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Facing Christmas With the ME/CFS Community at Phoenix Rising

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by Jody Smith


Christmas can prompt intense mixed feelings for those of us with ME/CFS. Those of us who were not stricken in our youth may have some wonderful memories of the holiday season. This can prompt anticipation and longing, accompanied by dread.

Anticipation may be triggered as an automatic desire for a repeat performance of those early experiences. Longing stirs if this is coupled with the realization that we are not in a place where those earlier times can be repeated. And dread strikes the failing heart if Christmas as we knew it will not be happening again this year, and possibly will never be the same again.

Our young sick ones may not have many early fuzzy memories associated with Christmas. Perhaps as far back as some of them can remember, the holidays were always a treacherous time of too much activity, squeezing them dry of their diminutive store of energy. Maybe it was always a difficult time where they disappointed friends and family - and themselves - by an inability to jump into the family celebrations. The end of Christmas has perhaps always been welcomed with a collapse into bed for months of dragging recuperation.

Those with families may walk the emotion-fraught tightrope as we try with all our limited might to provide an environment and experience for our children approaching a happy Christmas time. Do we spend our diminished energies by taking part in holiday season activities, knowing we could be face-down on our beds come Christmas morning ... or sooner? Or do we conserve our strength by streamlining and cutting out all but the basics, hoping that our presence with our families will be enough for them, and for us?

Those with families we won't be able to see are seeing ghosts of Christmas past, in an empty bedroom, with or without Christmas cards from people we may never see. If we have no families, Christmas is a hollow, eviscerating loneliness underscored by the sense that the rest of the world is in a warm embrace with friends and family. We know with our rational minds that this isn't actually the way it is for plenty of healthy people. We may remember from our own experience that Christmas often was a headache that didn't live up to its press.

We know that everyone is prone to the stress and pressures and unrealistic expectations fueled by this hyped up time of year. We know that many "normal" people get worn out, run out of money, and can't manage to touch all the bases considered essential to the holiday season. Family members fight or avoid each other. People eat too much or drink too much and drama can rise up like a soap opera.

But we also know that we would be more than happy to trade places with these stressed-out people who will recuperate after Christmas is over. Unlike us.

A place like Phoenix Rising helps. Being able to talk to other people who know what we are going through eases some of the pain and isolation. Being able to vent our unhappiness, anger and fear about being trapped in this situation can be done with others who sympathize, whose feelings we don't need to worry about as we would with the people who are letting us down or who we are letting down.

Threads about the holidays and what they do to us begin to proliferate, our posts alternate between complaining or weeping about the wounds Christmas causes or re-opens, and talking wistfully about what we used to love about it.

Questions arise -- How do you handle the requests and pressures other people lay upon the chronically ill? How do those that are well enough to get out, and who have some money to buy gifts with, manage to accomplish these Herculean feats? How do you shop if you can't drive? How do you handle stumbling through the stores, and counting out money? How do you work your recovery from the sensory overload?

And how do you deal with the fact that the people you know don't seem to understand that you are ill -- ill -- ILL this time of year? How do you forgive? Or do you?

The virtual gathering of other people with ME/CFS that happens here on holidays like Christmas brings some relief to the feeling of being alone and cut off from any caring on the face of this earth. Here are people with whom we can share our griefs, our nostalgic recollections of happier times, and our hopes that some day, they will come again.

To everyone at Phoenix Rising, may this holiday season bring you some peace and joy, and may we help each other through it all as a family and a community.




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Thank you, Jody.
I have not seen my family in six years because I am too sick to leave my house and they all live in a far off state. Life goes on for them, filled with births (I have a 6-year-old niece I have never even met) weddings, birthday parties (my Mom is 91 and I am unlikely ever to see her again). And then there is Christmas. My family is all together celebrating as usual, while I try my best to ignore the whole thing. I say try, because it never works. Life goes on as a family for them, but I feel like the poor orphan in a Dickens novel, with my face perpetually pushed up against the glass wondering why my life seems to be pretty much finished.
 
When I look back at all that has happened, particularly in the past three years, it's hard for me to believe I'm not making this stuff up. How could all this happen to one person? If I lived in Samalia, this would be business as usual. But I don't. I live in the richest country in the world, every day I'm told "We're Number One!!! The Geatest Country Ever In The History Of The World!!!"

Number One in what: cruelty? callousness? greed? destruction? death by drones?

That stinks. I'm really sorry to hear your plight. All those at the same time would drive my stress level through the roof. One would be enough.

