• Welcome to Phoenix Rising!

    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. Subtropical island

    "Unrest" updates

    Oh, and thanks for the clips and audio! Saves on reading energy on a restless day.
  2. Subtropical island

    "Unrest" updates

    Really liked this one, thanks Joh! Having a tough day (not a crash, actually doing better and getting frustrated and annoyed with myself and everything). Listening to Jen helps me reframe. I am grateful for the function I have and excited to make the most of the life I do have. I waste less...
  3. Subtropical island

    Do you need a book that teaches people how to be fragrance-free?

    :hug: :hug: I don't have MCS as far as I know (still finding things that contribute to my symptoms) but I read the book above and it helped me understand the difference between being someone who goes for the no nasties approach (I even grow my own organic food) and actually knowing what's in...
  4. Subtropical island

    Do you need a book that teaches people how to be fragrance-free?

    Sounds good to me. I know I find it more motivating to go fragrance free or make other good choices for the sake of others around me than for myself. Realising there's a difference between eco-friendly no nasties brands and actually fragrance free was a surprise to me. I did it for a friend's...
  5. Subtropical island

    Sleep monitor for diagnosis

    What's it monitoring? HRV? (Sorry, can't view video to see)
  6. Subtropical island

    Do you need a book that teaches people how to be fragrance-free?

    The Case Against Fragrance (link to goodreads) Book by Kate Grenville May be too basic but maybe that's what you need for introducing people. She mentions that "fragrance free" is what you want, not just unscented or ...something else that sounds good but might still include synthetic...
  7. Subtropical island

    POLL: Do you still read books and newspapers now that you have ME/CFS, or do you read much less?

    For me: The purpose of an audiobook (read well by someone with a smooth articulate voice) or a gentle TV show now is not the same as before ME/CFS. It is not entertainment. It is a way to stop my brain from thinking (which can lead to doing or wanting to do or just exhaustion from thinking)...
  8. Subtropical island

    I have got the diagnosis CFS, but..

    Thank you @mirijam, it takes a lot to get through all that ...and then remember to come back and post this for us. Diagnosis is a very difficult thing and it takes time and care to check and recheck. I am so happy for you that you found something treatable! I think on some level that's what we...
  9. Subtropical island

    POLL: Do you still read books and newspapers now that you have ME/CFS, or do you read much less?

    One sign I need to rest RIGHT NOW is an inability to be succinct. Pithy. .... I can't seem to choose between parts of what I want to say and ramble on ... See?
  10. Subtropical island

    POLL: Do you still read books and newspapers now that you have ME/CFS, or do you read much less?

    I'm in a book club (although have been struggling to make it to meetings now). I would bring home a stack of books (held in hands arms straight it would cover my face) every month, read them all, plus half a dozen on my e-reader and then have newspapers, emails, internet browsing on top of that...
  11. Subtropical island

    I wish someone had warned me when I first got ME... therapies and treatments

    I'm at the stage where I've got things under control such that I am not tired when I'm not in recovery or on the way down to crash PEM. I need to rest but I definitely don't feel tired. I'm crazy with things I just want to ... get ...to.. ...Sometimes, on my way down, exhaustion is a better...
  12. Subtropical island

    Brilliant ME/CFS videos - a guide to ME/CFS & going to the doctor (very funny but spot on too)

    Love. :p:cry::lol::redface::jaw-drop::thumbsup: Link to website? Thanks :hug:
  13. Subtropical island

    I wish someone had warned me when I first got ME... therapies and treatments

    @CFS_for_19_years :(:hug: :hug:
  14. Subtropical island

    I wish someone had warned me when I first got ME... therapies and treatments

    ETA: and what's great about this thread is that you just did: you warned me. Thank you. From the bottom of my heart :hug: Thank you for saying this. I need it. Am still moderate and slowly realising that searching for a CURE is a waste of energy but rationing the energy on what matters most is...
  15. Subtropical island

    "I couldn't get out of bed for eight months - now I'm a burlesque stripper"

    This. This is exactly it for me. I laugh, I cry, I wipe away the tears and laugh til they're tears of absurdity and truth. ...and go have a lie down.
  16. Subtropical island

    I wish someone had warned me when I first got ME... therapies and treatments

    Yes Yes I think an elimination diet which doesn't forget to consider things like additives and preservatives is best (mine was a gut problem with sulphites and another preservative I've not pinned down yet, not dairy, not wheat etc). The trouble with a panel is that you may get false positives...
  17. Subtropical island

    Poll: How many steps do you take a day?

