Wise, Wise words to live by.... please read.

[IntuneJune]

I hope I am not overstepping boundaries. The words below were a response to a blog post. After a quick search to see if the author had posted these thoughts on the forum turned up no results, I wanted to repost. Seldom do I get to the blogs, and I don't know if I am the only one, but assume there are others who also do not visit that portion of this board. These words should not be "lost" or buried on a blog response.

I was reminded of a magnet on my refrigerator: "Today is the tomorrow I worried about yesterday." These words sit on my refrigerator because I need to work on this.

Here is the response on the blog.

The wise woman???? Victoria. She replies to Spitfire's blog

Well said my friend. Great Blog.

Spitfire in name & Spitfire in Life.

We spend so much time in our lives looking for happiness or health, career or financial security. When it all boils down to it, living in the moment & letting life be as it is, is far more precious.

In 20,30 or 40 years from now, when you look back on life (chronic pain, fatigue & illness), what will you remember?

Hopefully, you will remember the laughs, friends & good times (even if they only live in this virtual life on the internet). For it's the journey that brings memories & joy, the special moments of sharing our experiences, not the never ending wishes for the future (that may never come).

If one day, you regain good health & the opportunity to live your life more fully, enjoy that too (if & when it comes).

But if you spend all your days wishing for tomorrow, one day you will wake up & find tomorrow is in the past and you missed every second of it's existence.

 

[Jody]

Nicely done, June.:Retro smile:

About the only thing I can think of to add would be, if you were to drop Victoria a private message, with a link to this thread on it so she'll see it for sure.:Retro smile:

 

[gracenote]

Thank you IntuneJune. I missed this.

And thank you Victoria. Very nicely said. I need to be reminded of this.

 

[Victoria]

Thanks for reposting this here, June.

As each day passes in recent weeks (despite my bad pain days or nights), I feel so much joy & happiness in my life. Appreciating what I HAVE got, instead of continually allowing myself to be weighed down by negative thoughts & illness, is truly uplifting.

 

[wciarci]

Intunejune,

A great, wonderful post, so appropriate for the Easter holiday. Thank you so much.

XX Wendy

 

[IntuneJune]

Spitfire's words

As I mentioned in my first post on this thread, I don't REMEMBER to get to the blogs when I come on this forum and there is some great reading there. Victoria's response to Spitfire's blog was reposted above, Spitfire's blog, of course, is more detailed and longer. Do yourself a favor and read her entire blog. "To Be Or Not To Be."

Many of Spitfire's thoughts stand out, the one about talking and listening ... I really liked.

Having been at this illness for thirty years or so, I have learned many ways to cope. Everyone here could contribute a long list of coping mechanisms. Some are hard, some are easy, some are obvious, some come naturally, some are direct, some are learned from wise folks on this forum. Some are very subtle but very complex. Some, its about the approach..or attitude..or the words we use..without realizing the effect of the words..

Spitfire blogged:


I can't do like I used to, but I don't wear it. I don't concentrate on everything I can't do. I concentrate on what I can do. What purpose does it serve to wear it?

These words got me thinking, "What purpose does it serve to wear it?" It is important that we educate the public, those around us, how awful this disease it, that must be done, we must get the word out. BUT, think about your clothes, think about your favorite outfit. Whether it is your favorite pair of PJ's for the bed-dwellers, or the blouse that brings out the best of the color in your face when you look in the mirror---guys, it might be the new jacket that creates a great image.... whatever... you know what I am trying to say, clothes can be uplifting to a point (no one is saying here you are going to feel physically better).

Our family enjoyed downhill ski trips to New Hampshire, Maine and Vermont, our three sons loved it. Every year, it was harder and harder for me to ski the entire day, each year, I spent less and less time on the slopes, then it got to the point it was not worth it. Oh I miss skiing.

I used to jog five times a week, loved the fact I could get out of bed, put my running shoes on and slip out my door and explore the neighborhood in the early morning. That is an entire story on its own... (I do not want my thoughts to take so much time here)

Well, thirty years ago, the rheumatologist informed me I must "get into the water and I don't mean to float around." I was not a swimmer, could not rhythmic breathe, I was a skier, runner. Long story short, I learned to swim, learned different ways to alleviate pain in the water through stretching, etc.

