August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS

Discussion in 'Phoenix Rising Articles' started by Jody, Dec 23, 2017.

  1. Jody

    Jody Senior Member

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    Jody submitted a new blog post:

    When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS

    Is December getting to you? Jody Smith shares some thoughts on some of the struggles that all too often attend this time of year ...

    [​IMG]

    The holiday season just doesn't live up to the hype, especially for the chronically ill and their caregivers. You people with ME/CFS know all too well what I'm talking about.

    I am one of the lucky ones, and I know it. My symptoms are generally mild and while they keep my life small, I'm able to do more than many who have ME/CFS.

    Today I drove for 20 minutes to a shopping plaza and picked up a few things for Christmas, then drove back home. For some people, this sounds like no big deal but for many in the ME/CFS community, such short jaunts are not possible.

    Maybe there's no car, or you aren't able to drive it. Or you're too ill to even be a passenger. Maybe there's no money for gifts -- maybe there's no money for food or bills either. Maybe you're finding it a major challenge trying to lift your head off the pillow.

    Lots of us are isolated during this holiday season. This can be because our friends or families have drifted away and we are alone in the world. Or maybe friends and family are around, and as involved as our illness allows them to be -- but sensory overload from too much noise, too much visual stimulus forces us to keep them at a distance.

    Conversation -- speaking or understanding -- may be difficult or even impossible. And unless you have ME/CFS, you have no conception of just how utterly draining this can be. I could go brain-dead in about five seconds flat under the right circumstances -- if "right" is the correct term here.

    A lack of money, so often a close companion for those with ME/CFS, is stressful any time but it weighs even heavier this time of year, bringing with it an extra serving of guilt to someone who is already severely overtaxed.

    Parents fear that their children will be affected by a lack of holiday cheer or food or decorations. And -- forget about presents -- how much worse will it be in homes where their parent can't spend time in their presence?

    Being behind a closed door is terrible for the person who is ill. It isn't any better for the child or other loved one who must remain on the other side of that door. No mom or dad? Yeah, that's an awful scenario. And it happens. Oh yes. It happens.

    It's a tough season, in so many ways. And sometimes your impulse may be to just pull that pillow over your head and wait till all the supposed joyful celebrating is finished with. And, just maybe, that might be the smartest thing to do when things are too painful.

    I have been fortunate to have family that loves me, through all the years of sickness. But I also had a number of years when I couldn't really be part of things. Often I spent most of the family visits in my bedroom with the door closed, trying in vain to rest. I knew I was missing out on everything, but it was more than I could physically and neurologically handle.

    Sometimes preparations before the holidays sent me plummeting over the edge, and I'd be vibrating and dragging myself in full crash mode through several days of "festivities." And I would pay dearly for the attempt over the next couple of months, crawling up out of my Christmas crash.

    This year, I am dealing with some mild(ish) symptoms. I feel shaky, my breathing is labored, I'm dealing with some vertigo and my brain is ... lumpy. Slow. Feels stunned.

    Something weird settles in my chest when I try to focus very hard or work out details. When I walk I am a bit slow, with a tendency to veer a bit left or right if I'm not concentrating on it enough. Doing things with my hands is awkward, and leaves me for some reason wanting to gasp for breath.

    Yay December, right?

    After I came across Phoenix Rising, things changed for the better during this time of year. I'd like to be able to say that Phoenix Rising helped to alleviate some of my symptoms -- but that wouldn't be true. It did however alleviate much of the loneliness and isolation, and hence some of the gloom.

    During times when I couldn't be with those I loved here in my "real" life, if I could read with any kind of comprehension and type with even just a few fingers, I knew there were people waiting for me at Phoenix Rising. Knew they were waiting because hey -- they were at home and isolated too.

    When the rest of the world was busy with festivities, I could drag myself to my computer knowing I'd be welcomed by friends who understood what I was going through, knew how I was feeling, and who went out of their way to bring healing and reassurance and light.

    The first December that happened for me was eight years ago, and some of the friendships formed back then are still important even yet. We know how hard this life is. We know how hard this month can be for so many of us. And that makes so much difference. That sense of community fills in so many of the empty spaces in so many of our lives.

    I wish I could ensure that every one of us could have a time of joy and love and security. I can't make that happen. But I can thank you all for being part of this global community, for bringing all kinds of light to its members, and for warming hearts and easing fears.

    Thank you for being such an important part of my life, and of the lives of so many around the world. And in any and every way it might be possible, I wish you a peaceful, prosperous, healthy and happy holiday season.

