Thursday, October 25, 2012

FEAR; The Boogie Man of Multiple Sclerosis Emotions

The Unspeakable Bits; From A Life With MS 

‘Tis the season of witches a-broom, of zombies and ghouls and of vampires and ghosts. With Halloween just around the corner I thought it appropriate to bring up the things that go bump in the multiple sclerosis night. Well, maybe not the actual things, but our dread of them.

I don’t remember where I heard it first, but someone wiser than I once said that “fear is the opposite of hope.” Being that we all live our lives in hope of a good day versus a bad one, with hope for a cure and hoping that our generation is the last to hear the words, “you have multiple sclerosis,” it is only natural that we sometimes experience the through-the-looking glass emotion of fear. 

Fear – rational fear – can be a very healthy emotion, when taken as prescribed by nature.

Walking through the early forests and jungles, primordial man’s fear of being eaten by his equal on the food chain was a real and justifiable concern.

Irrational fear, however, is that little voice that I can only hear in the most alone times as I try to sleep. Irrational fear is the “what if, Trevis” that can whisper into my ear as a new symptom takes hold or an old nemesis grips me by the semi-recovered part.

This kind of fear can be a rabbit hole of extraordinary proportions and more difficult to exit than Pan’s labyrinth.

The key is, of course, to keep ourselves from taking that first step. As my Neolithic ancestors have, however, passed on that reactionary little part of my brain where fear is housed, I must find a way to cope with the times I do feel the MS tiger’s breath on my neck.

Just like a parent turning on a light and checking under our bed, I feel that addressing our fears in the bright light of the “inter-web” can be a calming factor. Even more calming than admitting my own fears is seeing that I am 1) not alone in having the fear and 2) reading of others' successful tactics of dealing with the things which I fear most.

No longer am I then a lonely wanderer, alone at the edge of night and day. I am suddenly a member of a strong and like-minded tribe. I can talk to people who have known and combatted my fears. They can show me not only how to recover from them, but also how to avoid their trap in the first place.

When FDR said that our only fear was “Fear itself,” he – as a polio survivor himself – must have known the grip that fear can have on a person. The greatest risk is that fear can freeze us in our tracks and keep us from moving forward in our lives, in our loves and in our pursuits.

I invite all of us to share one of your MS fears in the comments. It is not a weakness to talk of our fears, but rather, I’d argue, a strength. I also welcome respectful reactions and responses to one another in these pages. Like a fabled hunter regaling our tribe with tales of a successful quest, we too can take a little bit of fear out of our collective night and help one another get on with the living of our life – MS or not –with hope.

Wishing you and your family the best of health.

Cheers

Trevis


 

33 comments:

  1. Sometimes I'm afraid that I'll feel strong enough to walk somewhere but not be able to walk back home (or to the office or car).

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  2. Too many to think about...so I don't.

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  4. wow...i actually find this post thought provoking from the beginning as i see despair as the polarity to hope, not fear ....my biggest MS fear is bladder and bowel symptoms because i also fear embarrasment, and i cant think of anything more embarrasing than having an accident in the wrong place. i think that is the worst that could happen to me, but i do not despair these symptoms-instead my fear drives me to anger and i spend many a nights doing keigel exercises just to spite my immune system.

    i agree that it is not weakness to talk of fears, it is necessity...but i also appreciate that i am now looking at all the different ways i find to accomodate and continue to live my life despite blindness, perception difficulties, drop feet, crying jags, fatigue, spasticity, drunken tandem walks, skin pricklies, fire shooting through the spine, slurring speech, ...

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  5. My biggest fears are falling and my pride. I have fallen down several times in the last month.The last one i hurt myself pretty bad. My pride is getting in the way because i should ask for help from the one closest to me but my pride gets in the way thinking i can do things like walking down steep stairs when im having spastic attacks. I also have a big fear of the police when im walking in mu town. Those of you would understand why.

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  6. My biggest fear has become a reality. As it is not a symptom, for those I am prepared to face, but it is living without insurance. I have lost mine due to my dad losing his job in this withering economy. Medical bills piling up and no insurance company will except me for six months because I have a "pre-existing condition". So now at the age of twenty one I am now in debt, have no one to turn to for help and the state in which I live won't even provide me with medical assistance because I have no children to support, messed up system if you ask me. They'd rather support me and a child than just me... makes complete sense (total sarcasm)-I'm fed up, I'm tired, but I stay positive through all of this stress; PS- don't take your insurance for granted like I once did. You never realized just how big of a blessing it truly is until it's gone.

