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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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

Bluebird,

That had to be so tough, to be sick so young. I'm glad to hear that your family is there for you. I know you would like to be able to do things for them. I remember being in that position for a long time. As I have been recovering, I have been able to begin to do some of that but there is so much ground yet that needs to be regained. Just trust that your family knows you love them.

My son has ME/CFS, he's 22 and has been sick since he was 16. I know it chafes him that he can't do more for his family. But I for one am just happy to have him, and I know his heart. I am sure your family feels that same love for you.

 

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.

AFCFS,

I understand that feeling. I know my sick son (age 22, sick for 6 yrs) does too. We have both felt betrayed by all the things we thought about our society and about our extended family -- that in a crisis or a catastrophe that they would be there for us. To find out this is not so is heartbreaking and causes great anger and cynicism -- and understandably so. That they didn't realize the depth of the problems we faced at first is easilty forgiven. That all these years later that has not changed, not so easy to forgive. It has caused us to turn our faces away from the backs turned to us, and look for understanding and relationships elsewhere. Like here.

 

I was readin the responses here again and thinking just how incredible our responses are as they are so so like way out our experiences of what life is like for us. What's kind of scary..is that this is really our daily life too.

I was just thinking it would be great if someone did a book filled with shared experiences like that..eg it could be called something like "Throu Our Eyes. Living with ME/CFS" What christmas is like to us etc etc . so the real world can more easily see how it is for all of us. The responses here are so well written and gut wrenching.

Maybe a group book could be a combined fundraising and advocacy idea for PR?? a book and then sold throu the website and other places with all the money going to ME/CFS. I once read an Aspergers book from my library in which half the book was made out of online quotes on their experiences from Aspergers people on different life things, which people in a forum put together.

 

I did not join in with Xmas at PR because I joined in my usual scheduled internet support on second life. I did something different this year though, I cancelled Xmas dinner, and stayed in for a quiet day. As a result I was not totally wiped out at New Year and enjoyed a small New Year gathering a lot more.

 

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.

Thanks Jody;
Fortunately, things went okay with the visit. I've come to understand my mother's behavior from a different point of view now. After observing the change in my own thinking and behavior since I became so ill, I can see that many of her comments are the expression of her own condition. ( They're not always rational.)

Another great help for me has been my husband, who has become my advocate. It's taken years for us to develop this. ( I did have to take enormous efforts to bring this about. It started with self-respect. )

I hope everyone has survived this holiday season, unscathed.

I'm pretty tired, but glad that I haven't crashed. It's surprising, because there were some negative stressors. One of our elderly cats passed away while we were gone. It was a heartbreaker not only for us, but our caretaker, (niece), and the veterinarian. ( tough job, that)

I realize again that the holidays are still a part of the "life goes on" ; it's just more crowded and intense, with too many expectations.

I admit that it's a relief to return to our own routine. There's alot of peace to be found in the day to day rhythm.

 

Thanks Jody;
Fortunately, things went okay with the visit. I've come to understand my mother's behavior from a different point of view now. After observing the change in my own thinking and behavior since I became so ill, I can see that many of her comments are the expression of her own condition. ( They're not always rational.)

Another great help for me has been my husband, who has become my advocate. It's taken years for us to develop this. ( I did have to take enormous efforts to bring this about. It started with self-respect. )

I hope everyone has survived this holiday season, unscathed.

I'm pretty tired, but glad that I haven't crashed. It's surprising, because there were some negative stressors. One of our elderly cats passed away while we were gone. It was a heartbreaker not only for us, but our caretaker, (niece), and the veterinarian. ( tough job, that)

I realize again that the holidays are still a part of the "life goes on" ; it's just more crowded and intense, with too many expectations.

I admit that it's a relief to return to our own routine. There's alot of peace to be found in the day to day rhythm.

I know what you mean about the relief of routine. I am looking forward to watching some of the TV shows that bored me a month or so ago, simply because they are part of the routine. Having some quiet and walking my dog are great pleasures at the moment.