Thats actually rather interesting, i didn't know there was such a thing happening in America, its not over here. We have common sayings over here "she'll be right mate" and "dont sweat it" we are known for being a layed back population, i dont really know why that is, maybe its contageous like its said so much everyone just believes it to be true so we are.lol
I call it my zen hat, i'm naturally calm and have always been this way, i laugh a lot and i'm sure it helps that i love life. Its days like this that make me very thankful for still having one to live, so i will live it as well as i can, there is nothing wrong with that in my book.
Thanks..........JJ
JJ - I'm going to go a little off topic here, as your post brings to mind an article I read recently by Dr. Andrew Weil where he introduces the concept of "Emotional Sea Level." It helped me to put into perspective the inherent problems in the 'pursuit of happiness' and the ways in which this concept is advanced by the 'positive thinking' industry.
He offers as an alternative to that model, one in which contentment, serenity, comfort and resilience are realistic, attainable and healthy goals for one's mental and physical health.
Clearly you are a very resilient woman, finding that serenity, contentment and comfort in your relationships with those you love best.
Here is the article by Dr. Weil:
"Emotional Sea Level
More than any other group in history, modern Americans are told to be cheerful, no matter the circumstance. In her book, Bright Sided - How the Relentless Promotion of Positive Thinking has Undermined America, Barbara Ehrenreich explores this culture of "toxic optimism" in various ways, but the most persuasive account she provides is a personal one.
Ehrenreich wrote that when she was diagnosed with breast cancer in 2000, she found the wildly optimistic books, support groups and popular media surrounding the condition nearly as daunting as the disease itself. Instead of allowing her to have perfectly normal responses to a potentially life-threatening diagnosis - fear, worry, anger - she was told over and over that cancer was her chance to grow spiritually, to embrace life, to find God. The result, from her perspective, was simply exhaustion - denied the opportunity to react instinctively, recover her emotional balance, and then move on to therapy, she felt profoundly stressed. She surmised that others in her condition felt this way too, at least privately.
Ehrenreich makes a valuable point. The idea that one must be, and look, endlessly cheerful is a uniquely American, uniquely modern, uniquely destructive cultural imperative. I advise you to beware of the endless books, websites, television shows, seminars, religions, drugs (especially drugs) promising ceaseless bliss. Such a condition is, I feel, neither possible nor desirable.
A central premise of my book Spontaneous Happiness, and my website, SpontaneousHappiness.com, is that it is perfectly normal to experience "the blues," just as it is perfectly normal to experience joy and bliss. Optimizing emotional well-being means gaining greater control of the variability of moods, damping the oscillations, enjoying the rewards of the midpoint. It also means not shutting down that dynamic variability, not getting emotionally stuck.
I call that midpoint "emotional sea level." It is the place from which you can take thrilling excursions up into the mountains of joy, or challenging journeys down to the watery depths of sadness - but through it all, you remain aware and confident of your ability to return to the pleasant vistas of sea level. It is here that you will find resilience, contentment, comfort, and serenity. This is your emotional safe harbor, which you can leave but to which you should be able to return easily and naturally.
Let me introduce a foreign word that describes this emotional goal. Lagom is a Swedish term that does not have an exact English equivalent; it means something like "just right," or "exactly enough." It has been called the most Swedish of Swedish words and permeates the entire culture: architecture, politics, economics, and every aspect of daily life.
Contentment, serenity, comfort, balance, resilience, together constitute a lagom version of positive emotionality and, I think, a sane alternative to the perpetual happiness expected and demanded in our society. It should be more than enough to sustain us and will not burn us out or condemn us to alternating cycles of bliss and despair.
No matter what it is called - emotional sea level, the balancing point, lagom - the good news is that it can be cultivated until it becomes our default emotional state, through attention to the needs of body, mind and spirit. Adopt simple strategies such as:
•eating an anti-inflammatory diet.
•committing to a daily exercise program.
•practicing stress relief techniques such as breathing exercises and meditation
•focusing your time and energy outside of yourself - in other words, putting others first.
