What do you say when...

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MtPockets

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I posted this a long time ago on one of my not so good days:
Fact verses fiction:

THOUGHT: Sure I'm dying but everything is fine, wonderful, just great how about you. Ever feel like asking someone that? Don't answer.

I know how you feel. We all go through this. Some get mad at the world, God, friends, family , everybody and just make themselves a pain in the butt basically. You get to chose how YOU will react.

I usually try to put on my "I'm ok your ok face" when around others. I try as much as possible considering all that may be happening to have a positive approach and outlook to live every day to it's fullest. And it's amazing how many people believe I'm doing great, when inside I'm ?. It changes all the time. Some days I do not know from one minute to the next how I'm dealing with this, it's overwhelming.

I do that mostly to help my loved ones, to be a source of hope for others, yet like tonight I can't sleep because of pain, spasms, and having a pity party, but no one came to the party.

Well maybe God. I think he understands when I get in these moods, swings, bad times, and just have to let it out and vent. I laid in bed crying for awhile, but could not sleep so got online instead.

But somewhere deep in my heart I know God loves me and you, and this will work out, I will make it through with God's help and strength. After it is all over I will be with him forever, no pain, no fears, no mood swings, no spasms, no pills, finally complete PEACE, believe me it will be worth it all, to finally see my lost loved ones and walk in the presence of Jesus Christ.

That is my rock that I hold onto, to get thru the lows, and to make me truly believe I WILL BE ALRIGHT THIS DAY. Not tomorrow, next week, next month, just this day.

I can only live ONE DAY at a time and make the absolute most of that day to help myself and others. There is no second trip around. This is it folks.

Do you have anything to use as your rock? Your strength? To get you through this.

Have you given thought to how God fits into your life? Now might be a very good time. You have some time left to consider it, before it's too late. Please, I'm serious, God really does love you and He said if anyone comes to me I will in no way cast them out. I respect your choice, but remember you will live with it forever.

I feel your pain, may God Bless and keep you.
AL
 

CindyM

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I think I am guilty of asking too much, myself. I have a friend who's wife is dying of Cancer and I ask about her every time I see him. I'm genuinely concerned for them, and don't want him to feel alone...Maybe there are better ways to show we care. I'll have to think on it.
 

dona jean

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i either tell them that i am still taking up space how 'bout you...which usually maks folks laugh, or i say it is what it is...i can generally tell who really wants to know and who is asking just to ask but really doesn't want to hear the whole story. keep it simple,and blow it off to those who don'treally care or are too ignorant to want to really care...if thaty makes sense.
dona
 

MtPockets

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Depending on my mood, I sometimes tell them, "It's better than pushing up daises."
Or, "I'm still alive, which beats the alternative."
 

Peg B

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Hi,

I hope this is the right thread to post this on. I don't get "I'm sorry," from three of my family members (Two sibs and a niece). Instead I get "Oh, I think I have what you have," Look at my hand it cramps sometimes." Incredulously, I say to myself What? and nod my head.

If I say ALS is very rare and MMN or even rarer, I am setting myself up for a debate, as the three family members love to play, " I have such big problems but aren't I funny and brave, and you could never have as many problems as me." This is why two of my sibs never ask about how I am feeling without immediately spinning into how they are. I call and ask them, let them talk and let go. So I do not talk about it, which is hard sometimes. The third sib, tells me how I need to sleep, exercise as much as possible and eat right as she does. (DUH!) If I only knew it was so easy. I think she thinks this is secretly my fault. As she has fought her cancer so well. (10 year suvivor). So I guess I am just venting. The two sibs I had that died were on the same wave length as me and we could talk straight about anything, (we were from Venis, sort of speak), the three I have left are from Mars, sort of speak. I was very close to the other two, and since I saw all three of the ones left last weekend I am feeling very lonely. My husband and daughters cannot really fell the void. It's not the same.

