Discussion in 'Lifestyle Management' started by Marylib, Nov 18, 2009.
Kim, I love that
telling the truth
above is a three part series that discusses "levels of conscienous" it goes a little into bipolar disorder, and the narrator has an annoying voice. But if you can get by those details, the content is great. Levels of consciousnous have helped me understand a bit more about how and why I can't tell certain people, and why others may be more able to understand. However, the levels of consciounous aren't very clear cut in my opinion and some people may be a combination of levels the are not adjacent on the scale.
In general, I have just stopped telling people about my illness. I really don't have the energy to try and keep explaining myself over and over to the same people. Or worse yet, to those who become afraid for whatever reason. Even my parents who have known for 25 yrs still don't get it. I didn't completely get it, until just a year or so ago, when I got really sick. Most people are just so centered with their own state of being (epesically in the instant gratification society of the US, where capiltalism and darwinism go hand in hand) they can't or don't want to be bothered, are afraid, don't know how to deal with such a misunderstood illness. Everybody is just trying to stay afloat the extra burden can be too much even for the most robust folks. So denial, pretending to be clumsy, and just explaining it to the few who really matter seems to be the easiest for me.
I realy figured out what people were made of when getting sick. that is for sure. Suprisingly enough, even people who I viewed as really intelligent, I have a totally different impression of after this whole mess. What an eyeopener.
However, I admire those like sarahg that can just throw it out there and let it be the others perons problem.
I am in the midst of a crash, but checked in momentarily to see what's up.
I want to thank you so much for this post. It is going to help me A LOT in my current process.
BRILLIANT REFLECTIONS, that I had to emphasize for myself in BOLDS and COLORS.
YES. SO WELL PUT. thank you!
OH, that DO-DO! It's so OVER-rated. A great freedom to know you don't "have to" find worth in THAT!
OH how beautiful. AWESOME. Really. THANK YOU AGAIN.
Thank you for your kindness, Koan; I am glad you liked my spider story.
Maxine, and others, I have a deeply delightful book to recommend, called, Kinship With All Life by J. Allen Boone. Written a long time ago, it is the story of a writer who knew nothing about dogs and who was given the care of the greatest dog film star of the 1950's, a German Shepherd. What he learned from this dog, then others, about communication with animals! And how they can link us to a higher order of reality and truth--is so beautiful and helpful.
Amy and Jackie, I was so touched by your experiences with horses. I could tell such stories, adding to those, but not today.
Thank you everyone for our experience here of truthfulness!
Thanks, Koan, for posting this. A woman in my neighborhood (just two doors down) has the fatigue-type MS. She never is able to get out due to an inability to walk without assistance. Although her illness is more "visible," she no doubt has faced many of the issues raised here. I never would have thought about it except for your post. She is within reach and it's possible I can befriend her.
Jackie, I can so relate! My problem, though, is being able to read long posts. I'm sure part of my cognitive dysfunction is suddenly having ADD, and I just can't get through the longer ones. I'd like to get back to precisely where I left off, but I can't figure that out. Anyone?
Hii B.E.G! I have the same problem as you - no stamina to read all the way through.
My "solution" - for a while - DID NOT prove cost effective! I used my wireless printer and printed out entire threads.
You use up a heck of a lot of ink that way! (I received a Kodak wireless printer last year as a gift...and I must admit the ink cartridges are much less expensive than many other models I've used...but still!!??)
And I haven't figured a way to "mark" my place when reading. I now save my ink for printing out research documents when absolutely necessary.
Note: writing and reading about horses actually triggered a memory of something for me that may be "interesting" to research!
When my older horse was struggling with chronic infections...an "old-timer" horse guy gave me a bunch of bottles of Colloidal Silver Liquid....and as I was just beginning my long, down-hill spiral into total, final ME/CFS (and the cowboy figured it might help what "ailed" ME!)....she (my mare) and I shared the bottles!
I can remember laying on hay bales in the shade of the tack room and pouring a glup into her water bucket and taking a slurp for myself! We eventually made our way through all the bottles over time (and I even gave a bit to a rooster that used to wander in and out of the corral).
