• 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. H

    Comment by 'hedgehog' in 'Denial Is Not Just A River in Egypt-The History of Elephant Art. Part 4-'

    Very touching..wish I could comment on all, but I've found this blog series very interesting
    • hedgehog
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    Comment by 'hedgehog' in 'Don't forget the human.'

    I'm sorry you weren't treated with the same courteousness and compassion you treat others with. It's very saddening. Best wishes to your fiance finding a job that lets him maintain his health, and to you managing rest time.
    • hedgehog
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    Comment by 'hedgehog' in 'Stint Living in the Dark'

    @MTpockets 3 months is such a long time. The black plastic and towel sound like a good idea. I didn't have warning before this happening, so I had no time to research how to cover up all the light. I alternated between a sleep mask, sunglasses plus hat, and long-sleeved shirt tied around my...
    • hedgehog
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  4. H

    Comment by 'hedgehog' in 'Another breakthrough to document'

    I'm so glad you found something that provides some relief. Thank goodness for the lifesaving doctors out there. :hug:
    • hedgehog
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    Comment by 'hedgehog' in 'Stint Living in the Dark'

    I agree that laughing is a good medicine, @Pen2. I like listening to the comedy station on pandora a few days a week :) Thanks for reading
    • hedgehog
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    Comment by 'hedgehog' in 'Stint Living in the Dark'

    Thanks, Dainty!
    • hedgehog
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    Stint Living in the Dark

    I'd guess many here have experienced living in the dark for longer than I have. I just came out of a week of it, precipitated by migraines and sensitivity to stimulation (light, sound, conversation). I always wondered, when watching ME documentaries, what severe patients think about while lying...
  8. H

    What induced your ME?

    Gardasil HPV vaccine, despite the recent study. I have no other explanation for now.
  9. H

    Products that make your life easier?

    @Hell...Hath...No...Fury.. Thanks for the idea! That's clever.
  10. H

    Products that make your life easier?

    Does anyone know of a type of blanket or plastic that could be used to lie down on in dirty public places? One that's thin and folds really small? And maybe not bigger than a towel. I'm not sure what it would be called. I'm thinking of using a trash bag if there's nothing else.
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    Jeff Bezos is Asking for Philanthropy Ideas on Twitter

    Thanks for posting this! Speaking of Amazon, here's the link to a previous thread about how to donate to OMF through Amazon without spending extra money: http://forums.phoenixrising.me/index.php?threads/how-we-can-all-donate-1-013-271-to-omf-ron-davis-per-year-w-o-spending-an-extra-cent.51159/
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    Comment by 'hedgehog' in 'Part time job, achievement unlocked!'

    Congratulations! Truly a cause for celebration! It sounds like a wonderful fit. I remember my first part time job took around 6 weeks to adjust physically, so I hope time will help- in addition to moving to your new home. Great news :)
    • hedgehog
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    Life Experience / Expanding Horizons when ill

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    Comment by 'hedgehog' in 'New doctor. Hopeful. Looking back...'

    Good luck! I hope it can go easily. I'm glad you made it out of such terrible conditions and wish that things can keep improving in your life. The energy and outings involved in searching for suitable doctors can make it feel preferable to waste away than to be subject to what feels like torture...
    • hedgehog
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    What does it feel like to substantially improve the quality of your life?

    I started out bedridden and needing help walking just a few feet. I had to quit school and work for 3 years. But very, very gradually and in tiny, tiny increments, I improved. It was so slow that I relied on people who hadn't seen me in a year to tell me if I seemed better. It made me feel...
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    Comment by 'hedgehog' in 'Friends Without Benefits'

    Your artwork is very moving
    • hedgehog
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    Comment by 'hedgehog' in 'Suddenly I can walk farther!'

    So happy and glad for you :) thanks for sharing!
    • hedgehog
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    Products that make your life easier?

    f.lux- Changes my computer screen to warm light, so it's easier to look at and is less disruptive to my sleep cycle. It's free. Light therapy lamp- I can't look at light currently, but when I was better, this type of lamp helped me wake up in the morning and provided endorphins. Google...
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    Do you find restaurants exhausting?

    Earplugs help me a lot when there's sensory overstimulation. I feel some immediate relief. I bring them everywhere. Even plugging just one ear, so I can still talk and listen with the other ear, is better than nothing for me. I try to sit where it's quietest and least busy visually. So, facing...
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    Comment by 'hedgehog' in 'The Bright Side'

    @bookworm84 What a nice idea to write down stories your grandparents shared. One of my grandmothers passed away 2 years ago as well, but we had physical therapy in common for several years. I like to look back at the birthday cards she sent. I'm really glad you found something that cheers you up...
    • hedgehog
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  21. H

    Staying in School

    @the_phscale Is it possible for you to become a part time student and take just a couple courses at a time? If not, another option is to make a special request to take fewer credits, if your school allows. A doctor's note or signing up with the student disability office (which would probably...
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    hedgehog

    • hedgehog
    • Blog
    • Blog entries: 3
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    The Bright Side

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    Pain is real. Pain is valid.

    Sorry this is happening to you. It can be so disheartening to suddenly have an onset of symptoms when you've experienced the relief of feeling better and had high hopes it'd stay that way. To me, trying to describe the pain to someone else can feel like trying to convince them you see a ghost...
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    Do you feel better after eating?

    I found a reddit thread with some explanation https://www.reddit.com/r/askscience/comments/25sqc4/why_do_i_feel_better_immediately_after_eating/, but I wish I knew more, too. I also get immediate relief from eating (followed by massive food coma), but I don't know why the body doesn't make...