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What do you fear?

by Lulu54, Jul 02, 2009 01:52PM
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
Member Comments (44)

by deborah0904, Jul 02, 2009 02:00PM
I've been placed on disability and naturally, I do fear the financial side of things.  Sorry, I can't figure out the right words to use there.  I'm going to have to go on COBRA and we all know how expensive that is.  My husband's insurance has a $5,000 ded and $7,500.00 max oop so, his insurance is not an option.

I also fear the swallowing difficulties and how I sometimes get strangled.  I have a horrible fear of developing aspiration pneumonia and having to be intubated.  Right now, these are my two biggest fears.

by Karen99, Jul 02, 2009 02:17PM
At this particular time, I fear that I will not have the energy to help my mother during her fight of breast cancer.  She's had surgery, chemo and is now undergoing radiation.  She is no spring chicken so I keep a hawks eye view on her and step in an raise holy-hell when needed to assure she gets the appropriate medical care as needed.  

Almost everything I fear surrounds the possibility that I won't have the energy to do what needs to be done.  Money is always a concern.  I wish I could make money like I used to.  

by sg40, Jul 02, 2009 02:20PM
My fear is of a general loss of Quality of Life; taking walks, playing with my kids and dogs, being independent. I know those things are not essential and I would be happy without them. But that's what I know..... so maybe I fear the unknown too. :)

by wadeheather, Jul 02, 2009 02:27PM
Never getting an answer for my symptoms. There's an answer for everything.  I'm tired of not having one and fear and being told "nothings wrong with me" every time I go in.

by Heather3418, Jul 02, 2009 02:47PM
My fear regarding having MS, is alot in the "not knowing."  What the future holds?  Will I continue to stand on my own two feet?

To have to depend on someone else to take care of my every need, is probably the biggest fear.

Good question.  If I wasn't so tired, I would have probably had something more intelligent to say...maybe.

Heather

by Sailorsong, Jul 02, 2009 03:07PM
I greatest fear is that I will no longer be able to take care of myself. If I didn't live alone I probably wouldn't worry about this aspect so much. But as things stand I am finding it more difficult every month to do simple things like grocery shopping, dishes, etc. This is mostly because I tire very quickly.

Dennis

by jensequitur, Jul 02, 2009 03:21PM
I used to be afraid that I would not be able to walk, or use my hands.  Then I started having cognitive problems!  Now my biggest fear is losing my mental abilities.

And yeah, financially I'm not doing that hot either.  I've been skipping the injectables because I couldn't afford that and Aricept, and I needed Aricept so I could do my job.  Now I can't afford Aricept either!  I think maybe I can finally afford the injectables again, though.

by essdipity, Jul 02, 2009 04:10PM
My biggest fear is losing my independence. I live alone and take care of all my needs, but I'm recognizing that my horizons are narrowing, and there are things I just can't do anymore. Fortunately I've been able to find people to do various chores (for pay), and only hope this remains a viable mechanism.

Since I'm getting older, this would be on my mind anyway, but with MS it's much more 'in my face.' Thus far I haven't had significant money issues, or maybe I've learned to be more modest in my expectations. On the whole I'm very lucky.

ess

by saveone, Jul 02, 2009 06:11PM
My biggest fear as a limbolander is not having an answer.  Without an answer the fight is limited.  I sometimes feel helpless, not hopeless, because I don't have a plan on how to stave off the monster that lives in my body.  And like Jen outside my legs being week and the neuropathy and everything that goes with it, it is losing my cognitive abilities that scares me the worst.

by HVAC, Jul 02, 2009 08:15PM
To: Lulu54
I fear being a burden to my family.

I fear losing my independence.

I fear the cost of being ill. I am not earning anything at the moment and all my medical doubled.

I fear losing the ability to see color. My art is very colorful.

by rendean, Jul 02, 2009 08:34PM
I fear that I may never recover the cognitive abilities that have diminshed during this relapse which of course leads to the fear that I can no longer earn a living at what I currently am employed as. Financial worries naturally follow that.

I fear that my children who have suddenly "grown up" in an effort to help their mother do simple tasks such as walk across the room without falling, will have to endure a further downhill slide in my abilites to perform normal activities of daily living. They shouldn't be burdened at their young ages of being my caretaker when my husband isn't around to help.

