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Old 01-25-2005, 07:34 AM   #1
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i witness your words

Often I read here of the deep feelings some of you have about losing your "old" way of life. I hear words such as, "I feel like I have been robbed of my life."
Sometimes I hear, "I don't want to live my life if this is what it will be like.", and saddest of all, "My spouse is going to leave me". There are so many changes going on in your lives you feel swamped by the waves of emotion and pain. I hear the words of broken hearts, confused minds, tormented bodies, crying out for understanding, compassion and patience. I see the words of those cries gone unheeded.
Quietly I witness your words. In my minds eye I see you lying in your bed, puttering about your house doing the chores, walking on the beach, strolling thru the Spanish moss dangling from branches bare with winter, walking the streets of big cities and tiny towns. Within each of you I sense a ray of hope. Hope that your life will somehow find balance. Hope that peace is just around that next corner. Hope that an answer will be found and you will be free of this illness within your body.
Hope is a good thing. It will not, however, take care of today. Hope is based on an unseen tomorrow, not today. Today requires determination and guts. In order to really live today you have to embrace today. No matter how that day feels.
Our culture says pain is a bad thing and must be chased away. Our culture says we must feel good all the time. Our culture says we have a pill to fix anything that is wrong with you. I for one think our culture is full of compost. Pain is a part of life. So is feeling good. And feeling bad and crying and mourning and skipping with joy. It's all life.
How many of you have explored the things you can do now? What new talents are developing within you? It's happening you know. Right now as you read this your body is evolving, adapting and learning. New aspects of ability are coming to the forefront. I never knew I could paint until I got so bored I just had to do something! I was going nuts with all that time and no ability to do the old things I used to.
One day I just sat my butt down and gave myself a lecture. I chose the voice of my father to listen to. "Are you just going to sit here and watch yourself waste away? Isn't there anything you can think of that you would like to learn? You have all this time and you walk around wishing for something to do, so think of something? Don't you remember how much you loved to try new things? Can you possibly have forgotten who you are in all of this? You can do anything you set your mind to. If you could rebel with as much flair as you did you can use that determination to find new purpose. Rebel against that part of you that would succumb."
I am now old enough to listen to my fathers voice. Even tho he died almost 30 years ago I knew what his words would be. I decided to be a gardener first. I did not know the first thing about gardening, well maybe the first, seed and water and sun, but how much sun and how much water and are those tiny seeds really going to grow that big plant? The first year I went crazy buying seed packets, popping them in little plastic containers filled with soil and watering them every day. I kept them by the wood stove at night and in the sunniest windows during the day. Most of the seeds came up, some were a total bust.
Gently I planted the little plants. I had these plants I thought were sage. I created this tall mound to grow them on. Then one day a neighbor who really is a gardener came by. When I showed him my sage mound he smiled and said those look like broccoli to me. Then he went on to tell me broccoli would not grow in this climate. I was not deterred. I told him I planned to be the first person to have a broccoli mound that produced. I was right. We had broccoli all summer. Instead of ripping them out and taking another persons word I chose to see for myself. It has been 7 years since the broccoli lesson. I am a new me now. Filled with the old determination, imagination and a new sense of love for life as it is.
These days I know what I am doing in the garden, mostly. It was thru gardening that I discovered I could paint too. I grew bird house gourds one year. I wanted to see if painting would be fun and gourds sounded like an interesting way to start. My first works are done in 4 colors of paint. Now I see at least 50 bottles of paint, many brushes, sponges, and, well, stuff for painting. And I have graduated to painting flat surfaces as well. My brother works in a cabinet shop. He and his co-workers keep their eye out for waste wood I might like to paint on. I like the idea of recycling the waste wood into art.
My painting is abstract and impressionistic. I do not try to recreate reality. I like the fun of creating images that do not exist and leave much for the imagination to fill in.
We all have a choice to make when our perfect bodies are suddenly not so perfect anymore. At least according to our "old standard" of perfect. The way I see it my body did not abandon me. I almost abandoned it. I almost lost my will, my determination, my desire, my joy, in thinking that I was useless to myself or anyone else being "sick".
If you had a life before FMS, you still do. Your life is what you make of it.
Like my fathers voice said within me that day, "Are you going to just lie there feeling sorry for yourself? You have done that most of your life. Look where it has gotten you? Get out of that bed and get a life!" Thanks dad. As usual you are right. I love my life now. I love having FMS. For the first time my head is on straight and the view is clear blue! The sun comes out and I am here to see it. The stars shine and I am here to count them. The winds whip and I feel the power they infuse me with. The rain falls and I grow. Snow softly floats to earth and I am grounded in peace and quiet.
Someone once said here that I ought to have my own thread. This is my thread to all of you. Come to my garden filled with color and help yourself to some blossoms of patience, dance on my ground cover rippling in purples and greens and wiggle your toes in the love that supports your very being. Fill your heart with sunshine and your mind with determination.
Yes, I am unique. So are you!
Peace,
bluelakelady