    Photo: Pixabay

    Continue reading the Original Blog Post
     
    Last edited: Dec 23, 2017
  2. EsetIsadore

    EsetIsadore

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    Thank you for writing this, Judy.
     
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  3. Jody

    Jody Senior Member

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    I'm glad you liked it, EsetIsadore.
     
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  4. Sushi

    Sushi Moderation Resource Albuquerque

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    Thanks Jody, Great!
     
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  5. Jody

    Jody Senior Member

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    My pleasure, Sushi:)
     
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  6. Basilico

    Basilico Florida

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    Thank you for writing this. A good reminder that we are not as alone as we might think we are.
     
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  7. Jody

    Jody Senior Member

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    Basilico,

    That was one of the main reasons I wrote the article. It's so easy for the isolation and limitations overwhelm us. It helps to be reminded that there are other people out there who understand, and who care about us. Just a finger tap away.
     
  8. Sushi

    Sushi Moderation Resource Albuquerque

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    Really good point! Sometimes the best medicine is just to know that others are with you, are in the same boat and paddling through the same waves. I got sick before the internet and forums--life was a whole lot harder then--I didn't know what was wrong with me, no one around me understood, and I didn't know that there were any others "like" me.

    Thanks everyone--if we can walk (or crawl) together, even as slow as snails, we can look left and right and know that we are normal, in our own special way, and in a community. :hug:
     
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  9. Jody

    Jody Senior Member

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    So true, Sushi.

    I also was sick for some years before finding Phoenix Rising. And it was finding PR that led me to others for the first time. People, and information and encouragement. And joking around and talking about the little things and big things of life that outside of a few family members, there had been nobody to share those things with for years.

    This community is significant. It has substance and mass:) It takes up a lot of space and it does a lot of people a lot of good.
     
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  10. Sushi

    Sushi Moderation Resource Albuquerque

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    And thanks to you we have the Community Lounge, where we can laugh about dropping our supplements into the water glass instead of our mouth! And much more, a place to goof off together. :)
     
  11. Sushi

    Sushi Moderation Resource Albuquerque

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    [​IMG]

    I live in co-housing in the Southwest and tomorrow we will be making these luminarias to light our paths.
     
  12. Jody

    Jody Senior Member

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    Sushi, that sounds wonderful.I guess I picked the right image for the article then.:)

    I did a lot of searching. I know that we have people who celebrate Christmas and Hannuka and who knows how many other winter celebrations, and then people who don't observe any of them. We have people around the world, so for some it's winter, some it's summer ... I wanted something that would be as inclusive as possible. Plus I wanted it to be beautiful:)

    This image spoke stillness to me, at the same time that it was light in the darkness, and we always need that:) And it was a lot of them. Not just one light but many small lights that quell the darkness because they are together.
     
  13. Jody

    Jody Senior Member

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    lol Oh! but it's nice to be remembered that way. Setting up the Community Lounge was ... 7 or 8 years ago I think. We got it because ... well, because I wanted one. I needed a place. It's funny, when I wrote that bit in my response to you about being able to laugh and talk about the little things ... I was thinking about the Community Lounge:) I think I spent all my time there for a long time:)
     
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  14. Sushi

    Sushi Moderation Resource Albuquerque

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    You really had a good vision there. No matter how crappy we feel, the Community Lounge is a place to "be"--even if it is on the "Burnout Bench."
     
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  15. Jody

    Jody Senior Member

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    I can't take credit. I needed something -- and as it turns out, a lot of us needed it. I'm just glad we could have it.
     
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  16. Misfit Toy

    Misfit Toy Senior Member

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    Thank you. I have had great help from people here on PR and I am so grateful. Many here get it beyond anyone I know in the flesh.
     
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  17. Jody

    Jody Senior Member

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    Thanks Misfit Toy. We have been pretty lucky to find this place and these people.:)
     
  18. Eneia

    Eneia

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    Same here, I wished I had all we have now when I was a teenager and thought I was the only person in the world who had this!

    Happy holidays to everyone, whatever it means for each of us.
     
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  19. Jody

    Jody Senior Member

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    Eneia,

    Boy do I know what you mean. My early days with it were lonely and terrifying too. Happy holidays to you.:)
     
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  20. Sushi

    Sushi Moderation Resource Albuquerque

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    Luminarias on Christmas Eve in a local cemetery.
    cemetery luminarias.JPG
     
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