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wallowing today

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Posted 03-18-2012 at 10:09 PM by Barbie

Today was a beautiful spring day--and I was miserable. I guess I was having a major pity party and I just could not help it. I am so sick of my life and I feel so guilty and petty for feeling that way. I could not wait to get out of the house today and get away from my husband and taking care of him and ALS. I was mad because I was only leaving the house to go grocery shopping and it was soo soo nice out. I was crying because I wanted to go to the beach or on a picnic or to the tiki bar. I was jealous of every couple I saw today, I was missing laughing and flirting and just hanging out and having fun with my husband. I haven't had fun in such a long time...and I wonder if I will ever have fun again.

I hate it when I start feeling this way. I miss my old life and my old husband so much. I really hate the life I have now. I want this all to be over, but what I really want things the way they use to be. yes, I know it will not go back the way it was, yes, I know when this is over my husband will be dead and that is what is making me so crazy and sad. What is there to wish for--I don't want to be where I am at and I don't want to be where I am going...I can't help the way I feel so today I am wallowing in self pity.

It has been such a long time on this ALS train for us. You know, I am so proud of my husband--he is the one who is sick and he deals with it so well. He is really well adjusted and lives the best life he can everyday. he doesn't whine or complain or cry. I on the other hand am a big baby. I whine, complain and cry enough for both of us. I feel over whelmed, drowning in problems that have no solution. I feel like I am paddling against a very strong stream, and if I don't keep it up I am going to go over the matter how hard I paddle, I keep slipping closer to the falls and I am tired!
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  1. Old Comment
    ALS sucks & I'm so sorry that you have to feel this way because it is your reality now. I pray that your spirit is lifted if only for a moment. I remember saying "I just want my mama back" alot even before she passed. It really stinks. Thanks for sharing what we've all felt
    Posted 03-19-2012 at 02:41 PM by Kevalyn Kevalyn is offline
  2. Old Comment
    Poet Chistopher Robin's Avatar
    We can all relate, God Bless you
    Posted 03-19-2012 at 06:43 PM by Poet Chistopher Robin Poet Chistopher Robin is offline
  3. Old Comment
    I was greatful to find your post and read it not because of what you are going through because I found somene that thinks the same exact way I do some days. I miss my husband we have also been on the ALS train for way to long. I have a 3 year old little boy I have given up everything in my life, still have to work, I have caregivers but when I don't I am taking care of him and my 3 year old. My husband can no longer feed himself, go to the bathroom any activities he used to do he can no longer do by himself. It is so overwhelming. I would love if you sent a message back to me and would love to chat a bit more. I haven't been on this site for some time now just because life is so busy but I am trying so hard at this time to give him what he needs and forget about myself for now. It's so hard for me to be patient,loving when I am so angry about the whole thing still. I think I will always have anger about ALS and what it has taken from us. Hang in there. This is one of the hardest journies out there at least from what I have gone through so far in my life. It's just not fair and I catch myself saying that often. Take care. Kelly
    Posted 03-20-2012 at 06:36 AM by kfrancis kfrancis is offline
  4. Old Comment
    poppy62's Avatar
    Hello, I am watching my new hubby of less than a year succumb to this ghastly disease. I cry, often at night when he has gone to sleep first. I want our life back. I feel cheated, it had hardly begun, our new life together. second time round for us both, we've only been together just over three years, first wedding anniversary coming up in october. Thank you for showing me its okay to have these feelings, that I'm not the only one, I hate this life. The irony for me is I gave up a job looking after elderly with dementia for health reasons, and here I am looking after him now, pushing his wheelchair, washing him, dressing him etc .. and I can barely understand what he is saying sometimes now...and I feel angry, frustrated, and just want to smash things sometimes. He laughs when we cuddle, he cries when he shouldn't, he can't kiss me like he used to...the list is endless...I am grateful too to read the posts here because it makes me realise what I is feel normal, if you can understand that...finding the Forums has been a god-send for me...
    God Bless you all...Poppy62
    Posted 07-14-2012 at 03:59 PM by poppy62 poppy62 is offline
  5. Old Comment
    New to this site and SO glad I subscribed. My 43yr old husband was diagnosed a year ago. We have a 4yr old son with Cerebral Palsy and a 2yr old girl, who is thankfully healthy! I feel your frustration. I resigned from a job I loved for 13yrs and now live on assistance. It is so frustrating, humilating and I feel your pain too. There was no way with our son's condition and now my husband's, that I could work. Physically I was drained and emotionally I had to toughen up and cope! I am much better now because I think I've adjusted. He has the most aggressive form of ALS and no longer can talk or walk. Thankfully he can stand but is getting weaker. Not a lot of help for us in the home but our friends pop in and out and try to keep us laughing.

    I know it isn't forever and that's what I remind myself of. Their suffering teaches us to truly be grateful to be able to let them go AND appreciate that our lives can go on, when their lives couldn't. I stay strong for our kids and dreaming of our future. So much yet to be done and help them go on. One never knows what's in store for us. One day at a time because that's all I can do : )
    Posted 01-11-2014 at 09:58 AM by Grace Hinson Grace Hinson is offline

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