Thursday, January 17, 2008

Survivor's Guilt...Subtitled: Should I feel BAD about feeling GOOD?...

I seem to be in the second "R" of my RRMS diagnosis at the moment...the "Remitting" portion of the show. I am 3 weeks out from my last Novantrone dose and I'm feeling the burst of energy and wellness that has often come following the infusion of the blue dye. I have lost 9.5 pounds because of a commitment to a new intake plan, I am up to walking a distance of 2 miles at a time again, the tight banding around my waist and chest is all but a slight pressure, my gait is steady, I am less fatigued, and I only have the minor annoyance of pain in my left arm and shoulder and stiffness in my calves...the only remnants I have to remind me I have holes in my brain and spine that have given me the diagnosis of Multiple Sclerosis. I feel as *normal* as normal can get for me and it feels good.

So, why do I feel a tinge of guilt telling all y'all this? Should I shut my pie hole and just keep this flight into wellness a dirty, little secret? Am I rubbing salt into someone else's wounds who DOESN'T feel as good as I do right now with their MS?


In so many of the MS blogs I read, I witness the many difficulties faced and the adversities we each deal with every hour of every day. Some of us can't walk at all while others can barely walk 2 blocks let alone 2 miles at a time. Some of us are in constant, excruciation pain and others have lost hearing/voices/sight. And still others are urinating blood clots, dealing with medication side effects that are nasty, and fighting each day with overwhelming fatigue.


When I feel this good in my life with my MS, there is a part of me that worries my MS club membership will be revoked! Sounds absolutely silly, doesn't it? I should be REJOICING and PRAYING for that to happen...to be kicked off the MS team. If we could all be THAT lucky...


And when I feel this good, I LOOK this good, too...absolutely no one would ever know what lies deep inside my noggin when I am in the remitting phase of my MS...sometimes I even forget for periods of time that I have a chronic, progressive neurological disease. It's NOT denial...it is just the absence of relapsing symptoms. Without those acute reminders thrown up in front of my face, it's relatively EASY to forget...until the symptoms return to remind me.


I imagine these times are sort of like the psychological experience of survivor's guilt. The person who remains alive does not have a WISH to be dead...just like I have NO WISH to experience some of the horrible symptoms many of you are dealing with currently or have dealt with on a daily basis for a long time. It all boils down to my sense of wanting to FIX what you are having to go through...to be able to give each of you a small piece of the *normal* I feel...because YOU deserve to feel this good, too.


There certainly seems to be enough of the "feeling bad" to go around...such is the nature of an unpredictable disease. I just wish there were equal amounts of the "feeling good" to be distributed...evenly and fairly...amongst everyone with MS...

15 comments:

LISA EMRICH said...

Brava, please don't feel guilty!! It does seem that MSers who are feelin' good and living relapse-free are not speaking out as freely as are those who struggle with various challenges. Just as those who may experience a new symptom and seek the comraderie of others who have been there, folks who are feeling as you are need to know that they also are not alone. Thanks for that.

Diane J Standiford said...

Linda, there was a year, about 1992,that I felt wonderful! I kept asking myself, "What am I to do?" My diary from then shows daily debates on this, should I take a trip to Paris? Learn to ride a horse? Build a house? Finally, I asked me, "Me, what do you MOST want to do?" (knowing the normal time was likely a gift of limited duration)and me wanted to just be normal again, not think about MS, walk to a book store, sit and watch seagulls, go to movies with friends, feel my feet under me as I walked, gently caress the face of my lover. And that is what I did. Do I regret now that I didn't do more? No,no and no, was the best time of my life. MS takes no prisoners, when you get out---fly free! We all will fly with you. You didn't join this club, IT JOINED YOU---Go fast and far. Your friends will all be happy for you and your flight will make them happy as well.

harkoo said...

After what you have been through with your MS, I feel nothing but happiness you are feeling good at this point...I won't be cancelling my Braincheese membership because of your healthier body!

Miss Chris said...

I think you need to bask in the happiness of your well being. If you are feeling well, wear that on your sleeve...you deserve it! I'm stoked for you!

Zee said...

I completely understand how you're feeling, because I've felt that way too at times. I could go on here ad nauseum, but Diane said everything I was thinking probably more eloquently than I ever could have.

The bottom line is, you've had your share of trials and relapses and difficulties - enjoy the time you and don't feel guilty about it! Can't wait to read about your adventures!

Anne said...

Celebrate, celebrate.

Unfortunately the bad far outweigh the good and the good don't get the good press they should.

So celebrate ....and yes, write it down here -- brings much hope to others and might even prod them along to write it down on their blogs too!

Glad you are feeling great!!
Anne
http://disablednotdead-anne.blogspot.com

Have myelin? said...

Those were MY blood clots you were yapping about!

Now I'm gonna slap you. Why should you feel 'Survivor's Guilt'??? I take joy in knowing you're out there walking two miles (cuz hey, it might happen to meeee tooo) and I despair with you when you're feeling bad.

We're all in this hell together and we might as well hang on to each other as the flames lick our toes....we got a long climb up.

Keep walking, smiling and being happy.

BRAINCHEESE said...

LISA E:

Thanks for your support...I find it to be a thin line between PREACHING about cures/what works for one person and simply telling the truth of a story. Montel did great telling his story until he started "preaching"...

LD

BRAINCHEESE said...

DIANE:

TY, TY! Such wonderful words of wisdom...spoken by the "been there, done that" MS team...your experiences are both moving and "mapping", even though MS offers no REAL map to follow.

LD

BRAINCHEESE said...

HARKOO:

OMG! You mean there is a "membership" to THIS blog crap??? Oh, honey...you may want to ask for your money back on this one...LOL

LD

BRAINCHEESE said...

MISS CHRIS:

I read your comment and the word "stoked" and immediately pictured YOU on a surf board! Which DOES go with your new Hawaiian theme!!!

LD

BRAINCHEESE said...

ZEE:

And I can't wait to read YOURS now that the new medication is giving you some life back! Woohoo...ain't it grand?!?

LD

BRAINCHEESE said...

ANNE:

Thanks Anne...I've always appreciated reading your blog and the way you can make the not so great of MS sound tolerable. Must be your outlook on life that shines through...

LD

BRAINCHEESE said...

HAVE MYELIN:

Oops! Were those blood clots COPYRIGHT information?!? Ah, geez...and I was feeling SO GOOD right before I realized you were going to sue me! Wait...you said SLAP me, not SUE me. Slapping I can handle... :)

Be well, my friend.

LD

LISA EMRICH said...

LD:

lol...as soon as commercial motives are behind one's preaching (ie. Montel), I tend to not relate, no matter how I might feel at that point in time. Once it's apparent that you're just trying to sell me something, I become less convinced.

But I'm glad that you're not trying to sell us on your feelin' good, you're simply sharing it with your readers. No problem in that at all.

Lisa :)