What is (or was) your biggest fear upon diagnosis?

[sllowe]

Hi there,

We all have so many varied experiences, thought it would be good to ask what was your biggest fear when you heard you had MS? Or, one of the infamous mimics? And, I don't want to exclude our limbolanders -- you are a huge part of our family here. This is for you too! I hope this helps you too.  If even small, there had to be something you were scared of. If you feel comfortable, spill it! It's a good way for us all to get to know one another a little more.

My fear was that the Drs were wrong. As far as I was concerned, I definitely had a stroke. I wasn't afraid to have MS, just didn't believe they were right. Heck, I knew nothing about MS. And, I was smack in the middle of my 1st attack. I was definitely scared (though I'd never have admitted it to anyone then) each day waking up to what I lost most, which was the ability to think and react all at the same time - it was chewing, driving, looking, reaching, writing, listening and responding to people, etc.  Whole nother meaning to walking and chewing gum at the same time, haha

Seriously though, what got you going?

-Shell

[mj111169]

I'm no where near a diagnosis of anything - but my biggest fear is not being able to carry my 2 year old daughter safely.  She wants me to carry her sometimes and I do - most of the time.  But there are times when I am afraid if I attempt to carry her down the stairs I may either drop her or we will both take a fall.  

My husband works out of state and is gone for long periods of time.  So I miss having him to give her a boost now and then.

I have taught her how to navigate the steps on her "bum".  I have a feeling that someday I may be joining her!  : )

Maureen

[lovemy6monkeys]

My biggest fear is optic neuritis, losing my vision for any length of time. It is the reason I have pushed so hard to find out what was wrong with me, and why I would not consider giving my first neuro another minute of my time (after she very politely suggested maybe it was anxiety causing my symptoms). I am lucky in my current neuro.

I have an online friend (from an online mommy playgroup) who has MS and was diagnosed very quickly and dramatically. She gets ON and can lose her vision for weeks at a time. She is such an inspiration, does not ever let it slow her down...heck, last winter she designed and knitted my 3 youngest kids winter hats, all while not being able to see...and the hats are flawless!

And yet, losing my vision still scares the stuffing out of me! I hate that my eyes seem "off" a lot. I know my pupils are not always working well...at times if I walk into a dim room it seems darker looking than it should be and I can barely see. I get photophobia sometimes. I try not to dwell on it too much.

I was actually relieved and glad to be (mostly LOL) diagnosed and when my neuro offered DMD. I honestly think this is my fighting chance to delay progression, and I am going to fight that progression with every drop of fight I have in me, and when I think I have no more fight, I will look at my children's faces and keep fighting this fight so I *can* keep seeing their faces, so I can be here. I might not be the Mama that runs around at the park with them, but I want to be the Mama that takes them to the park, even if I just sit on the bench and watch them play.

I was more scared of not being diagnosed before I had a major symptom then I am of thinking what my future might hold.
~Jess

[Quixotic1]

Pat - I'll pit my psycho against your psycho.

I think ess was commenting that is isn't in her nature to fret and dwell on her fears, not that she has never been afraid.  And that really is the topic of the thread.  What do we fear (or have we feared) and how do we react.

Jemm - You are not to take this discussion as any finger pointing.  You are only a part of a group of people venting about fear.  We always try to see these patterns and get some kind of constuctive (or instructive) discussion about them.  Google is STILL off-limits, lol.

All-  So many of our worries, concerns, and fears are the same and seem to stem from loss of control or failure in our perceived roles.   I do think this is a great idea to put out in the open.  One - in the light of a rather non-emotional discussion we can see that some fears are a bit silly, although they feel very real.  We can also see that all of our friends deal with the same uncertainties that we do.  

One thing I would to say come from something someone said a while ago.  It was something to the effect that "I am afraid I will not be the best that I can be."    First, one has to comment that this might knock you out of the US Army, since that is one of their slogans.  But, more to the point, I see that there is an inherent comparison of "what one can do NOW versus what one could do pre-MS."  

Now, is that fair to ourself?  Should we really compare our "work product" now with what we could do before we became ill - and, by the way, when we were younger?  We can only be the best at doing or being "whatever" with the abilities and energy we have at our disposal TODAY.  That may mean words of praise from a seat in the shade versus an active role in a game or sitting animatedly as someone tells of their daily events.

If we always compare ourselves to what we were (which is often what we "wish" we had been) in the past, then we will almost always fail.  If nothing else we are growing older.  I am a firm believer in giving ourselves permission to fail and not tear ourselves up over it or to attempt a smaller success than we would have been happy with years/months ago.

I know this discussion is about fears, but I will share a huge disappointment I had after leaving practice, the bankruptcy and the divorce.  I became unimportant.  After moving from the little town where I was the only pediatrician, I moved to a city where no one knew me.  I was ill, gaining weight, unsteady on my feet and was npot an impressive sight for people to see.  I didn't have "automatic stature" when entering a hospital.  When needing to have my credit checked to rent an apartment, I saw the disaproval and doubt as they saw my bankruptcy.  That was hard.  

I realize now and even did then how egotistical that sounds, but it was true.  And, the reality is that I missed it, still miss it now, sometimes.  It took some years before I was comfortable - really comfortable - with anonymity.  Now, I really don't give a hoot in a hailstorm if people recognize me.  And day before yesterday when I had an Epic Flood at a fabric store and was trying to make my way through the masses at the big Labor Day sale toward the restroom - I was glad no one knew me or cared that my pants were soaked in an unmistakeable and  classic pattern.

I was too sick when this whole thing hit to fear "losing who I was or who I perceived myself to be".  Learning so late in life that a career do not define a person was a hard thing to do.

Wobbly - I know how you feel about wanting to wake up from a dream.  I was I my sickest with the vertigo at the turn of the Millenium.  Part of me really hoped for the Apocalypse.  The whole thing would be over and I wouldn't have to deal.  I woke up the next morning with a kind of rueful disappointment.  No such reprieve.  But, I did see the funny side to that whole thing.

Quix

[Wobbly]

Losing what I used to do in my life, our lives have been changed drastically from this Dx and I still want to wake up and believe this is a dream (nightmare).... but no luck with that.

I guess the one thing that changes our lives mostly is my walking... I can no longer do what I used to because my legs wont' let me.

take care
wobbly

[Sparkysarah]

Ok so facing my deep fears is perhaps a challenge (and yes even therapists run away from emotions!)

I was diagnosed six months ago and my fears remain fairly constant;

Losing control of my life and independence
Being in a wheelchair and having to rely on others for anything
Not living to see my grandchildren and also if I do.... then not being able to be a practical hands on granny (Eldest son 20 and youngest daughter 15)
Not living to see any of my children get married
Being a burden and embarrasment to my children and huband
Dying prematurely before I have done all the things I want to do, listened to all the music that I have yet to hear, been to all the places I still have not visited

So when some of these worries come into my head I am able to talk myself round some of them kicking the irrational ones away such as....worrying unnecessarily about my kids getting marrried and having kids as I know there is every chance that this will happen.

So time to get on with living each day and in the moment.

Love Sarah x

[sllowe]

Ess - words to live by.

All - keep this discussion going! It's inspirational. Whether you had fear, just concern, wondering thoughts, or not, it's important.

Maybe if we throw it all to the wall it will stick!  And then, we'll be done with it! Ok, I'm an desperate optimist, and I know it's not that easy, juuuust hoping it could beeee.

Any more?