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My Scary MonSter
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My Scary MonSter

I figured I would at least try and start a discussion about scary MS MonSters and see if others wanted to talk about these issues.  I was thinking one thread might make it easier for folks to read.

Some people have mobility issues and worry about ending up in a wheelchair.  For others, it is incontinence or balance or whatever.  For me, the biggest scariest MS monster is going BLIND.  My MS seems to be about 80% sensory.  I'm a "visual thinker" and most technical problems are reduced to a drawing and most solutions are generated from a drawing.  I can do a lot of that in my head, but I have to be able to draw to explain it to others.  This is how I earn a living.

But dealing with the vision issues from the original bout of ON (my first recognized MS symptom) seems to always bring back that FEAR (sometimes PANIC) of loosing my vision.  My doctor told me that I had already damaged possibly 75% of the visual system between my eyes and my brain.  That was what led to my diagnosis of RRMS and the main reason for starting a DMD.  It is an issue of probability.   Anything that can reduce the chance of a relapse, reduces the chance that it will hit my optic system.  A new lesion causing Optic Neuritis could lead to a poor outcome.  I try and manage any anxiety related to it with cognitive behavioral therapy (CBT) techniques.  I've decided it is a rational fear that I can't do anything about (besides making sure I take my Copaxone and get on IVSM at the first sign of a problem.)

It is strange.  I can fall getting out of bed or trip over my big feet or have a bad day when my left arm burns all day.  It is just another day.  Eye pain or just a little more double vision than usual, and I'm on the verge of calling the Neuro or working myself into a panic.  It has been that way for the last 4 days.  The more fatigued I get those worse my vision gets.  I know this may seem strange.  I usually keep it together.  The buzzing, numbness, pain, spastic legs, balance issues, etc. don't even seem to register.  I can deal with them.  I have blind spots (scotomas.)  Double vision makes my depth perception unreliable.  TV or subtitles frustrate the hell out of me.  I need bright lights and glasses and a magnifying glass to read most package directions.   I have been driving less and less.  I use a balance pole sometimes and tell people it is for balance, but it is really because I can't see my feet or the curb.  Even the Neuro-Ophthalmologist  can't give me too much hope.  The vision issues are more neurologic and less refractive.

I read about some of the major issues others deal with, and mine just seems so trivial (yet so major to me.)  One more case where MS is a very personal disease and effects us differently.  MS seems to be messing with my future.

I guess I'm taking my turn at being frustrated by MS and venting a bit (and wanting to be very selfish right now.)

Bob
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My biggest fear is losing the use of my arms. I had weakness in my left arm now it has started in my right. That terrifies me.

Alex

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Of course anything that threatens your way to make a living is the scariest, thats your independence. Totally understandable, and im sorry to hear you have been having a hard time with your vision the last few days.
For me the hardest part is being the Mom who can't keep up. I have a 5 and 7 year old and Im pretty young myself so Im expected to be able to do all the girl scout stuff, and school stuff, and gymnastics, and everything else. Reality is Im tired, and I forget a lot of stuff, and walking across a parking lot makes my whole body numb....etc. So I'm not able to be "that" mom. I hate that part.
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Bob-

You are so entitled to be selfish at times!  And venting is good, too.  If you don't vent and get it out, it just festers inside you...and that is not good.  

I hear you loud and clear!!  And, I get it.  Losing eyesight, I think, would be worse than losing leg functions.  For some, it might not feel the same, and that is ok.

My fears are the same as yours.  And it is my fear too.  My other fear is losing my legs.  The fear of blindness is stronger, for me, because I just don't see me handling that well, at all. I already use a wheelchair so the fear of losing my legs is not one of those unknown things for me any longer.  

I did lose my job due to my legs.  So that fear already happened for me, too.  

I quit driving almost two years ago.  I have blurry and double vision.  When I flare, it gets worse and then I get scared.  Really scared.  So you are not alone.  

Have you talked to your partner a out your fears?

Addi
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dera bob,

please never take forgranted your feelings. whatever anyone else dealing with is theirs, yours is yours, no   less, no more.
It is thhhe emotion side of the Monster that i think can raise the biggest challenges. We think wee have them underwraps but they ccan seep through smallest of places.

I reading your fears and they are very valid. With your lively hood to  need your percious vison iiis jeopordized, it is no wonderr you panic.Anyone would. I am happy you recognize that and hhave tools to work with emotionally.

