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bear1973

Distinguished member
Joined
Mar 12, 2015
Messages
129
Reason
PALS
Diagnosis
05/2015
Country
CA
State
Ontario
City
Barrie
I just feel I need to get some of this toxic energy out of me and this is the right place to do it with the right audience. These are some of the thoughts I get on the worst of days.

1) My situation. Just before diagnosis I went through a relationship break-up. So I have no wife, no kids, and no siblings that live close by. Mother is out of the picture, father is probably the most supportive although has many of his own issues and sometimes emotionally unable to offer support. I live alone in a home as well....this profile does not fit well with someone with ALS.

2) My past. Near 20, I struggled with alcoholism severely that included about 2 years of severe depression. It was awful, although eventually I got out of it, got sober, and had 15 good years working. Then, about 8 years ago, I went through another traumatic event that included a relationship break up, unemployment, and the loss of a family member....the unemployment during all of this was a terrible time. That lasted about 8 months - it was 8 months of rattled nerves and depression. Then I got a job where I now live and was happy until.... 4 years ago when I was targeted for harassment at work by 3 other co-workers. That was a terrible time as well, and lasted for about 8 months.... 8 months of depression and powerlessness because of the situation. Then I got out of the situation through another job and started to feel better - this was in the beginning of 2013.

Now this. Diagnosed about a year ago with ALS. Probably the single worst diagnosis a person can receive...not only are you going to die much sooner than you thought, you will be paralyzed first.

For me, it's not just the disease...it's the context, both of a traumatic history and my life situation...that is what has prompted me to scream....F...........K!! in my car some days. I feel like this is the final, knockout punch in life...that I've just had enough of being knocked down in the ring and getting back up...with the other events I mentioned there was always a way out....with ALS there isn't.

I know thinking this way is not helpful. But I just can't help it some days...I sometimes get into a rage of how unfair life can be.

All days are not like this...one the best days, I just distract myself and focus on what I can do rather than what I can't do. I also know that there are many people out there who also face raw deals in life....people with a history of childhood abuse that haunts them for the rest of their lives, as an example.

On a positive note, I do have some good friends. I do have a good disability package from work.

I am not suicidal right now, although there are thoughts of euthanasia at times....without a solid family that needs me and without a career, and without being able to do many of the things I used to like doing....I just don't see a bright future, and at times I wonder what the point is of going through the inevitable .....

Thanks for listening.
 

bigmark1954

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Joined
Jan 31, 2014
Messages
1,012
Reason
PALS
Diagnosis
01/2014
Country
US
State
UT
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taylorsville
Bear....I like you more now than ever. We share a similar but not exact personal history, and feel the same about a troubled past.

I admire your courage in being transparent about your past......I could never say some things about my past.

Don't let the sound of your own wheels make you crazy.....Welcome to my world!:shock:
 
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ShiftKicker

Moderator
Joined
Mar 16, 2015
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2,990
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DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Bear, I once read a quote: Depression is the inability to construct a future."~Rollo May

I'm thinking having a terminal disease defines that pretty neatly. You've experienced a huge amount of trauma, set back and really seriously sh**ty events on your life. When you know that your life will have an end sooner than some amorphous "old age" ending, it's no wonder you're going to reflect more fully on what has already come before. It IS unfair. I'm so sorry. You are absolutely right.

Do you have access to counselling from your ALS centre? Or can you get a referral to a psychiatrist? Or, are you still going to AA meetings? This type of existential stuff is not possible or appropriate to bear on one's own. Thank you for sharing- you are not alone.
 

gooseberry

Extremely helpful member
Joined
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3,457
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US
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Bear, If you arent getting help with meds or therapy, you might want to consider it. While not a pals, I had some pretty ugly things done to me as well through out my life. There came a point when I had to make a conscious choice to choose life. I really struggled with that choice.

Please get help. It is great to come on and rant but it is a short term fix for a long term problem. Hugs to you, Steph
 

bear1973

Distinguished member
Joined
Mar 12, 2015
Messages
129
Reason
PALS
Diagnosis
05/2015
Country
CA
State
Ontario
City
Barrie
Thanks for the comments everyone. Shiftkicker - you hit the nail on the head re: depression...that is exactly how I see it - not able to construct a meaningful future. That said, the best days I have is when I live in the moment.... day by day, and am distracted enough not to let this disease get me down. I usually comes in waves for me: slumps followed by period of, "this sucks....I don't understand it....although it is what it is and enjoy the day..."

I do have a counsellor and I recently started an anti-depressant. I occasionally still go to AA meetings although not as often....I've found more help in attending support groups for this condition....that said, the AA meetings are still a positive, spiritual experience.

And it's true that this stuff is existential....there are so many things that happen that are un-explainable in the world although I suppose if bad things happened to bad people and vice versa, there would be no mystery to the universe.

It is true what has been said though: I need to reach out a little more to try and not only cope with what is happening, but to either construct a positive future or be able to live more in the moment.

