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Posted 1/10/2007 9:22 AM (GMT 0)
Hi guys...

 

I've been mulling over my situation since my diagnosis in April.  I've been through all the emotions and I thought I'd share where I'm at.

 

I've suffered with anxiety and social anxiety disorder since childhood.  This has held me back in every possible way in my life.  I've never been a person who knew what I wanted to do, ever.  So I have always stayed behind the scenes and made safe job choices.  I'm in another safe job now and plan to stay here for as long as possible. 

 

However, I'm no longer worrying about what career I should be in next because the cognitive changes with MS pretty much have decided for me...I'm staying put.  The weird thing is I'm okay with it.. it sort of let me off the hook from doing anything amazing with my life career wise.  It's like the anxiety kept me from pursuing a career or spending tons of money on schooling for a career that I would eventually have to give up because of MS.  It's hit me quite hard already in the fatigue and cognitive departments.  No one really understood my anxiety but now I have a "legitimate" illness where people expect less of me, and I can put less pressure on myself.  Reading this, I'm not sure if this is a good thing or not.  Am I using MS as an excuse to let anxiety win, or was it a blessing in disguise to relieve the "I don't know what to do with my life" angst.

 

My grandma and mom have always said "don't have kids".  They both wish they hadn't had any, and I can't really blame them with all the illness in the family.  I pretty much knew I wasn't going to have any kids, my fiance is completely not interested and again, anxiety plays a major part for me.  Now with my MS diagnosis, not having them is a no-brainer for me and I can put my little bit of a fantasy for babies to rest (it was really a little bit, not enough to bring babies into the world as it's not fair to them to have them unless you really really want them).  One of my sisters had a child, he has Muscular Dystrophy.

 

The other thing is smoking.  I am a very light smoker, and really enjoy it.  I had planned on quitting at some point, but I've changed my mind since the diagnosis.  Maybe my thinking is skewed, but I'd rather die sooner rather than later.  Let me explain, I watched MS take away everything from my uncle.. complete paralysis, blindness and inability to communicate.  I know it's different nowadays with the treatments we have, and I'm a different person, but I guess smoking is my way of hopefully not living long enough to find out what lays far ahead in the future for me.  My fiance is also 11 years older than me and truthfully I don't want to be around when he's gone, all alone, with this disease.  

 

This sounds depressing, and I do suffer from depression, but not right now.  I'm actually in a good frame of mind.  I feel relieved in a weird way to have my future path laid out for me, even if it is one of illness.  Less pressure, no expectations, and just have to focus on taking care of myself and having fun.  I have long term disability insurance through my work and I know I'll have income no matter what.

 

What do you guys think?  Am I looking at this the wrong way, or is it okay if it gives me peace?  Trust me, if I had a choice I would not have this disease!!  I think I'm just trying to deal with it the best way I know how.

 

 

 

 

 

  

Posted 1/10/2007 1:01 PM (GMT 0)

There is a difference between acceptance and accepting reality,

and taking dangerous risks because "it doesn't matter".

Dealing with an OK-but-not-necessarily perfect job, not having a baby, fit in the first category.

Smoking is definitely in the second.  While there are some family members in your experience who have had serious complications from MS, **that does not necessarily mean that YOU will.*** Not only is everyone's experience different, the CURRENT experience for people with MS is different than even for those folks who were diagnosed (like me) just 20+ years ago!  The promise of the curent meds, and hope for the new meds, should enourage you to do EVERYTHING you can to keep healthy, strong, slow (or stop) the progression of the disease, and potentially you can live a long and healthy life. 

Smoking has NO good qualities to it.  While there is some justification for having an alcoholic drink a day...or drinking coffee...or doing some of the other things that folks will say "are bad" for you,

there is NOTHING good about smoking.  And NO reason to further complicate your already complicated health situation by continuing smoking. You say you're a "light smoker". Perhaps that will make it easier to quit.  Quitting smoking is a devilishly hard thing to do, normally.  My mother quit when they brought the oxygen tank into her house to hook her up to it, and warned her about the dangers of an open flame and the oxygen tank.  She died about 4 months later, from complications of lung cancer, emphesma and congestive heart failier, ALL attributed to her years of smoking. It was not a pretty death.  YOU don't have to face that!

Posted 1/10/2007 5:38 PM (GMT 0)
Shar

My goodness, i'd love to be able to just give u a hug right now and let u know the depth u have touched me. Yes, acceptance of u'r choices in life is a good thing...when the choices are good ones. If u don't really want children, then that's a good choice. If u don't really want the struggle that climbing a career ladder brings, then that's a good choice. If u'r at peace with those choices then they're right for u and i say bravo to u for stepping up and being in such control of u'r life. Of course u know i have to disagree with u about smoking. U'r far too lovely of a young woman to just accept some ugly form of death in this way. Tho it may be a distant death, it has the greatest potential of robbing u of some of the most beautiful times in u'r life far before death ever comes. My husband is 7 yrs older than me. I know there's a chance he'll die before me. I know if i'm left i'll be lonely without him. I also know that i'd prefer life to death at any time. I've never ever heard of anyone who, when drawing their last breath, said 'ah, nevermind...i don't really want it'. U'r natural instinct is to live...to survive. That's why u are here and why u came here with ms. Cancer and Emphesma and Congestive Hearth Failure...and many others that come with smoking...are ugly deaths. There is nothing graceful or 'silently into the night' about the death they bring. My mother smoked all my life. I grew up smelling smoke and not knowing the natural ways things smelled because my sense of smell was distorted. She quit for some years after i was grown and married and recently started back again. Her health is failing. Due to smoking?? Good chance. I bet good money that she, if asked, wouldn't be ready to go just yet. Why would u rob u'r fiance' of u, when u don't have to?

