Status
Not open for further replies.

irismarie

Very helpful member
Joined
Nov 21, 2009
Messages
1,386
Reason
PALS
Diagnosis
05/2010
Country
FR
State
tarn et garonne
City
valeilles
This illness is an obsession. As much as I want to be positive and live as well as possible, I wake up thinking about it go to sleep thinking about it and every moment that I am not reading a book, watching a film, doing whatever I can to redirect my mind, I am thinking of damned ALS.
And I do not know enough to know how to direct my thoughts. Just stuck on how long and how well can I live without reaching that point where I shall reach for the pills and the bottle.........How can you do otherwise when there is in fact no hope? Is there a positive route to take?
I am not saying this in a depressed manner - just as a matter of fact.
Irismarie
 
Yes, it is true. It always is the background music in our lives. What helps us is the moment by moment practice of the attitude of gratitude. I know it sounds cheesey but it works for us. Right now this moment, I am soul grateful that this forum and these fabulous individuals are just a post away from my heart! What are some of the things that you always dreamed of doing but never did? DO THEM no matter how silly! Write letters and tell people how you are soul appreciative for having them in your life-what they mean to you. Keep a journal and take photos. Celebrate the simply fact that for the first time in your life you do not have to count CALORIES and eat dessert first!
LAUGH! Saturate yourself in the gift of the present moment. Do something for someone else. There is always someone whose situation is worse than yours. :] sending you oceans of love and the power of the Prairie to give you hope and comfort this morning. Kay Marie
I am going to upload [if it works] a photo that I took of the sunrise yesterday. Look in my album-it will make your soul full of wonder!
 
Irismarie, when my partner was diagnosed I had some counselling in order to come to terms with his diagnosis. Talking to someone helped me, even though I was not sure about it at the time.

I am an atheist, so anything to do with praying for a cure or hoping for an afterlife, meeting him again one day, him being in a better place and so on, was not on the cards for me. Some people find comfort in religion and that is great for them, offering peace, acceptance and a sense of 'hope'.

"...how can you do otherwise when there is in fact no hope?" Well, I deal with that one with the view that there is no hope anyway (an an existentialist philosophy manner, with a view that all that happens is random, unpredictable, absurd...that it happens for no reason whatsoever). I know this is not for everyone, but this is how I live my life, and have done for a long time now. My partner's MND slotted into this kind of philosophy, and we sprinkle a lot of dark, black humour on top of it all.

Dani
 
Upload did not work.
 
thanks Dani, i found your post to be very honest and intriguing. you are a well spoken and intelligent gal.

Although i live at the completely other end of the spectrum. i do believe in God, i believe Jesus died for us, and i believe i will be in the presence of glory when my time here is done. i am grateful all of my kids and my husband have accepted Christ's forgiveness and i look with hope to an eternity with them. that said, daily life is often hard, almost unbearable at times.....but every truth of the Bible is that indeed life will be hard. I just pray for strength and i know i don't want to miss a thing, so i want to be here as long as i can.

one day at a time i guess:cool:
 
Dani, I completely agree with the "we sprinkle a lot of dark, black humour on top of it all"! If you want to have an overdose, watch the movie FARGO-such midwestern black humour! I believe that there is nothing in our life that is a random coincidence-that it is all full of meaning and is only to promote our spirtual growth. :] Scientifically, matter can never be created or destroyed. :]
 
irismarie, is this a coincidence?! I just read my daily OM horoscope and it was saying just what I posted earlier to you. I am going to copy and paste it so I can share the gift of it with all of you. :]

December 1, 2009
Everything You Do Matters
The Ripple Effect
In a world of six billion people, it’s easy to believe that the only way to initiate profound transformation is to take extreme action. Each of us, however, carries within us the capacity to change the world in small ways for better or worse. Everything we do and think affects the people in our lives, and their reactions in turn affect others. As the effect of a seemingly insignificant word passes from person to person, its impact grows and can become a source of great joy, inspiration, anxiety, or pain. Your thoughts and actions are like stones dropped into still waters, causing ripples to spread and expand as they move outward. The impact you have on the world is greater than you could ever imagine, and the choices you make can have far-reaching consequences. You can use the ripple effect to make a positive difference and spread waves of kindness that will wash over the world.

