• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Having a crisis of meaning

Aerose91

Senior Member
Messages
1,400
Wow, thank you @Judee and I found that really helpful and inspiring. Illness does not extinguish someone’s true calling or change their true soul. Your words made me think of the extreme pressure that coal must go through to become a diamond (I’m sure there are quotes about this much more eloquent than what I just said)!
Coal to a diamond. I like that :)
 

Likaloha

Senior Member
Messages
343
Location
Midwest usa
Yeah, I miss my calling...teaching the most severely physically, medically, and mentally disabled children....felt so good to be helping, the one others came to for answers, etc.....It is so hard to just lose all that because of a stupid mosquito bite! I do try to not dwell too much because I am afraid it might be as downward spiral....I can say that my relationship with my father seems to be much closer as I have become less able to do things, and I feel more appreciative for small things.... Even after 15 years I struggle with the why? and why me? but am glad to have all that I do! Love to all you wonderful people!!!!
 

Aerose91

Senior Member
Messages
1,400
Yeah, I miss my calling...teaching the most severely physically, medically, and mentally disabled children....felt so good to be helping, the one others came to for answers, etc.....It is so hard to just lose all that because of a stupid mosquito bite! I do try to not dwell too much because I am afraid it might be as downward spiral....I can say that my relationship with my father seems to be much closer as I have become less able to do things, and I feel more appreciative for small things.... Even after 15 years I struggle with the why? and why me? but am glad to have all that I do! Love to all you wonderful people!!!!

I was a substitute teacher for a time and did a few classes with pre-k and first grade special ed. Teachers are already criminally underpaid and under appreciated, special ed to an even higher extent
 

Likaloha

Senior Member
Messages
343
Location
Midwest usa
I was a substitute teacher prfor a time and did a few classes with pre-k and first grade special ed. Teachers are already criminally underpaid and under appreciated, special ed to an even higher extent
Yeah, but I couldn't have imagined doing anything else with my life! Aside from being the classroom teacher, I had extra 'duty' of being a delegated nurse, helping with nursing chores that needed to be done but our overworked school nurses taught and delegated me to do. I still get really sad each year around the beginning of the school year..... even 14 years after having to quit working! And to add insult to having to quit doing what I loved I was unfairly denied disability payments because having cfs/me, fibromyalgia, various pain syndromes, back disc degenerations, migraines, cognitive issues, post-viral syndrome, etc,etc was not considered disabling... I was so afraid near the end of my teaching career that I might drop one of my previous students while transferring or positioning them.
Sorry to ramble... Thanks for the reply!
 

Centime Tara

Senior Member
Messages
176
This whole thread is very valuable to me. Thank you to everyone who has contributed. I’m 68 and have been sick for only a year (though I had lesser bouts with CFS before), and it makes me realize I’m lucky to have had as many healthy years as I did. I’m a poet, and was a teacher and editor/publisher, very active, traveling and performing, also very engaged in Zen practice, gardening, and sewing. Now I can be up and about for 3 or 4 hours a day at most, and if I do anything in the least strenuous (even a phone call or a little weeding) it can knock me down for a few days. I really thought I would be able to come to term with this illness, haha. For a while I persuaded myself I was dealing with it as well as could be expected, but now I must admit to feeling defeated. I’ve suffered from depression all my life, have been on antidepressants for 30 years, but this despair is beyond pharmaceutical help. My Zen training has allowed me to understand the experience in one way: I know that the present moment is all there is, that nothing is permanent, that clinging to what I don’t have is a source of suffering—yes, yes, yes, but I was wholly unprepared for the almost complete loss of power to create, to do good in the world, to fix whatever’s broken, to help other people. And more selfishly, to take pleasure in the sound of the wind or the taste of blueberries, or the antics of our beautiful dog. I do still value these things of course, but they seem so . . . fragile, temporary, ghostlike. Actually, I’m the ghost! Well, maybe I’ll get a few good (skinny) poems out of it.
 

Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
Chronic illness... . At some point the reality and perspective of all this has to sink in and i think it's starting to... . Thoughts?

I’m mostly housebound now after dealing with this stuff (in depth) for 30 years pursuant to the trappings of a successful career and company ownership - which I had to give up and felt bereft of meaning.