Applied with focus and commitment, these may help you to find your own emotional sea level. I wish you success!"
My intent was not to take a curve of your thread with my post. I, too, was a supermum for years before my dx. I had a cheer squad, too. You have never mentioned on here that you had tried a dmd or was put on one. I tried to show the woman, I too, had been while waiting a dx. I am sorry I waited. Something as simple as the dmd might have stopped the progression.
If you want to stop posting to me ..fine...I know there are other flowers that do that also.
Sumana
Supermum, how can my garden be anything but bittersweet today? By the time I was dxed, I was in a wheelchair and it was filled with weeds. Today it looks even sadder.
There was nothing left by the time of dx to show off for you...sorry.....I could not walk. I could not hold my grandchildren....so what did you want from me? Some big fat lie?
Actually I should stop posting on threads that ask for personal information because I usually misunderstand the topic
.The point I was trying to make is not "oh poor Sumana", it was don't be a poor Sumana.
You go girl friend, i'm sure it will be the best dam scarlf, ever!
"The thrill is not in arriving at the destination, but in knowing that we've made the journey an adventure." EXACTLY!
Cheers.........JJ
I've made comments in the past about my being an adrenaline junkie. I've had MS for a very long time (my neuro is now thinking I've had it since I was a teenager), and before, during, and after, I'm hell bent on having fun with this stupid disease.
Like JJ, I love watersports! I plan on rafting and kayaking as long as I can keep it up (just as I have over the last 30 years). Even last summer, I was still paddling class III and IV rapids with some high, fairly technical water. I'm already making plans for this coming summer. PACING myself is the key, and thankfully, my sister, family, and friends GET IT!
Many of my paddling friends/family have their own health issues - a few with Diabetes, one with an ileostomy, one with a leg prosthesis (aren't WE a crew! lol)...it's not all about me!
I've had some MAJOR spasms while paddling, and I eddy out and try to relax (or howl!) until the spasm lets go. Sometimes that's 30 seconds, sometimes its 45 minutes to an hour, or anything in between.
I still do multi-day trips, I still am useful for food prep, plant identification, booze QA, Cohiba testing, and I've even helped rescue accidental swimmers through some hairy rapids. I'll always enjoy sleeping under the stars to the music of the river, and if the stretches of river get flatter and flatter, well, I'll cross that path when I get to it.
Get out there and LIVE, folks!
Love,
Lisa
JJ, I was on that wakeboard with you, girl, as you told your experiences! What a great story. I love your devil may care attitude. I understand your point in that waiting until the time is right or the planets are aligned properly may get us nowhere and we've lost an opportunity. Good for you and all of us who allow the spirit to move us into letting loose and giving it a go, whatever that may be.
The thrill is not in arriving at the destination, but in knowing that we've made the journey an adventure.
For now my next new round of fun, I am learning to knit. I've no illusion that I will ever make some of those wonderful pieces that I see in books, but it's something I never had the opportunity to learn . A dear friend offered to teach me, and I will have the second lesson tomorrow night. The best part is I''m knitting right handed, but I am really left-handed. Talk about a mental challenge. I'll be lucky to make a scarf, but I am having fun and this older friend is thrilled that she can share her talent with me.
-L
Bugger i just lost my post.
Sumana when i wrote this thread i wondered if you'd tell us about your garden, i envy your skill! Though your post is quite sad it still is bitter sweet, I can so see you dancing.
For the record, I dont see my self as waiting, its not so much that I dont care about getting it officially named, more that i'm living the best i can regardless of, living well. Sometimes for what ever reason (of which there are many) a person can't be on or isn't able to get the benefit a DMD, it happens maybe more than people are truely aware of.
Hopefully the point i'm trying to make doesn't get lost but what i'm trying to say is that no matter what has happened or what is happening, doesn't have to define who you are, its not the sum total of your life. Each day is only but a snap shot of your existance, so make each and everyone count!
Cheers.........JJ
PS Jordan is so my kind of people!