I feel guilty that my husband's planned retirement next year can not happen because we need his health insurance for me.

by Charley123, Jul 02, 2009 08:35PM
To: Lulu54
I fear being incapacitated, without income and I also fear losing the ability to lose color.  I paint.  There's so much that I've not been able to do but I could always turn to painting.  I also fear losing my mind.  Actually, there are times I do think I have.  Has anyone seen it?
Some days, I just cannot connect the dots.

by Becky559, Jul 02, 2009 09:00PM
To: Lulu54
The fear of not being able to care for myself and being ALONE!  I have a wonderful and supportive husband of many years,,,but I know that anything can change. I fear the uncertain and unknown.

by missy142, Jul 02, 2009 10:02PM
To: Lulu54
Can I weigh in even though I dont have MS?  I like the forum, knowledge, advice etc.  I also have alot of the same symtoms/deficits, had MS ruled out, all spinal issues to date.  That being said im afraid:

I am doing permanent damage to my nerves and spinal cord for which I cant get a definite answer from either my neurologist or neurosurgeon, but the neurologist "doesnt think so" unless of couse I fall down, then all bets are off.

Im afraid I will never be able to walk properly again, or run or exercise.

I am a nurse and no one wants a nurse who cant sit for any lenghth of time or a nurse who cant stand by 2 in the afternoon without the assistance of meds ande even with that has a spastic gait due to myelopathy..

Im afraid I cant support myself as now I am unemployed waiting to hear about disability. I currently have Cobra.

And lastly Im deathly afraid of surgey that I fear may resolve some problems but will DEFINITELY create others that can never be reversed once done.  And Im afraid if i dont have it that I may never be able to walk again properly and with the condition I have will only exacerbate with age.

WOW, now im really bummed out.

missy

by Lulu54, Jul 02, 2009 10:13PM
To Missy and everyone else here,

My hope is you will take the time and read what everyone else has written about their fears.  There are definitely common threads among all of us.

The next time you lay down and are alone with only your thoughts, I hope you will remember that you are not alone in your fears.  We all have them .....

my best to all,
Lulu

by PastorDan, Jul 02, 2009 10:17PM
Told my PCP a few months back that I'm not afraid of dying, because I know that will lead me to an eternal existence of pure joy in God's presence.  I am afraid of living, but so poorly that I become a burden to those I love most.

by doublevision1, Jul 03, 2009 01:47AM
Things I have feared over the course of nearly 2 years since my dx are many:
-being in a wheelchair
-being viewed with pity
-fear of my secret getting out
-fear of screwing up my shots
-fear of my liver being damaged by Rebif
-fear that I may not be able to tolerate Copaxone and thus all first line meds are off the table for me
-fear that I would never see normally again after a year of unrelenting diplopia.
-fear that my neuropathic would never improve nor respond to meds
-fear I may need to try mitoxonatrone, and fear of the side effects it brings
-fear of being misdx'ed or more accurately, fear that the alternative dx being considered was much worse than MS
-fear of no longer being able to travel, my No. 1 favourite thing to do
-fear that my husband, my biggest supporter, will grow tired of all the negative impacts of MS on our lives and eventually resent me for it (no sign of that, but I can't help but wonder.  It takes a long time for it to sink in that MS is here to stay)
-fear of what the next relapse will bring, and fear it will come soon and provide more evidence for the 'very active' disease course I've been told I have

-fear of looking foolish at work has started to occur as a result of weird cognitive/languange/memory issues.  Today I was in a meeting, giving my input, and meaning to say 'retroactive' and I stumbled and stammered, saying "proactive", "regressive", "premature", etc.  I never did get it right and I think my co-worker saw me flailing and graciously moved in and changed the subject.  Last week I'm chatting with my senior manager, about a museum we'd both visited in Paris; I'm trying to explain a Holocaust exhibit and all the artifacts like prisoners shoes, their diaries, letters.  I went blank at exhibit, then again with artifact, and what seemed like an hour of silence passed as I tried to find other words to describe what I was saying, while my manager just looked at me, completely baffled and probably wondering, who is this kooky chick?


These mind things are happening  a lot more lately.  Sometimes a string of unrelated words spill out of my mouth that are unintelligible.So just like Jen, who said "I used to be afraid that I would not be able to walk, or use my hands.  Then I started having cognitive problems!  Now my biggest fear is losing my mental abilities." I totally agree, on all points, in the same order.