Last edited by bluelakelady; 04-18-2005 at 09:25 AM. Reason: the word spectacular was *** out. ??

 
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Old 01-25-2005, 08:29 PM   #2
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Re: i witness your words

tonight i will fall asleep to the sound of rain and wind. may you all know a night of deep restful sleep. may you awaken in less pain with more love and tolerance for your body.
sweet dreams,
bluelakelady

 
Old 01-27-2005, 04:55 AM   #3
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Re: i witness your words

lady, you seem to embody what I try to live each day. I am not always successful, but I try to accept that this is part of me now...and sitting in a chair is not living. So, I work at trying to be a participant in my life..not just an observer. I have days ( this week seems full of them!) that are spent very quietly....but, the rest of my days I try to fill with beauty , friendship, and work....Those words are defined a bit differently for me now than they once were....But , they still exist, and can fill me up and make me feel like I didn't miss anything on that day. The hardest ones are when the illness flares so wickedly, that I cannot overcome it.....Those days fill me with sad thoughts, and make me less fun to be near. But, they aren't every day....and around them I work my life...weaving in and out and up and down....trying every day to feel the great things that my life IS full of....not only the pain and fatigue that may be around the very next corner....
Thanks for typing all your beautiful words...often they remind me that life is not only this illness....and some days I really need that reminder.

 
Old 01-27-2005, 06:17 AM   #4
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Re: i witness your words

thank you declady,
having fms is like being married to a total jerk who sometimes acts like a prince. yes? the days that i spend alone are always well spent. days in bed or in that chair are opportunities to improve inside of me. i work on being patient with my body so that i will have more patience for those around me. i work on having compassion for my gentle body that is in such pain. today is such a day. having compassion for myself is much harder than having compassion for others. so i learn, on the days when i cannot do anything "productive" that anyone can "see", how to do those things i want to do inside of me.
i thank you for your kind words. it is healing to discover your purpose in life. being here, offering my words to all of you, is a joyous perfect facet of my purpose, alive and breathing, ever flowing foreward.
painting took possession of me yesterday. from 7am till almost 5pm. i am painting my interpretation of the northern lights reflecting off jagged icebergs jutting pointedly toward the sky wrapped in an aura of hot pink. colors of neon, pink, blue, orange, green, purple, yellow all dance across the tops of deeply colored monolithes of ice. i chose deep vibrant reflections of the colors in the sky to stain the ice. it is for the physical therapy room where i go. healing takes color. and their room is so drab. there is no way that room is going to lift a healing human out of depression the way it is, so i asked if i could paint something for the wall. the painting is almost 3 feet long and about 22 inches high. i have pt today so i am going to bop off of here and see if i can paint some of this pain into a corner, ha! trap the little buggers and paint them purple!
sad thoughts will bite you in the arse. i paint them purple and pink and green. may the northern lights shimmer in your heart and mind chasing all the nonproductive thinking away!
peace my friend,
bluelakelady

 
Old 01-27-2005, 07:53 AM   #5
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Re: i witness your words

