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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 … 

pixabay-lights-1088141_640

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

{ 30 comments… add one }

  • EsetIsadore December 23, 2017, 1:09 pm

    Thank you for writing this, Judy.

  • Jody December 23, 2017, 2:18 pm
    EsetIsadore

    Thank you for writing this, Judy.

    I'm glad you liked it, EsetIsadore.

  • Sushi December 23, 2017, 3:38 pm
    Jody

    Jody submitted a new blog post:

    Thanks Jody, Great!

  • Jody December 23, 2017, 3:40 pm
    Sushi

    Thanks Jody, Great!

    My pleasure, Sushi:)

  • Basilico December 23, 2017, 3:48 pm

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

  • Jody December 23, 2017, 3:51 pm
    Basilico

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

    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.

  • Sushi December 23, 2017, 3:51 pm
    Jody

    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.

    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:

  • Jody December 23, 2017, 3:55 pm

    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.

  • Sushi December 23, 2017, 4:00 pm
    Jody

    And joking around and talking about the little things and big things of life

    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. :)

  • Sushi December 23, 2017, 4:02 pm

    [​IMG]

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

  • Jody December 23, 2017, 4:08 pm
    Sushi

    [​IMG]

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

    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.

  • Jody December 23, 2017, 4:10 pm
    Sushi

    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. :)

    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:)

  • Sushi December 23, 2017, 4:39 pm
    Jody

    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.

    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."

  • Jody December 23, 2017, 4:41 pm
    Sushi

    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."

    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.

  • Misfit Toy December 23, 2017, 5:45 pm

    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.

  • Jody December 23, 2017, 5:58 pm
    Misfit Toy

    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.

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

  • Eneia December 24, 2017, 10:14 am
    Sushi
    Jody

    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.

    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:

    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.

  • Jody December 24, 2017, 10:30 am
    Eneia

    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.

    Eneia,

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

  • Sushi December 24, 2017, 10:14 pm

    Luminarias on Christmas Eve in a local cemetery.
    View attachment 25567

  • Gingergrrl December 24, 2017, 10:57 pm

    Thank you Jody for also starting the birthday thread tradition on PR which I got to continue (even though I am not doing it right now and three of us are now alternating months).

    This holiday season has to be the worst one yet for me but I am discussing in another thread and will not sidetrack this one!

  • Jody December 25, 2017, 7:49 am
    Sushi

    Luminarias on Christmas Eve in a local cemetery.
    View attachment 25567

    Oh Sushi! Thank you for sharing that.

  • liverock December 25, 2017, 9:23 am
    Jody

    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:)

    Wow Jody, this is bringing back memories of the early days of the Community Lounge when I sought solace in writing jokes after continually failing in my New Year resolutions, year after year, to start eating more chocolate.:)
    Thanks to you and all the Community Lounge members who pointed out the rules for eating,storing and protecting my chocolate from the grubby hands of others, I am now more resolute and a full blown Chocaholic.;):p.

    Thanks for the memories.:D:hug:

    The Rules of Chocolate

    • If you've got melted chocolate all over your hands, you're eating it too slowly.
    • Chocolate covered raisins, cherries, orange slices & strawberries all count as fruit, so eat as many as you want.
    • The problem: How to get 2 pounds of chocolate home from the store in hot car.
      The solution: Eat it in the parking lot.
    • Diet tip: Eat a chocolate bar before each meal. It'll take the edge off your appetite and you'll eat less.
    • A nice box of chocolates can provide your total daily intake of calories in one place. Isn't that handy?
    • If you can't eat all your chocolate, it will keep in the freezer.
    • But if you can't eat all your chocolate, what's wrong with you?
    • If calories are an issue, store your chocolate on top of the fridge. Calories are afraid of heights, and they will jump out of the chocolate to protect themselves.
    • If I eat equal amounts of dark chocolate and white chocolate, is that a balanced diet? Don't they actually counteract each other?
    • Money talks. Chocolate sings.
    • Chocolate has many preservatives. Preservatives make you look younger.
    • Q. Why is there no such organization as Chocoholics Anonymous?
      A. Because no one wants to quit.
    • If not for chocolate, there would be no need for control top pantyhose. An entire garment industry would be devastated.
    • Put "eat chocolate" at the top of your list of things to do today. That way, at least you'll get one thing done.
  • Jody December 25, 2017, 12:16 pm
    liverock

