Aa
What do you fear?
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
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
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.
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.
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.
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.
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. :)
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.
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
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
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
Dennis
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.
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.
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
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
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.
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.
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.
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.
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.
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.
Some days, I just cannot connect the dots.
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.
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
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
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
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
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.
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.
-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.
"...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.
what????
Yet another example of my declining mind. Or maybe just that I was up way too late last night.
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
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
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
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
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
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
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
Julie
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!!!
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!!!
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
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
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