    I was easily over 20,000 every day before I had this. I would have told you, if asked, I wasn't active enough and could do more exercise for my health. I ticked the mildly active or sedentary categories on quizzes. Because everyone around me was fitter and more active still. When I first got...
  18. Subtropical island

    Perfume

    Just a thought: Changing it after a shortish time might also help. i.e. Over-exposure can be part of the problem. That's why a flower in a vase, or the smell of rosemary in my clothes after getting tangled in the hedge, or the smell of the oranges from our tree left in a bowl, etc are all good...
  19. Subtropical island

    What gives you joy every day?

    Oh, and this little guy:
  20. Subtropical island

    What gives you joy every day?

    The view from my window, the sound of the sea.
  21. Subtropical island

    Could a drug that mimics a zero-carb diet help us live longer, healthier lives?

    I don't know enough about this. But I always like to see new ideas around it. Personally, I find a ketogenic diet too harsh on my digestive system (I need a small amount of bland food to help the proteins and veges through my stomach - and watery is not the same as bland). I also feel a lot...
  22. Subtropical island

    Best voice to text software

    Please redirect me and merge the thread if this is already covered elsewhere and up to date (a lot has happened in the past 5yrs for software I'm guessing). I'm realising that if I could dictate what I write, and ideally have the computer sometimes read to me what I want to read, I would be...
  23. Subtropical island

    NHS website entry for CFS/ME changed

    This bears repeating.
  24. Subtropical island

    28th Sept: The cost of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) to the UK economy

    :hug:
  25. Subtropical island

    Invisible illness increases risk of suicidal ideation: Role of social workers in preventing suicide

    Thank you @Woolie, @Invisible Woman, @alex3619 and @Sean. That's much more what I wish to say. @Sad Dad i jumped in with whatever I could think of because I didn't want to leave you alone with that thought. You are very evidently doing so much to help her, you are here. I wish that is what I...
  26. Subtropical island

    Exercise strategies?

    I have a tomtom touch, was cheap when I bought it, company has good reputation for accuracy and monitors 24/7. When they upgraded the app it became much less useful (original app was about data, the new one is about motivating you to do more :/ ) but it is compatible with other apps that allow...
  27. Subtropical island

    Invisible illness increases risk of suicidal ideation: Role of social workers in preventing suicide

    Edit: I very much doubt that you are. Asking yourself that question is a pretty good indicator that you're doing so so many of the right things. But if you do want suggestions, these were my thoughts from my own experience. Is it possible to help her do something for you? I know that making...
  28. Subtropical island

    28th Sept: The cost of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) to the UK economy

    True but that's part of why I wonder. Objective measures ...like change in exercise response measures on the second day seem promising to me but others don't claim to have any delay in onset. Sometimes I read posts and think: I don't have what they have. If that's what it is, maybe I don't have...
  29. Subtropical island

    28th Sept: The cost of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) to the UK economy

    Although I agree wholeheartedly on the personality type subtypes, I am curious about whether there are different symptom sets and whether they respond differently to treatments. For example, for me, PEM is the most important diagnostic factor in knowing I have this thing: after presenting...
  30. Subtropical island

    POTS and sport drinks, how to use them

    Just my personal anecdote: When I saw the tile of this thread I thought: not for me, I never drink energy drinks. I can't tolerate the preservatives etc. they'd wipe me out. Then I realised it is something I've done for years, and my ME/CFS doctor recommended too. Low blood pressure runs in my...