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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I am so sorry, jimells for all hat you are going through. I really hope you finally get your disability decision and can find a way to make it financially. My decision took 3 1/2 years and I thought that was a long time but 5 years is absolutely horrible!

Forbearance and jimells, I fear I was a little misleading in that I didn't explain better. Some of my family would visit me but I have been too sick for years to tolerate any company at all. Even phone conversations are too much for me. Plus my Mom is ancient and lives in an assisted care facility. She badly wants to see me but can't. It breaks my heart to know that she has to live with he knowledge that she will never see her daughter again, just as I will never see her again. My one sister does drive 3 hours to see me, but she can only stay for about 30 minutes. She does it a couple of times a year anyway. So I do have more emotional support than so many others. But other members of my family don't understand or believe how sick I am so I understand that pain, too. I just learned that my 10 year old niece doesn't remember me and her older brother just unfriended me on Facebook. That hurts. I feel as if I am slowly being erased.

Anyway...I wish the best to all of you whose lives have been interrupted by this horrible condition. It helps to know that others understand but it also pains me to know that others are as sick as I!

Oh, and Ahimsa, I really want that pi pie. It looks deliciously nerdy.

 

god to be atheist sometimes haaaaaaaaaah

 

Oh, and Ahimsa, I really want that pi pie. It looks deliciously nerdy.

What's funny is that I found several examples of pies online that were decorated with pi (either symbols or digits or both). But this photo looks to me like a cake (a cheesecake is a cake, right?) not a pie. So, that made me laugh even more. I like cheesecake more than pie.

 

I have been reading this thread all along, but haven't posted till now as I've been dealing with a teensy relapse since just before Christmas and have been trying to pace myself. So far so good. Will now begin responding to everyone who talked to me here.

 

Great post, Jody - very timely!

Thanks Sasha. This time of year, these types of thoughts are in most chronics' minds I think.

 

Nice to see Jody - one's whole way of life is so much changed and much courage needed living with ME. Happy Christmas to one and all though lying in bed may be a big part.

Living with ME is only for the courageous, I think, Enid. If we didn't start out that way we must become that way whether we like it or not. I hope you had a good Christmas, and that plenty of rest was part of it.

 

Thanks Jody. Yes, the online community definitely helps ease some of the holiday stress. It's a blessing to be able to relate to others in the same boat.

Lowering expectations has helped me a lot. I usually spend X-mas alone, because I can't be around my partner's family, all of whom stink of a whole assortment of toxic fragrances. Yucko! I don't care for the isolation at all, but I prefer it to getting sick with a major toxic reaction. And honestly, they're not that fascinating to me anyway.

Last year I did laundry and took a bath on X-mas, and it was actually quite pleasant. We'll see what I feel like doing this year.

At this point, X-mas is really just another day on the calendar. The days I really feel like celebrating are the days when I feel good, better, or just okay. Those are the days that deserve a REAL party.

It sounds like you've been able to deal with Christmas, in a way that works for you, db. I'm glad for that.

Our kids come over off and on over a few days, which is as much busy-ness as I can handle. I used to send out dozens of Christmas cards before I got sick, and really enjoyed the whole kids and Christmas hectic thing. After I got sick though ... well you know. I don't send out Christmas cards anymore. We have really streamlined things over recent years to make things more manageable and less likely to cause a relapse. This year we almost made that goal.

 

Thanks Jody;
I do hope folks here have found a way to manage this holiday time.
In past years, I would hole-up alone and watch movies or televison. ( Some channels run marathons. A few years ago, there was a " Mad Men" marathon I enjoyed, although it's kind of grim.)
I admit that I prefer alot of time alone, but there can be loneliness during the holidays, even for us loners.
If I can have a limited amount of time with company, even if they are annoying, it can be a welcome distraction, in a way. Then I can return to my solace with appreciation.

This year, my husband and I will travel to see my mother and her husband. I've been trying to prepare for this...don't know how, really. ( thought-blocking, denial, hope) We do have a plan B to quickly leave a bad situation. In the past, I was slow to realize when it was time to leave, or flee. Hope to improve that sense.

I feel for folks who would like company for the holidays--I'll be thinking of You.

Hi Crux,

There are times when a love of solitude can really come in handy. I hope that things went okay with the visit to your mother's. Hard to prepare for such things, people can be unpredictable, even when you have a pretty good idea of how things might go.

 

Jody

Thanks for the great article--you go right to the heart of it without trepidation!

Maybe we can have a virtual party here.

Best wishes,
Sushi

Hey Sushi

Trepidation? Nah. I know this topic and I have a fair idea of how many people in our community feel. Some of us have rehashed this subject over the years -- many of us have done it here with the same friends over the years -- and for those who have just been introduced to this life, well, it can help to have things talked about in the open.

A party would have been great! I was not really up to much beyond juggling my kids over the holidays so if there was a party I missed it. But there is no reason we can't have a party whenever we like. Right?

 

Thanks, Jody!
It is always good to be reminded that there are other people suffering, other people willing to commiserate, other people who KNOW firsthand what it means to struggle with ME/CFS. It is good to be reminded that I am not as isolated as it sometimes seems. Merry Christmas to you, too!

