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Posted: Thu Oct 01, 2009 12:54 am
by RedSonja
No, not happy at all. The woman must be weird.

But I can say, since I accepted I am not going to be a mountain climber now, I am probably a nicer person to know. I don't get stressed if things are not done, just because I can't do it myself. I gave up being a perfectionist in things that really don't matter. I take a bit more time. I plan in pauses. I stop gardening and chat to the neighbours. I call my sisters and talk for ages. At work I say, no, I can't do that too, I've got enough. I take time to say hello properly to people I meet.

Apart from that is is monstrously unfair and I hate it. My sister got MS after chain smoking, eating junk food and watching television 18 hours a day. I got MS after eating healthily, never smoking, doing lots of sport. If there were someone I could blame I would kill him and get my health back. But there isn't; I'm stuck with it.

Posted: Thu Oct 01, 2009 4:28 am
by euphoniaa
Well, gosh, why does anyone think we should be "thankful" for MS? That's just plain silly. Why should you spend all day trying to convince yourself that there's a damn thing good about having MS and then feel guilty that you can't? And I hate the "look on the bright side" attitude and the "every day above ground is a good day" sentiments with a passion.

I see the glass as neither "half full" nor "half empty", but instead I probably knocked it over, spilling it onto my new shirt as it tumbled down to land on my bare foot, where it broke my toe, causing me to hop in pain, as I then tripped over it, shattering it into slivers that I stepped on and cut my foot. And whatever was in it spilled and made a stain. And that's a very real representation of my life, with or without MS. :)

At the same time, I've discovered that life with MS (or life with anything) is so much easier to take when I accept its absurdity and face it with laughter. Lots of laughter. It's not from thankfulness, but acceptance and a sense of humor and awe at life's surprises.

To me, the key was somehow learning, over the years, to accept whatever happens without anger. No matter how short life is or how trying, life is way too long to live it pissed off all the time. What a waste. I laugh my way through every day, even though my life is so weird I don't even rank MS all that high on my list of Top 100 Horrible Life Problems That Freak Me Out. I often get chastised for not doing MS right, not being angry enough, and for actually finding humor in some of it – especially in MS forums. But I sure wish I could figure out where my humor and acceptance came from so I could sell the secret. One of the saddest things to me is watching the pain in others as they go through this MS life.

(The following is entirely true, with no exaggeration, as are all my stories...)

Maybe it helps if huge portions of your life already suck before your dx. Several years ago, I went into this deep depression for a short time. For days I was inconsolable, the tears flowed almost constantly. I could think of no reason to live. I was new at internet research, but I spent several days combing the Net for a way out of my pain. I did searches for "suicide assistance," but all I could find were sites trying to stop me from doing it, not showing me how to perform it efficiently on myself. Boy was I pissed. Becoming more and more frustrated at the ridiculous situation (and my stupidity and ineptness on the internet), something inside me finally snapped - I burst into laughter and the dour mood was gone – for good.

THEN I got a diagnosis of MS - 3 or 4 months after that incident. Honest! And within 6 months I had a few other scary diagnoses as well. But the day of my MS dx, I looked up MS on the internet (with the newfound skill that I had thankfully acquired through suicide research – see, there's something to be thankful for! :) ) and all I could say (I actually said it aloud) was, "Damn! What a crappy disease! I must have had MS for 30 years and it hasn't managed to kick my ass yet! Cool!" I patted myself on the back and it was somehow empowering and encouraging to me.

Life has been highly bearable and often hilarious to me ever since, even as it continues to bash me regularly with new challenges. MS progression. Family crises. Money challenges. Home. People. Work. I did almost lose my appreciation for life's tricks a couple years ago. I came home from work that day elated that my mailbox was full of the checks I'd been waiting for and opened my house to find all my utilities had been shut off the same day. Oh, the irony. But I digress. And I still can't stop laughing about it. :)

So anyway, the day AFTER my dx, I helped get my mom moved from one nursing home to another, noticing our matching tremors as we sat next to each other. I spent the next 5 years watching her die a slow death from Alzheimer's, knowing that it runs in families and it will probably get me WAY before MS does. I have a job, I have insurance, and I'm surrounded daily by people way sicker and more disabled than I am. I'm doing okay.

I'm not the slightest bit thankful for MS, but I'm eternally grateful that no one ever told me I had it until now or tried to treat me for it. I'm completely convinced that I'm still this strong and mobile because 20 years ago I started a diet & exercise routine before anyone told me I was too sick for it to help me. And my fragile, arthritic bones (dx'd with DJD also, as it turns out) haven't been destroyed by doing any steroids. And I believe that exercise improves my outlook more than drugs would.

I'm not the slightest bit thankful for MS, but I'm grateful I found people to share the journey with. I truly wish health, happiness, and humor to you all. :)

Posted: Fri Oct 02, 2009 12:25 am
by RedSonja
euphoniaa, you are an absolutely fine person. We need more posts like yours. I will watch out for you in future.

Please fill in some profile details, I really like to see who I'm talking to.

Posted: Fri Oct 02, 2009 7:11 pm
by bibliotekaren
Lorrie Jorgensen wrote:Sometimes I wonder if I had not been diagnosed with an incurable chronic disease would I have made this kind of commitment to myself and to my health. In a way having MS saved my life because I've chosen to live and fight every day. I'm glad I will never know what not having the disease would have been like.
My first gut response is, "Bully for Lorrie, MS has improved her life." However, I admit that sounds rather caustic and on some level I truly appreciate that this is her truth although most certainly not mine. I had successfully fought plenty of demons prior to MS and did not need it to motivate me for positive change in my life. And, MS along with brain surgery recovery has whacked me hard right out of the gate altering my life significantly.

But lest I be guilty of not allowing space for the radically huge differences in how MS affects us physically, mentally, emotionally, financially, culturally, etc., I guess I can accept that for some people their form of MS applied to their particular life circumstances, MS is a gift. While I do acknowledge a few positives, there is absolutely no question, I'd love to return this "gift". Now, is that in-store credit or cash?