I Feel Like I Want To Die Now!

[Unknown]

I dont know how you stay so strong. I cant concentrate, eat, sleep, laugh, smile, watch TV, I just think about my 4 year old I cry 22 hrs out of the day! Who will put him to sleep, take him to the Dr's, comfort him when hes scared? Im losing it!

I truly cant live like this & I dont know where to turn!

Part of me wants to die now, to get it over with.........I just cant deal with the thoughts:

How I will deterioate.........I wont be able to move........someone changing my diapers....................not being able to breathe............My children seeing me like this................Asking me why, crying..............

I cant go on! I cant do this! I can NOT bare the thought of knowing I wont be here for them & I DONT KNOW WHAT TO DO!

 

[lostinlouisville]

Please

Try to get yourself together, You don't know what is wrong with you, there are a lot of people on here who have been scared for a long time before they find out they don't have this disease. I need to tell you, you are not healthy and this is not healthy for your children, you really need help, I would be glad to talk with you, I will PM you after this, but you need to talk to someone. I am truly worried about you and your thought process right now and think the first step is to help you find some coping skills. Children are a gift and they depend on us to be strong and you need to do that for your small child. Are you seeing a Dr., I am sorry just not real familiar with your case. Please try to calm down, and go hold your baby a few minutes without crying and look in his face and smile.I promise with a little help you can get through anything.

Renee

 

[lostinlouisville]

Unknown

I could not private message you yet, it takes awhile to be on here before you van view profiles or pm anyone. you have not been on long enough, I also tried to e-mail but it kept getting returned to me, if you need me I am here and maybe we can figure out how to talk.


Renee

 

[Al]

Renee. Try to PM her now. I tried an adjustment and not sure if it'll work.

AL.

 

[suzannj]

Hi Brian’s Mom,
(I sent a slightly different message to your Yahoo address, but just in case it didn't work I put it here too)

Your post really struck me for multiple reasons:
- I too am 38 years old
- I’m also a “Brian’s Mom”
- I too have been seen by two neuro’s who both said “No ALS”
- But . . . I also have a deep sickening fear that I have ALS and that is just too early in it’s development to be detected. (yes, yes, everyone I KNOW what most of you are thinking, that's why I sent it to her Yahoo address first )

You can click on “suzannj” on the Forums and read some of my posts to get the full story if you like, but I started out about 6 months ago now with twitching (fasciculations) that quickly spread throughout my body and have not let up. My leg bothers me so badly sometimes that I limp when I walk, and an extremely disturbing new “symptom” is that my tongue and cheeks and throat feel very fatigued. It’s hard to explain, but I also have a sense that someone is choking me a little? While I’m eating, my tongue just feels exhausted . . . so of course I’m thinking “Now I’m going to present with bulbar symptoms?”

I can’t “talk” a lot right now because I’m at work, but I wanted to reach out and definitely tell you that you’re not alone, and there is definitely someone out there who is going through something very similar, and is also scared to death. Sometimes it hits me like a wave and I feel instantly sick to my stomach. I feel like a black cloud is following me around many times of the day . . . .and then . . .

At other moments I say (AND I SINCERELY HOPE YOU DO TOO),
“You know what? Today I am alive. Today I can take care of myself, my child, my home, I can go to work, and eat and walk, and LIVE. Today I DON’T have ALS because no one has told me I have it, and that’s what I have to believe……and even IF I do have ALS there’s not a darn thing I can do about that, so today I’ll live and be happy.

And believe it or not there are indeed folks with ALS who are LIVING their lives, albeit differently than before diagnosis, and are NOT miserable 24/7. There's even a PAL on this very forum who just had a baby recently with his wife, and yes, he already knew he had ALS when they planned the addition to their family, because obviously he's not letting ALS ruin his entire existence, and he's certainly not thinking of taking his own life.

You really, really need to call your GP, or your employee assistance program, or a crises services if you don't have medical care. Get in TODAY. Explain your concerns, fears, and what you are thinking. You have to stop this very destructive ping-pong match in your head, please believe me, I know from experience. It is VERY hard when you are experiencing these "symptoms" and you don't know why, and then you look at your babies and feel like you're being crushed inside with sadness . . . . But why waste one more itty bitty second of your life consumed with a fear of something that no one has yet even said you have?