Hi Liz

You were and are by no means alone. Knowing that doesn't make the isolation go away but it helps to deal with it, I always found. I hope your Christmas was a good one.

Jody

 

I hate Christmas, and relish in the role of Grinch. I won't beat around the bush. Yes, I as a kid, liked all the gifts and the candy and and all that crap. But it was such huge adrenal, emotional stress. I would have dumped the whole thing in the ocean at 12. Christmas sucks.

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

Hi MishMash

Sounds like you might have been one of the younger ME/CFS folks who have early memories of exhaustion at Christmas. Now, those other holidays are a whole different thing.

 

First year that I've had an understanding of what Christmas is about. Merry Christmas.

Thank you Lord Yeshua.

Jarod,

It sounds like you were looking forward to Christmas this year, despite illness. I'm happy for you.

Jody

 

I just hope I won't receive a visitation from 3 ghostly figures...that would be the Dickens.

Christmas stress hasn't squashed your sense of humour.

 

Thanks Jodie.. have a good xmas to you too.

This year, its another year where the xmas cards just arent going to go out. Ive learnt a long time ago not to worry if those cards just dont get out.

This year.. my mum, dad and grandmother wont be getting any present at xmas as I didnt have the time (short of time with the strict pacing and resting I need to do) to collect the family photos and turn them into calenders as I'd planned to do for xmas. Hopefully I'll get them done by Easter and they can have presents there instead. Im celebrating thou that Ive managed to get the xmas presents (brought things throughout the year when I saw things when I was doing basic food shop) for my nieces, nephews and grandchildren so I will have those done (thou they dont always end up getting wrapped).

Today after a couple of weeks of trying to sort it out, II finally found a family member who can pick me up and take me to the family xmas do (so I wont be sitting here home alone, upset due to not being able to get there).

I hope everyone else has at least an okay xmas this year.

Thanks Tania

Me too, no Christmas cards this year. Again.

We have had very thin Christmases over the years, having only a few dollars to spend on each kid ... making stuff (knitting scarves and hats one year for each kid and that was it ... still, at least it was something. but not much fun for a kid).

I'm glad you found a ride to the family get-together. It can be exhausting but so lonely otherwise. I hope it went well for you.

Jody

 

Hey Sushi

Trepidation? Nah. I know this topic and I have a fair idea of how many people in our community feel. Some of us have rehashed this subject over the years -- many of us have done it here with the same friends over the years -- and for those who have just been introduced to this life, well, it can help to have things talked about in the open.

A party would have been great! I was not really up to much beyond juggling my kids over the holidays so if there was a party I missed it. But there is no reason we can't have a party whenever we like. Right?

We had a party--a call-in, log-in "Go to Meeting" with real voices!

Sushi

 

We had a party--a call-in, log-in "Go to Meeting" with real voices!

Sushi

That sounds great. I hope it was fun.

 

This year i am skipping Christmas all together. I am pretty sick these days, have to assemble my next meal over 2 days (shepphard pie)- there should be leftover until Xmas.

Some days are worse than others when it comes to feeling isolated and lonely. Being locked out of FB has not been helpful. It can get quite painful, but this too shall pass. I will try to phone an old friend or family every other day, when able.

Best wishes to everyone.

Hi Kati

Good planning on a meal that will do you for a couple of meals, that helps to conserve precious energy.

You're locked out of facebook? I hope that is temporary. Facebook fills some empty spots for me.

Best wishes to you.

Jody

 

I am having a tough time because my house is a cluttered mess and I'm too sick to attend to it. The horrible sin that I committed was saying I wish that I could decorate this year. Well relatives planned a day, I was bedridden, planned another day I was still ill told them to stay away but they came over anyway armed with pizza and dessert and got me out of bed to go up in the attic and hand down boxes of Christmas stuff. "Just direct us and we'll get it done". Yes I directed and directed until the words didn't match with the items I was talking about. After 7hrs, they ate twice asked me 50 questions as simple as where's the knives, can you make me hot chocolate, why does your faucet turn on so hard?.They finally left after doing many things but the fact remains they left my house a mess, the tree incomplete, boxes out and a few that never made it down. Now I ask you, should a manger be sitting out without any figures around it like someone yelled "cut"?
Needless to say I barely moved for three days and when I complained about the state my body was in, I was told to appreciate what was done and suck up the pain and quit cursing so much, they were tired too. So there you have it, a big family with little understanding and another Christmas spent in bed. Don't bet
on them coming back to put the mess away, one took 10 days after the "visit" to check on me.

PNR,

Sounds like a nightmare. I'm so sorry this happened to you.

 

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?

Jimells,

That is horrible. What an awful Christmas "tradition" to have to deal with.

I understand the feeling, I have often been shocked at my own experience, if it hadn't happened to me I would have not believed it was possible. Even with the fact that these things happened to me it still often seemed impossible.

Feeling betrayed and abandoned is an enormous side effect of being chronically ill. It is sometimes, I think, one of the tougher ones to deal with.

 

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.

Mercy,

It is hard to fathom how people can just overlook us and miss the whole point sometimes. Familly can cause a great deal of pain when they act like nothing has happened to us, or like we are somehow not here. The only thing I know to do about that is to turn to the community that understands, like this one.