I have been pondering myself lately. I feel I am doing well with the whole MS thing. There is so much more to write about and especially about the synchronicity parts!
Maybe this is strange to say but I have kinda been here before. I have already dealt with a diagnosis for my youngest son...for his special needs some years ago. In a lot of ways the MS diagnosis felt similar yet....there has been some huge differences...in me and how I am coping this time around.
When I found out my son had autism, I poured myself into research. I did end up appreciating personal accounts the most, but...man did I reasearch as well. I could now say that I am some kind of expert over these years of reading and researching. All I could think of was...this is my baby...I gotta save him.
But now for me...well...initially I researched with the same frenzy when I wasn't sure what I had. I am now very good at researching...thank god for the internet. I can find information very fast and also make sense of most of it. But then a weird thing happened after my official diagnosis....I stopped reading and researching. I stopped visiting an MS on-line support group. I knew what this was and...I didn't/don't want to go any further right now.
Perhaps it is a bit of willful denial? Or perhaps I know that I need to conserve my energy for the long haul. I also know there are no easy answers...no cures...and becoming obsessed with all the research isn't so healthy. Least not for me.
I guess I am not sure what I am feeling. This is such a crazy disease. Sometimes you feel MS symptoms and sometimes you don't. Maybe I am stupid but I am imagining it to not be so horrible so far. But yet I know that it can be. I know it is unpredictable. I have lived in fear so much of my life. I would kinda like to save all that energy for other stuff...like enjoying my life! I don't want to stand around helplessly wringing my hands saying..."oh dear oh dear...what horrible things will happen to me?"
I am not worrying, or fussing, or moaning. LOL...what is wrong with me? I am worried that I am not worried. Maybe it is because I have faced so many unbelievable things in my life...I am like...okay bring it on. And maybe too my complacency is due to...it is me this time. If one of my family members or friends just got diagnosed with MS...I would be researching into the wee hours every night. But it is just me and I stupidly think I can handle whatever comes.
Don't worry... I am not that naive...I know that this disease can and probably will knock me to my knees. Matter of fact...it has done that already. It will knock the shit out of me. I will be humbled. I will most likely beg for mercy. But honestly my moods terrify me more than MS.
You know what else it is? I think it is finally hitting home for me that I don't have control over everything in my life and...I can't expect to. This MS thing is forcing me to let go...make some peace with myself...and to be grateful for the moments I do have.
Leave it to me...I worry about not being worried enough.
Come sit a spell and shoot the breeze. Sweeten the day with a little synchronicity...
9 comments:
Wilful denial ... conserving energy ... yes very possibly, but more than anything it seems to me that you use your self knowledge to navigate the best route and live with both relish and grace.
Everything in life comes to you as a teacher.
Pay attention.
Learn quickly.
This is a true statement.
Think on it.
Pain, illness, worry; all are great teachers.
Weird ... my son is also autistic, and also diabetic. I had to deal with this, as you say, and now I'm dealing with my own disease (MS). How is your son doing, by the way, with the autism?
I know exactly what you mean about worrying that maybe you're not worried enough. Lol. Well put. But it's true--it seems like right now people I know who don't have the disease worry about it more than I do. It makes me feel somehow guilty or negligent!
Hi. this is my first time to your blog, but I already relate. I was diagnosed with MS almost 2 years ago and have been surprised by my lack of worry and researching. I told my nurse that I've been feeling really good and that sometimes I wonder if I was misdiagnosed. She said she likes to hear that because it means the medication is helping, "but you really do have MS," she added. Like you, I don't go to the MS boards any more, and although I know there will be some bad days and that some day it might be really bad, I'm going to take it as it comes and enjoy the days I do feel good.
BTW, I just wanted to thank you for the post on depression "light and then dark." You put into words beautifully what I couldn't seem to express. I read it to my husband and I think it was a whole new level of understanding for him.
I am a worrier too, maybe comes from our mothers 'stuff.' My partner is chronically ill and has taken me many years to learn to live with that worry. I am just lucky I never got into drugs or booze. If we do or don't worry, life goes on. Take 2 laughs and call me in the morning.
Merelyme said:
"Maybe it is because I have faced so many unbelievable things in my life...I am like...okay bring it on."
I only know you by what you write. This statement seems to hit it on the head.
Interesting that you wrote your moods terrify you most. I too sometimes feel worried about this, for myself. I find myself in just the worst damn mood, even overly depressed for no damn reason I can think of. The only way out of it is to remind myself to be positive and stay the course. It doesn't always work but it helps.
my sister was diagnosed with MS 14 years ago. What constantly humbles me is her vibrancy and determination through every adversity. I wish you every hope and joy for 2008.
My wife's daughter who is 25 years old is living with us due to her disabilities. She have cerebral palsy and mental disabilities. My wife and I are often worried that when we get old, who would take care of her.
I love this quote by Corrie ten Boom, "Worry does not empty tomorrow of its sorrow; it empties today of its strength."
I have leaned that being thankful releases me from fear and worry EVERYDAY.
However, I still worry at times and my wife gets on my case when I worry.
When you need to learn more you will do it. Maybe you just need a break right now.
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