BLL,
Your message was very enlightening and something we'd all like to strive for. I know I have many times said I've felt "robbed." Believe me, there are times where I eat my words- I know there are people who have it much worse than I do. I work, exercise (not as often as I should ), have hobbies, LOVE to shop...so I don't sit at home and feel sorry for myself day in and day out. But there are many days where I am "pushing" through and trying to remind myself that I can do this.
It's very difficult to train your mind to believe differently. For me, anxiety and now depression swallowed me whole starting in about September. Not until now, after about 3 weeks on meds, am I having less panic attacks, crying less, etc. Sometimes we forget that there is a chemical imbalance in some of our brains and that we can't always change the way we think on our own. Lord knows I tried VERY hard to do so. I guess what I'm saying is that it can take a while to "train" your brain to accept life as you know it. Whether it be with meds, cog training, etc. You're right, society makes it seem like everything can "disappear" with some "magic" pill. We all know that that is not the answer, but rather something that some of us MAY need to help us over the hump. I know that medicine alone will not work and that I need to rethink my situation and develop a new way of looking at things. I'm hoping now that I have SOME control over the way my brain is working, I can attempt to "train" it to embody what your message suggests.
I anticipate the day that I can see life the way you do. Even reading your message made me breathe more calmly and let out a sigh of relief. I know it's probably disheartening for you to read some of the comments we post...like my "robbed" comments, but please bear with some of us. You are the reason we have hope and come to these boards to find solace. Thank you again for acknowledging that you witness our words. That is all we- or at least I- ask for!

 
Old 01-27-2005, 08:19 AM   #6
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Re: i witness your words

hi latte,
i am so glad you have found a medicine that assists you in restoring the balance of hormones in your brain. often depression is related to imbalances, and once corrected, allow free thought to return. a good shrink helps too!
it takes time to learn anything new. my way of seeing my life did not happen magically. it took time, effort and many backslides to get where i am today. my mom says i am stubborn. she is right. i used it, finally, to do something good for myself. i decided there was a way to be in this body and be cool with it. then i set about making that happen. my best most favorite tool in my tool belt is laughter. i laugh best at myself.
the words i read here do not dishearten me. they inspire me to come, sometimes several times a day, to this site and witness, embrace, and inspire as many fellow travelers as i can. love is free and i have tons of it to gift away. every morning when i wake up my cup of love is overflowing and i cannot waste it. being here allows me the freedom to touch so many good humans, the honor of speaking, the privilege of listening. i ask you, what could be better than that? if i was "well" i would never have met all of you. my life is blessed.
peace, power, perseverance!
bluelakelady

 
Old 02-03-2005, 05:08 AM   #7
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Re: i witness your words

bluelakelady,you are amazing to me thank you i didnt even want to live anymore.hum, who figured there is a reason for everything i thank God you where sent into my life. i know i sound petiful sorry. i tell i pray so much that Gods probably tried.lol you know i use to be a very good cafter. have so much stuff and dont have the interest anymore no desire for anything. sadly, i am change sence i have meet you guys thanx. love Marilyn one day at a time.

 
Old 02-03-2005, 06:24 AM   #8
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Re: i witness your words

hi marilyn,
sweetie, you get that nice hubby of yours to drag your crafting stuff to the side of your bed if that is what it takes for you to find your fun again. you have all this time to fill up with something. you are going to be in pain anyway so why not be in pain because you had fun doing something you find fulfilling?
you can do anything you used to do. you just have to do less and go slower. life is not over yet. as my grandma would say, "life is a garden. get out and smell the flowers!" she left her body three days ago. she was 96. i will not shed a tear for her passing. i will however do a cartwheel filled with joy for her. and laugh with all the memories that are floating to the surface of my mind. we had such fun. she showed me a path i have chosen to follow. her peace is now my peace.
and i gift it to all of you. there is so much.
peace,
bluelakelady

 
Old 02-05-2005, 08:43 AM   #9
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Re: i witness your words

Quote:
Originally Posted by bluelakelady
hi marilyn,
sweetie, you get that nice hubby of yours to drag your crafting stuff to the side of your bed if that is what it takes for you to find your fun again. you have all this time to fill up with something. you are going to be in pain anyway so why not be in pain because you had fun doing something you find fulfilling?
you can do anything you used to do. you just have to do less and go slower. life is not over yet. as my grandma would say, "life is a garden. get out and smell the flowers!" she left her body three days ago. she was 96. i will not shed a tear for her passing. i will however do a cartwheel filled with joy for her. and laugh with all the memories that are floating to the surface of my mind. we had such fun. she showed me a path i have chosen to follow. her peace is now my peace.
and i gift it to all of you. there is so much.
peace,
bluelakelady
Hi its me again, went to dr. thurs. and she wanted me to try elavil . took it for 2 days and i will not take it anymore i would rather hurt then feel crazy, this morning i can even think and it didnt do any good for sleeping either. if i could just fall a sleep and stay asleep i would be so much better. so no more ant-d for me tried pretty much all of them and it is not worth being foggy brain.so back to herbs and vitamins for me. i have spent so much money on meds and i am not going to do that anymore. i have had enough. thanks so much for your surport and have a great day love mb