I'm praying for you. I haven't decided which supernatural diety yet, as I am not entirely religious. But I will think about folks in your situation. Best of luck.
 
Jimells, I emphathizes with you. What has happened to you in three years is common especially to us. I wrote about decorating demons because it hurts but is still frivilous. In the past 4yrs, I've moved to a one floor after 30years in an old house that was paid off. I used the equilty as down payment on the new place but the housing market declined and I couldn't sell the old home. It took 3yrs to go in foreclosure, my credit rating tanked, my therapy dog died prematurely, I broke my ankle, my insurance dropped me, my retina is detaching, family members helped monitarily then stopped because I wasn't informing them enough and I have to jump my car everytime I use it. When I fill out my disablity or hospital papers or pay bills my head and hand shake so bad I thought I had Parkinson's, just essential tremor I'm told. I'm wriing this not to compare miseries but to pat us both on the backs for even surviving. We are heroes. Try and have a Merry Christmas. God Bless You.
 
I hate Christmas, and relish in the role of Grinch.
- If I turn my head and squint sideways, I think I can see the connection. :thumbsup:

Untitled 2.jpg

Borat picture (http://images.starpulse.com/Photos/Previews/Borat-movie-08.jpg)
Grinch picture (http://www.dragoart.com/tuts/pics/8/10115/how-to-draw-the-grinch,-the-grinch.jpg)
 
Thanks, Jody. This really hit home for me.

I did receive a "Christmas present" from the local DHHS office: I'm being kicked off Medicaid, again. This is an annual occurance with these dirtbags. In the end they are forced to relent, at huge physical and emotional cost to me. This is in addition to dealing with the bankruptcy petition, a lawsuit to seize my trailer home, an upcoming Social Security disability hearing (after waiting five years), unpaid property taxes, a leaking roof, no transportation, and extreme poverty.

When I look back at all that has happened, particularly in the past three years, it's hard for me to believe I'm not making this stuff up. How could all this happen to one person? If I lived in Samalia, this would be business as usual. But I don't. I live in the richest country in the world, every day I'm told "We're Number One!!! The Geatest Country Ever In The History Of The World!!!"

Number One in what: cruelty? callousness? greed? destruction? death by drones?

Hey Jim.

Don't know what quite to say other than I wish I could help.

There are still good people out there. Hang in there. Things will get better for you.

Jarod
 
- If I turn my head and squint sideways, I think I can see the connection. :thumbsup:


Borat picture (http://images.starpulse.com/Photos/Previews/Borat-movie-08.jpg)
Grinch picture (http://www.dragoart.com/tuts/pics/8/10115/how-to-draw-the-grinch,-the-grinch.jpg)[/quote]

index.php


He is my neighbor Nursultan Tuliagby. He is pain in my as******s. I get a window from a glass, he must get a window from a glass. I get a step, he must get a step. I get a clock radio, he cannot afford. Great success! Jagjemash!!
 
Jimells, I emphathizes with you. What has happened to you in three years is common especially to us. I wrote about decorating demons because it hurts but is still frivilous. In the past 4yrs, I've moved to a one floor after 30years in an old house that was paid off. I used the equilty as down payment on the new place but the housing market declined and I couldn't sell the old home. It took 3yrs to go in foreclosure, my credit rating tanked, my therapy dog died prematurely, I broke my ankle, my insurance dropped me, my retina is detaching, family members helped monitarily then stopped because I wasn't informing them enough and I have to jump my car everytime I use it. When I fill out my disablity or hospital papers or pay bills my head and hand shake so bad I thought I had Parkinson's, just essential tremor I'm told. I'm wriing this not to compare miseries but to pat us both on the backs for even surviving. We are heroes. Try and have a Merry Christmas. God Bless You.

I am so sorry to hear about your troubles. You don't deserve all that. You are a survivor. Words don't help much. But I'm keeping you in my prayers. (unfortunately, I'm still picking the supernatural diety). All the best, and here's hoping it starts getting better (the housing market is starting to pick up some parts of the country)
 
So MIshMash--If you are seriously looking for a supernatural deity, you might consider the magic mushroom, amanita muscaria. Apparently there is considerable evidence that this mushroom was used in ancient ceremonies by shamans in the Far East. In Siberia, both the shamans and the reindeer were known to eat these mushrooms. Man and beast alike hallucinated.

The resemblance of the mushroom to Santa's outfit is a bit uncanny... don't you think?