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    1. Do you have MS or does your father have MS? What state do you live in?

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    2. I have MS and am a resident of Michigan but travel all over the US with my boyfriend for his job

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    3. Don't give up. SSI and SSDI. get a lawyer or speak to an adjudicator next time you're admitted to a hospital. They'll assist you.

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  7. My biggest fear is wondering if my relationship is strong enough to handle things if they get worse. My Boyfriend is the love of my life and was there when I was diagnosed. However his family has said to me a few times... make sure you are taking care of yourself so you dont become a burden on him. He says that is not the case, but now it is always in the back of my mind.

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    1. For them to say such a thing to you is beyond unfair. I am always afraid that I am becoming a burden financially to my boyfriend but he never seems to mind. You always have to remember that love is not selfish and don't forget to let him know how much you appreciate everything. I think that couples in situations like ours come out closer and stronger as long as communication and appreciation is there. Don't let your relationship and health problems become his families business if they're not going to be supportive. Keep your head held high and don't let this ruin your relationship- Live, Laugh, & Love! helps me stay healthy

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  8. For better or worse is the quote my husband gives me. I saved his life one night when his Insuline tanked. Having shot the wrong fast acting Insuline before the pump became his needle of survival. Yes he's a type-One diabetic,
    which didn't happen until we were 5years married. I was diagnosed with MS less than 2 months after we wed. I was only 27 years old & we have stood by each other for 29years. A Man's character (or woman's) will help sustain their love.Be strong in your mind !!!!!
    from a survivor,
    Paula W October 25,2012 4:28 PM

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    1. Being married 27yrs (going on 28) myself, I couldn't agree more. Yesterday, I had a very "bad day" and had to leave work early to get home and in bed. My wife just called me 10 minutes ago at work to see how I am doing and to remind me that she "LOVES ME". Man ! Did that warm my heart !

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    2. Mike you made me smile, we celebrate 25 years next year, I've had MS for over half of them, it is for better or worse and we all know some days are better, some are worse. I haven't been the spunky, smart little woman he married for a long time, but he doesn't have MS and he's not quite the same either and neither one of us would have it any other way (well, I'd gladly give up the MS if a cure happened along, but you know what I mean)

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  9. I suppose I am an enigma. Trevis always writes thought provoking prose and here he gives another example of those unspeakable parts of MS. As for FEAR...I don't have any. I am in my eighteenth year with MS. I have come to accept that my MS will do whatever my MS will do. I have good days and bad days and I'm blessed to have had the means and the foresight to make my home handicapped accessible.

    I have chair lifts on all of my stairs so if I'm weak or having a bad walking day I can get to all levels of my home, a cane on every level and in our car. My wife, the love of my life assists without asking but also knows when to stand back and allow me to do a task even though she see's the difficulty I might be having.

    After spending ten years in human subjects research I have seen the best and worst MS can do to a person. Yes I did say the best. MS has given me a perspective of myself that I could not have gotten any other way. My MS is now progressive, (the dwindals) my neurologist of 18 years calls it. There is no more treatments no need for a regular visit to see him anymore. "Call if you have a major new symptom or go to the ER." That's what he has told me the same advice from my GP whom has treated me and my MS for the same 18 years.

    If I should have a fear associated with my MS it would be this. I don't want to live a life where I can't take care of myself. I don't want my wife to have to suffer watching me suffer helpless. I'm 47 years old and have been on disability private and social security for nearly two years and will be for the rest of my life. I put all measures in place with my doctors and my wife I have my DNR and my health car directives to keep my wife and me from having to endure some of the ugliest of situations that can come with this devastating and very unpredictable disease.

    So there is no boogie man to me there is just MS and it will do what it will do and I live each day as if it where my last. I never pass up the opportunity to say I love you, or thank you or show gratitude for a kindness done to me. I live with what has become to most a cliche mantra, "Carpe diem" and that's just fine with me.

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    1. Thanks for your uplifting outlook. I was diagnosed 1 year ago and live my life in the same way. Although a curse, I find the many blessings along the journey. I am still able to function at my baseline and feel that when that day comes that I cannot then there will be a purpose in that too.
      That being said my fear is for my husband who worries about my progression and what that will entail for us and our family someday. I plan to stay positive and active though and always with a smile.

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  10. I don't feel like my fears are irrational at all. They are very real and relevant. They make me aware of the changes I need to make to stay safe, keep me prepared, and survive each day.

