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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Jody

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    It's nice to see so many of the old gang from the early days.:)
  2. Jody

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    Hi Wayne! So nice to see you again as well. ☺️❤️
  3. Jody

    Article May 12, 2023 Is International ME/CFS Awareness Day

    Hi Cort I appreciate your comments. And I'm glad you mentioned the conference and other events that have been happening. These things are so helpful and so encouraging especially after the silence of the early (and not-so-early) days.
  4. Jody

    Article On the Absence of Light and ME/CFS

    Hi Tammy I take 10,000 IUs of vitamin D3 every day all year round, even through the summer. They are chewables -- I already take enough pill and capsule supplements, adding 10 more would just be too much. Plus my vit. D's taste like chocolate. Sort of.:)
  5. Jody

    Article The Apologizers of the ME/CFS World

    Hi CoolBreezes, I'm glad you found that my article struck a chord for you. I think you really nailed things with your examples. And I am right onboard there with you. So many things make us so very sad. And boy there are a lot that make us angry. Sometimes changing the words we use, to...
  6. Jody

    Pupil Hippus Anyone? (Pupils constricting/dilating)

    When I was in my teens and twenties, my pupils were dilated most of the time, so that there was just a rim of colour around my pupils. Noticeably so, because people would occasionally remark on it. My friends would jokingly say it must mean I was high most of the time. (I was not:)) It didn't...
  7. Jody

    Article Holiday Season ME/CFS Style — With a COVID Twist

    Hi Lenora, It sounds like we cope very well doesn't it.:) Mostly we do. But keep in mind, it's like Facebook posts and pictures. You are getting selected moments in there. We live a fairly small life -- or let's call it, intimate, that sounds better, or bigger:) -- but yeah, mostly it works...
  8. Jody

    Article The Apologizers of the ME/CFS World

    YesM Gotta agree, we are all sorry for our present state. Maybe that is grief though rather than apology. I also am very grateful that I was in my 40's before I started getting sick, and had had years of marriage, motherhood, and a busy productive life under my belt before things started...
  9. Jody

    Article The Apologizers of the ME/CFS World

    Anncomingtogrips, I have been there, and I feel your pain in having to downsize your life from things that have mattered so much to you. I woke up to a nearly empty email Inbox today and felt a mix of relief and sorrow. I know you can relate to that. I understand your anger that people don't...
  10. Jody

    Article The Apologizers of the ME/CFS World

    Pearshaped, I agree, some people do expect you to say or be sorry. I think though that whether they are ok with having helped or whether they are not, s their issue. Not ours. We know what we can and can't do. Burden? The biggest burden in it all falls upon us. I think it's ok for us to get...
  11. Jody

    Article The Apologizers of the ME/CFS World

    Rebeccare, I whole heartedly agree. Sometimes it's a matter of knowing how to say what we are trying to say and if all we're used to starting out with is "I'm sorry" it can be challenging to figure out what to say instead. Starting with Thank you is a beautiful beginning. Changes what comes out...
  12. Jody

    Article The Apologizers of the ME/CFS World

    Likaloha, It's tough to be a pleaser. I sympathize. Limiting your interactions to those who understand sounds like a very smart move. Thank goodness for the people in our lives who understand and don't put unhealthy pressure on us!
  13. Jody

    Article The Apologizers of the ME/CFS World

    Holy cow. I just stumbled upon this thread and discovered there are posts here from more than a year ago that I had not seen till now. I will proceed to respond to them now. And I will NOT apologize for missing them! Though that is taking a bit of a struggle to not do it.:)
  14. Jody

    Article Holiday Season ME/CFS Style — With a COVID Twist

    Listen. I have actually started to read an article, found myself enjoying it and thinking ... this seems really familiar. and then realized -- Oh! It's mine! I wrote this. :) good thing I liked it I guess:)
  15. Jody

    Article Holiday Season ME/CFS Style — With a COVID Twist

    2Cor.12:19, Well, I certainly understand where you're coming from:) But I'm kind of glad you had that happen, and that you wrote a post about it. If you look back a couple of posts in this thread you will note that I had somehow dropped out of the thread a year ago, and the only reason I...
  16. Jody

    Article Holiday Season ME/CFS Style — With a COVID Twist

    Sledgehammer, I just now saw your post from a year ago! I know what you mean about the relief that comes in some ways from lockdown and restrictions, to those of us who are chronically ill. In some ways it doesn't affect us at all because we have already been locked down and restricted. But I...
  17. Jody

    Article Holiday Season ME/CFS Style — With a COVID Twist

    Have I really not responded to this till now? How did that happen? ... Got lost in ME/CFS fog somewhere I guess. So a little over a year later ... Here I am!:) I still look back on and miss the busy frenetic Christmases we had with 5 little kids and then later with their girlfriends and...
  18. Jody

    Article Honouring the Memory of our Friend PatJ

    Honouring the Memory of our Friend PatJ by Jody Smith We want to celebrate the memory of PatJ here on Phoenix Rising. Many of our members knew him as a long-time friend on these forums. We received some sorrowful news about Pat on December 29, 2020 from his sister Shannon. “I wanted to...
  19. Jody

    Article Holiday Season ME/CFS Style — With a COVID Twist

    Wolfcub, Quiet and simple works for me. It is hard on people -- especially for those not used to quiet solitude. Stay safe! Jody
  20. Jody

    Article Holiday Season ME/CFS Style — With a COVID Twist

    Diwi9, Thanks! It is odd, but many things are easier for me as people go less contact and more virtual/ remote, Fits my chronic lifestyle:)
  21. Jody

    Article Holiday Season ME/CFS Style — With a COVID Twist

    Hi Lenora 8 hospitalizations in 10 mos? That's rough! Christmas should be simple this year:) Thanks for sharing your experience and insights with us. Stay safe! Jody
  22. Jody

    Article Holiday Season ME/CFS Style — With a COVID Twist

    Holiday Season ME/CFS Style — With a COVID Twist By Jody Smith I have a bad history with late November and the month of December, ever since I first got ME/CFS 28 years ago. Some of that has to do with the shorter daylight hours in my hemisphere, but a lot of it is wrapped up with the...
  23. Jody

    Article The Apologizers of the ME/CFS World

    DomSaxum Yeah they are so far off the mark it takes the breath away doesn't it. I wish there was some way to change that, but it's been a fixture for as long as this illness has existed. Come to that this type of medical ignorance has been around since before any of us got sick. It's been there...
  24. Jody

    Article The Apologizers of the ME/CFS World

    Rufous McKinney Your inability is real. Your husband's dilemma is real. But you can no more drive than you can create a working car by concentrating on it. It's rotten not being able to do things for ourselves or for the ones we love. And the list of the things that we can't do and haven't done...
  25. Jody

    Article The Apologizers of the ME/CFS World

    Howard You are right. Your wife is right. That sign is an absolute marvel and I love it:) Keep on working at convincing yourself. It's a journey, but it's worth it and any progress you make in that direction will make a difference in your life -- and apparently in your wife's life:) Just don't...
  26. Jody

    Article The Apologizers of the ME/CFS World

    Thanks for the videos Jjnz.:)
  27. Jody

    Article The Apologizers of the ME/CFS World

    Bingo! There you go, Wolfcub.:) That is exactly it. And maybe catch yourself when you are going to apologize for something ... and see if there is another way to say it without "apology" or "sorry" in it. Can be quite challenging. But rewarding. And I have found it often to be eye opening as...
  28. Jody

    Article The Apologizers of the ME/CFS World

    Pyrrhus I think it may be an epidemic in our community.