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

[Lulu54]

DBV- I'll give you that one, considering I understood exactlly what you meant - *year*.  I am becoming the master of oops at the keyboard- as I've told people here before I rarely proof what I have written and just hit the send key when I am done.  OPcassionally the errors come out pretty amusing.

Often I think one word andtype and absouluetely different one.

I too fear losing my mental clarity - but even more I fear losing the ability to laugh at myself and take none of this too seriously.

thanks for your extensive list - it sure mirrors so much of what all of us feel at one time or another.

have a good day,
L

[rendean]

I'm in agreement with Lu. Your well written list reflects what most of fear especially the word finding issues and not being able to find the right med to treat the symptoms and halt this disease.

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%.

Take care,
Ren

[doni54]

What a great post, thanks Laura for starting it.

I fear so many of the same things that all of you fear....my declining cognitive function, being a burden, losing my independence, speech difficulties, bodily function difficulties which really add to my loss of independence cause I'm afraid to go out, fear of what the future holds for my health, loss of my eye sight, how much longer will I be able to walk, and so many things that are too numerous to list.

I guess I must admit though that my biggest fear is never knowing what monster this is that is destroying my body, mind and life.  I watched so many here receive their dx and fight through the depression of knowing what they face.  My heart goes out to all, and you are all in my prayers daily.

Not knowing, to me, is like living in a prison that I can never be free from.  How can I have hope for a future when I know that my only choice is to live each day not really knowing how or what I am fighting?

Though I am reasonably sure that it is MS, I have no way to seek the tests or drs to find out.  Some days are just unbearable when I think that I will never know, just continue to decline and become nonexistent.

I do have faith that whatever is in my future, that someday all this will end and I will be with my Lord on the Otherside where things like this do not exist.

I love you all,
doni

[Sarahsmom46]

Everyone has pretty summed up everything,so for me at this particular moment I fear 3 things. I. Becoming a burden to my family; 2. Losing my ability to work; and 3. Not recovering from a relapse.

Julie

[Ufrustrated2]

bizarre fatigue, equilibirum, headaches, in&out irritability, chronic pains, gog issues: those things really have affected my quality of life. there are other symptoms too but the above come and go and whiplash me in and out of life's game any time they feel like it.  

another fear is not being able to get back to skydiving and scuba. i just don't have the confidence that i'm healthy enough for them now due to the spinal issues(for landing) and equilibrium issues(being at depth).

also, i'll put this private fear out there and that is not falling n love again with a great gal due to the myriad of symptoms not allowing me to be myself.  to explain that is hard for me to put into words but i think folks on this list can understand how this disease affects us and relationships. i still have a healthy relationship with me friend God, so i'm still good to go.

coming from being a very good systems analyst for a top international engineering firm to unemployed and the ongoing symptoms adds fear and uncertainty too. it takes me extra energy not to start questioning my worth some days even though i know better. the fear of economic uncertainty. i have my other support groups and some really good level headed friends that really really help me keep it together. maybe God has other works/career planned, ya just never know.

not having a concrete diagnosis & treatment plan except for the "demyel disease of the CNS" statement is more frustrating than fearful for me. i've been in this boat for years but i must say the doctors are making more progress in this area with me than ever before. You and Doc Q have seen my history and tests so the three of us know i actually have an illness and that lessens the fear of the unknown for me.

i could go on & on though i share a lot of what others have posted here too. i see others at the VA hospitals who have life way more difficult than i and my heart and respect goes out to them and helps me to keep myself in perspective.

thanks Lulu for the thread. venting and sharing at the least gets my shoulders a bit lighter and may help someone else out.

Happy 4th!!!

[Louby70]

I am a limbolanda...

I would say my biggest fear is, what the future holds when it comes for my children. Already things have changed where I cannot do as much for my children, like I use too & this breaks my heart. I want to be the perfect mother & do the things I once could do.

I really really do not want to be a burden to them, they have their whole life ahead to enjoy & there is no way I am going to let what illness I have get in their way.

I do fear I will no longer have my independence, already I have had to give up work & my dancing.  

Happy 4th birthday to you all from a overseas girl, hope you have a good day xxxx