Dealing with the holidays

Nanders

Member
Joined
Nov 14, 2019
Messages
19
Reason
PALS
Diagnosis
11/2019
Country
US
State
AZ
Hey Everyone.. I know I’m new to the group.. but it saddens me to see my ‘new friends/family’ reacting to each other this way.
OUR decisions, feelings & reactions are just about the only certain thing we can have ‘control’ much in this process.. no matter what title we have.
Depending on circumstances they can change from moment to moment.
I’ve been watching my youngest son, who still isn’t talking to me about my Dx came by to pick up the family tree ornaments yesterday & sent me a pic later of the decorated tree.
Im devastated that I can no longer put up the holiday decor, cook all of ‘moms’ famous dishes or help prep TDay next week.
Ive considered not going because I can’t even cut my own food and flip it frequently.
But then the next minute I think it’ll be ok.. it is what it is.. & I go back to tears & not wanting to celebrate at all.
To be honest I’d really rather be with all of you.. because you get it... all if it, good, bad & everything in between!
Tolerance, respect & love.That’s what we all want & need.
Love & hugs to everyone!!
❤ Nancy
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,833
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Mod note: Above post was moved to the general forum because I think this is a great topic, deserving of its own thread. PALS, CALS, and those who have lost loved ones often find the holidays difficult.
 

nona

Forum Supporter
Distinguished member
Joined
Oct 1, 2018
Messages
205
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
Nancy, you are not alone. the holidays are hard. I dread them because I not only can't provide and participate, but I feel like I've changed it for everyone else, too. I can't travel to see my sisters, and my friends' homes are no longer accessible. It's hard to sit idle and watch the world in its hustle and bustle. But if you can go this time, go. You have ALS, and your family is touched by it too. My father described it as PTSD. Seeing you will help them understand. Let someone learn to feed you, even if you have a little something ahead of time and even if you don't linger. There will come a time when it's more challenging to get out so take advantage now. It sounds like you have a close family so I would imagine it would be emotionally hard for you to sit it out entirely. Just my two cents. Obviously you have to do what feels most comforting to you.
 
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Trixie80

Active member
Joined
Jun 21, 2014
Messages
88
Reason
PALS
Diagnosis
03/2014
Country
CA
State
BC
i felt the same way when I was first diagnosed. It is hard to be with people, even family, who don't have als.
I made myself go to all the family functions I could, and now that I can't go I am glad I went when I did.
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
123
Reason
CALS
Diagnosis
1/2015
Country
US
State
TX
Things have changed, but someone said to me today, it’s about being with the ones you love and not about the trappings. It’s about the love. It sounds like you have given to others, let them give to you.
 

Nanders

Member
Joined
Nov 14, 2019
Messages
19
Reason
PALS
Diagnosis
11/2019
Country
US
State
AZ
Thank you everyone.. I'm still really struggling with all of this overall.
My daughter called on her way home from work today and was overwhelmed with having to pick up the kids, still pick up some groceries for Thanksgiving ( she's been having migraines last week so didn't get there earlier ) and start prep. Thankfully my youngest son who cooks is making some side dishes & my older son picked up a ham. There will be 11 of us..
I have been the one who helps with the kids.. Extra grocery shopping and we've cooked together the last few years. I've got the car seats in my car, pick them up if mom/dad are running late or if I ( Bama ) want to get them early for a stop for ice cream or if they have early release... I was doing all of that 8mos ago. Now I can barely feed myself or walk without assistance & driving is long over. I had just redone my guest bedroom & bath for them a month before I went downhill. All the plans... It's kind of all hitting me now.
 
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