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

[HVAC]

I can so relate.
Alex

[MsWobbles]

My greatest fear is never being diagnosed - never finding out what's wrong with me - or finding out it is ALS instead of MS.  

WAF

[OllyOil]

I've found everybody's posts regarding FEAR very moving and helpful. It's a good topic to talk about thanks Lulu.
And agree with HVAC that the bases of fear is projected into the future of the unknown.

In 05 was so screwed up with my illness, isolation, stress, and fear. Kept breaking down in tears. My daughter said to me 'Mum, your a different person'. 'Where have you gone'?
Can't remember if my grammer is correct Derh!!!!!!!  Anyway things got gradully worse
with my health and problems that I know are thrown at all of us but I just couldn't handle them.
Got to the point where I was SCARED of going out, answering the phone or door. Hiding until the caller had gone. Wearing black all the time. Not having the confidence to wear cloth's I used to enjoy wearing. Felt all my facalties were disapearing.

What have I got???? Cancer? Alziemers? so on and so on. It's your Thyroid, Fibro,M.S.
Erh! we really don't have a clue at the moment. Just learn to relax. I already try to do yoga and relax (but it hurts) done it for years.

Did go for cognetiive training back in 06. When I tried to concentrate on what she was explaining. Her word's wouldn't enter my brain.

Anyway toward's the end of last year I decided that O.K. My illness may get worse, it may not.THE UNKNOWN. But the FEAR I was projecting in my own mind was purely down to me. So I got to grips with the FEAR and  changed it in my mind into HOPE. And said to myself that I'm extreamly lucky to wake up and see the sun shining, hear the birds singing, hear the laughter of my daughter and son. So as my twin sister said to me. Go with the flow. I've stoped feeling guilty for being ill and when not on a downer, smile and laugh alot more. Even though I hurt. Send my love to you all. x

[Lulu54]

Alex,
Isn't it amazing to look back and see where we were a while ago?  I've done that with my journal entries here and over on the womenheart board, and it surprises me that  calm that has entered my life now compared to what it was back when I began both of these journeys.  

I think a lot of our fear is centered in the unknown.  But we had unknowns before we had MS too.  We just didn't let the unknowns become a constant companion.  

I'm glad your fears have quieted.

be well, L

[HVAC]

What a difference a few months makes.

I figured out  in the last week that very few things in the moment are really that scary. Fear is a future thing.

For example I was fixing the gas furnace in a rental property and had the gas line open. Suddenly the Police kicked the door in and stormed in wearing full SWAT gear. They put a pump action shot gun to my head and told me to get up against the wall.

It was Surreal I had no time for fear. I calmly asked if I could finish my repair and close the gas line because I knew one spark and every one in that house was going to Kingdom Come.

Another example as a five year old I was mauled by a German Shepherd Guard Dog. I should not have lived the description in to gross. I went into shock because of my injuries immediately. I have always loved big dogs. I have three. I have literally handled thousands of dogs since then.

What I listed as fears in July are no longer scary.

I now have written myself a note to stay in the moment where for me there is little fear.

I was wrecking my marriage by projecting into the future. Deciding my husband would not be able to handle my disability.

He can and I can.

Alex

[b125]

I have had a variety of fears, and I'm sure new ones may come in from time to time.  Although I understand that worry is often malproductive, that realization doesn't always help.

I fear:
  
  -  discrimination on the part of employers, which is unable to be fought due to legal loopholes.

  -  losing my independence. I can handle dealing with people, if it's in a somewhat controlled setting and not forcing extended random chitchat for long periods of time. Although I can be energized by being around people, I also get very angry if I do not get enough "me" time away from people.

-  cognitive decline. I function well enough that I usually don't have complaints, but I have found that sometimes I just can't find the word for things, or a completely different, completely unrelated word comes out in place of whatever I acutally meant to say. I feel embarrased and upset when that happens.

  -  the ignorance of others. So many people are not educated about ms, and are not understanding of how diverse and sporadic the symptoms can be. It is upsetting to me, because I try my hardest to be of top-notch functionality, but I can't guarantee that. It is important for my self-confidence to try to look as put-together as I can, but I also know that many people only see that outer appearance and make assumptions that everything is fine, and that any problems one has must be only trivial.

  -  finances. I fear my medical treatment using up the limit of my insurance. I fear not being able to afford medical treatments or necessary care. I fear having to decide whether I want to pay my bills or take care of myself.

  -  I fear a cure not being discovered in my lifetime, or while I am still well enough for it to be of benefit to me.

  -  side effects.  I fear the medicine which will best help my body could also destroy it. I hate choosing between feeling functional and having functional physiological systems.

[ErinZoe23]

........Being viewed as weak

[ErinZoe23]

My Fears would be
  
    ............Noone will want to be with me with everything thats going on medical and non medical
    ............Getting Worse
    .............Not being around for when they do find a cure
    .............Trying to figure out who I am now a days

[supermum_ms]

Hi There,

I'm a limbolander, I'm not one to fear anything really, the eternal optomist but i have to admit to being deeply disturbed with my loss of cognitive & verbal skills, in a lot of ways these little skills define me. I'm the least gifted in a very gifted family, i've always had verbal skills that i could rely on, now I can be talking and the noun i need is gone, I know it but i cant say it, so i freeze trying to find the word i need.

Yesterday, i asked my DH to get a pair of jeens out of the ??????????, I froze again, the word that came to mind was MICROWAVE, i knew that wasn't right so i kept searching for my missing word, OVEN came to mind next but i knew that was wrong too, I was looking for dryer but it wouldnt come out from where it was hiding. It takes a while to find the word i'm looking for, my nouns are gone and i need them back.

