Jump to content
Forum Conduct & Guidelines Document ×

What now?

Recommended Posts

  • Members

Since diagnosis, my mate and I have been constantly together. Now she's gone back to work, by mutual agreement I don't drive, I have difficulty reading, and I don't watch TV. Sometimes the fatigue is so bad I could curl up right here on the floor and sleep (maybe my heart rate's bottoming out), and I'm somewhat reluctant to leave the house for a walk for fear of falling, even with a cane.

I get the whole idea of getting up, showering, shaving, and getting dressed, but after your mate's off to work and the dishes are done...how do you avoid simply sitting around and waiting to die?

Oh, yeah; and my feet are so very cold they HURT; and for the first time, my whole lower legs, too. Sitting bundled up in sweats in a closed room with a space heater in Florida.



Link to comment
Share on other sites

  • Members

Dear Emmet,


I can't even begin to imagine how you're feeling.  Any person of any sensitivity would fear, as I do, that we have no basis of understanding to be able to help you and therefore are afraid we would do worse by speaking up.  But you have asked a question and I feel the need to brave my own inadequacy to tell you, at the very least, what I know.


The only thing I know in this life is that what is important is how we feel.  What we feel is the instant determiner of how we perceive this life.  The second most important thing is to not judge how we feel.  Any negative judgement about how we feel creates another instant reaction: instant doubt about ourselves and everything we believe.


These things take place instantly and unconsciously.  It takes practice to be able to recognize and control both of these events.  But it is possible.  There are hundreds of self-help, motivational, spiritual, etc. practices out there and what they teach you, in their many and varied ways, to manipulate is one or both of those things.


So it is good that you are searching for something else to do instead of sitting and waiting to die.  Unless sitting and waiting to die brings you peace and comfort, searching for something else is natural. 


The reaction we have to judging ourselves for being ourselves comes next - our feelings determine how we perceive the world, if they are strong feelings that create confusion (or other strong feelings) we judge ourselves for having them, and the reaction from this creates the desire for something to change, something to satisfy us, something to fulfill us, something to save us or help us.  This can lead to things like addiction, gangs, self-destructive behavior.


Just a note, this can all work in the other direction, as well.  Feelings of love create the sense that the world is a wonderful place, creating a peace within ourselves and the feeling of invincibility.


The reason I wanted to give you this information - information drawn from my perception of life only - is because as much as you are in an extremely difficult situation, one that has every right to cause you a huge amount of strong and scary emotions, I wanted to express that there may be a way to help yourself.


But it will take some work on your part.  The first part is to decide that you do want to experience a change.  That feeling better, in this moment when nothing else can change phsyically, sounds like a good idea and you're willing to work for it.


Understand that I know, through working with some very depressed people in my family, that this can actually be very hard work, this is why I'm saying it this way.  I do know that it's not always easy.  So at this time, I want to say that if you find what I'm saying or suggesting too difficult, that's ok to - remember rule#2, please please don't judge your emotions.


Having made a decision that you are going to do whatever you can do to feel better, then you take stock of everything you can do.  I don't know your environment or skills so I can make very few suggestions but the key is in your engagement.  The key is to find something to do that matters.  This doesn't work if you're just doing something to pass the time.


For example, start a blog on wordpress.com and write about your experiences in your illness and your learnings about life?  I give this suggestion only because this is something I would think about if I were in the same position as you.  Because even if it helped one person who stumbled upon it, I would feel like I was contributing the wisdom of experience.


Like I say, I find it very difficult to give other suggestions because I don't know your life and location but the way to engage is to find that piece of expression inside you and allow it to come out.  Maybe by trying to draw or to paint?  These are simple examples but maybe they will help you be able to find your own.  It is about finding a way to allow who you are to be manifest in this world.  To some people, it's about creating things, to other people, it's about volunteering, and to some people still, it's about absorbing knowledge.


And as simple as all this sounds, it is the truth that I have learned.


When my father died, I made a promise to him that I was going to figure out the meaning of life.  He would chuckle today if he were still here that I even thought to be able to figure that out, but it became very important to me.  I haven't figured it out yet - obviously :) - but I do know that we cannot avoid thoughts of our death and most people, if alive, will be touched with grief and soon learn what there is for them to know about life and death.  It is within this framework that I have tried to help myself come to a place of understanding that death is just as important as life.  Once it touches our life, in any way, we are forever changed and there is no avoiding it.  And the platitudes are unhelpful - so you should live your life everyday to the fullest, etc. - even if they may technically be true.


What I have learned is that death makes you find out who you are.  And in finding out who you are, you learn how to cope and how to move on and how to... almost everything.


I am expecting this to help me when it is my turn to die.  I will find out who I am and, hopefully, I will have the presence of mind to be who I want to be.


I feel like this has been a little wandery and rambley and I apologize if that is the case.  I just hope I've given you some things that will help you find your own answers.


Know that your bravery in reaching out is inspiring.



Link to comment
Share on other sites

  • Members

After reading of the real-life horror show of several patients and their caregivers in the advanced stages of MSA (Multiple System Atrophy) in another support group, this:

"........knowing what is still to come for him (her caregiver and mate), is worse for me and I have a deepening sense of dread and guilt about ruining his life. Do any other patients feel this way ?"


Yes; very intensely. There will come a time when my survival beyond a certain point will no longer be in either of our best interests, and I will have to do something about it while I still have the capacity to act.

Link to comment
Share on other sites

  • Members

There will come a time when my survival beyond a certain point will no longer be in either of our best interests, and I will have to do something about it while I still have the capacity to act.


Speaking as someone who has been in a loving and committed relationship, please have this discussion with your mate who you've written about and who has been so supportive.  This may be an action you both choose but I would caution you to make that decision together, for her sake as well as for yours.

Link to comment
Share on other sites


This topic is now archived and is closed to further replies.

  • Create New...

Important Information

This site uses cookies We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue. and uses these terms of services Terms of Use.