It is nice to vent. Thanks. Sincerely, Peg
 

Bobby C

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What I say is that I have a type of motor neuron disease. If they do not know what it is, then I tell them it is a cousin to ALS. Then I say that we take life as it comes, and we will keep up with our activities (we are avid sports fans) until I drop. One nice lady, when my wife explained my PMA diagnosis asked "is it just luck of the draw." Well, its not luck, but just a "bad break" as Lou Gehrig explained. But I wish good luck to all and God's blessings.
 

CindyM

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Hi Peg- you are right on target when you mention how lonely all this can make us feel. I think our kids and spouses have their own issues/fears about losing someone they love. But siblings and other relatives and friends should be a soruce of support.

Not many folks know how to support someone, though. I once read a great article about the 10 things NOT to say when someone has terrible news or feels awful.
The mistakes listed were very common, when I can find them, I'll list them. Not that we can do much to educate others on how to respond, but at least we can not create their mistakes and at least we can know they probably justg do not know what NOT to say!
 

CindyM

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OK. I just googled the article but cannot find it. It was titled, "Other than that, Mrs. Linclon, how did you like the play?" Cute title. Anyway here are at least eight poor responses that I can remember from it:
  1. "I know what you are going through."
  2. "The same thing happened to someone I know."
  3. “How do you think I feel? I had ____ happen to me." (Followed by a long discourse on how bad their life is.)
  4. “Maybe you should…” (followed by advice)
  5. “This is God’s plan for you…” (Also often followed by advice.)
  6. "There are a lot of people worse off than you."
  7. “You don't 'look' sick."
  8. "At least you are not in pain."
I am sure there are lots more. Any submissions, everybody?
 

paula-jane

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Yep... how about "I have something to cure her!"

Mum had a friend who moved away a few years ago, but, their children came round to play with friends on the street on a fairly regular basis. Naturally, they reported to their parent's that my mum was really sick and in a wheelchair. Fast forward six months and there is a knock on the door et voila! There is said friend demanding to be let in to see my mum... our caregiver let him have a two minute visit with my mum as she was too upset to see him any longer. Next, I get a phone call from said friend, who is sympathetic, but thinks he has the perfect cure for what ails her. He has just started a new business and he has pills! These pills will cure her! I listened patiently and then explained that mum has ALS and that before he continues to upset everyone he should google up ALS on the internet and then give me a call. He called back to say sorry.

Yeah, it's really tough to know what to say...
 

Peg B

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Dear Dear Cindy,

You somehow have perfect understanding. I never heard the Mrs. Lincoln one before, but talk about LOL. I sure did LOL. The rest was perfect. It made me feel much better.

You made my day. I am going out with my long time friends, college roomates 39+ years ago and I will ask them. Laughter is good.

Paula Jane. I think you were very gracious in your handling of the friend. You helped them get smart, protected you and your family without meaness. That's the best way I think. God Bless you both well. Peg

p.s. I am still laughing.
 

MtPockets

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What a classic line, "Other than that, Mrs. Lincoln, how did you like the play?"
:-D:-D:-D

I love it.
 

CindyM

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I laughed too, AL. Paula-Jane: what a great idea, to tell well-meaning know-it-alls to google a defination. Solves more than one problem at a time, I'd say! :-D
 

stilljoyful

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I say:
We all have to deal with the hand we're dealt.
 

brooksea

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I hadn't read this thread in a while, but loved paula-janes response!

i think there should be t-shirts made that read:

"Google This: ALS

It's what I have - what have you got?"

:twisted:​
 

jrienecker

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For a very long time I wasn't able to honestly tell people how my father was doing. I would say "he's hanging in there", when all I really wanted to say is, "he's dying. What do you think?"

People who don't have experience with ALS (and even all of us, before we were affected by the disease), don't know how to act around someone who is paralyzed by ALS. It is a gruesome and uncomfortable disease for people to see at times, and I think that being honest is your only option. If they say they are sorry it's because they are sympathetic and don't know how else to be supportive - and that's totally fine!

When someone says "I'm sorry", maybe you could mention the ALS Association local chapter and ask them to donate or mention some fund raisers they can help out with. Then "I'm sorry" turns into, "I'm sorry and I'm helping", which is ultimately what I think people want to do - help out!
 
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