    Wow Jody, this is bringing back memories of the early days of the Community Lounge when I sought solace in writing jokes after continually failing in my New Year resolutions, year after year, to start eating more chocolate.:)
    Thanks to you and all the Community Lounge members who pointed out the rules for eating,storing and protecting my chocolate from the grubby hands of others, I am now more resolute and a full blown Chocaholic.;):p.

    Thanks for the memories.:D:hug:

    lol Liverock:) I'm glad you've strengthened in your resolve and I'm so pleased that PR has played an integral role in your increased strength and commitment. I appreciate that you've included the rules for those who may need a refreshing.

  • Jody December 25, 2017, 4:11 pm
    Gingergrrl

    Thank you Jody for also starting the birthday thread tradition on PR which I got to continue (even though I am not doing it right now and three of us are now alternating months).

    This holiday season has to be the worst one yet for me but I am discussing in another thread and will not sidetrack this one!

    Gingergrrl,

    I'm glad to hear that the birthday threads are still carrying on. Thank you!

    I'm sorry you're having a tough time. Take breaks, take naps, breathe. This too shall pass.

  • cgstar4 December 25, 2017, 4:14 pm

    thank u 4 sharing Jody

  • Jody December 25, 2017, 5:09 pm
    cgstar4

    thank u 4 sharing Jody

    Hi cgstar4,

    I'm glad you liked it.:)

  • Sushi December 25, 2017, 5:22 pm
    Sushi

    Luminarias on Christmas Eve in a local cemetery.

    And it was in the local newspaper today as it is such a Christmas tradition here:
    Lighting up memories at Mount Calvary Cemetery
    [​IMG]

    For most of the year, Mount Calvary Cemetery is a place of quiet, reverence and solitude. But each Christmas Eve, the memorial park bustles with laughter and prayer, quiet tears and the occasional jingle of bells.

    Hours before sunset, hundreds of people set to work decorating the graves of lost loved ones with luminarias and other holiday decor.

  • cgstar4 December 28, 2017, 10:10 am
    Jody

    Hi cgstar4,

    I'm glad you liked it.:)

    Hi Jody! ok!

  • Lipac January 13, 2018, 1:33 pm

    It's a bit late to reply, but this helped me so much. Unfortunately, my family isn't sympathetic.
    To them I have a flawed character; whether they're 7 or 87.
    I haven't ridden hours through the snow for a one day dinner and back again for years now; or done a baking marathon; or gone snowshoeing with my teen.
    ( All things I did just fine 30-40 years ago. It must be wilful)…

    Thanks for putting my experiences of 18 years into words.
    A small life, yes.
    A closed door, yes.
    Financial challenges, yes.
    Listening to people I rarely get to see, upstairs, having fun; downstairs with my heart breaking, alone in my room.

    This was the Best Gift I've gotten in a long time.

  • Jody January 13, 2018, 3:11 pm
    Lipac

    It's a bit late to reply, but this helped me so much. Unfortunately, my family isn't sympathetic.
    To them I have a flawed character; whether they're 7 or 87.
    I haven't ridden hours through the snow for a one day dinner and back again for years now; or done a baking marathon; or gone snowshoeing with my teen.
    ( All things I did just fine 30-40 years ago. It must be wilful)…

    Thanks for putting my experiences of 18 years into words.
    A small life, yes.
    A closed door, yes.
    Financial challenges, yes.
    Listening to people I rarely get to see, upstairs, having fun; downstairs with my heart breaking, alone in my room.

    This was the Best Gift I've gotten in a long time.

    Oh, my heart. I am so sorry to hear how things have been and how they are for you Lipac.I wish you love and light.