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Mike in Maine

Distinguished member
Joined
Oct 18, 2013
Messages
244
Reason
PALS
Diagnosis
10/2013
Country
US
State
PA, No longer live in ME
City
Pocono's
Told you I’d be back with more questions, seems now that I’m realize there will be no magic fix or cure to these issues that make every day somewhat of a challenge I’m having a hard time getting accustomed to the new normal. I know I should just take the cards dealt me and play my hand. I know I should stop whining, it could be a lot worse (just look at some of the other groups in the forum), but every time I look into the future and see what it has now become or when I try to do something and I realize that I have now lost part or all of that skill, down the drain I go. Are these feelings of self-pity normal, do they pass with time, do you have any suggestions or insights on how to deal with them. I spent most of my life living by the military saying of adapt, overcome and preserve, always seemed to serve me well. Now I can’t even get to adapt on some days. I was always the bull in the china store, now I won’t go near the china store due to being afraid I’ll trip and fall and bust everything. Is the answer to stop whining, play the cards and move on or does acceptation come with time?
 
No, you are entitled the feelings you have. You are new to all this and there are all kinds of emotions involved. Acceptance and determination will come eventually.

That said after a time if these feelings continue and you become mired in them you may want to seek some therapy. We all have been in your shoes. Deep down you had a feeling something is wrong but when you hear it from the dr and your fears are founded it is still a shock.

My advice ? Good or bad is I would have your pity party and shed some tears and then try to get on with it. Find the challenge and think outside the box. Experiment to find what works and what doesn't. Mourn the failures and celebrate the successes. It won't be your last pity party but it will get easier. I have pity parties now and then even after being 6 years into my illness.

I have a saying to myself...I will go over it, under it, around it, or through it to do what I want. It may not be the conventional way of doing it and it may not be the way I used to do it but the success and joy I feel when I do accomplish it is amazing. I wish you peace.
 
bit of self pity is good for you...too much is bad.....show a battle face to others and close ones.....punch the bedroom door ....if you can punch..makes you feel better... you dont wanna be know as a winging so and so....cos you aint got a choice with wat you got...so fake it.......johnny
 
It is definitely natural to have some self pitying freak out time. It does get better, especially as you adjust. Feel free to rant here!
 
two things i have found that help me, not saying it will help you but worth a try.
1. the full serinity prayer, not the short version that many have heard. if you'ld like to see it written out let me know.
2. get mad, at the disease. show it that you won't let it rule your life or stop you. you may have to change the way you do things but it cant completely stop you unless you let it.
 
Yes indeed, we have all had to walk that road. There is a time of grieving that takes place. I have found that some creativity is in order to find creative ways to still make a difference in this world while dealing with pls. This is what made the difference for me. A life that I know belongs to my God, and a will to be the best I can be even in my broken body. My body may be broken, but my spirit isn't! I am actually stronger spiritually and in my personality than I was before I dealt with this!

So, mourn for a short time, then get angry and fight to make yourself better than before. PLS will not be the word spoken when all is said and done. Instead, let people know you for the things you accomplished after diagnosis.
 
i was out with me mates sat having a few beers...well i must have been having a winge cos suddenly they all jumped up and slapped me around the head..playfully...and told me to shut the flip up....sat down and carried on like nothing had happened....they put me right.....i owe them.....johnny
 
forgive me for not knowing- whats a winge
 
I think it's british for a whining rant?
 
ok thanks, understand some british slang but not all
 
I think we all have our moments. I know I do. Self pity is a part of what I deal with every day, You are not alone in this :)
 
I try not to focus on what I cannot do, that can be overwhelming, but do as much as I can do. Keep pushing on, never give up and it will get frustrating at times. Close a door, yell, do not break anything, and press on. At times it is overwhelming, for me watching the NYC marathon last Sunday knowing I will never run it again. That sucks, but so does not being able to zip my pants. What did I do? Screwed a coffee mug hook into my car key, now I can zip up my pants. I have also found that a flathead screwdriver opens a beer. So, improvise, adapt, overcome. Do not quit, ever, and, as someone told me here, hang in there my brother.
 
The sound of a man wailing and crying is very disturbing even to you as you are doing it.
But the catharsis can be amazing.....sometimes you have to just let it out. Being with a wife or loved one helps too.
Forgive yourself, it gets better
 
The reason I don't come on this forum very often is because its so darn depressing. I have been living with PLS for 15 years. I have the same symptoms, side effects and face the challenges as everyone else here. When I go out in public people always stare at the way I walk so I experience the same humility as everyone else.

I have learned to accept this disease. Until you fully accept the situation you are in you will never move forward. Embrace it, accept it and move on already!

Find things that you can do and that make you happy. Push yourself to stay mobile and active. Keep your mind occupied. Spend time with family and friends. This world is only temporary. The true reward comes later. Don't take life so seriously. Enjoy and live.

In 2006, three neurologist told me to quit my job because I was disabled and could no longer perform my duties. Here it is 7 years later and I'm still doing the same job. That's because I have a passion for my job and a very strong will power not to quit. The day you let this disease take a hold of you then you might as well lay down and die.
 
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