Why does it hurt so much right now??

[JennyC]

The first month was hell and then I was doing okay....I've fallen into a routine and sort of gotten down to business....I might have a quick crying jag every week or so but its over in a few minutes and I am back to being okay...but this past week has been horrible, I'm crying multiple times a day....I think reality is just sinking in again and I've got this feeling I can't shake. I feel like she is going to die very very soon, I'm not trying to be dramatic, I just somehow sense that its upon us, that its almost here, does that make any sense?

I really need to invest in some waterproof mascara....

 

[Maryl08]

I can totally relate. The pain was unreal for the first few months and then your survival instincts kick in and you adjust. But there are moments and I think there always will be. This disease is incredibly hard to deal with. I try to take a few deep breaths and remember to live in the moment. My mom is still here now and I just try to find joy in that without thinking of what use to be of what will be. Hang in there! xx

 

[Narrowminded]

Jenny - i think there are many reasons. You could be right about the time being close or you could be extra tired. I know when I'm very tired, I tend to be teary eyed more often. There are other things that can set me off too. Like going to a wedding and realizing that DH won't be able to give our daughter away, may not even be here by then. things like that. Just try to enjoy each day you have with her.

Hugs,

Sue

 

[JennyC]

It's just so freaking intense lately, almost like it hurts so much that it hurts to breathe. Today I had just done my make up to go to my daughters school and I literally had to bend at a 90 degree angel and hold my eyes open so the tears would fall straight down to the rug instead of my face.....if it weren't so sad it would have been a funny sight.

I just wonder how am I going to get through giving a eulogy? First off I dropped out of college to avoid taking public speaking....no joke....second how am I supposed to get through it without hysterical crying?

It's almost like the universe is playing a cruel joke.....my mom was always too busy for me, hiking, running, kayaking with her higher up friends and even when I would come down to visit she would always be doing something else, emailing, cleaning etc....I finally realized I would never have a close relationship with her although she has had an amazingly close relationship with my daughter which I am thankful for.....then she gets ALS and is forced to slow down, forced to get to know me and we finally have the emotional relationship that I've wanted and needed all of my life and no she is going away.....I know I should in a way be grateful because we did finally get that relationship and I was able to let go of many of the hurts that I felt...but mainly I feel cheated.

 

[affected]

We can all relate Jen.

So intense, and yep feeling totally cheated.

All I can say is that we help each other get through as best we can. Sadly no magic, no "it will be fine", just "yes we get it, we feel it too".

Hugs to you.
(I met my soul mate, and within 4.5 years he was dead, I 'get' feeling cheated)

 

[scaredwifetx]

Jenny, I think feeling cheated is very understandable. We are a year in now and I still have moments and sometimes days of feeling so hurt and cheated. Losing my mother in Feb made all of this very hard. I have days where I wonder how I will go on but I do.

No one can tell you how to stop your anger and pain but we can be here for support if you need it. Know you are not alone.

 

[Aussiemndcarer]

Jen, sending hugs to you.
You are stronger than you think, and you r doing a wonderful job of looking after your mum.
So glad that you have reconnected with your mum.
My mind often wanders to how things will be after my PALS dies. ( that's even hard to write!)
However, I've decided to concentrate on living instead. I'm gonna worry about eulogies etc later.
I want so much for all of us to keep living!
ALS ##!!##!