Old 06-19-2016, 07:08 PM #1 (permalink)
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Default Hope it helps others

Some days are shit. And sometimes you get a bunch of them in a row. And sometimes it gets too much, and there is crying and gnashing of teeth.

I saw my psychologist. I said "I'm not coping very well".

She said:

What kind of person deals with this without getting upset?

The only way through it is through it - just keep going.

This is what coping looks like.

Shared in the hope it may help others. The last has become a very comforting self talk... I'm not failing - this is what coping looks like.
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Old 06-19-2016, 08:52 PM #2 (permalink)
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Default Re: Hope it helps others

Brilliant. I got the same type of talk from both my psychiatrist and another specialist I saw for spasticity. I expressed pretty much the same thing you did- Feeling like I wasn't dealing with it very well. Both said essentially "Your response is appropriate." Seriously, you'd have to be crazy if you didn't feel overwhelmed/sad/angry/grieving.

I am glad you have someone who can give you such basic and supportive statements. When the self talk becomes destructive, it's good to remind yourself you are, indeed, coping. And coping well.
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Old 06-20-2016, 01:04 AM #3 (permalink)
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Default Re: Hope it helps others

Sleepy that was the hardest thing about when people would say to me - how are you both doing?

As if I could tell them the truth of what coping looks like!

We get it however and we know that coping is dealing with the worst monster there is, and how hard that is should always be acknowledged, not minimised xx
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Old 06-20-2016, 07:03 AM #4 (permalink)
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Default Re: Hope it helps others

I struggled for a year after diagnosis when the nurses and different specialist at the clinic would ask me "how are you doing" they would do so like the where talking with a lost puppy or a baby that had diper rash. I would lash out "How do you think I am doing - I'm dying, and not only that I am becoming a physical vegetable who can still think!"

This inevitably would lead to the "keep fighting" speech (which it seems that we hear from everyone). Which enraged me even more "how do you fight something that cant be beat???? If I had cancer yes I could fight it with treatments or nutrition, if I lost my legs I would wheelchair race. how am I to fight with a disease that has no treatment, has no cure and that you don't even know how it is caused??"

These where my typical responses to these stupid a$$ questions from people who work with us that have this nightmare, it flabbergast me to this day how they can ask them or make such ridiculous statements.

However through this forum and all the time that I have to think I have come up with my own thoughts on what "fighting" this disease means.

First- I do not feel sorry for myself or allow the victim mentality. I read about people on this forum everyday who have it much worse than me. I recognize that all though my life has been very rough, and it is ending with the king of bad diseases, that I have been fortunate enough to have the most wonderful women in my life for the past five years. Additionally my religious beliefs tell me that know matter what happens to me in this world, that due to my sins I deserve worse, but instead through the work of another have been granted the greatest gift of all.

Secondly- I try to serve others. One sure way to take the focus off yourself is to spend your time serving those you love. I put my energy into serving my wife and kids. My 19 year old son just moved in with us from living with my ex-wife in Florida. He struggled with her as far as growing up and getting a job, getting his license and just being prepared for the world. We have been working hard on getting him going and it is paying off. It helps me to help him. I try and prepare my home and other physical items to make life after my death easier on my wife. I avoid complaining about things and try to treat her like the special princess she is. It helps me to help her.

I could write a lot more but this is already to long. In conclusion fighting this disease is me defining how I am going to act, not letting it define my attitude for me. It will rob me of most everything including part of mind (my emotions can be a mess), but I will decide how I am going to respond. I will be responsible for my actions and control my thoughts, I am not a victim. This is how I have found peace in fighting this disease.
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Old 06-20-2016, 10:10 AM #5 (permalink)
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Default Re: Hope it helps others

Very well said Pete. Thank you!

We all have good days and bad days. I allow myself to grieve, and even have a pity party (without sending invitations...) for a time. But I also work hard to not let it consume me. I have ALS. It is what it is. I can't change it. Acceptance has helped me move through this challenge well so far. When I'm trying to move through the bad days, I ask myself, is this (attitude) how I want to spend my time today? Sometimes the answer is yes! Most times it's no. Then I try to accept my feelings, and move towards better ones.

Wishing you peace within the storm.
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