I   fear  loosing my power of speech is at least as scarey.
I suffer in my voice and speech, and in mornings beofre my b.p. allows me to have recognizable words, communicating with my husband is challenging and frusturating ...
I fear not to  to be able to express happiness  in terms of excitement in voice, and telling my family i love them.

My other fear is of my illnesstaking a toll on my family, to become a burdon enough that they become someon other than they  would have been .

I am glad you are owning your fears Bob, embrace them, confront them , it makes us human:)
takee good care and as much rest as you can...
amo
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Bob,

Great thread to start. BTW, forget about the venting, we all do it.

Some of my biggest fears I imagined at dx have already come to fruition. I am on a steady cognitive decline, trouble with dizziness/vertigo and now blurry vision  which in combination cost me my job. Not cost effective to keep the employee who requests to work from home because she can't drive, even though she did literally four times as much production than her counterpart.

My vision is getting worse as is the double vision. Nobody in my family wants me to drive and PT is having duck fits whenever I drive myself to therapy. Not driving is just another notch in the loss of my independence. Yes, I DO like to be in control.

I hate that my children have to see my health decline. I hate that they have to chauffeur me around (this two-fold..their driving isn't too great either,lol). They have had to pick up off the floor in public, at home and wiped up blood from the tumble I took.  

They complain that all I do is sleep. I have to turn down activities on bad days. These are the years I looked forward to enjoying with my kids. Young adults..no more teenage angst  or temper tantrums.

Guess I had more to vent about than I thought. I could go on but this hits the high spots.
Next...........

Ren
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Hi Bob, thank you for sharing your fear and worry with us.  It takes allot of courage to share that and sometimes it is harder for men.

You spend so much time giving to everyone here, always there with all kinds of facts and objective info.  I understand you using cognitive behavioral, it's good for helping us find our 'core belief' and to help with unfounded fear.  This is not just a 'core belief' but is a real possibility.  Of course you are scared!  That would be horrible.  Terrifying!

I'm so sorry you are having to deal with this Bob.  Remember that it's very likely that it won't go blind.  

When I have a deep-seated fear like you, I start thinking of what I will do to make it liveable.  I don't know what that would be for you--a guide dog, books on tape, music learning something new.  I don't know.

We are here for you and it just s__ks that you are going through this

Hugs

Red

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Thank you for starting this thread.  I know how frightening it must be for you to think of losing your sight.  For some reason deep within me, I have this feeling that you will find ways to compensate if the loss should occur.  Some people just give me that feeling and you are one of those.  How?  I have no idea.  I do know you are a very bright man and it slowly will come to you.  Odd that a stranger so far from you knows this...I just do.

My fear is becoming a burden to my husband.  I so want for him to enjoy his senior years without worry about me.  I refuse to let him stop traveling even during a bad "flair".  He loves his work.  Without it, truly he would be a shell.  He is too creative to waste it sitting caring for me.  

I already know the fight that will come the day I check into a nursing facility (should it come to that).  In place, I have the strongest willed of my sons standing by to be sure my wishes are carried out.  The others along with their father would never allow it.  This son understands that I would be better cared for in a nursing facility and that his father can oversee me from there.  He also understands that I can be happy there.  He knows I adjust well to just about anything.

This is going to be an interesting thread.  I think fear is something we rarely bring ourselves to talk about...or think about.  However, I think facing it square is probably the healthiest thing we can do.  Putting our heads in the sand and not facing it can cause underlying depression and anxiety.

Thank you, Bob.  You have been a blessing to this board.

Hugs, Sumana
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Bob,

I often wodered how you always have the right thing to say, and have always been willing to be there for everyone else, all of the time!! You are an amazing, intellingent, and caring man.

Since I have been on this forum, I think you have posted a question or a comment for yourself what ???? once or twice??? Unless I missed it...

I am so sorry you have that fear of going blind.. I am with you on that. You have every right to be scared. No one even has to tell you, don't worry, everything will be alright, because even on your best day,... you will worry.

When I was dx'd with Graves Opthalmopathy. I was SCARED!! When I was dx'd with Ischemic Optic Neuropathy, I was EVEN MORE SCARED!! I was told not to lift over 40 lbs. or I would go blind in my right eye. My son was 4 and my daughter was 1. I thought , OMG I want to see my children grow up, see their faces, how could this happen to me!!

