Holiday Blues

[dbel]

Although this will be my 4th Christmas since I was diagnosed, this Christmas will be the first where I have no use of my arms and legs. This will also be the first Christmas where I will rely on Tobii for communication and my peg tube for all my nutrients and fluids. Christmas was always my family's favorite time of year. I've always enjoyed decorating, the hustle and bustle of holiday shopping, holiday gatherings and all else that comes with the season. It's so hard for me to go from being a very active participant to more of an observer. I try to be grateful for all the wonderful memories of past Christmases but I still can't seem to shake this feeling of grief and sadness. Today my sons and husband were excited about starting to put up decorations and had Christmas music playing. Although I put on a display of excitement which I am happy that my family can still find joy during the holidays, I feel a disconnect inside if this makes sense. I was wondering what has helped others experiencing something similar.

 

[Nikki J]

I am sorry. It isn’t fair. Don’t know if it is possible of if it would help but when my sister was like you she went to a lot of Christmas performances with her family- dance, plays, concerts- and church if you are so inclined. Being an observer yes but the whole family was. I can remember thinking even for myself in early stage how nice to feel normal. If they will let you plan and direct the decorsting and other preparations will it help

 

[Sammy88]

I feel the same, just can't get into the spirit of xmas. Having a rig so no xmas dinner or chocolates . Can't even face the xmas films.

 

[dbel]

Hi Sammy, Hopefully we experience some Christmas magic to help us find some nuggets of joy during the holidays.
Hugs to you,
Donna

 

[KimT]

Hi Sammy, How have you been doing?

I can still walk around the condo but I get pretty down watching 80-year olds walk the beach and golf. My favorite thing to do is binge watch TV at night.

 

[Sammy88]

Hi Kim , you are so lucky to be able to walk around your condo. I can't walk or transfer now after my 3 week stay in hospital.

Have to be hoisted now. Also got a rig as I'm not eating. Know only to well watching older people do things that I can't......so jealous .

 

[Sppspp10]

@dbel It must be so sad and frustrating to have to grieve Christmas. Tradition is important and I can understand how terribly sad it must be to be unable to participate in yours... kind of an identity shift with Christmas. No advice or anything, I apologize. But I hope between now and Christmas you can identify some way to connect with Christmas on your terms.

 

[dbel]

@Sppspp10. Thanks for your compassionate response. I'm doing better. I think I just needed to accept my current situation so I can then move on to finding new ways to enjoy the holidays. By the way i loved reading your positive approach on the other forum.

 

[Sppspp10]

@dbel i would love to hear about your new ways to enjoy the holiday!
And thanks. Some days are harder than others but I like to try to stay positive. I worry that as my symptoms progress it’ll be very very difficult but I trust I will find new ways to be positive.

 

[Clearwater AL]

I try listening to Christmas music… it just isn’t there. Maybe it’s too early.
Ann is decorating the inside of the house with lights in the decorations…
I run the wires to the outlets. We have 15 white drop cords. Its taking a lot
longer than last year.

We have a 14’ Christmas tree, it took both of us to get it up… we were just
about to call our neighbor but we got it. Ann goes all out putting the lights on it,
400 big colored and white led lights inside the tree and 3,000 led twinkle lights
outside then the decorations.

It takes her 4 days to put it up then 4 days to take it down. This is probably
the last year for all that .Even she said, “This it too much” because age has
caught up to her too. Next year will be one those pre lit trees from WalMart.
If I am still here… her too, both of us are now into our 70s.

I used to enjoy helping, playing Christmas music on our stereo system… now
I can’t wait until it’s all done. My thought about it for now… whatever.

Maybe after Thanksgiving I’ll get some Christmas spirit.

Anyway, I hope all PALS and CALs find the spirit of Christmas in some way
or Happy Holidays as others may call it.

 

[KimT]

Oh Al, that tree is stunning. I have a four ft. tree and it fits on and end table. I also have a nativity scene that was a collectable and some Christmas gnomes. It takes me about three hours to do the whole thing. It's exhausting. I think if I had family, I would enjoy it more.