Don't know how to process this

[JennyC]

I'm having one of those moments where I just don't know how to handle this, how to process this....its still new, only a few weeks....part of me wants to cry right now but I really really don't want to feel the pain at the moment....it wasn't supposed to be like this but it is...

 

[Vincent]

The first couple of months can be a real roller coaster. There's every emotion you can think of, and some you can't. There aren't many diagnoses out there without some hope. ALS is one of them. All you can do is live in the moment. What does ALS mean to me today? What can I still do? Concentrate on that, and do it. But in the mean time expect a bumpy ride for a while. You are not alone
VIncent

 

[affected]

All I can do is offer you a virtual hug.

It certainly was NOT meant to be like this. I still sometimes say things like that to myself!

The first 1 - 2 months are the worst on the raw emotions I promise you that.
It's hard to explain how it gets easier on that rawness even while it doesn't get 'easier' in some other ways.

Vincent said it - he concentrates on what he has now.

It's actually something I've learned to do in my own life every day, both during and since ALS. All we have is now, nothing ahead is certain.

If someone not dealing with ALS said that to me I would shake my head and think, if only you knew. But we do know, and we feel your pain xx

 

[Nuts]

The only thing I found that helped in the early days was to come here. Reading other's stories and sharing saved me. One post in particular stayed with me: someone asked why me, and the answer was why not you. My life was charmed before ALS attacked my husband. Today I know that among families dealing with this disease, we are very fortunate. Your perspective will change over time--just try to focus on what you do have, rather than what you don't. That road leads to madness. Oh, and Lexapro helps me a lot!

Big hugs,
Becky

 

[soonerwife]

I completely understand what you mean... I feel the same way. My PALS was dx'd in December '15.

I feel so heartbroken. We have been married for 19 years this July. We were supposed to grow old together. Some days I feel very blessed that I have had 20 years with such a wonderful, caring and loving man. Other days, I am mad as hell that our dreams are being cut short and that this is happening to such a kind generous man. He doesn't deserve this!

Some days I cry and the other days I am putting one foot in front of the other and doing everything I possibly can for him. He has always wanted a jeep so he now has one. He wanted to go to Nashville, we just got back. The end of June, we are taking our 20th anniversary trip a year early and going to Hawaii.

I guess what I am saying is, we are going to have those days when we feel incredibly sad and cry... Especially when we are watching our loved one struggle and lose the ability to do what they previously could. That's ok.

On those other days, enjoy every moment you can and keep putting one foot in front of the other!

Hugs to all the CALS! This is my toughest journey so far.

 

[JennyC]

"One post in particular stayed with me: someone asked why me, and the answer was why not you. "

Its funny, I have a lot of chronic health conditions and thats what I used to say to myself when I was tempted to think why me....well why not me? Somehow its different because its my mom, I can think of so many reasons why not her but it doesn't change anything of course....


This sucks