Of course, this same cowboy whose advice I took - also claimed to be able to treat snake-bite with a stun-gun and a car battery!?...so go figure.
I don't think it did much for either of us at the time....but it sticks in my mind that some studies have been done with this (C.S.) It didn't TASTE bad.... , nothing turned blue...and I WAS younger then!
Am I off-topic? Must go back and read the spider-story!
A side-bar hi-jack at the beginning:
Hi brown-eyed-girl & jackie
I can't read the longer posts either. Especailly if the content is complex or the paragraphs are long. I don't think it's ADD, just cognitive and memory dysfunction.
Here's what I do for the less complex but long ones that I want to try to understand (there's too many to do this with all of them though).
I copy the post to word(for jackie just in case.....Open word or whatever program you use. Back on the post, left click the mouse at the beginning and hold it down until put the mouse at the end,. The whole thing will be highlighted in blue. Then short right click. Go down and select copy. Then go to the empty page on word, short right click and select paste.)
Now that I have the whole thing, I can play around with it to try to make it easier to understand. I can make the paragraphs smaller if need be, I can bold important ideas, I can put a line at the point I've read to................ and only read a few minutes at a time.
Even with the easy ones I don't always remember what I'd read before, but I get some of them this way.
Haven't yet figured out how to understand the more complex ones. That'll be a treat when I can. So much just here I'd like to read.
back on topic:
fading here, appreciate all the posts and especially loved what dreambirdie emphasized from meandthecat's post
This is definitely a very needed reminder for me. Catch myself often having my 1st impulse be to try to "fix" things, to "help" - and often don't catch myself til the next day or even later.
thanks all - loving it
Loving this thread!
A friend sent me an email and pointed me to this thread and I have thoroughly enjoyed it.
You are the most intelligent, compassionate, clever and thoughtful group I've encountered since moving to Florida 29 years ago. I have not had or read discussions like this since back in college in Wisconsin. It is WONDERFUL, and it shows that even with cognitive problems and weakened bodies, our minds can soar far above the crowd. Some of you are fabulous story tellers and writers, and all of you are alive, awake and aware in every way that counts. What a pleasure to read!
As far as telling the truth, I agree with Barbara Ehrenreich. I tell people the whole truth and if they can't deal with it, screw 'em. Like her, illness has made me nastier, not nicer. I do not suffer fools gladly or in any other way any longer and will not put up with them, period. That most definitely includes family. Toxic people are O.U.T.
My change in attitude is complicated by the fact that we belong to a church that teaches the positive thinking stuff as it's main tenents and our minister and her husband are our best friends. A lot of my husband's work is for the church as well. I am a realist and often have to bite my tongue. I continue to go there, because this type of church leaves out the eternal hell that I do not believe in, so I agree with much of the rest of what they teach. I just can't stand the pie-in-the-sky idealism which ends up blaming the victim and forcing people to lie to fit in.
Someone suggested listing our favorite books and I agree that with such a smart bunch as you all are that is a great idea. I've already written down 3 titles to find for myself while reading this thread and would love to know what books you all love. Some of my favorite books are not related to this thread, but some are. Here are some of my all time favs....
1. Seth Speaks - Jane Roberts
2. Seth on the Nature of Personal Reality - Jane Roberts
3. The Cider House Rules - John Irving
4. The Brothers Karamozov - Fyodor Dostoevsky
5. Blue Highways - William Least Heat Moon
6. Zen and the Art of Motorcycle Maintenance - Robert Prisig
I could go on for quite awhile, but hopefully this will prompt some of you to list your favorites
Thank you all again for this lovely and inspiring thread,
You may have read this already
(I believe that the author had/has CSF)
Oriah Mountain Dreamer
Canadian Teacher and Author
It doesn't interest me what you do for a living
I want to know what you ache for
and if you dare to dream of meeting your heart's longing.
It doesn't interest me how old you are
I want to know if you will risk looking like a fool
for your dreams
for the adventure of being alive.