Should the opportunity arise, the recipient of a good deed will likely feel compelled to do a good deed for someone else. Someone feeling the effects of negative energy will be more likely to pass on that negative energy. One act of charity, one thoughtful deed, or even one positive thought can pass from individual to individual, snowballing until it becomes a group movement or the ray of hope that saves someone’s life. Every transformation, just like every ripple, has a point of origin. You must believe in your ability to be that point of origin if you want to use the ripples you create to spread goodness. Consider the effect of your thoughts and actions, and try to act graciously as much as possible.

A smile directed at a stranger, a compliment given to a friend, an attitude of laughter, or a thoughtful gesture can send ripples that spread among your loved ones and associates, out into your community, and finally throughout the world. You have the power to touch the lives of everyone you come into contact with and everyone those people come into contact with. The momentum of your influence will grow as your ripples moves onward and outward. One of those ripples could become a tidal wave of positivity.
 
I too find myself thinking about ALS much of the time. It affects so many areas of my life already even though I am in the early stages.

What gives me hope? I'd say first, the support and love of my wife, who has promised to do everything she can for me, but who has in return made me promise to stay alive for her as long as I can. We are facing this as partners, and knowing that she will always be there for me is the main thing that gives me the courage to go on. My family too, and the community, have all been supportive in so many ways and this has helped me be more positive.

I also hope and believe that I will be able to continue to do many things that I enjoy, such as reading books, listening to music, watching movies and TV shows. Also I hope that with computer technology I will be able to interact on the net and with speech synthesis. I even hope, since I am a software developer and have always loved programming, that I will be able to continue to contribute to the world with software projects even in the late stages of the disease.

As far as death, well, we were all going to die anyway even before ALS. There have never been any guarantees that we would live for a certain number of years. I do hope to follow Joel's example and use technology to extend my life as long as possible. My wife insists on it and I have learned in 30 years of marriage that on certain things she gets her way. :)
 
Wow! Thank you all for your wonderful replies. I love you all
Iris
 
I know it's pretty hard for me not to think about ALS since I also have Obsessive Compulsive Disorder. :eek: However, I am not generally unhappy as my progression is fairly slow, and I occasionally try a new treatment that I think may help slow it down more, which helps boost my psyche. I also plan on extending my life as much as possible and am hopeful that I will be around long enough to reap the benefits of new treatments, such as stem cells.
 
interesting point of view, big Mike
I am beginning to think I must be more of a coward than most as I cannot envisage going through the later stages as some of you are already doing with courage and even humour and some kind of hope. Thank you for your calm and sustaining replies
I send my love to all.
 
Dear Irismarie,
You're not a coward-this is a horrific disease and coming to terms with "how to LIVE with ALS" is a major challenge. My husband, is in the early stages and also makes comments about not being able to imagine getting through this. We are finding peace with the "live in the moment" philosophy as much as possible. You truly don't know how you will handle down the road, until you get down the road. The people on this forum give me great comfort. They are courageous, positive and have found an ability to have a wonderful sense of humor and peace in the midst of the tragedy. I will add you to my prayers-

Peace
Melody
 
thank you Melody - and my thoughts are with you and yours
Love
Irismarie
 
interesting point of view, big Mike
I am beginning to think I must be more of a coward than most as I cannot envisage going through the later stages as some of you are already doing with courage and even humour and some kind of hope. Thank you for your calm and sustaining replies
I send my love to all.

Hi irismarie,

I'm sure you have plenty of courage, irismarie. I don't believe there is such a thing as fearless courage. We're all scared--I certainly am. I deal with it by staying busy researching the disease and seeking treatments that may help based on scientific rationale, as well as working on an ongoing computer project. It's all about adapting-it takes time and you will find the strength to do just that.

Mike
 
thank you, Mike.
May I ask what is your computer project?
 
Status
Not open for further replies.
Back
Top