I was scared.. 3 eye surgeries later and after each one, my speech would be slurred for a week, or was dizzy for 8 months... I am scared to have ms if that is what it is, but scared to not be dx'd with ms and progressively get worse because the doc.s put me off too long.

Bob, Thank you for this thread, and thank you for everything you have contributed to all of us here.
Big Bear Hug, my friend, :)
Pam
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Thank you Bob for being brave enough to speak of your fears, we all have something and its healthy to air what we may not in reality be able to avoid, than it is to stuff those feelings and thoughts down and never let them out.

I have a natural acceptance of change, I laugh all the time and get ultra calm when often others would or are freaking out. I put that down to growing up in my unique family and then adding a few unique children into the family dynamics. It took time to work out that I was the odd one in the family, not because i was unique but because i was the only one that wasn't lol.

So what i'm saying is that i've had a life time of being different, and finding what ever way possible to adapt, and i've maybe not had much choice but I've never seen it that way, to me its just the way it is. Having the history I have, helped make me into a person i can respect and yes love. I have no fear of death or disability but I do fear loosing my brain. I feel with out my intelligent brain, I will effectively loose the biggest part of me, its my brain that makes me, me!

How will I be, if I totally loose the ability to think and communicate those thoughts, I've had the experience of what I fear and I do NOT want to be in that state again but the little reminders that come (as they do) only help keep the fear that it is something that can happen to me and thus also happen to my family. I know what i've already lost, the issues i live with and adapt to as much as I can but its the totallity of loss that i think i really fear.

So what does it all mean, is it simply something i've identified but deep with in there is a meaning more profound, well I could really be fearing loosing ME!

Way deep.............JJ



  
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Thanks.  When I was diagnosed, I was "concerned" about the risk to my vision.  That's why the doc decided to diagnose and start DMDs.  I was fine then.  

So I'm three months out and my vision is acting really weird and my TN is breaking through and I feel like crap.  I think I have ON in my right eye again.  It aches and thing look farther away than when I look from my left eye.  That orange/brown filter is in front of my right eye again.  It feels like someone is jamming an ice pick into my right foot, and I have been trying to wish it all away with no success.  

I really don't want to think it is a flair, but I think I need to call the MS Center tomorrow.  I have too much to do, and this is going to throw a wrench in the works.  My MS has no sense of timing and fails to check my calendar.  

This is a weird week.  After 19 years, I guess I repaid my military medical severance.  I got my first check from the VA this month.  Many strange things going on.

Bob
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your medical severance was paid many years ago
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Bob,

My worst fear is losing the use of my legs, but if i had to decide between my legs and my eyesight I would choose my legs. It is so scary the thought of losing the ability to see. I understand why you are venting and want to say I hope that all is well and nothing more happens with your eyesight.

My sister had a bought of ON and lost vision in her left eye, let me clarify, she still has peripheral vision but she say to look straight is like looking through a screen. I can't imagine how scary it is to worry about your eyesight.

My thoughts are with you and prayers that your eyesight does not diminish.

HUGS,
Paula
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This thread is an odd one for me, because I'm having a scary MonSter moment and it's not even from MS.

As quite a few of you know, I fractured my ankle well over two months back. It apparently was the worst kind of ankle injury out there--splint, surgery, more splint, one week's hospitalization, rehab, home nurses, more follow-up, etc., etc. I spent a month at my sister's, came home to get the cast removed, and now am in long-term PT.

Although I push things quite a bit, the reality is that I am far from getting my old life back. I hate having to board my dog out, or even having to have someone walk her. I hate all these stairs that I have to navigate to go anywhere at all. I hate snow and ice, which are so dangerous for me. And although I have several wonderful neighbors who will do anything for me, including walking my dog, I am so dependent on them and others. I hate wheelchairs, walkers and canes.

So while I'm moaning that my independence has been taken away, I'm really very grateful, because I know that evenutally all these issues will resolve. But if they were caused by MS, they could well never resolve. That's a huge thing for me to contemplate. I will be thinking often of how well off I have it, and of what I will do should that change. But I won't worry. That just makes then happen now.

ess
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Bob, I'm sorry that you have that fear and I acknowledge it.  I'm totally with you. And you deserve to take some time to vent about it.

