I have some fear of the idea of recovering

Aerose91

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You have a choice on how to see your life. Sure you can pine for the loss of a normal life. However you can also recognize that it is an opportunity for you to increase your empathy for those who have to undergo suffering because you get to experience it first hand. Suffering doesn't mean that you can't experience joy. Learn to use appreciation to value what you can have and appreciate it. In my experience, some of the best people I have met are that way because they had the chance to suffer and learn humility from it. The meanest ones are those who didn't.
I completely agree with this. There def are oppurtunities for growth within this namely increasing one's empathy and clarity of direction. However, how do we apply these improved character traits if we aren't partaking in the larger social world around us
 

gbells

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@Aerose91
Am haviig a series of foggy brain days, so instead of trying to drag something out of it that makes sense, am reposting something that I originally posted in the Gratitude thread. It could be that my fear of shaking off this nasty little ill-mannered, sucking leech of an illness lies in my belief that it's provided some interesting improvements that I couldn;t have arrived at by any other route....
Reflections on being perenially ill:
Under “normal” circumstances, life tends to rush by us, a fast-flowing current filled with challenges, upsets, must-do’s, have-to’s, deadlines, celebrations, mournings, losses, gains, struggles. It moves so quickly that we’re almost always surprised that summer’s already almost over, or Christmas is looming, or gooood God, it’s the New Year, last time I looked I was shopping for a new swimsuit, where did it all go?

One of the gifts that this swaggering, strutting, threatening little braggadocio of an illness has had for me is a dramatic slowing of everything. No longer able to participate in any meaningful way in the life I used to have, I’m forced to turn inward and consider the actual value of all that participation, all that, at least for now, has been left behind. And to consider how much of who I wanted to be I actually became before this….ummm, let’s call it an intermission, an entre acte in my life, a time to try to find physical healing and allow spiritual (whatever that word means to you) healing to creep in in its wake.

There are few blessings with this illness, but I count that as one of the big ones. The inner growth, as the outer physical movement shrinks into itself, has brought realizations and recalibrations that I would never have had time for otherwise.

And I’m deeply grateful for that, while still hating the mechanism of its delivery….

Onward and upward, always :rocket::music:!!!
 
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With the loss of our identity and abilities as people, what social group can we belong to?
This one.

And here are some others, where your innate drive to help and heal others can come into play. I know it's not like RL, but it's what we've got, and for right now, it has to be enough:

LINK TO A INTERESTING SPIRITUALITY THREAD, ‘SOMETHING TO PONDER’, recently started by @jesse’s mom, from psychology to the mystical to mantras to astrology to Buddhism to Maslow and beyond .... needs some new blood, why not yours (that sounds way more ghoulish than I intended)?
https://forums.phoenixrising.me/threads/something-to-ponder.75478/


LINK TO 'I HAVE THIS HOPE FOR MAKING A HEALING CENTER FOR ME/CFS
https://forums.phoenixrising.me/thr...for-making-a-healing-center-for-me-cfs.62759/
Also started for us by @@jesse's mom, we're all invited to contribute what we'd really really like to see or have in an imaginary, fanciful, no-holds-barred, especially for us kind of healing place ..... come join us, and bring the beverage or snack of your choice. Pajamas welcome.


LINK TO ‘BED ART’
https://forums.phoenixrising.me/threads/bed-art.76178/
Charming, beguiling art, supplied by @Hufsamor and centered on the place where so many of us spend more time than we’d like. It never fails to soothe me, and increase a sense of hope and possibility


LINK TO PATJ’s ‘ QUOTE OF THE DAY’: Old and new wit and wisdom and even serendipitous guidance, and your contributions are welcome.
https://forums.phoenixrising.me/index.php?threads/quote-of-the-day.548/page-96#post-1025008


LINK TO ‘EXCELLENT MUSIC’ every kind of music you can possibly dream of, assuming you can sleep and dream, and do feel free to post your own choices here as well …. this goes for all the links I’ve posted here: contributions welcome, don’t be shy
https://forums.phoenixrising.me/threads/excellent-music.48381/page-88#post-2189532


LINK TO ‘WHAT ARE YOU GRATEFUL FOR TODAY’: An excellent place to remind ourselves of all, or any, of the good things we have in our lives, even if complete or even partial recovery isn’t among them yet.
https://forums.phoenixrising.me/ind...grateful-for-today.56762/page-47#post-1024989


LINK TO ‘POST YOUR DAILY MOAN HERE’:
https://forums.phoenixrising.me/ind...ur-daily-moan-here.55907/page-86#post-1024176
For those days when you need a place to vent, and don’t want to over-burden friends and family with stuff they don’t entirely understand and have already heard a hundred times before.