It doesn't interest me what planets are squaring your moon...
I want to know if you have touched the center of your own sorrow
if you have been opened by life's betrayals
or have become shrivelled and closed
from fear of further pain.
I want to know if you can sit with pain
mine or your own
without moving to hide it
or fade it
or fix it.
I want to know if you can be with joy
mine or your own
if you can dance with wildness
and let the ecstasy fill you to the tips of your
fingers and toes
without cautioning us to
to remember the limitations of being human.
It doesn't interest me if the story you are telling me
I want to know if you can
to be true to yourself.
If you can bear the accusation of betrayal
and not betray your own soul.
If you can be faithless
and therefore trustworthy.
I want to know if you can see Beauty
even when it is not pretty
And if you can source your own life
from its presence.
I want to know if you can live with failure
yours and mine
and still stand on the edge of the lake
and shout to the silver of the full moon,
It doesn't interest me
to know where you live or how much money you have.
I want to know if you can get up
after a night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.
It doesn't interest me who you know
or how you came to be here.
I want to know if you will stand
in the center of the fire
and not shrink back.
It doesn't interest me where or what or with whom
you have studied.
I want to know what sustains you
from the inside
when all else falls away.
I want to know if you can be alone
and if you truly like the company you keep
in the empty moments.
1995 by Oriah House, From "Dreams Of Desire"
Published by Mountain Dreaming, 300 Coxwell Avenue, Box 22546, Toronto, Ontario, Canada M4L 2A0
Please click here for more information about Oriah's book.
Thank you for this.
Thanks, islandfinn, for the great idea!
And thanks to all who posted.
I have found the same in these forums, intresting, often vigorous deabte.
Suportive, educational and so very empowering.
Here I have encountered so many of the traits in humanity that I hold very dear.
I always look for the silver lining, and there are so many silver linings here.
Koan, you mention MS. Can you imagine me telling people that I've been diagnosed with Fibro and MS? I'm very careful not to mention it, unless someone asks me, why do you wear those sunglasses indoors, or what is going on with you anyway? I pick and choose who I tell that I've been diagnosed with both, then I usually find myself actually putting down both illness...in a way. I might say something like, You know, that list of symptoms that goes from the ceiling to the floor? And, that MS symptoms are almost as long..that I rolled my eyes to these illness' until I had sypmtoms popping up here there and everywhere. That's how I explain..me. My family knows. Very understanding. I know, they are who really count, and, those that say they are my friends, and Believe me! A lot of the times though, I hear, "oh, that's too bad..what do you "take" for that anyway? They see sunglasses, they assume, and I myself am not assuming here..that they assume..because some go on to right out and ask what I take for pain, for sleep, even had someone ask, I was just wondering what you were hiding under those sunglasses. Hello, I just explained that I have MS and Fibro..but, as many of us here know, there are plenty out there that shrug their shoulders, and think what they will. They just don't know. Some have the compassion to try and understand, some just go their way. Us? We also go our way, the best we can.
I rarely interact with anyone new & after being sick for 11 years there are few people left in my life. 1 sister (who I don't talk to) is a nurse who "doesn't believe in CFS" and the other sister makes a substantial living giving motivational talks & writing books refuses to talk to me (which I now find very funny!) because she can't "handle" my illness & I should just listen to her anyway, do affirmations, ask myself why I "attracted this illness to myself" blah, blah, blah. If I sound cynical, I am.
A heads up on BrightSided by Barbara Eherenrich, who I really like---she mentions CFS in a negative way in her book. Which I found surprising. I don't have the book but an Internet friend in CO sent me the page...also, Ken Wilber has CFS but calls it something else...he was one of the Incline Village folks.
I rode horses as a kid & young adult--mainly working cattle, then for pleasure. I always figured I'd get back into it later in life...never imagining I'd be sick. A year ago I bought a Quarter Horse thinking, I can do this, I can somehow do this...and I can't. My ex-husband is now learning to ride her and I sometimes go watch him ride. Once in a great while I get on and ride for 3-4minutes at a walk. I remember Susie, my horse of many years--from age 11 to 24 when she died. I only rode bareback (unless working cattle) and my favorite gait was a flat-out gallop. But just getting on and riding is wonderful. Even for 3-4 minutes. Even in a saddle.
