Depressed

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fionae

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Joined
May 30, 2015
Messages
236
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PALS
Diagnosis
08/2015
Country
US
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CA
I feel so alone. I feel so helpless and powerless. I feel so hopeless and depressed. I feel locked inside of my brain because I cannot express myself with my voice. I feel as if I'm hermetically sealed inside a capsule, and am not part of the world around me any longer. I have tried to think positively, I have tried to be involved, I have tried to continue to learn, I have tried to be proactive. It seems that nothing matters anymore. There is no reason for anything. And it is all only going to get worse. And the worst part is that I am going to be a huge burden in every way possible. And the longer I live the more of a burden I will be.
 

Atsugi

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Joined
Jan 11, 2011
Messages
5,173
Reason
Lost a loved one
Diagnosis
12/2010
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US
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Florida
Hi Laura,

It seems you may have gone from the shocked and scared phase to the depressed and accepting it phase. I'm sorry. Do you have family? Is there someone there?

I know that my wife was never a burden, not a single day. Many CALS have agreed that their PALS is not a burden.

By the way, are you still using your telephone to type? Perhaps a keyboard would be easier.

--Mike
 

frankb

Senior member
Joined
Jun 8, 2011
Messages
525
Reason
PALS
Diagnosis
10/2010
Country
US
State
Georgia
So sorry that you feel so depressed. Hope the day gets better and hopefully some more experienced pals can offer helpful advice.
 

Green Queen

Very helpful member
Joined
Mar 30, 2015
Messages
1,294
Reason
DX MND
Diagnosis
4/2016
Country
AUS
State
Western Australia
Oh Laura.
I'm so sad...unfortunately there's nothing I can really do for you.
Except to tell you that you are not and never will be a burden.
The bond between a mother and a child will grow so strong through a situation like this.
You will comfort and educate others.

The reason for going on, taking part in trials, believing in yourself and staying strong is the next generation. We do all that we do so that when we do fly free, the world will have been a better place because of our existence.

You will get out of that ditch, but it does take time.
Keep climbing, we are with you all the way.

God bless you, dear friend, Janelle xxxx
 

cheerleader

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Jul 6, 2013
Messages
977
Reason
Lost a loved one
Diagnosis
08/2012
Country
US
State
Midwest
Fiona's, my heart goes out to you. But as a CALS, I can tell you one thing- you are NOT a burden to those who love you. It was my privilege to care for my hubby- and I wanted every moment I could get with him.
You are STILL you. Hope this sadness moves on for you so you can enjoy the days you have- just in a new way. Hugs and know you aren't alone. Donna
 

anderkling

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Joined
Dec 1, 2014
Messages
270
Reason
PALS
Diagnosis
01/2015
Country
CA
State
B.C.
Laura, I understand and totally empathize with you. I too have lost my voice and my mobility, all within 11 months of symptom onset. I struggle to breathe, suffer pain and constant discomfort, and I have the same thoughts about being a burden. Our road is tremendously challenging, and seems impassable, when looking at it from the perspective of this illness. My OT suggested I wake up every morning and thank God for 5 things. I find myself thanking throughout the day, and as I do, it pushes back the overwhelming sense of helplessness. ALS is taking more and more away, but it cannot take my soul, my faith, prayer, and I will not let it steal my peace and the love in my heart. I am no hero. I struggle with you. I have to rise up again and again. Know that you are not alone. Please don't give up before your time. There is a purpose. It may not seem so, but there is a purpose in every day of life...love to be shared, forgiveness to be received and given, encouragement to be shared, wisdom to be imparted, things to be learned. I look forward to heaven when faith will be turned to sight and when there will be no more suffering.
Charlene
 

lgelb

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Joined
Nov 5, 2009
Messages
7,250
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Laura, this "burden" thing is a self-fulfilling prophecy. The more you feel like a burden, the more likely you will be.

Caregivers [did you see that "giver" part?] don't want or need to hear about their burden (though we appreciate appreciation from time to time). We don't want or need you to have a sad face of regret for what we have chosen freely to do.

Did you ever help someone with mobility challenges reach a shelf, get a door open, pick something up? Did you want to hear about what a burden they were being or did you just want to help and make something better in both your lives? When you have helped someone for a longer period, were you not the better for it?

