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Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
I am just feeling down today--nothing has really happened and my husband's progression is steady slow and his health is good. I guess I am just tired. I feel like I am going at 100 miles an hour all the time an never a break.

my pals is a bit manic and his mind is always going full speed, jumping from thing to thing. He is really really smart too. it is like watching someone juggle 10 pins at once while spinning plates on their head and jumping through hoops too. I get dragged along for the fun--

I wish I could close my eyes and step back in time to 10 years ago--just for the day. I would spend the day with my husband and kids--it would be fun not work. we could laugh and play and go out to dinner and hold hands and kiss and talk about something interesting.

The other day we were eating dinner and I told my son a funny story about something that had happen with the dog that day. It was a very animated story--an my husband was right there not a foot a way while I told the story. about 3 hours later, my son walked thru the living room and my husband said to me, "why don't you tell sonny boy about what happen withthe dog today". we both did a double take at husband--he had no memory of me telling the story because he was not paying attention--he is only interested in politics and computers and our business. family is really not important to him anymore.

just sad and feeling sorry for myself right now. Think I will go make a martini for myself...
 

mich5

Distinguished member
Joined
Apr 20, 2012
Messages
275
Reason
PALS
Diagnosis
01/2012
Country
US
State
west
City
mid
Barbie -don't know what to say . . . To have one day back . . . As i'm at a loss for words - how about a martini recipe?

7 basil leaves w stems
1 oz. strawberry purée
2 1/2 oz. vodka
1/2 oz lime juice
1/2 oz sweet and sour mix
1/2 oz strawberry syrup

Muddle basil and purée together, throw in ice and the rest of ingredients, shake, strain, imbibe.

Hope you feel better soon. I'm so sorry you're feeling this way.
 

vickim

Very helpful member
Joined
Sep 20, 2012
Messages
2,255
Reason
Friend was DX
Diagnosis
03/2012
Country
US
State
MO
City
aaaa
Its okay to have a pity party. I do it when I am alone in the house, I go around slamming doors and yelling. I shed a few tears and wish for things that will never be again. I have never had a martini but you need to do whatever you need to do to feel better. You deserve it. Everyone here deserves to do what makes them feel better even if only for a moment. I am sending hugs and strength you way.
 

laurel

Very helpful member
Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
Barbie you are one of my heroes on the forum. You are so rock solid and keep things going with such grace. Having a martini or two sounds like something needed daily to get through your energizer bunny life style. Wish I lived close so I could lend some help. Hugs to you.

Laurel
 

ottawa girl

Moderator emeritus
Joined
Jun 14, 2012
Messages
1,506
Reason
PALS
Diagnosis
04/2012
Country
CA
State
Ontario
City
Ottawa
I wish I knew what to say to you that would bring you comfort. Especially because you invariably say just the right thing, every time and with such compassion.

You are a wonderful person, giving and generous. Above and beyond.

Have that martini... take a deep gulp, then take a deep breath.
And, sometime... I'd love to hear the dog story.
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Thanks you guys for lifting me up--did not have a martini last nite but did eat a bunch of chocolate. :)
 

Compass Rose

Distinguished member
Joined
Jun 20, 2012
Messages
133
Reason
Loved one DX
Country
US
State
WA
City
Seattle
Barbie, I wish I had something to offer that would be helpful, but this experience is so new to me and I am not a CALS.

All I can do is say thank you for your wise words, and for sharing your experience on the forum. You are among the people here who have helped me since my brother's diagnosis nine months ago. I really admire your strength and grace.

