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Cammarak

Active member
Joined
Sep 24, 2014
Messages
77
Reason
PALS
Diagnosis
06/2014
Country
US
State
NY
City
Williamsville
Hey!! Seriously relieved to be doing so well--just had second annual round of testing (EMG, pulmonary, swallowing)and all was great(!!!!)but suddenly had a crushing "depression" .... not sure why--was hospitalized after bad fall and am currently moving out of home my children grew up in into a ranch --but I'm wondering if others feel the reality of this illness around the holidays? I'm surrounded by loving family and friends, but I feel somehow "cheated" or "lacking" --not sure of the word here...
 
Last year I was sitting on a probable diagnosis could still walk get up and down stairs and be fairly normal, and there was a chance of it being something else. I absented my self from everyone on Xmas eve and just sat and cried.
This year I have a full diagnosis can't walk, have trouble standing to transfer, and have had to move downstairs into a hospital bed in the dining room. I am sure there will be tears at some point.

I am normally a very upbeat positive person, I am surrounded by loving attentive family doing everything they can to help me. There will be special memories made this Christmas and joyful moments. But there will also be horrible low moments, I am prepared for it this year. Last year I felt guilty about feeling low I felt silly, this year as far as I am concerned it is going to be ok for me to have sad moments to feel bad about having this yucky disease. It's natural and all I can do is hope the lovely bits are bigger. Given the care I have from family and friends I have a sneaky feeling they will be.

Having to change your life because of the illness rather than because you want to is hard. I hope your Christmas gives you new lovely memories in your new home and that the holiday gives you more happies than sad.

Wendy xx
 
Wow--I feel like you get it--so much is so awful and yet I'm one of the very lucky ones who can still walk and talk and breathe--but every once in awhile I just feel like I'm going to lose it!!! I'm so conflicted--I have so so much to be happy about ;case in point: rolled out cut outs today and thought about how happy I am that my family still makes time to decorate them all together, while simultaneously bemoaning the fact that my arms were exhausted and I had to put off mixing a different batch of cookies bc I couldn't raise my arms. It's like I'm outwardly so grateful for all of this that I still have and yet secretly angry that I don't have it all anymore.
 
I see a counsellor from the hospice on a regular basis, she asked what I wanted out of the sessions. Basically I just wanted to be able to cry, whinge, and generally let all the petty irritations out, to let go safe in the knowledge that I wasn't going to distress my family. It has helped so much, I also have accepted that I needed to take a low dose of sertraline to help smooth things over a bit. We call them my happy pills.

Anything that can take the edge off the difficult side of this so I can enjoy what time I have with the family I have welcomed. I can still eat so there will also be a lot of chocolate helping me feel good too this year :) although your cookies sound nice too so I might have to persuade my daughter to make me some.......

Wendy x
 
My wife, Krissy, was my PALS. She was a picture of quiet strength throughout.

The holidays are the worst. I stay surrounded by people and I stay busy. I'll take a cruise or a trip to Europe if I can afford it. I see a whole lot of movies. It's been over five years. Still, when decorating the tree, I have to stop and find a private place to cry.

But the holidays, if I do it right, can be the best for me, my boys and their girlfriends. We work together and support each other--a lot--without admitting out loud that we are being deliberately supportive.

My Dad didn't have ALS. He went through the depression in Brooklyn and spent his 19th birthday carrying a rifle in Europe. He was a POW, then fought in Korea. A year in Vietnam did something to him--after that duty, he would spend dawn to dusk just staring across a lake, pretending to fish, with a flat beer in his hand. Later he died of dementia in the VA hospital, Krissy was a doctor there. She pronounced him in front of me. He told me an old Arab saying that summed up the attitude that kept him going each day: "I used to complain that I had no shoes--then I met a man who had no feet."

I'm actually happy you all allow me to participate here. I am surrounded by courageous people here.
 
Man, mike--that makes me feel more guilty!!! All in all I'm incredibly lucky and should just shut my mouth and not even think about feeling sad. I still have my family and many great friends and a lot of my health and mobility. So, Happy holidays and a joyous new year to us all!
 
Cammarak- I know that feeling too. And, yes, Christmas is a tough one. Having to give over to others the duties that I was managing with only a little difficulty last year makes it feel like even more of a loss.

Day to day, I can ignore the little tiny bites taken out of my abilities- but major events like Christmas just reminds me of what I could do a year ago. Like you, I feel ripped off. I think it's important to not feel guilty about lamenting loss- it's a very natural response, regardless of where you are compared to others. I go to a psychiatrist once a week to cut loose and vent so I don't feel the need to do that with my family.

Best

Fiona
 
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