Your caregivers' and companions' lives [and, unexpectedly, the lives of many others that you will touch] are going to change forever, that is true. The question is, what kind of change do you want to leave them with, when you are no longer here? The regret of having failed to pull you away from a bleak journey to death or the thrill of having helped you live your life to the fullest and most joyful?

Your family and friends want to be with you, help you, have fun in all the ways you still can (and there are a lot!), celebrate the good, regret the less good, and live both the parts of their lives that will change because you are ill in conjunction with -- and this is very important -- the parts that do not, the people, places, memories and history they and you still are. If you deprive them of that, you'll all regret it. There is always a sunbeam to sit in (especially where you are!)

In sunshine [though Seattle today is not],
Laurie
 

fionae

Distinguished member
Joined
May 30, 2015
Messages
236
Reason
PALS
Diagnosis
08/2015
Country
US
State
CA
Thank you. So much. I want to reassure you that I was not thinking of harming myself. I'm sorry. I should have made that clear. Thank you.
 

lgelb

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Joined
Nov 5, 2009
Messages
7,250
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Lost a loved one
Diagnosis
09/2009
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State
WA
No worries, we all got that. There is more than one kind of death. I was being metaphorical. There is either a journey of life or a journey to death.
 

Atsugi

Legendary member
Joined
Jan 11, 2011
Messages
5,173
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
Florida
CALS like to be appreciated, as Laurie said.
Most CALS, most of the time, do it out of love, and love makes everything better.

Laurie > "When you have helped someone for a longer period, were you not the better for it?"

That's the way I see it. Being a CALS made be a better person.
 

fionae

Distinguished member
Joined
May 30, 2015
Messages
236
Reason
PALS
Diagnosis
08/2015
Country
US
State
CA
I hope, that when I posted my second post, that, all of you, knew, that it was meant, for all of you. Thank you all.
 

FamilialALS?

Distinguished member
Joined
Aug 24, 2015
Messages
118
Reason
Lost a loved one
Diagnosis
10/2014
Country
US
State
CA
Laura I sincerely hope you find a way to see better days.

As Laurie stated--Your caregivers' and companions' lives [and, unexpectedly, the lives of many others that you will touch] are going to change forever, that is true. The question is, what kind of change do you want to leave them with, when you are no longer here? The regret of having failed to pull you away from a bleak journey to death or the thrill of having helped you live your life to the fullest and most joyful?

Amen Laurie! I have struggled for an entire year to come to terms with my mom holding steadfast to a bleak journey to death. The way you worded this very real choice is spot on. I truly hope you choose joy Laura.
 

scaredwifetx

Forum Supporter
Very helpful member
Joined
Jul 25, 2015
Messages
1,571
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
Laura, my heart goes out to you. Please do not feel like a burden. I would do anything for my husband and want him to be as loved and taken care of as possible. He is starting to get involved in studies, not for him but for the future and it is helping him a little. You also need to know that you are special and important to so many. Live each day by not counting each day and leave your mark. I am a CALS and have bad days because of my husbands losses and struggles and so does he. There will be those days but there is a lot you can offer to this world. You gave me strength tonight just by reading your post. I have had a very tough couple of weeks but through your post I realized that things are not that bad and I will get though this. There are people who care and who will be changed in good ways by you. Hugs!
 

dougieconnor

Active member
Joined
Sep 2, 2015
Messages
39
Reason
PALS
Diagnosis
08/2015
Country
Uk
State
East Lothian, Scotland
Hi Laura
Instead of dwelling on your condition, concentrate on overcoming the symptoms. I can't speak very well now so I've found software and phone apps to help me. I'm a disc jockey/karaoke and the crowd love the fact I can still communicate, they even find it funny. I've even found a voice with a Scottish accent :)
So learn how to use technology. Most of the things I've found are either cheap or free :) If you want to know what I'm using let me know x
 

DreamsEnd

Distinguished member
Joined
Jan 24, 2014
Messages
445
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
AZ
Fiona's,
While I cared (gratefully) for my pals, I couldn't imagine being in his mind and body and experiencing what you are. All I could do was care for him with as much love as I felt and my love grew stronger every day. You're posting your feelings in the right place and we appreciate your sharing. Antidepressants do help and as others have said "unexpectedly the lives you will touch" are so true.

Big hugs, you're not alone.

Sherry
 
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