So I fear they will one day be lost for ever and the Dr's wont care that a part of me is disapearing and by the time they work out why it will be too late and not retreivable. I cant help researching how someone can loose only one specific cognitive skill when others are still intact, although getting fuzzy too. I only find stroke, or lesions which is better 'none' me thinks, but i will keep working on my missing pieces regardless of the lacking dx because i would do it anyway, cause thats who I am!

Cheers........JJ

[FrankieT]

I am a limbolander. I fear that my small children will watch this battle and see weakness in their mother. They watch me walk into walls, they see me forget their names, the day, whatever the heck it is I am trying to talk about. They see me tremor and shake. They see my frustration, fatigue and irritability. They see the strain this is having on our marriage, as I said, they see my weakness and I feel weak. And I have no explanation for them. I do not fear what may be in the future for me. If I ever get an answer, I will continue to fight and sustain as long as possible. But not knowing is killing me. I do not do well with the absence of knowledge. I am a knowledge seeker. So this disease, if it exists for me, will not beat me. But I am afraid I may be exposing my children to vulnarabilities that I must learn to control or shelter. All of this is happening for a reason, One of which I will learn over the course of my lifetime. I fear my children will have something similar, or their children will as well. Oh, I do not fear the physical limitations, but boy do I fear losing my intelligence (of what I have) :)

[Lulu54]

Sho- the need to have our own space is a serious concern of mine as well.  Here's hoping we never face that problem... L

[shoshin]

I thought about this thread recently after a conversation with a friend in which this topic came up. I realized that another thing that terrifies me (if I allow myself to think about it) is that I will end up needing other people to care for me physically (more than my husband can) and I will be forced to make social chitchat and relate to people all the time. I am a person who really likes my alone time and I think it would be exhausting for me to be around people all the time (I always come up extremely introverted on those personality tests). We watched a documentary on Christopher Reeve once and one of the things they brought out was that because he couldn’t breathe on his own, he could never be alone. That to me sounds like a kind of hell.

sho

[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.

[doublevision1]

"Often I think one word andtype and absouluetely different one." ---- me too!  ALL THE TIME!

"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." ---- me too!  esp the part about losing the ability to laugh at myself.  Maybe we'll both be blessed with emotional lability and just laugh all the time, at totally inappropriate times, for no good reason.  Wouldn't that be fun, and not in the least bit awkward.  :)

The mental clarity stuff....laugh about it at home, worry about it at work.  I've gone blank so many times.  I try different methods to stay on point but inevitably I lose my train of thought, mix up my words, and probably come across as really unprepared to my audience when that's not it at all.  I'm now focusing on independent work and advising on a one-on-one or small group basis rather than working with larger groups as I used to do.  I just don't know how to approach the latter and not come across as an incompetent space cadet.  I don't mind the change in focus, as long as the nature of my work remains flexible enough to allow me this freedom.

I wonder how much of an effect my medication may have on all of this.  I tend to think it's the MS itself, but what do I know?  I'll add this one to the list for the next neuro visit, and maybe even see what my pharmacist thinks about it.

The part about not worrying about my own death; it's not because I think I'll be back in another life in some reincarnated state, nor do I subscribe to any belief in afterlife  be it sheol, heaven, jannah, hell, purgatory, gehenna, and so on and so forth, so I am neither excited nor worried on that front.  I accept that imagining my own death is incomprehensible as I have no frame of reference in terms of personal experience.  I never died before (unless I did and don't remember, and if so, what good does that do me? lol).  I expect nothingness, but again, no frame of reference for nothingness, as all I know is something-ness.  My brain cells will stop functioning completely, and then, nothing; fade to black.  Doesn't make me sad, wistful, depressed, relieved, anxious, scared or any such thing.  The finality of it is motivation to not be wasteful of time, and to make the most of what I have and of what I can give and how I can somehow make some kind of contribution that will hopefully be meaningful somehow.
But losing the ones I love....that's another story.  Now THAT makes me sad.  Hope that this makes some kind of sense.  I am used to not making sense lately. :)

Now I'm going to go back and look for all of the typos I have inevitably made.

ps: I hope the fireworks were fun!  Happy 4th

[Guitar_grrrl]

Uncertainty is the big issue here, for me, anyway.  

I thought long and hard about this one - I don't necessarily fear losing my ability to play guitar.  I enjoy listening just as much as playing.

Fear just isn't one of those emotions I spend a great deal ruminating over...I have today, and darn it, I'm going to make the best of it.  I could be run over by a truck tomorrow, and it wouldn't make any difference to the here and now.  The "what ifs" are just not part of my gestalt.

Take Wednesday evening fer instance - I was riding the "Giant Dipper", an 85 year old wooden rollercoaster in Santa Cruz with my husband.  I've been riding this thing since I was 8, and it's been fun every time.  This particular time, the brake man was asleep, or stoned, or something, and stopped the thing about 6 feet too far.  No problem here, they let us have another go 'round!!  Now how lucky was that?!?  The only other time that's ever happened to me was one evening just at closing time, and they didn't even pull the brake!  They just let us through again for kicks, and because it was the last ride of the evening!

What I'm saying here, is this:  We have today.  And if today happens to include a shot, some pills, a mobility aid, then so be it.  I will deal with it as it comes, because all I have is today (thank you, God).

G'night, all,
Guitar_grrrl

[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

[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!!!

[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

[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