LINK TO ‘SILLY OR SIMPLE ORIGINAL POETRY’
https://forums.phoenixrising.me/threads/silly-or-simple-original-poetry.77356/
Make up your own simple couplet or longer, or just enjoy what others have written if you’re having one of those brain days …


Onward and upward, always :rocket: !!!
 

Aerose91

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And to consider how much of who I wanted to be I actually became before this…!!!
This right here hits the hardest note with me. I hadn't yet reached the goals of becoming the person i knew i could- and should- be. I hadn't yet pushed through all my fears, boundaries, or limits and grown and flourished. Some, yes, but there were others always knawing at me. They still do today
 
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@Aerose91
I hadn't yet reached the goals of becoming the person i knew i could- and should- be.
Who you could and should be will inevitably change with time, tide, and the slings and arrows, even without this nasty little buzzing housefly-pest of an illness. The fluidity needed to get thru life, even without the challenges of illness, is mind-boggling, and the harder I cling to my previous concepts of all that, abd who I should be, and what I should be, the rougher the trip has been.


Life will have its little jokes, most of them snide, and the constant reinvention and reconfiguration is wearing, but without it, where are we?
I hadn't yet pushed through all my fears, boundaries, or limits and grown and flourished
Here's the good news.


It's also the bad news: you never will. Your fears and boundaries and limits and growth and flourishment (or lack of it) will constantly and subtly shape-shift thru-out life, along with your goals. That's just the way it is, unless you're incredibly rigid and unyielding, in which case the good news is that life doesn't take kindly to that, so the road will be tougher, and probably shorter.

There really are small, barely visible to the naked eye (at least initially), little benefits to this misery, and the more quickly you can hook on to them, the faster you'll grow and change and expand parts of your life and being that you may not have even been aware of before this.

Honest.
 

Aerose91

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I've certainly grown in different ways from within this than i ever would have prior. Or things i otherwise never would have touched.

@YippeeKi YOW !! By saying your fears will shape-shift throughout life do you mean that once you overcome some, other more high reaching ones appear? I agree with that but that's the natural next step. Hopefully we reach the goals that we are after but for others, maybe there is always a next goal. I don't get upset at the goals in which i couldn't have reached yet but rather the ones that i could have-but yet didn't- by 26. Had i lived my 26 years to the utmost fulfillment perhaps i wouldn't be as bothered today. Those goals i hadn't yet reached kept me in a little state of restlessness and i wonder if that was a factor in me declining
 
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I think you’ve rather eloquently managed to sum up how a good many of us are feeling right now, but I think that, in the process, you’ve also showed that you are an articulate, passionate and intelligent person.

That says to me that you have got a lot going for you (friends can be fleeting and it takes a true friend to stick by you through the very hard times) and, despite fearing recovery, you’d make a success of it!

Yes things have been delayed and plans changed, but you need to remember that being a success in life isn’t just about the material things and how society judges you (and screw anybody who does judge you!).

I think that by battling through this illness and persevering on a day to day basis, you are successful because many others would have given up long ago.

I know exactly what you mean about a “sense of purpose” because I’m a similar age to you (37) and also mourn the career I have lost and the children I now won’t have. But something I’ve realised is that you can find a new sense of purpose if you look elsewhere and find yourself new goals that fit within your limits.

I know you probably hear this all the time, but have you considered volunteer/charity work that might be able to give you a new sense of purpose (and might be a good way to meet new friends). It’s normally pretty flexible so you can get involved on your good/better days when you feel up to it.

There’s time yet to find the partner of your dreams and you never know what’s round the corner so don’t give up yet!

Just know that you are not alone and that - I’m sure - everyone in this forum is rooting for you and will undoubtedly support you in any way that they can on any road to recovery! :)