I have both CFS & Fibro but if I have to, will only mention Fibro as that seems to be more "acceptable" than CFS. I think the last time I said I had CFS, the person I told said, "Oh, tell me about it! After working all day, then going to the gym, then grocery shopping, fixing dinner, doing dishes, and I'm beat!" I felt like screaming, "I can't do any of those things!"
My dad is 84 & in great shape. He does not want to hear anything about me being sick--if he asks how I am and I tell him the truth--bedridden about 22 hours a day--he says, "that's your problem, damnit! You need to get out of that bed and do something. Get a job!" It's hopeless.
My skin has gotten progressively thicker over the years. I finally stopped trying to convince my friends and family--stopped listing my symptoms, stopped telling them how much pain I was in, about the bottle of oral thrush med in my fridge, about everyday feeling as if I have the flu, stopped apologizing all the time...I don't really care anymore--you don"t think I'm sick? OK. I have enough toxins in my body, I don't need any more outside of my body--I am tired of saying I'm sorry for something I have no need to apologize for. But it took many, many years to get to this point. And a lot of heartache and disappointment.
The only people left in my life are my 35 year old autistic daughter, my ex and my friend in CO, and some friends in Europe I email or talk on the phone with when I feel well enough. I used to be very social, a Type A personality, constantly traveled...when I got sick and stayed sick, friends & family who knew me as this "quirky poet" and "world traveler" drifted off. I got the message that I had disappointed them...
All I will tell anyone now is that I have Fibro. It's just easier and I don't hear those ridiculous "I'm tired too!" comments. Because I am just plain tired of it.
Welcome to the forum and thank you for posting some of your story.
I used to feel sorry for myself because my father in law and brother in law didn't believe I was physically ill, thought it was mental instead, and were very cruel to me.
Compared to me, you've been through hell with your "family". I think you are incredibly brave and strong. Having your entire family turn against you must have been agnonizing. We belong to a church that teaches all that affirmation stuff, etc. that your sister gives talks about.....that is why I no longer go to church. Karma will get those people one day when they become sick and get treated the same way they treat others.
I ditched the toxic people. We no longer have any contact with my husband's relatives by choice, even though it resulted in my husband being disinherited. I thank God he stuck by me. I am glad you can at least be friends with your ex.
I also understand why you just tell people you have fibro. I have CFS, fibro and Lyme, and I usually just tell people I have Lyme. They've heard of that and take it seriously, unless it's a doctor. Most doctor's think Lyme is easily cured, so with them, I just say I have fibro.
I hope you will post often, and I hope you can come to regard us as your new friends. We understand and won't ever judge you.
I know this is an old post but your comment really resonated with me Susan, some great thoughts. And this part really struck a chord.
I think that has happened to me in some cases too. Maybe one gift of this illness for me is being able to see those kind of relationships more clearly for what they are and not participating in that pattern anymore. I still want to be a person who cares and supports, but I don't want to be the person who does that but doesn't get it in return. I'm focusing my energies on those friendships that are more mutual, not necessarily writing the others off but keeping a distance and not giving so much of myself.
I also relate a lot to the original question posted here by Marylib.
Bravo. Love the lessons Dreambirdie. It's kind of like "need to know" basis, but in this case it's on a deserve to know basis--even better! Perhaps I will join you in Queendom!
I forgot what a great thread this was. Thanks for bumping it up, so I could re-read it.
This is truly an important thread, and it's discussions such as these which are so important. Thank you to the people who have shared their thoughts and experiences.
I'm sure we'd all welcome anyone else who'd care to share their story/stories. The maintenance of social relationships when dealing with personal chronic illness is something that I believe, is a common challenge to us all.
The more we normalise things such as these for ourselves, the better equipped we can be to adequately and appropriately deal with our individually varied and often complex social environments.
You can also try a Google Site Search
Separate names with a comma.