I accidentally stumbled on Buddhist philosophy as a source to rethink the previous mindset of pursuing ‘happiness.’ You might want to read in this area to gain some intellectual alternatives to ’meanings‘ in Western thought. It’s expansive and can be enlightening.
 
Last edited:

southwestforests

Senior Member
Messages
575
Location
Missouri
I resonate very much with the losses here, as I share some of them, and I fear very much that I am soon going to lose what involvement with the world I have been able to achieve in the last few years. When my life was very narrow and I was housebound, it felt like a living death, but I began to realize that if I let that dominate my reality I would sink into despair and suicidality. So I learned to stop pining for the "I want my life back" dream and concentrated on the "new normal". I gave up hope of ever being free of this disease. I learned to love and appreciate other, less active things. I learned to find joy. Ironically, I didn't know what joy was before becoming ill.

One powerful tool towards this end is deliberate gratitude. When I feel low and I have my wits about me and haven't been swept out to sea on the despair tide, I think about things I'm grateful for. Right now, I'm grateful that I can write this, even though it is much harder to do than in less ill days. I'm grateful I can see, even though half the time my eyes go blurry for some inexplicable reason. I'm grateful that I have a home (even though its small and not owned), and that I have myriad entertainment here (I have levels based on how well my brain is doing at the time).

Also, I have my cats who have taught me the most about joy. I watch them and it takes so very little for them to be happy and content and I think to myself, "I need to be like that". There is so much of the world to marvel at. Sitting outside and feeling the breeze. Looking at the stars at night and letting my sense of wonder permeate me and contemplate what worlds I might be looking at right now. Watching bees in their busy doings. These things are precious.

This illness has in many ways been a gift to me to enable me to perceive the world deeper, to go within and find that place inside where the light is and draw on it. I am HUMAN and I am of value simply because I am alive. My value is not in what job I do, or what I can do for someone else. To hell with society's rules and values. Those are broken. I can find though this illness what really really matters. It has made me discover my worth anew and frankly it is healing my soul.

There are good points in here.
Let's call them the time of high tide.
I'm currently at a low tide.
Is this a cycle as are the actual tides or is it permanent?
I do not know.
Do I want to know?
I do not know.
Why am I here, what am I good for?
I do not know.
Is this low tide only because there has been much loss in life this summer?
I do not know.
 

Rufous McKinney

Senior Member
Messages
13,249
I’m 68 and have been sick for only a year (though I had lesser bouts with CFS before), and it makes me realize I’m lucky to have had as many healthy years as I did.

I"m 66 and have dealt with some mild version of this most of my life...but I still managed to feel like mostly I had one...up until two years ago...when things got alot worse.

So I am very grateful I was able to- do alot to further worthy uplifting causes while Providing Service to Others...while the Doing was Viable.

Now I just have to give myself permission to: not be DOING all that. Its just no longer feasible.
 

Centime Tara

Senior Member
Messages
176
@Rufous McKinney Yes, I’ve been dealing with that, too. It’s really hard for me to accept that resting so much of the time is OK. I grew up in New England, so I think I should be doing something productive 24/7. I used to do hospice work, and was on the board of the local animal shelter as well as teaching. I can’t do any of those things any more. I’m a practitioner of Zen, and one thing I am able to do is correspond with prisoners interested in learning about it. Writing letters has become an important way to stay connected to the world. I hope you can find something like that. Right now I’m looking out the window at the blazing leaves and even though I can’t go out and be in them, they are somehow in me.
 

Stretched

Senior Member
Messages
705
Location
U.S. Atlanta
I"m 66 and have dealt with some mild version of this most of my life...but I still managed to feel like mostly I had one...up until two years ago...when things got alot worse.
So I am very grateful I was able to- do alot to further worthy uplifting causes while Providing Service to Others...while the Doing was Viable.
Now I just have to give myself permission to: not be DOING all that. Its just no longer feasible.