U and i don't know each other beyond this site, but u are so important to me. I truely hope u'll reconsider u'r decision on smoking. Yes, there is comfort in all u've decided...even the decision to continue to smoke, but comfort comes in very strange ways and places...good or bad. As Uppity said, there is so much hope now for MS patients. No longer do u have to be sure u'll be bound to a wheel chair or find u'rself paralyzed. Now, with the meds that are avail and the hope of the new meds coming, u can live long and happy...unless other health problems prevent that. Do u really want to find u'rself waiting for death in some quiet room 20 years from now...with u'r fiance' looking on?? Anything can happen...

U are my friend and i care...please take good care of u'rself.
Posted 1/10/2007 9:16 PM (GMT 0)

Loving, gentle hugs to you Shar,

I read your post and have done some thinking on it.  If I remember correctly, you are still quite young, early 20's?  While that seems like a long time, I feel it is short because you have only been in the "adult" part of your life for a few years.

Regarding your present job... Do you enjoy it?  At the end of the day do you feel you accomplished something by being there?  Do your days move along at a steady pace, or do you find yourself having too many long days, watching the clock, waiting to go home?  Answering those questions may help you understand what you are doing in that area.

Smoking.  I'm not going to lecture you or tell you to quit.  I still smoke myself, even after a year of  treatments for breast cancer.  I will tell you that cancer is debilitating, painful, and often fatal.  I may have MS myself, still in limboland, but I can tell you I will take MS at its worst anyday rather than have cancer again.  'Nuff said :)

Acceptance is a wonderful place to be, as long as it isn't partnered with complacency.  One of the biggest issues I see on these boards is people fighting battles they can't win, or spending all their time looking back on the lives they had, rather than living the lives they have now.

People fight pain, fatigue, psychological issues, time.....and sometimes they win.  But there isn't a pill to take away all the pain or fatigue, etc.  Most of us need to accept that the lives we had, and perhaps some of the dreams, are finished now.  That does NOT mean we just lay down and die, or don't dare to dream new dreams.  I will never have a spotless home again, be energetic, feel attractive (bilateral mastectomies) in certain ways; BUT I am still me.  I can still reach out to people.  I can still write.  I can still make the chemo hats that I donate to the chemo centers here.  I can still be a partner to my boyfriend.  I can still me a mother to my sons.  And my dream now is to finish the book I started years ago.  Another dream is to finally see if I have any artistic abilities in painting or pen and ink work.  Am I less of a person because of my surgeries and health conditions???  HECK NO!  I'm MORE of a person because I now understand even better what people go through. 

If you are at peace with your decisions, then perhaps you are in "good" acceptance.  If you are complacent, staying exactly where you're at because it's nice and safe and you can exist there until your time comes - Hon, you can still have a full life.  Trust me :)

Dream your dreams.  I can't tie my shoes the way "normal" people do, but I have created my own way.  Create your own way and paths.  The heck with the rest of the world.  You are young with many gifts - use and enjoy them :)

Love and hugs,

Michelle

Posted 1/10/2007 9:28 PM (GMT 0)
Everyone has their own way of dealing with things Shar.  Your anxiety may have helped with some of your decisions all your life but that's not necessarily a bad thing.  Even a safe job is still a job and still allowing you to provide for yourself.  Maybe having MS now, makes things seem a bit more justified to you, and that still is ok if that allows you to cope with things better. 

 

Don't let having MS justify poor choices though.  I know that the possibility of ended up like your uncle scares you, but with the meds available today it's highly unlikely you'll end up like he did.  There are many things in life that don't go as we planned or come as a surprise, but we adapt don't we?  

Posted 1/11/2007 5:18 AM (GMT 0)
WOW!!

 

You guys have given me so much to think about.  Thank you so much.  This stuff has been in my head for a while and it feels so good to get it out and get your opinions on it.  I've wanted to confide in family/friends or fiance but I didn't think they'd understand or they would be very upset by it.  I am so moved by your responses ((((((((HUGS)))))))

 

Uppity - I know what you said about the course of the disease being different now is probably true.  As for the smoking, I think I am trying to justify it and will need to reevaluate that at some point.  Thanks as always for your honesty.

 

Rhonda - I'm don't think I've ever met such a generous and caring person as you.  You are here everyday comforting everyone and it means so much.  You make a great point that smoking could kill me sooner rather than later.. I would be so devastated for my sweetheart if I ended up leaving the world before him and before my time should have been up.

 

Michelle - I am 31. To answer your questions about my job, I actually do really enjoy it, mostly for the people I work with.  When I'm not there I sure miss it, and I do find it rewarding.  I feel lucky that if I had to settle for a job, it's a least a good one :)  you said:

 

"If you are complacent, staying exactly where you're at because it's nice and safe and you can exist there until your time comes - Hon, you can still have a full life.  Trust me :) 

Dream your dreams.  I can't tie my shoes the way "normal" people do, but I have created my own way.  Create your own way and paths.  The heck with the rest of the world.  You are young with many gifts - use and enjoy them :)"

All I can say is thank you, thank you, thank you!  I really needed to hear and be reminded of that.  I love photography, and while I may never be out shooting weddings, it doesn't mean I can't create a new goal for myself.  This disease does not mean l now lay down and be it's next victim.

 

Kimber - You made a great point about my anxiety and my choices because of it not necessarily being a bad thing.  I never even thought to look at it that way... and yes, we do adapt don't we, we sure don't have a choice!

 

Thanks again everyone.. what an amazing group of people you are yeah

 

 

Shar

Posted 1/11/2007 7:20 AM (GMT 0)

You are very welcome Shar :)

I think sometimes we all need to be reminded to look at what we have, rather than what we may have lost :)

*Hugs*

Michelle

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