffered I think we assumed it was not seasonal. I am overcome by hay fever when I simply open the door to let the dog out but am not taking meds as they have such bad side effects.
  18. Marigold7

    Allergy in bed/sleep?

    Would advise rather finding out and eliminating the allergen? Mine was the washing powder I was using. Far better than taking more and more meds? I never need allergy meds for sleeping now
  19. Marigold7

    Allergy in bed/sleep?

    Check the powder you are using and try not using ANY conditioner. I cannot be near anything where conditioner has been used. Assuming you are not using feather pillows or eiderdowns?
  20. Marigold7

    Dealing with shame

    I lived with guilt for 3o years when I was misdiagnosed as being mentally/nervously/purposely "ill" . Every guilt in the book was thrown at me. Including by Home Helps ... My mother thrust a letter in front of me, the glowing reference from the Vicar, demanding to know what I was doing with...
  21. Marigold7

    Fatigue disappears during migraines

    Ah so sorry>I am in Ireland and because I am a historic monument I have a medical card and only pay E2 an item any prescription item. I gathered it was costly. They ration it! The tabs are good if you catch it before the vomiting starts. I rarely could as I used to wake with the migraine...
  22. Marigold7

    Fatigue disappears during migraines

    All fascinating and I clearly lucked out .. they left me drained but deeply glad when they stopped. with me it was low blood sugar ie doing without food for too long that caused many.
  23. Marigold7

    Fatigue disappears during migraines

    I have dreaded them and they left me ill for days. The last really bad one I had was post-op after wrist surgery; fasting is dangerous for migraines. All I was offered was 2 paracetemol by mouth as I threw up constantly and it got so bad they finally gave me morphine which was bliss.
  24. Marigold7

    Fatigue disappears during migraines

    Opposite with me. Only the pain, and severe vomiting that has meant hospital admission when it got so bad there was blood coming up. Impossible to take any pain relief then. And dehydration a risk Always meant a dr. Then a dr told me re Imigran nasal spray. Could not believe it the first...
  25. Marigold7

    It's worth living like this?

    Disagree as impatience takes up a huge amount of emotional and physical energy and achieves nothing. finding pleasures and joys where and how we are now is a great thing. Patient means more than you think it means. No situation is intolerable unless we allow and help it to
  26. Marigold7

    Vision sensory overload

    I live in my bedroom, which is a loft area and has no windows and visit the world in limited amounts. So used t this I never think about it any more. The old cottage I rent has tiny windows. Cannot remember when this was not so and can never spend time in a room with curtains open. Just is as...
  27. Marigold7

    It's worth living like this?

    Well said and thank you.
  28. Marigold7

    It's worth living like this?

    The real victory is what most of us here do; live with what we have now.
  29. Marigold7

    It's worth living like this?

    The problem is that "modern" mental health theory aims for a smooth, bland, always happy even state that is so unreal. In my mental hospital days there was a saying among the nurses, " If it moves, drug it; it is doesn't, give it ECT" Ups and downs are seen as unhealthy, abnormal. To be...
  30. Marigold7

    It's worth living like this?

    I thought there was a marker found; a test on mitochondria? What happened about that, please? This was known even before I left the UK which is 16 years ago.