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Jrzygrl

Senior member
Joined
Feb 14, 2017
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751
Reason
Lost a loved one
Diagnosis
08/2014
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US
State
NJ
City
X
Well, I had a pretty epic meltdown this morning. Nothing all that significant happened, but boy did the flood gates open.

DH had just called me to get him up. He asked for a good morning kiss. As I layed my head on his chest for a hug, I just completely lost it. Sobbing tears. The kind where your whole body heaves and you can't catch your breath. The sadness of this whole thing just washed over me. I couldn't help thinking about all the dreams we have lost.

We both worked hard our whole lives, paid all our bills, raised 3 kids and tried to always do the right things. We were planning on retiring in a couple of years. We had hoped to travel and relax some. Maybe move somewhere warmer. Now that's all gone. I told him, I miss the old us. I want so badly to turn back time and somehow change this. I know I can't.

I'm not sure why it hit me so hard this morning. Maybe its seeing friends and family traveling and celebrating milestones. I wonder sometimes if being involved on social media is a good or bad thing for me. I like staying connected to friends, but find myself getting jealous of the freedom they have that has been ripped away from us.

I rolled him to his side and layed down next to him, wrapping his arm around me, in my bed, pushed up against his hospital bed, and we both just cried for a while.

Then he said he couldn't lay in bed anymore because his hip was hurting, so I got up, pulled up my big girl panties and got on with the day.

ALS SUCKS.
 
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Although we are at the beginning of this sad journey, your feelings mirror how I'm feeling tonight. Hard to understand how we got here. My best to you.
 
Jersey, Sassy and all, better to melt or bend, then freeze or break, that's for sure. I feel your disbelief (literally, still, nine years past dx). And even now, jealousy of others' first world problems, as ALS changed my life far beyond the loss of my husband.

Like the cliché says, you can't change the circumstances, but you can (outside of meltdowns and other necessary events) control how you respond. It won't be the mere fact of ALS that you remember in the years to come. It will be how you both lived as P/CALS, and no one is perfect in either role, but if you know you did your best by each other, it will mean a lot.
 
Aren't meltdowns like weather? No point in figuring out why now. Maybe it's just spring.
It's a good thing you're doing this together.
 
Jrzygrl - I so understand. Social media is a two edged sword. And not you are not alone feeling jealous or left out. You see vacation pictures or talk of it and you know that will never happen for you. You see weddings and graduations and all of those life milestones that you can’t take part in. It’s not easy and it doesn’t get any easier. It’s hard, every last bit.

I know we had all kinds of plans too. We too lived right, paid all our bills, worked hard and it hurts when you see others who maybe have done none or only some of the above going on and having a great time.

You are right ALS SUCKS. However, we have each other here. And we all understand. Have your cries, you deserve every tear drop. Then get up and move forward. It’s all we can do. And know I’m hugging your from a distance.

Hugs,

sue
 
Oh Jrzy....my heart breaks for you and every one that has to or has had to endure this awful disease. You have the right to have a meltdown when you need one. Your mourning the loss of what should have been. Hugs to you.

Laurie...you always seem to know the right thing to say to all of us. Thank you. ALS really does change your life beyond the loss doesn't it?
 
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