I am lucky I do not have to worry, in the foreseeable future, about finances.  My medical care costs to not come out of pocket.  Between my employer plan, my separate group plan, and the health care available to me in the province of Alberta with no out of pocket costs.  Yes, I pay taxes so no, it's not free.  One of my first positive thoughts after my dx, was geez, I am really lucky to have access to a high standard of care, and cheques, credit cards, etc do not even enter into picture. . I realize this can change and so I am planning for a future with my medical needs in mind, should the rug ever be pulled out from under us and our health care system places restrictions on what will and will not be provided.

My job seems very secure, but I work in the energy sector which is greatly influenced by the downturn in the global economy.  I often wonder how the effects of all that will trickle down to the company I worked for.  A 30+ yr old large company (> 5000 employees) whom to date has never laid off a worker despite the peaks and valleys of oil prices.  So I feel kinda reassured, but have Plan B in mind with respect to investing and saving.  Hope for the best, plan for the worst.

It's funny, the day my dx was confirmed, I was really emotional. I burst into tears
and the nurse said, Don't worry, you won't die from MS.  That hadn't even occurred to me.  I was crying about how it will affect my life, not anything about how it might cause my death.  

I don't worry about my own death, though for reasons very differnet than some others ear.  What I fear most in the world, nothing to do with MS, is the death of my husband.  He's literally my best friend, I don't mean to sound hokey but it's true.  My hope is that I go first.  Can't imagine a life without him, and I don't mean for looking after me and doing stuff that I can't or shouldn't do. I mean I can't imagine life without my best friend.

To end on a positive note, many of the things on the above list I no longer worry about.  A lot of that was just processing the infomration of having an incurable and debiliitating disease.  When one thing is no longer a worry, something else will soon present itself to takes it's place.

Second ending on a positive note: without a doubt, I am absolutely a happier woman today than pre-diagnosis.  I mean that truly. If interested I will write about this later, maybe in a journal.

by doublevision1, Jul 03, 2009 10:03AM
"...though for reasons very differnet than some others ear."  ??

what????

Yet another example of my declining mind.  Or maybe just that I was up way too late last night.

by Lulu54, Jul 03, 2009 11:09AM
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

by rendean, Jul 03, 2009 12:03PM
To: db
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

by doni54, Jul 03, 2009 12:39PM
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

by Sarahsmom46, Jul 03, 2009 02:09PM
To: All
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

by Ufrustrated2, Jul 03, 2009 03:26PM
To: Hey Lulu,
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!!!

by Louby70, Jul 03, 2009 06:02PM
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

by Guitar_grrrl, Jul 04, 2009 12:32AM
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

by doublevision1, Jul 04, 2009 12:50AM
To: Lulu
"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

by doublevision1, Jul 04, 2009 12:52AM
To: Ren
"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.

by shoshin, Jul 04, 2009 08:35AM
To: Lulu
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

by PatHC, Jul 05, 2009 12:47PM
To: Lulu54
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

by Lulu54, Jul 05, 2009 08:48PM
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

by kelly6934, Jul 09, 2009 10:20PM
i fear going blind. or not being able to walk. i tell my family i hope i die young with it.

by steph74, Jul 10, 2009 08:17AM
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.

by shoshin, Sep 05, 2009 06:32PM
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

by Lulu54, Sep 05, 2009 08:40PM
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

by FrankieT, Sep 05, 2009 09:37PM
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) :)

by supermum_ms, Sep 06, 2009 07:45PM
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

by ErinZoe23, Sep 06, 2009 09:44PM
To: everyone
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

by ErinZoe23, Sep 06, 2009 09:45PM
........Being viewed as weak

by b125, Sep 07, 2009 09:51AM
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.

by HVAC, Sep 07, 2009 10:27AM
To: Lulu
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

by Lulu54, Sep 07, 2009 11:45AM
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

by OllyOil, Sep 07, 2009 01:46PM
To: To Everyone.
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

by Weakandfalling, Sep 07, 2009 01:59PM
To: MSers and Limbolanders
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

by HVAC, Sep 07, 2009 02:38PM
To: OllyOil
I can so relate.
Alex
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