Now to the point I am trying to make, so, I took the lemon and made lemonade. Good for me.....well, only partly and this is where Spitfire's words come in to play. I did seek out an "opened a window when the door was shut" but the DOOR WAS SHUT. I was being deprived. Even though I created an activity for myself to keep moving, I was that "other person."

How did holding onto these thoughts serve me? When I look in the mirror, what do I see, someone who cannot run, someone who needs a wheelchair for anything but shorter distances, reminders of the losses.....why would I keep wearing these things, what does it serve me?

Life is not fair, not only have we been given a heavy physical cross to bear, but society's attitude has added to this burdeon (the thorns maybe?)

What purpose does it serve to wear it? When I still identify myself as a skier who now works out in the pool, I feel some pain of being denied. Where is that getting me, what purpose does that serve? Why do I wear it?

Changing my words so my words do not reflect denial: is NOT going to lessen my pain, is NOT going to lessen the fatigue, is NOT going to lessen muscle stiffness; however declaring my new hobby as who I am though feels like wearing that outfit that makes me happier when I look in the mirror.

Thanks Spitfire! June

 

[Adam]

I missed it too. I will catch up on blogs. Never seems like enough hours in the day. Wise words indeed.

Ken Kesey called it The Now Trip. Everything was a trip back in those heady days. I've been in The Now Trip for about 10 years now. I don't worry about tomorrow. I am lucky I guess. I did not plan it this way, it just kind of happened.

With Kesey in mind I wrote:

Both times he had written today. Today saw car. No date. Today witnessed…today.
Ergo. No yesterday.
Key to my survival, he thought. Always has been. At any rate, since I lost Lois it has.
I see a bird. It lands on a tree. The branch on which the bird lands, bows, springs back up again. I’m on a hillside overlooking a wooded valley. The wind gets up. I feel the wind. I see the branches sway.
The Now Trip. Experience it.
Now.
You are beside me. I touch your skin, feel your heat, the blood pulsing through you.
Now.
You hold my hand. I feel your hand. I feel a vein throb in it. We are in the moment. Fritz Perls Now Trip. Tomorrow is…unknown. Tomorrow is…uncertainty, which equals worry, anxiety about what might be. Stay in the Now Trip. Experience the moment. What is. The Now Trip.
At least, he thought, that was the theory.
I don’t pretend to understand it fully, but all the same, I reckon old Fritz was on to something. And, he thought; it really is better for me this way because I never was very good at life; I’ve made too many mistakes to claim otherwise….but, those mistakes happened yesterday, or the day before that, or the year before that; they won’t happen again, not today and certainly not the day after today. I have no need of them, or then. Not when I am in the Now Trip. So I will not think tomorrow, unless it is absolutely necessary for practical reasons, like for instance, making a Date with Rose.
No tomorrow. Victor’s world had shrunk. No yesterday. He had elected for a world in microcosm. Small, not in a narrow-minded sense, but in terms of square yardage, postage stamp size, and yet...he had an inkling all this was about to change.

 

[Misfit Toy]

Wow. I am happy that my blog got people thinking and responding and even some people angry because they think I am saying, "buck up camper." It's key to know that my thoughts aren't always cheery. Almost half of last year I wanted Dr. Kevorkian to show up and hook me up to an IV that took me to the other side. Here's the interesting part of that though, I always laughed when thinking of it, even though I was really crying inside.

This whole week has been lousy for me in a lot of ways. I am exhausted, I am not sleeping, I wake up everyday in pain. BUT, the sun is shining and it's warm. We are going into a real warm weekend and I can't wait, even if I am indoors mostly. I am happy for this.

I used to ski in VT, NH and Maine. My family lives in Vermont and New Hampshire. I skied in 2008. I have not been able to ski since, but I still see myself as a skier. I have new ski pants and got myself an awesome lightweight ski jacket this Christmas. I don't why...I am too sick. But seeing it gives me HOPE. I still see myself as someone who is ill and yet "well." And by no means am I well. I am disabled on disability and right now I am out of breath. I just choose to see myself as better than I really am at times. It keeps me smiling to think that way.