Another person on the Forum posted something once that really stuck with me. She said that her doctor once looked her square in the eyes and said, "You know what? None of us make it out of this alive. Not one of us." Not to make you more sad, but a local woman here, who was our age, and had two small kids, was just killed in a car accident on her way to work. But does that mean you're never going to drive again? You don't know if that's going to happen to you, you don't know if you'll die in an airplane crash, etc., etc., etc, and you DON'T KNOW YOU HAVE ALS EITHER. When your thoughts start taking control, say aloud if you have to: "STOP!" and then force yourself to think of something positive. Sounds corny, but I swear it works

Please get ahold of yourself, STOP, and call your doctor.
Hope that helps,
Suzann

 

[Kevinski]

try and get it all together

Hey i know where your at my friend,I was diagnosed with bulbar onset als a year and half ago.I cannot talk anymore and have some weakness in my upper body,but all things considered not bad.No one knows how this disease progresses as everyone is different.I too wonder what will happen when things deteriate.I have coped well with loss of speech and hope i cope with whatever this disease has to throw at me.I too have had thoughts of lets just get it over with.But that is no way to go out.Fight with everything you have and love your children and family.Because if a person gives up this disease wins on all fronts.Focus on the things you can do and do not dwell to much on what will be.Being from Calgary Alberta a person at times has to cowboy up even when at times we do not feel like it.So I wish you well and hope you find the inner strength to carry on under difficult circumstances...Kevin

 

[jonsjr40]

Please Don't Talk Like That!

You have to think about your son. Know this it my not be ALS. I will pray for you not to have ALS! But if it is it don't mien that you wont see your son grow up. See I have had ALS. for 17 years my son was 1 and my doughter was 6 now there 18 & 23 and I have a granddoughter 5 months old. If you keep thinking that way its not going to help you or your son.
GOD BLESS YOU AND YOU AND YOUR FAMILY

Check out my thread on storys of hope I think you will like it.
Johnny

 

[hopingforcure]

Suzanni,
I have to say I feel that your post was one of the most thoughtful and well written posts I have ever seen. I really give you kudos for a well thought out heartful peice that really was one that I will not forget. I have read post's for a couple of years now and that was one that will forever strike me as special and helpful...

 

[Unknown]

To everyone!



How can I say Thank You for reaching out? I appreciate your thoughts & they do make me feel better, if only that feeling would last.


I am such a well put (OR WAS) together, vivasious, fun loving, all around mom. What has happened, I keep asking. How is this possible? Can God really just rip me out of my 4 year olds life with such a crippling disease? Then, Like you, i try to be rational.........Ok, I'm not the only one in the world. I remind myself to appreciate the now. I really do & its good for about 20 minutes. Then my son will say something like..............(He watches Noggin TV) & they talk about being thankful w/ Thanksgiving here........."Mom, whats Thanksful & I'll tell him its something you are happy about & truly appreciate, & He'll say, Oh, well Im Thankful for you" & the cycle starts up, just like that.



Then its.............Who will be there for him during nightmares, who'll make sure he takes just the right amount of his antibiotics, care for his bloody noses, tell him about his mom, what happened? Will they console him & I'm back to the same nightmare.



I totally agree w/ that black cloud just lingering. Its scary, isnt it? How do you deal w/ the ups & downs? I have trouble getting to sleep because the thoughts just keep going over & over in my mind.



I hear so much about ALS & EMG's and nothing seem to fit. A negative EMG doesnt rule out ALS......A brisk reflex may not be a concern but it is. Its enough to drive anyone mad!

I feel as if the Dr is just waiting for this to manifest because they HARDLY Dx people w/ ALS & when they do, they need to be CERTAIN. So they wait till Its full blown, so to speak.

The 1st Dr I saw was so egotistic. He said to see a shrink because the EMG is "THEE" test for ALS. The 2nd dr said, well............ya know, I cant say you wont have ALS in 6 mo's or a year. But the 2nd Dr was sympathetic and compassionate. He said, I just dont feel like you have it now. But he had this look of skeptisism on his face & in his voice. I left thinking, WTH!?

I would love to hear more about all of you.......your Dr's appointments. Are your symptoms progressing? Are you planning for the worst or am I really just losing it? I pray to God that he will give us all the strenghth to cope but it's just not easy.......not when you have kids! Im sure you know.



I made an appointment here in NY at Beth Israel for next Monday to see a specialist. im not sure if it really is the right thing to do...........maybe too early. Im not one w/ any "RIGHT" answers right now but I'm going anyhow. Dont really know what to expect.



Sorry if I rambled on...........you all sound so put together! Consider that a blessing! I remember a time, I use to be the one to put others at ease...........Life is strange.