Amanita_muscaria(tfl-c0229-35).jpg




http://news.yahoo.com/magic-mushrooms-may-explain-santa-flying-reindeer-210334389.html

 
Thank you, Jody.
I have not seen my family in six years because I am too sick to leave my house and they all live in a far off state. Life goes on for them, ... [while] my life seems to be pretty much finished.

:( Why does it never occur to them to go visit you?

It's almost like our families, and society as a whole, have made a conscious decision to punish us for being sick. A few months ago my mom called to tell me my aunt, a couple of cousins, and one of my sisters were all at her house in southern Maine. They were going to Portland to have a nice seafood dinner at a waterfront restaurant, while I was stuck at home, probably eating lentils and rice. My aunt and her husband had travelled from Virginia, about 800 miles. Could they have travelled another 200 miles to visit me? Nope. Too far.
 
I'm so sorry, Jim, that you are in such a difficult place.
I'm so sorry, Mercy about your family's callousness.

It does seem like sometimes my family acts like my illness is a choice I am making, and so they don't feel bad about leaving me out of family events. It's as if they have written me off as anti-social or something. If only there were more compassion in the world!

Forebearance
 
My favorite holidays: Cinco de Mayo (more tequila, bartender), 420 (don't bogart that!) and April's Fools Day.

My favorite holidays are:
  • Winter Solstice (Dec. 21)
    The days start getting longer (at least for those of us in the northern hemisphere), so, hooray for that! I can see why the pagans celebrated this holiday. Of course, while I like sunlight, I don't like the heat that sometimes comes with it. That's why the Pacific NW is a good choice for me. :cool:
  • Pi Day (March 14 which is 3/14 in month/day format)
    Who doesn't love pie?

Pi_pie2.jpg

  • Pi Approximation Day (July 22 which is 22/7 in day/month format)
    Yeah, I'm a big ol' nerd. :D
 
So MIshMash--If you are seriously looking for a supernatural deity, you might consider the magic mushroom, amanita muscaria. Apparently there is considerable evidence that this mushroom was used in ancient ceremonies by shamans in the Far East. In Siberia, both the shamans and the reindeer were known to eat these mushrooms. Man and beast alike hallucinated.

The resemblance of the mushroom to Santa's outfit is a bit uncanny... don't you think?

View attachment 4278



http://news.yahoo.com/magic-mushrooms-may-explain-santa-flying-reindeer-210334389.html

Somebody hijacked my username "Jarod" and starting posting in the comments on those articles in your link DreamBirdie. Very interesting, as I only use "Jarod" username on the ME/CFS forums.

What a bizarre coincidence it pops up right at the top of that link you posted.
 
When I was 4 yrs old ( 1954) I had to rest on the couch while my sisters ran around playing, decorating the tree. And yes, I felt left out, lonely. My mother and older sister worked hard to make me feel included. They still do. My adult daughters do, my soninlaw , his mother does. They are all amazing, incredibly kind. But yeah, sometimes you want to do for others. That is the greatest joy. I miss that. Great article Jody. Ty, Merry Christmas. <3
 
The pagan holiday associated with Christmas was YULE.

"Yule or Yuletide ("Yule time") is a religious festival observed by the Northern European peoples, later being absorbed into and equated with the Christian festival of Christmas. The earliest references to Yule are by way of indigenous Germanic month names (Ærra Jéola (Before Yule) or Jiuli and Æftera Jéola(After Yule). Scholars have connected the celebration to the Wild Hunt, the god Odin and the pagan Anglo-Saxon Modranicht." http://en.wikipedia.org/wiki/Yule

The return of the sun to the northern latitudes was a big deal for our ancestors. They brought greenery (like evergreen trees and branches into their homes), to remind them of the cycle of everlasting life. That's where the X-mas tree tradition began. It makes a lot more sense to me than shopping til you drop.

1222-solstice_full_600.jpg
 
"We're Number One!!! The Geatest Country Ever In The History Of The World!!!"

Number One in what: cruelty? callousness? greed? destruction? death by drones?
Number one, in all things beautiful if, and only if, you have money to pay for it. As for death by drones, that would be wishful thinking if I went that way, and not really how society likes to take care of business. They don't like the sick and destitute, but they also do not want that flavor of life to taint the marvelous fountain and feast that is presented to those who taste no ill. We are upsetting to them, but so is the civility needed to view human suffering. So if we get to the point of hopeless destitution, there is the bureaucratic rug of "social services" that exists to sweep us under and wound up in its tangled fabric. As I look at these things, I feel that I have been lied to my entire life.