I’m older as well and ME has progressed to being near sofa bound. What you surmise is difficult to practice daily.
Do you have a routine, goals, or do you take life serendipitously, e.g. re lack of socializing, isolation, et al? :)
 

Rufous McKinney

Senior Member
Messages
13,249
Do you have a routine, goals, or do you take life serendipitously, e.g. re lack of socializing, isolation, et al? :)

This illness is a routine generator....like how do I do anything OTHER THAN- manage this situation. Already I'm behind on the daily supplements, herbal teas, the fridge is empty and we ACTUALLY had a plan for guests today, but they canceled. And I didn't sleep well because: of the guest concept.

I'm very isolated. I have a very large abstract plan, that I am suppose to somehow get better and then I am to relocate my life to the foreign country where my daughter resides. This is the plan.

How this would happen remains- not planned yet.

For me, its like a tangent arose on the Rail Road Line called my life, and I'm now headed in some mysterious direction largely not of my making. There are tunnels, and deep canyons ahead. Cannot see around the bend yet.
 

Rufous McKinney

Senior Member
Messages
13,249
But do love the image.

I've been enjoying Rail Road synchronicities and details here lately.

I recently visited a Rail Road Museum in southern Mexico. Its right down the block from the family hacienda. On Calle Ferrocarillo.

I meant to tell you that they had an outstanding Lego display, under glass, that included: well just a mind blowing collection of Lego World beings, and infrastructure, and it included a very cool Train.

The unfortunate part of the museum is: its the depot site. It has a lovely little park for toddlers, and a great library now lives in the depot itself. And two very cool street dogs which got hugs. They are quite happy living around there.

But there are not engines, and no cars...because Mexico sold them off or something. Sad. I avoided a Crisis of Meaning and decided to enjoy the spot, anyway.
 

Rufous McKinney

Senior Member
Messages
13,249
But there are not engines, and no cars...because Mexico sold them off or something. Sad. I avoided a Crisis of Meaning and decided to enjoy the spot, anyway.

Actually, there were two cars, with various aged graffiti. Having visited THE Railroad Museum in Sacramento CA, very famous, and having been on the CA Zephyr....the two cars weren't much to write home about.
ferrocarillo.jpg
Above: tangents
lego.jpg
Above: the carnival part of the Lego world

street dog.jpg
Above: street dog resides at museum, lacks a crisis of meaning
 

Aerose91

Senior Member
Messages
1,400
I’m mostly housebound now after dealing with this stuff (in depth) for 30 years pursuant to the trappings of a successful career and company ownership - which I had to give up and felt bereft of meaning.

I accidentally stumbled on Buddhist philosophy as a source to rethink the previous mindset of pursuing ‘happiness.’ You might want to read in this area to gain some intellectual alternatives to ’meanings‘ in Western thought. It’s expansive and can be enlightening.
I work with a therapist whom I Skype with that is really into mindfulness and Eastern philosophy. A lot of our talks are based around the pitfalls of western culture. I feel I was always attuned to that but still lead a hard-charging, fast paced life. I loved it but it wasn't sustainable. I've definitely learned how to balance myself better but I'm so far on the other end of the spectrum now i didn't even know this existed. I would love to be able to start life over in the middle
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
There are good points in here.
Let's call them the time of high tide.
I'm currently at a low tide.
Is this a cycle as are the actual tides or is it permanent?
I do not know.
Do I want to know?
I do not know.
Why am I here, what am I good for?
I do not know.
Is this low tide only because there has been much loss in life this summer?
I do not know.
I get the low tides too.

I wish I knew what we are all here in this life for. To experience different things probably, and to be good to others as much as we can be. But you are definitely good for something, southwestforests, bless your heart. We all are, no matter how much we suffer sometimes.

There are going to be low tides, tears, griefs, and very hard and lonely days. I know, because I get them. But sometimes a decent unexpected thing happens that makes us smile. They are not all horrible painful days.
No, the low tides aren't permanent. They come with utter exhaustion, when we are crashed or suddenly dismayed at what this illness has done to our lives, and when we feel downhearted, but they do pass (only to come back probably another day !) and so on.....

Your handsome cat knows what you are here for.....
To be his slave ! :lol:

No ....of course I am joking. But animal companions just fill us with love and fun, even if we're having a bad time, and that's good.
 
Last edited: