Multiple Sclerosis Community
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572651 tn?1531002957

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?

44 Responses
Avatar universal
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.
562511 tn?1285907760
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.  
Avatar universal
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. :)
410281 tn?1254232664
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.
195469 tn?1388326488
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.

645800 tn?1466864555
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.

338416 tn?1420049302
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.
Avatar universal
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.

648910 tn?1290666683
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.
667078 tn?1316004535
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.

739070 tn?1338607002
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.
505094 tn?1240321031
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.
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