What keeps you holding on.........

[ahimsa]

I would like to know what keeps a person with CFS/ME and all that changes in life because of it, going or holding on?

For me it's my husband. I owe so much to him. He has always been 100% supportive of me.

I second the recommendations for distractions. It can be anything -- TV, music, reading, videos, crossword puzzles, knitting ...

And humor. Anything that makes you laugh is good!

But I also allow myself to grieve when I need it. Even after 20+ years (onset started Jan 1990) every now and then I still find myself crying over something that I've lost. And it's okay to be sad for a while. I don't beat myself up or think that I have to be cheerful all the time.

This too shall pass.

PS. Someone once mentioned low potassium can be related to low mood. I don't know whether it's true but I do feel better after drinking a bunch of electrolytes (lots of sodium/potassium in water). So that could be helpful if you have some type of orthostatic intolerance.

(here's a link to a post with my current recipe -- http://forums.phoenixrising.me/index.php?threads/puzzling-reaction.25992/#post-397705 -- but there are many other versions out there)

 

[beaverfury]

I keep reminding myself that the value of my life is not in what I can do

I was once very moved by a scene in Coronation Street.

A much-loved character (Vera) was in a hospital bed, close to death, with her husband (Jack) by her side.

She was bemoaning the fact that she had done nothing important in her life, not made her mark on the world, not done anything useful.

He husband said to her; "Vera love, you have made my life worth living.*

It changed how I think about what is truly important in life. It's not personal achievement, that doesn't matter.

But if you can make somebody else's life worthwhile, you have done something truly wonderful..

We can still do this sort of truly meaningful thing.

I hang on, for those who love me.

This is a new concept for me. I like it.

Hitherto, i have lived my life wanting to achieve. (For myself i guess).

It makes me question how wise it is to bring my old value system kicking and screaming into chronic illness land?
Certainly, all my efforts over the last four years have been directed towards getting 100% better and resuming my previous aims.

I have certainly improved, but i'm doubting i will ever get back to the health that could give me the top level life i desired to live.
Sometimes delusions get us through life, in sickness and in health. Not that i recommend them.


I love all the comments on this thread. It really gets to the heart of the different coping systems of people with me/cfs.
So many wiser strategies than i've adopted. (..But how does one change? It's so difficult.)

 

[alex3619]

Change is a choice, and it takes time, and therefore patience. I am still learning, still becoming someone else. Its a process, not a destination: the journey is everything.

 

[peggy-sue]

The secret to happiness is to want what you do have.

I read a study some time ago, which delineated in a quadrant form the various ways of seeing things.

It is not until you see the quadrant that you understand there is at least a whole 25% of "life-stuff" you should be grateful for, which are positive, but always ignore.

And so many folk get caught up in wanting the things they don't have...

they forget to be grateful for what they do have that they do want.

The 4 quadrants contain:

The things you want and have. +ve
The things you want and don't have. -ve

The things you don't want, but do have. -ve
The things you don't want and don't have. +ve

Everybody forgets to be grateful for the things they don't want and don't have!

 

[wdb]

I try to think of the things I do have going for me.

• Almost half the world — over three billion people — live on less than $2.50 a day.
• Nearly a billion people entered the 21st century unable to read a book or sign their names.
• Some 1.1 billion people in developing countries have inadequate access to water, and 2.6 billion lack basic sanitation.
• 1.6 billion people — a quarter of humanity — live without electricity:

If you have a roof over your head, sufficient food, clean water, heating, electricity, an internet connection... as bad as you might have it there are probably still plenty of people who would gladly swap places with you.

(stats from here)

 

[meandthecat]

I used to think that the buddist idea of right living was central to who I would be, I am a gardener and it is good, it has been tough to hang onto it.
Emerging from the years of hell of ME into the hell of austerity Britian is challenging as the last of what I valued about this culture is sold to the highest, best connected, bidder. Naomi Klein offers a powerful commentary on this in Shock Doctrine.

Now it is the teachings of don Juan that speak louder, .....Controlled Folly; The knowledge that there is no meaning, just process; and the determination to be 'excellent' in what I do. It might not be much by the standards of others but it is authentic, it values my family and the people that I know and it is my response to the scumbags that run this country.

 

[PNR2008]

Wow!!!!!! There has been some excellent responses to my question. I thank you all. I was a cheerleader at the beginning of this roller coaster ride and I would do anything reasonable to get through the dark times. If you can read, walk, shop, pray, paint, sleep whatever, do what you need at that time to make it through. The thing is the ride is always changing and what worked a year ago doesn't work now or even from a day ago. I don't know why I carry this cross but I am in the thick of it and this experience is unique to all of us. I am here in the moment even though there are many moments I'd like to forget. This is my life and I will live as much of it as possible. Thanks again.