It's okay to throw yourself a pity party from time to time. Chocolate is a good antidote. I also recommend a little retail therapy. :grin:

Take care.
 

sunewun

Active member
Joined
Jun 22, 2012
Messages
80
Reason
PALS
Diagnosis
06/2012
Country
US
State
TENNESSEE
City
Camden
Sending love and caring your way Barbie. Wish I could give you a day out with friends and martinis. You are so appreciated for your thoughtful input for all of us. Hugs...sherry
 

poppy62

Distinguished member
Joined
Jul 3, 2012
Messages
128
Reason
Lost a loved one
Diagnosis
05/2012
Country
uk
State
mid glamorgan
City
caerphilly
Hi Barbie...chocolate works for me..and ice-cream!
Finding it hard to come here sometimes, but I think of you all often, more than you know.
Hugs and love..Mair x
 

themommy

Active member
Joined
May 3, 2012
Messages
82
Reason
CALS
Diagnosis
03/2012
Country
US
State
FL
City
Saint Petersburg
Barbie,
I find Michael in Manic Mode = alot. It is exhausting...Just being around him when he is bouncing off the wall is sometimes more than I can handle. He too is very bright and his thoughts change like a pin ball machine. I think its just part of the disease. When he is like that - afterwards - I just have to lay down. I don't know how to describe it...Its just mind boggling.

I hope you are feeling better - Martini is fine - but it will just make you more depressed... (although I have found sangria lets my mind shut down after a day in the trenches). It would be nice to be able to turn back the clock - but unfortunately - the universe only moves forward. Surely as the pendulum of life sways to one side - it will turn back again. The day is coming when the sunshine will fall onto your face - and it will warm you - and be good. Hugs to you my dearest...I know its hard. :)
 

hangingon1

Distinguished member
Joined
Jan 29, 2012
Messages
199
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Georgia
City
Chamblee
Barbie,
I know what is like to want to step back. My late wife had OCD very badly. After I would tend to her I felt like I had tended five people. I stayed tired all the time. When my head hit a pillow I was gone. It might not be that your husband is not paying attention. It may be that he can't. My wife had a dullness over her face that meant she just was not getting whatever was said sometimes. When I think about her and what damn ALS did to her and me, it really makes me want to cry. I will never be the same for losing her, but mainly for the pitiful and helpless way she went.God bless you Barbie and and strengthen you and remember-- This too shall pass.
 

jkungle

New member
Joined
Jan 17, 2013
Messages
7
Reason
CALS
Diagnosis
10/2011
Country
US
State
OH
City
Copley
Barbie you ARE a rock. I read a lot of your posts and I am so sorry to see you as down as you are. I have many of those same feelings. I look to you for inspiration so have that drink and get back on your feet. We all need you! (as if you'er not giving enough already!)
 

MeigsMom

New member
Joined
Jan 25, 2013
Messages
3
Reason
CALS
Diagnosis
11/2004
Country
US
State
Ohio
City
Rutland
I'm glad you found some chocolate to help lift your spirits a little. It is humbling to see that even the strongest of us struggle sometimes. I forget sometimes that those who give the best advice and support can also get slapped around by this terrible disease that connects us. Just remember that those whom you have supported so vigorously in the past are also here to support you on days like this! Hugs and prayers for a better tomorrow!
 

Annie's Phil

Distinguished member
Joined
Nov 22, 2011
Messages
302
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
MD
City
Eastern Shore of Maryland
I was deeply moved by your post, Barbie. As the caregiver, the feeling that you're going 100 mph all the time is still fresh in my memory. And I really understand the desire to just close your eyes and go back 10 years, and if not for the day, just a few minutes would be the greatest treasure. My heart truly aches for you. I wish there was more that I could do beyond wishing you an abundance of grace, strength, and peace.
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Hey ya'll, It is amazing that this forum so is filled with caring, giving and loving people--I find so much comfort here! It is hard sometimes, but we have to remember this is life and we all have to just pick our selves up, brush ourselves off and keep going. ALS sucks for everyone!

Poppy--I OD'ed on ice cream a couple of years ago and can't eat it any more--love me some dove promises though!
Mommy--you are right, have to be careful with the alcohol (and too much makes it impossible to be a caregiver)!
hanging on--I think you were dealing with more than just als with you dear wife. I hope things are getting better for you now.
Phil--just like your lovely wife, you are an amazing man.

This is me smiling again! :) :) :) :)
 
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