Thanks all.....God bless
 

bear1973

Distinguished member
Joined
Mar 12, 2015
Messages
129
Reason
PALS
Diagnosis
05/2015
Country
CA
State
Ontario
City
Barrie
.,..and by the way BigMark....you don't deserve this disease...no one does. I've seen a many people in AA meetings with brutal pasts and they have come to forgive themselves for what they did.... if Adolf and Stalin never got this thing you certainly don't deserve it....BTW I also like "Emperor of the Muthertwitchers" I might borrow that one....lol
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
City
renick
Hey brother bear, this might or might not git Through but I just came from a meeting and also just came thru a temporary bout of insanity that came on quick and that $hit only leaves when I try to reach out to others. Take it easy on yourself dude! If you know the program you know it works but ya got to work it, ain't easy but worth it. What often works for me is to do something ,anything for someone else that pulls me out of a tailspin just long enough to take a breath and to begin to be grateful again. Good your sharing now work it like your a$$ is about to fall off we ain't no different then anyone else. Love ya chally
 

KatieNBoyd

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Joined
Oct 17, 2015
Messages
147
Reason
Lost a loved one
Diagnosis
11/2015
Country
US
State
MT
City
Boyd
Hi Bear, I am a CALS my husband is my PALS. He has been in AA for 15 years, myself coming on 9 years. I am sure that if not for AA we would both be living a very different story. The "insanity" that Chally speaks of comes to both of us. We attend meetings at least once a week. Just having that group to talk with, give us the boost and strength that we need to tackle another day. ALS is just like AA unpredictable out of control, so we practice "one day at a time" and doing the "next right thing".
I am glad to hear you have an ALS support group. There isn't any here in MT. Hugs to you and all on this forum.
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
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wv.
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renick
Hey bear& katie, beings I just live 5 blocks from the church basement and I can ride my chair there most days I hit a nooner everyday just to be on top of my "primary disease" my " secondary disease" being ALS. I just started doing all these meeting at the new year and now after almost 29 yrs sober this is my first 90in 90 it helps me and many have said $hit if he can can do this in a chair w/ ALS then I am gonna give it a try so helping other is Hugh part of staying alive for me . Love ya all chally
 

KatieNBoyd

Distinguished member
Joined
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Messages
147
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Lost a loved one
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US
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MT
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Boyd
Very Cool Chally!!! They have an elevator to get you down into the basement right? I have forgotten the satisfaction, accomplishment and things that I actually Heard (when I listened) in the 90 in 90!
 

Buckhorn

Senior member
Joined
Jan 3, 2016
Messages
725
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Lost a loved one
Diagnosis
12/2015
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US
State
PA
City
Small town
Bear, you ask some tough questions and you have been thru hard times. Try to be kind to yourself, because as you (& others) have noted, few people "deserve" ALS (I've had lots of weird-a** thoughts, like who DOES deserve it - child molestors, human traffickers, etc. Whenever I think that "God" is punishing me or my husband I remind myself that, yeah - that's why murderers will die of old age in jail). O.K., now back on track. I am the CAL and my hubby is the PAL. I had to be put on anxiety meds to keep it together, and "talk therapy" helped as well. I hope you get some good advice and coping strategies from your counselor. If not, move on - as in any occupation, there are good ones and not so good! Follow your own advice and live each day to the fullest. Try when you are down to think of the fact that you DO have some time left (whatever that may be), unlike those who die in a car crash or are dead in 2 months from terminal cancer. You mentioned your own good advice - live in the moment. Don't let ALS steal today!! I will leave you with a comment I read somewhere months ago from an ALS patient; sorry - I don't remember if it was on this forum or elsewhere: "I spent 2 years waiting to die when I should have been living each day to the fullest. What a waste......" I think of this comment often! Good luck Bear!!
 

bear1973

Distinguished member
Joined
Mar 12, 2015
Messages
129
Reason
PALS
Diagnosis
05/2015
Country
CA
State
Ontario
City
Barrie
Hello all,

Thanks so much for the support...that is a great quote Buckhorn. Chally and KatieNBoyd...I went to a meeting last night and it DID help....I was in my stuff for part of the time, although it was definitely helpful to listen to other people talk about their stuff...yeah they don't have ALS although their lives are far from perfect. What I wrote above is what I think about on my worst days....a lot of poor me....a lot of victimization....a lot of how unfair life can be. Although with the meeting last night, some TV today, a good conversation with a friend....I'm able to focus on what I still can enjoy doing rather than what I can't anymore.

Yeah....life is tough sometimes, although I suppose if you can work through ALS you can work through just about anything...sobriety was hard for me although this is much harder.... distractions definitely do help the most and who knows what will happen in the ALS world soon enough...there is always hope whether it be Western medicine or alternative medicine. I do know though that as much as ALS suck sucks sucks sucks and sucks more, I have to remind myself that I'm not the only one who has it and other people get dealt a sh&&^y hand of cards sometimes too....I used to live by the quote, "success is not what you have but what you do with what you have" and with that said, I do have my good days.

Thanks all for the support. It really does help "talking" to other people either with ALS or someone who has a loved one with this disease.

God bless....ODAAT.
 

Green Queen

Very helpful member
Joined
Mar 30, 2015
Messages
1,294
Reason
DX MND
Diagnosis
4/2016
Country
AUS
State
Western Australia
City
By the beach
Bear, I'm glad this thread has been good for you.
 
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