The new normal

[starente15]

Hi friends!

I guess I'm settling into the new normal these days. Some days good, others bad. It seems a song, a TV show, something someone says, pretty much anything can cause the bad.

Last night I went for a run after work and started feeling out of breath. I immediately thought of how my father struggled trying not to use his bipap and found myself crying as I ran down the street. Then a song came on that reminded me of the walks I took by myself when I was caring for him at the end. Another flow of tears. I can't imagine what this must have looked like to anyone who drove by!

I wonder to myself if I'll ever be able to run or go for a walk without this happening. I feel a sense despair every time a show comes on that he watched because he was trapped in bed and that was all he had.

I thought maybe coming here and typing it out would help as I've been struggling for awhile. I started a new job 4 weeks which is helping to keep my mind busy for a good part of the day so that's positive.

I hope everyone is doing well. It's been so hard to come back because reading the posts stirs up images that cause major anxiety. Then I think that's nothing compared to the people who are going through it and feel guilty. It's a vicious cycle that just takes over your mind.

 

[Atsugi]

Star, you're doing well. It's all normal. You'll probably go through a lot of sadness, depression, anger, even fear and maybe paranoia for awhile.

There isn't a proper word for what I'm about to say, so forgive me in advance. We do "get over it" with time. It's hard to imagine right now, but happiness and a happy life await you.

You did good. Some people cut and run. But put in a position that few people have to face, you did great. You helped your father when he needed it most. I'm proud of you, actually.

 

[starente15]

Thank you so much Mike. That really means a lot. Now I want to cry again!

 

[skipper66]

I understand how you feel Star. Last week I was clicking through channels and came across the Antique Road Show that my dad always watched. Then there was a flood of tears. I've been attending a grief support group every other week. I think it helps to talk it out with other people who are going through the same thing. I don't think I'll ever get over the loss of my parents. But, I do think that time does help us heal and move forward. It will be 19 years this summer since I lost my mother to cancer. I don't cry as much anymore but it still really hurts. But, I now think more about the happy memories I had with her and the sadness isn't as intense. But, it's only been since November since I lost my dad. I don't want to let go just yet. Hugs, Kim

 

[affected]

What you describe is all so normal and I could relate to it all.
There is no timeline for grief, so never think you should be at any particular stage or place.

Your response is a reflection of how much you loved your father - so when it is deeply painful, accept that it means how much you loved him.

I am going to respectfully disagree with Mike - in my opinion. We never 'get over it', I think that is total trash. The wound heals, but we never go back to who we were before ALS, we are left with a scar and a limp. Nothing and no one 'takes their place', and we don't 'move on'.

But we can emerge as we heal and find much joy in life, we may have more to offer in many areas of life, and we can overcome the trauma we suffered.

You will find that one day you will hear a song or see a tv show and you will give a little smile, there will be a little sadness, but you will give a smile because you will also remember many beautiful things about your father. You will only ever remember ALS with sadness at what it did, but it won't rule your emotions or life forever xxx

 

[Atsugi]

I know, Tillie. I am just no good at expressing emotions. That's why I said there was no proper way to express it. I wish I had better words.

And I totally agree with you.

I'll re-read your post, and maybe learn something about a better way to express myself.

 

[tripete]

Star, Keep Running, it was my sanity in down times. I thought about everything from the scriptures to my own breathing while running. I miss it, but am glad you can do it. It doesn't matter what you look like or what others may think just do what you need to do.

 

[gooseberry]

Star, I am in go mode. So very scared to stop and what it will mean. I admire your courage and strength.

 

[scaredwifetx]

Star, I am so glad you checked in and shared your feelings. You have been a brave and loving daughter. You will need time and yes you will be forever changed by everything you have been through. I have taken two losses since Feb. One my mother who lived with me and my dog of 15 years. I never have any down time. I go, go, go and even when sitting am doing something. I try not to think about them or losing Steve to this horrible disease. I do hear music and memories come flowing forth. You will always have the memories and you will cherish and carry his spirit in your heart.

I can only imagine how you will be in the future and I know you will be a wonderful, caring and kind person. You will honor your father by being the best you can be. Stephanie, you are and will do the same. ALS does change us and the hurt is so deep. I do have to believe that we will all be better people. Look at the loving, kind and sharing CALS that log on here every day to help us all. It's truly amazing.

it's hard to see it now but we all have good things ahead of us and have a purpose. I find myself to be a lot kinder, doing things to help others including strangers I meet everyday. I feel the changes along with the manic behavior. Some of it is good and I know the things that are not so could will all be worked out in time.

Be proud Star and everyone who are dealing with daily losses. You are here and that means you are stronger than you even know. We have a purpose. Star, we would all be proud and honored to have you as a daughter.