Your story about dancing at your son's wedding brought tears to my eyes. I was just diagnosed and it's funny because that's one of the first things that went through my mind, I have a 20 year old son (my only child) and no matter what, I am determined I will dance at his wedding. I hate these darn injections every day but it's a very small price to pay for a chance at remaining mobile. I thank God that these medications are available.
Daphne
Supermum, knowing you are not dxed yet and not on a DMD, I can't help but worry that your body is being damaged as they wait. I am happy for you that you have family, friends along with your husband and son that are cheering you on....I just hope that when the cheers die down you do not find yourself in a wheelchair.
I had plenty of times when I should have been cheered on knowing something was seriously wrong with my body yet no dx. However, I wasn't. The only ones that stood by me were my husband and sons. Other family members tired of hearing how I couldn't come to their events (trust me the family is large enough to have a significant event weekly) and friends sat guessing it was pure depression that I needed to seek treatment for...
I should have been cheered on when my son graduated high school as valedictorian of his class. The son that would not cheat the system by taking class below a standard he set for himself...a schedule filled with college prep courses or college credit classes. I barely made it into the auditorium. By the time I was seated my pain level was a ten. Soon the doors opened and with my son leading his class they began to file out. I stood as those doors opened but only for seconds. I had to sit asking my husband to help me up before my son passed me in the stands. As he neared my loving husband reached for me. Leaning against him with the last of my strength, I stood so proudly as my son passed..smiling. After he passed I sat crying wishing I had been able to show more respect to him.
Two years later I would cook for 300 people. My son requested it for his wedding. I had to do it in stages...little by little. The last two days a fury as I finished it. I managed to walk down the aisle to my pew with my husband but was unable to move during the reception. There I sat with guests from out of town not able to even visit their tables.
Three years later (with that damned pinched nerve now dxed in my neck) I would attend the wedding of another son. A son that dance and movement was his life. He found me one day crying at my desk (a surprise visit and yes they all have keys). I told him I would be okay that my back hurt but as always it would lessen. He kissed my head as he was leaving with him saying, "Mama, you will dance with me at my wedding". He left happy and smiling and I went into a total melt down. And yes, I danced at his wedding. Me now in a wheelchair with that pinched nerve. We danced to "It's a Wonderful Life" with him gently touching his knee against the wheelchair, singing his heart out to me while gently brushing kisses on my head. His brothers would all join in later each swinging me around and around to the delight of the guests...None would know the effort and tears it took to prepare me.
There were more..so many more times...when I should have heard cheers from family and friends. The only cheers were from my husband and sons and I know I was blessed to have that...some get NONE.
What I am trying to say, Supermum, is don't wait. Don't let them keep you hanging. I see the damage done to me that could have been prevent by the use of a DMD. Take those cheers and treasure them but rethink not getting yet another opinion.
Hi JJ!
You've been missed!
Sure - I'll add mine to the mix....
I try to do what I can no matter how long it takes me, or if it's difficult. I've always been this way. So, MS was not different when I was dx'd. Sure, I was layed up w/dysfunction that scared me, I wanted to fix it - and no matter what I tried, nothing worked. I prayed everynight I'd wake up and it would be gone, but it wasn't.
In my family, there are those who cannot walk due to complete paralysis that will never change, those who have lived cancer, and more.
As long as I can still move around, I do it. And, when help is needed to move forward, I eventually call the doc for help.
I too am proud of you, JJ, and you too, Ku, and many members of this forum who show daily just how much compassion and strength they have :)
You say, "Happy no matter the cards dealt" Excellent philosophy. When the cards rot - just stay in the game and keep playing.
Good for you! Sounds so fun! I bet your family was proud of you! Jordan went camping for the weekend in the Summer and he played so hard. I kept saying, "is it worth the price you are going to pay?" Jordan's reply "yep!". He was down for 5 days after that weekend from boating, skiing, jetski, swimming but everyday he said "it was so worth it!". I hope that can go on for both of you for as long as possible!