It is probably denial still, after 21 years of being sick. But, it helps me. I don't like saying, "I am sick." Sometimes I have to describe myself as sick because there is no way out. You know who reminds me that I am sick? My friends. And then I am like, "oh yeah....right." It's like some new revelation.

I think one of the problems comes in when someone starts talking about how sick they are on "every" post or blog. I get what it's like to be sick...really sick. From 2002-2004, I lived with my mom because I couldn't function. I know what it means to be so ill you can't cook, etc. But when someone posts all the time that their life sucks...it gets to a point where you stop listening. I do. "We know how much your life sucks....you keep telling us." Could you throw a funny in there or something? If I was a government official, I wouldn't be taking this person seriously. They are being factual and throwing in there a lot of "poor me." I think a factual story should be told, telling how ill one is without saying "all the time" I have got it so hard. Even if that person does have it so hard, I know when I am in that space, the people that will listen are those who are not hearing me scream WAAAA- WAAAAA- WAAAAAA. Like Charlie Brown's teacher. And I have been in that victim mode and it got me NOWHERE.

Laurel B's posts and her story and her not being able to speak are factual, and yet there is a survivor in there. A survivor who is educating in a, "I am not a victim" way. I want someone like her speaking for us. Not someone who is going to say, "Hey my life sucks, look at me and how horrible it is, I can't do anything." Leave out how your life sucks, we already know by what you can't do. I am smart enough to surmise that and so is the government. Vicki is another one who has some blogs filled with dreadful happenings. A seizure, parasites, being sick with no one to help her, but she never says, poor me, or my life sucks. She is telling a story of what it's like living with this dreadful illness. The story is not filled with "emotion" which clouds everything. It's more believable and your heart goes out to her because with all of that negative, she is not feeling sorry for herself. I am sure at the time she did, but she is stoic.

As CFIDS sufferers or SURVIVORS we have to be judicious about what we say because we can come across as malingerers.

Today I will take a shower and stay in pajamas and not be overjoyed about this. I need to take a shower. I didn't yesterday because I was too sick and the day before I could only take a bath. I want to go outside. I might push myself to go outside. But, the heat will get me and I will have to come in. THAT'S OK. I made it outside! And, I can watch a movie or figure out what I will eat tonight. Just that makes me happy.

 

[IntuneJune]

Wow. I am happy that my blog got people thinking and responding and even some people angry because they think I am saying, "buck up camper." It's key to know that my thoughts aren't always cheery. Almost half of last year I wanted Dr. Kevorkian to show up and hook me up to an IV that took me to the other side. Here's the interesting part of that though, I always laughed when thinking of it, even though I was really crying inside.

.......................................

I think one of the problems comes in when someone starts talking about how sick they are on "every" post or blog. I get what it's like to be sick...really sick. From 2002-2004, I lived with my mom because I couldn't function. I know what it means to be so ill you can't cook, etc. But when someone posts all the time that their life sucks...it gets to a point where you stop listening. I do. "We know how much your life sucks....you keep telling us." Could you throw a funny in there or something? .

Maybe they cannot (throw in the funny). This is where THEY are for now. Personally, I know others physically are in the same place, but show their quirky funny side and they probably benefit - mood-wise, they make us laugh, and they laugh also. Moods brighten, albeit, for the moment.

But others, well, maybe they simply cannot. We can chose to tread lightly over their posts, and move on. But maybe say a prayer for them as we go.

And maybe you have planted a seed in their garden....

June

 

[wciarci]

I love both of you Intunejune and spitfire and I really mean it. You think, you prod, you encourage all of us to get out of this rut, difficult as it may be and I am with you on that! Not that I wasn't 'at the bottom' at some point and needed words of encouragement because family and friends couldn't understand as our community does, but getting help up from the bottom is essential. Get up, get out! Get out of yourself! This disease is so strange in that is seems to trap us inside our suffering. I am reminded of that Robin William movie where he is a doctor that dies and his wife kills herself and is stuck in a self perpetuating purgatory, when all she need to do is look up and reach out. Was it called, 'What dreams may come?' Can't remember but the metaphor for our own illness is appropriate.

Wendy