I have several fears.  
1) Fear of losing my vision. I've had ON 3 times already in the last 2 yrs, and I have a handful of scotomas in each eye. My vision also gets a lot worse when I'm tired.

2)  Losing the use of my legs. I think I would fear this less if our house was set up a different way, with a full bath & bedroom on the main floor.

3) Becoming a burden to my partner, when she already has dystonia in her hands and neck. I know it would be difficult for her to help me, although I know she would want to.

4) Cognitive function - In the last 4 months I've already recognized noticeable changes.  And after having the neuro-psych eval on Mon, I see definite proof of it.

Thanks to everyone who has taken the time to share on here. Everyone is good at trying to help others who post. I think it's great, that we're all taking at least a moment to recognize our own fears from this MonSter.

-Kelly    
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There are so many things to be afraid of with this disease .... I think my biggest fear is just not being normal.  I was at the grocery store today and saw this little old lady buying groceries for herself.  She was at least in her late 80s, but was managing on her own.  All I could think was that I would never be able to do that because I'll either be in a wheelchair, or even worse bed-bound if I live that long.
Anyway ... I agree with everyone:  Bob, you are an amazing, extremely intelligent man, and I thank you for all the time that you put into answering everyone's questions so thoroughly.  I'm sorry that you are not feeling well and I will pray that everything clears up (literally and figuratively) for you soon.
Katie
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It seems like I've had lots of different symptoms - vision, cognitive and weakness being the most troublesome.  Of them all, I'm most scared of the cognitive problems.  I can live with almost anything else - if I can't see, I can play the bass.  If I can't stand, I can still paint.  But if I can't think, I can't do either.  I can't even read with any comprehension.

Fortunately my cognition has gotten better.  If it hadn't, I'd be looking at disability.  There's no way I could work full time with the state my brain was in.

I've come up with a new one, though - involuntary movements.  I guess it's myoclonus - but which variety I'm not sure.  I had to take Monday off because I kept having these weird myoclonic seizure thingies.  I don't want to be at work if that's going on - too hard to explain!
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For me, the terror/fear/anxiety is nearly constant -- even though I'm doing very well (at 61 years old).

But the big 3 are:

Vision loss
Brain atrophy/cognition losses
Incontinence

I cared for my father through end-stage dementia, and saw firsthand how those 3 can take away everything, including the last shreds of dignity.

And COBOB, I'll add my thanks for your excellent input on this forum -- your perspective is unique, and a big asset to this group.  Truly hope this phase of your MS journey passes quickly, and you're soon back to your "MS Normal."
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Bob, You're a Rock Star on this forum!  I'm so grateful for your brainy insights and incredible knowledge!

The MonSters under my bed?  Mostly loss of the use of my arms and legs, and urinary incontinence.  Fatigue is kicking my butt.  TN is a bugger, as is the ringing in my ears.  I lucked out in the vision and cog fx dept.

I've already lost a good deal of strength in my arms, and have had to limit performance to Open Mics and Round Robins (3-4 of us onstage, I get a rest between each tune, only have to prepare 8 tunes to do two one hour sets).  I don't take advantage of the many Open Mics around here, because I'm too exhausted to drive home after that.

We'll have to do some serious remodeling of the house on the ground floor.  If I wind up using a power chair, at least I can get around.  For some reason, I'm almost calm about this...?

Urinary stuff is kinda creepy, though.  Between the thought of indwelling catheters or other surgical "fixes", the infection rate goes quite high... Yikes!

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At this point everyone is posting their personal fears, so I am going to do that too.

I already have many of the things:  fatigue, severe weakness in legs and arms,  pervasive hideous amount of pain, urinary retention, spasticity and spasms.  etc.

What I fear is not being able to get up out of my chair and/or transferring from bed to wheelchair.  I fear losing my dignity and sense of privacy.  I want to be independent.

I do fear losing my vision or hearing but not to the extent of you Bob or others here.  I haven't had Optic neuritis though thank God.  I don't know what I would do.

I will be thinking the best for you, and don't forget to take time to care for yourself

Red
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My biggest fear has been losing my sight. I have a real-life friend who has MS and she will lose her sight pretty severely a few times a year. She is a huge inspiration. Yet, the idea of losing my sight scares me more than anything else.

And, of course, eye issues have been one of my biggest complaints in the last year. Murphy's Law strikes again, I guess.

~Jess
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