What do you fear?

[Lulu54]

When the lights go out and you are alone with only your thoughts, what do you fear most about living with MS?    (or for you limbolanders - the possibility of MS?)

I'm thinking about this because I have encountered the word *fear* quite a few times lately around here. And it is so easy to descend into the levels of fear that keep us haunted.

For me I fear not having the financial resources to live a long time with this disease - everything is so darn expensive.

How about you?

Lulu

[steph74]

I'm in limbo, so my most pressing fear is continued decline without treatment for the underlying disease process.  I fear that I'll never know what's wrong with me.

But I think the point of this thread is the "continued decline" -- being in limbo it's easier to focus on getting a dx.  But what do I fear about whatever process is going on here?

I fear loss of congitive abilities.  I truly believe I have already decline noticably, to myself.  Not to be an egotist, but I'm a pretty bright person.  My neuro-cogitive testing did not show any deficits, but I also don't think it showed me where I should be.  But, it will also serve as a baseline for any future testing.  I fear not being able to continue working.  The inability to find words is something I actively work around pretty much all day, every day. It started with my first episode 7 years ago (made workshops in grad school and defending my dissertation difficult) and it's gotten worse this time.  I told the neuro-psychologist that I feel like I can handle most physical challenges (not easily, but I think I could), but I don't know what I'd do if I lost my thinking abilities.  It's who I am.

So, that's definitely my biggest fear.

[kelly6934]

i fear going blind. or not being able to walk. i tell my family i hope i die young with it.

[Lulu54]

Pat,
I'm glad you found some usefulness to this thread- like you, I find it reassuring to know I am not alone in my thoughts about facing down this disease.  

Thanks everyone for sharing your private thoughts.

be well,
Lulu

[Eyesnlegs]

A brilliant, fascinating and reassuring post.

It seems we all have the same fears, my biggest at the moment is that I fear that year ago I could walk for miles with my husband but all that stopped when I had the relapse last September. I know struggle to walk very far at all but at least I am walking eh? My fear is related to never getting that back as 9 months is a long time to wait.

I have nothing else to add to the list you all did a great job on this one and at know what I mean.

Pat

[shoshin]

Thanks for this thread. I certainly worry about the possibility of most of the things mentioned above: becoming an unbearable burden, losing the ability to pursue my passions or do my work, losing my ability to function and so on.

Before I was dx'd I used to lie awake at night and wonder if I was dying. The doctors didn't seem to think so, but they seemed so out of touch with what I was experiencing (as in "it's unlikely to get worse" when I felt like I did nothing but keep getting slowly worse) that that didn't reassure me. Now I don't worry so much about dying as ending up with a life not worth living.

In my darker moments, I think about the logical conclusion of the ongoing worsening of all of my main symptoms: lack of sensation, stiffness, balance, weakness. I see myself ending up as something like a brain in a vat: unable to more and unable to feel anything. But then, as Jen points out, in the end the cognitive symptoms are even scarier as they strike at the heart of who we think we are. I am very conscious of the fact that I am not as sharp as I used to be (or thought I was). Although my cognitive dysfunction hasn't caused any major problems yet if I do end up as an incoherent brain in a vat, I hope someone will have the sense to take me out and shoot me.

sho

[doublevision1]

"I was intrigued by your comment of being happier than before your diagnosis. I am assuming it has to deal with what really matters in life and how your friends have supported you 100%. "  

Yes, you are exactly right about that.