 
Old 02-05-2005, 09:26 AM   #10
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Re: i witness your words

BLL,

My condolences on the passing of your Grandmother. Even though you can see the blessings of her passage to a newer place, it is still difficult at times, and I hope her memories and teachings will bring you comfort. I was going to ask how your ladies getaway was, but perhaps you did not go due to these new circumstances. My wish that all your family find the peace in her passing that you have managed to embrace.

 
Old 02-06-2005, 05:58 PM   #11
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Re: i witness your words

dear corin,
you bet we went away! my grandma would be madder than a wet hen if i missed a chance to play and rejoice in all the magic she gave me. i have not shed a tear and do not intend to. she died of natural causes at the age of 96. i know what she wants me to do so i am doing that. i am laughing and listening to birds and singing songs. there will be no funeral. she hated them.
i saw her obit. she would have liked it. short, simple, sweet. like her.
i thank you for your kind words. my grandma taught me to celebrate when someone dies. she said it was more important to smile, because your life was blessed with knowing someone you really loved. she was a young wife and mother when her husband committed suicide during the depression. she was strong and soft at the same time.
i just got home from the coast. it was so lovely. there is nothing like girlfriend time. i am pooped. gonna go fall on my happy smiling face now!
peace, joy and an ocean breeze,
bluelakelady

 
Old 03-15-2005, 10:09 PM   #12
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Re: i witness your words

dear new friends,
i thought i would bring this to the front again. for you new kids on the block. you are not alone. you do not go unheard. you are loved.
peace to you all from my moms house in san diego california,
bluelakelady

 
Old 03-16-2005, 01:15 PM   #13
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Re: i witness your words

BLL,

Thank you for sharing this with all of us that are new to this site, it is one that should be brought back out often to read ...you sure have a awesome way with your words, and even more astounding is the vision you have to share with each of the positiveness of this journey we have been given.
thank you so much,
uvmom, sent with a fibro hug and a butterfly kiss! To both you and your mom.

 
Old 03-16-2005, 05:33 PM   #14
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Re: i witness your words

Blue Lake Lady, Thank you.
You didn't have to type all of that but you did and I am so blessed to have read it. I have copied and pasted and made a pretty design with my crayons and chalk and big paper from art therapy and hung it on my wall signed blue lake lady. You are a doll.
What an inspiration. I think I will try painting! I keep tellingmy art therapist that I don't know what to draw or color. I will try abstracts. It doesn't have to mean anything. I wish I could see the one you are working on now. I would like to show her your post if thats ok. Also, the fmaware magazine is accepting essays. Maybe you would like to share this with them too.

Thank you.

 
Old 03-17-2005, 12:00 AM   #15
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Re: i witness your words

I love to read your posts. They are so inspirational and uplifting. Your message is so on target.

I wanted to let you know that reading your messages has inspired me to look for fun and interesting projects that I not only enjoy but can share with others. I have just started developing a family cookbook so that I can pass down my mothers and grandmothers wonderful recipes to the younger members of our family. We have had so many wonderful cooks who have passed on such wonderful country and cajun dishes that they scratched on paper for my Grandmother and my Mom and now it is time for us to pass this bit of heritage to the younger members of the family.

I also am spending more time with my Mom and she and I are having wonderful "girlfriend" visits and are even planning a trip to visit the remaining centerion in our family (my grandmom's sister).

I'm trying to relish the good days, rest through the bad ones, and to try my best not to look back or dwell on the what if's and could have beens. Of course this is not always easy but reading such messages as the one you posted here makes it an easier pursuit.

I hope your Mom is doing better and I just wanted to let you know I think you are a tremendous person.

Thanks,
Olivia

 
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