Need A Little Support Tonight.

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hope

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I am so grateful for this site and all the kind people that are here. I have been keeping a very positive attitude since my husband's diagnosis and have worked tirelessley to make life good for him and I. This illness is horrible, I cannot think of another word for it. It hurts so much. As I watch my loved one get sicker it just breaks my heart. Tonight I am posting for a little support, I hope it is okay to reach out.

Sandy.
 

CindyM

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Of course it is OK to reach out, Sandy! You've offered support in the past and there is nothing wrong with asking for consideration when you need it. It is easy to get "down" from time to time. How is your PAL doing tonight?
 

quadbliss

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hope,

I don't think of ALS as a terrible disease. Everyone is challenged with different circumstances during their lives. This just happens to be the one that is challenging Jen (my wife) and me. It rarely gets us down. We keep moving forward with our heads up, alert to opportunities to make the world a better place. Reality is not solid. The world is unique to each of us in the way we perceive and respond to it.:-D

Mike
 

CindyM

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Hi Sandy- I want to re-phrase my question. I asked what is going on with your husband tonight but I really should have asked about you.
 

sharona

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Hi Sandy,
Prayers for you & your husband. My husband is still waiting to find out what is going on with his body ,we go back to the neuro Jan 17th I read this forum many times a day I guess knowing that we are not alone helps.God Bless you .
Sharon
 

TBear

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Hope:

It's okay to reach out... and it's okay to vent. Many of us have gone through this cycle before... and likely will again. This kind of moral support is what many of us are here for. So let your fingers dance!

T.
 

Rhonda

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Sandy, I'll say a prayer for you,your husband and family. We all get down at times and we need the support of others. Thank God we have a place to come to to get that support. Take care of yourself. God Bless,Rhonda
 

lunarruna

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Sandy,
This ALS is just the pits isnt it? Heart-breaking for sure. I know from your many posts what an amazingly strong, courageous person you are...how lucky your husband is to have you.
This past week we have been 'down' too. Seems the holidays gave us a brief distraction with some gift-buying and some visitors, now that they are over we realize that we are still on this sinking ship.
I find it so difficult to see my husband in pain and discomfort that sometimes I fear I cant stand it anymore. That is a big burden for us CALS to bear too....feeling that we have to make them comfortable, when the disease keeps throwing out new discomforts, sometimes it seems on a daily basis. Almost everyday I cry in the bathroom at some point because I feel so bad for his pain. I also hate that I seem to have to cause him discomfort so often, whether it is suctioning, or slinging him around or whatever, I feel so bad if it doesnt go well and he has even more discomfort. He is tougher than me and keeps me going---he often reminds me that 'it isnt your fault' and 'there is nothing you can do about it' when I am so down about not being able to 'fix' things for him.
Please remember that you are doing a great job in the face of an almost impossible task.
Sometimes I take solace in thinking about the fact that suffering is really an integral part of living, and I think about people all over the world, in Darfur, Iraq, and other war-torn areas, or areas of famine and poverty.....and then I feel less alone with our woes here. (But sometimes nothing helps and I am just heart-broken at the losses we are experiencing--and crying helps)
Peace to you and your husband...Beth (CALS to Shannon, diagnoseded 8/04 at age 40)
 

Paty

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My prayers are with you Sandy, I'm also down, must be these past holidays, don't know for sure; seeing my husband in bed, with a tear coming down his eyes, brakes my heart.

Sincerely,

Paty
Husband's caregiver
Baja California, Mexico:(
 

hope

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Cindy,

That is okay. My husband is very ill. I am trying very hard to keep strong and take care of us. I think what is happening to me today is that I feel exhausted a bit. I feel guilty though when I feel this way. It is emotionally and physically draining. The physical work even though it is hard is not as hard as the emotional work. Trying to keep my husband' spirits up. He can no longer use his hands or arms very much and many other things are happening. I know everyone here is in alot of pain with this illness and I wish for a cure for all who suffer. Thank you Cindy for your kindness.

Sandy.
 

hope

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Mike,

My husband and I also keep moving forward and I understand what you are saying. We do feel that this disease is horrible. It is loss after loss on a daily basis. My husband is a wonderful, caring, kind man who I think has a heart of pure gold. All his life he has helped many people and sometimes I ask, why? I know there are no answers. My heart goes out to everyone here suffering.

Sandy.
 

hope

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Paty,

I am so sorry that you are going through this also. I can honestly say I know how you feel. The christmas holidays were painful and my husband also had tears. You are right when you say it is truly heart breaking. I wish I knew the right words to say to you.

Sandy.
 

hope

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Lunarunna,

Thank you so much for your kind words. I know also how you feel. Some days I do not know where the strength comes from. My husband was a big strong man and to watch what is happening to him breaks my heart. I cry too. I sat in my laundry room one day and cried for a long time. My husband will always say you are doing a wonderful job at taking care of me. I always feel like I need to do more, I feel helpless sometimes. I thank you again for replying to my post. I know that today I have fallen down a bit but tomorrow I will pick myself up again and keep loving and caring for my best friend.

Sandy.
 

hope

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Rhonda,

You are so right. This a wonderful place to be able to come to where you know everyone understands how you feel. Thank you for your prayers. Maybe this will be the year for a cure. My husband said to me tonight, honey it hurts to not be able to hold you with my arms and I replied saying honey you do not need to hold me with your arms because you are always holding me with your heart. Thank you again Rhonda for caring.

Sandy.
 

quadbliss

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Hi Sandy,

I now understand that my comments above came off smug and uncaring. I would delete them if I could. Being male, I often jump in to try and fix things instead of working toward empathizing. Please forgive my non-caring tone above. I really do care about you and your situation. {Where is that hug icon?)

Mike
 
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