Hope to hear from you. & THANK YOU, from the bottom of my heart! I'm just so scared! Not for me.............for my kids!



Rachel

 

[dsiple]

hang tough

Unknown,

I have to admit, 5 1/2 years ago, I was in the same frame of mind as you are right now, but I am still here and don't plan on going anywhere for quite awhile. You have to try and keep level headed for your kids, them seeing you all worked up will only add more stress to an already stressful situation. Someone recently told me, and I tell my wife this all the time, worrying is like rocking in a rocking chair, no matter how much, or how hard you do it, it won't get you anywhere. My gets so mad at for not worrying like she does and I tell her, why should I, you worry enough for both of us. I would rather take all the energy that I spend worrying and put it towards doing something else.

Feel free to email me at [email protected]

Take care and keep your head up!
Duane

 

[hopingforcure]

Rachel,
The 2nd neuro only said that he cannot tell you that you will not have als in 6 months something that any neuro would say, he would say that to anyone, even someone perfectly healthy he has to say that. I would feel very optimistic you would have at least shown a red flag with one neuro.. Go to your appt. you will be fine.

 

[suzannj]

Hoping -
Thank you for the compliment. I am very flattered that you would say that. I just spoke from my heart. But now you've given me PPA (Posting Performance Anxiety) LOL!

I agree with Hoping, he probably just said that because.....well because it's true and something he could say to anyone, anywhere, at anytime in the whole world. Wright (one of the Forum's members) hasn't posted here yet, but in my "sticky" thread titled, "Ever Heard Of Going To The Doctor Too Soon?" he said something along the lines of, "I guess if I went to a urologist today and asked if I had prostate cancer, he'd say not now you don't, but you might . . . I could obsess that I'll have prostate cancer someday too." In our "I'll sue you!" society, what if he told you, "Nope. You don't have ALS and you never will." And then completely unrelated to your current situation, in 10 years you develop ALS, then I guess he could have been wrong. See what I mean? When you're trying so desperately to make sure you're really hearing that you don't have ALS, it's easy to begin over-analyzing everything a doctor says and does. Think back to the last time you had a crush on someone, didn't every interaction with that person take on a hypersenstive meaning? "He smiled at ME extra special right? Do you think he likes me?" (not that I'm speaking from experience ) But to everyone else it was just a smile. I believe you were / are just reading way too much into your doctor's voice and perceived body language.

In the end you have to work through this. Read the posts over and over again that you find comforting, and stop looking at the rest.

Off to bed now, I sincerely hope you're already sound asleep!
Take care,
Suzann

 

[Sammantha]

I always thought that if i were diagnosed with ALS that i would not get a trach or feeding tube because of the horror you endure everyday trying to live.... Then i thought, well even though it would be extremely difficult that would be one more day i would see my kids grow, one more day that i could be there for them, even though i could not physically it would not matter! Just think if you could control your sickness long enough to see your kids graduate high school or even college... Wouldn't you want to see that and more importantly they would want YOU there no matter how you looked! I am learning how to breathe with weakened muscles and not freak out and hyperventilate....it has taken quite a few scary times, times where i thought death would be easier.... and ya know what, it gets better......... meditation allows you to take CONTROL over your thoughts, and your thoughts can enhance any medical things you have wrong..... You sound like you need anxiety med and classes on meditation and relaxation upon stressful situations...... Hang in there for you and your kids, i look at this way... when i do pass someday a LONG time from now, God and i will look back and say "You really were one tough lady!" I hope you get help with whats going on and best of luck, Sam

 

[Limana68]

HI there
Just wanted to say that you are not alone in feeling like you do...... my hubby is experiencing horrible symptoms similar to ALS and he has been getting progressively worse over last 3 mths, and he has had so many tests, and we will be seeing the neuro next wk, he last saw him 3 mths ago before all the testing etc.
My hubby has really down days when he says ITS THE NOT KNOWING WHICH IS THE WORST THING, and so he is busy thinking too much and so am I. But we have 2 little kids so we hide all the worrying for them until we know for sure, 100% what it is he has got, because otherwise its just a waste of negative energy So we are hoping the neuro will have some answers next wk or it will be another 3 mths of limbo.....


Take care

LI x

 

[kinma]

I have 2 girls 11 and13 and we cried a lot at first but now I try to enjoy our time together. It's normal to be upset but you are still "yourself" now. I hope you get good news.
Kris