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  11. Fears: I'll progress to the point that I'll be unable to walk at all; I'll lose my memories in a sea of dementia; we'll become poorer and have to endure all that goes with it; I'll become such a burden that everyone just wants to dump me. I don't consider these fears to be irrational -- they happen to people every single day. I just might be the next in line to be chosen.
    Peace,
    Muff

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  12. My fears are always with me and it's strange because my single biggest fear is that I will be afraid everyday of my life. I have ppms and it has been a down hill slide for the last five years. I don't have much of a support system and this disease has made me feel alone. It seems like everyone I know knows someone who knows someone with Ms, and I get "so in so has Ms and they are fine." What a irritating statement that is. I'm not fine, i'm alone, i'm tyring to take Care of a family, i'm sick, i'm afraid.

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    1. I know some people don't see things the way others do, but chapters can help. It's almost like a sense of Camaraderie. People to stand with you, whether they can or not. I understand how you feel. People think some sicknesses and diseases are worse than others, which may or may not be true, but that doesn't mean you should think one person has it easier than another. People need help, individuals need help, we all need help. Everyone here is willing to help. Maybe it's my own personal family's experiences, but a support system is always out there, sometimes we just haven't found it yet. All the best.

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  13. My fears are always with me and it's strange because my single biggest fear is that I will be afraid everyday of my life. I have ppms and it has been a down hill slide for the last five years. I don't have much of a support system and this disease has made me feel alone. It seems like everyone I know knows someone who knows someone with Ms, and I get "so in so has Ms and they are fine." What a irritating statement that is. I'm not fine, i'm alone, i'm tyring to take Care of a family, i'm sick, i'm afraid.

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    1. What state are you in? I understand what it is like to be alone. I don't see my so called family anymore. They tell me that they are busy with there everyday life, But if I really needed them all I have to do is call. I shouldn't have to call for my family to check on me.

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  14. My MS started back when I was only 16yrs old. So after 20+ yrs. of MS I laugh when I fall & have to drive myself to the ER because I have no one to help me. I laugh at myself when I can spell a word one min. & the very next min. I can't. I look at it this way. If I can laugh at myself then there is no reason for anyone else to do it. The one thing that I fear the most is not being a live long enough to raise my daughter. I'm a single mother of a child that has Autism & who will be here for her when I can't be here any longer. I'm not afraid for myself, but I fear for my daughter. She is the only reason I've made it this long. She is my true gift from God..

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  15. Not being able to pursue the academic career which means everything to me - a very rational fear because fatigue almost destroyed it.

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  16. My one fear is losing my mother. The condition has been a heavy one on us all, and even with it she does her very best to support me, even with her having no money and a disease that cripples her and the family. Her overwhelming selflessness is the thing that keeps me from all the things that go bump in the night, and she tells me how happy I make her with how proactive I am, and how I always do my best for her. It's crazy how this whole thing creates a full circle of support. It's these things like love that, even if for a moment, keep some of our fears at bay. Even with all the hardships, I still think it's important to appreciate everything you have, it's what keeps us going.

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  17. My biggest fear is ending up like my sister, who also has MS. She has MS dementia and is bed-bound. We were both diagnosed at age 39, and I see myself slipping into the same patterns she did. It scares me to death.

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    1. Well, I really hope that this does not happen to you. My sister also has it as well as me. She was just DX.

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  18. I fear my life turning into a mere existence. Like in the story Horton Hears A Who, I want to shout "I am here, I am here!", but I'm too tired and instead I take a nap

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    1. ditto Tammy, that is my biggest fear as well and unfortunately it's a reality at times in my world sometimes (other than my hubby) But I'm too tired to even shout

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  19. Did you say nap ? Boy that sounds good about now !!

    :)

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  20. I fear the government controling my health care. I want to make the choices of what meds I take or don't take. I don't want to lose my disability payments because I am not doing what a panel of people decided we should do instead of what is appropriate on an individual level. I already am on government controlled health care, the VA. Medicines that may help with my symptoms are not all available under the VA until it is FDA approved for MS even though other doctors prescribe it when the MS meds don't work. Right now I have some say but I fear the changes to come with a government controlled health care system. I am treated like a drug addict looking to deceive the doctor in feeding my addiction when I complain about the pain I am in and need something. The doctor made me cry before she would actually start to listen to the pain I am in. Gave me two months prescription for pain and said come back in a year. Now I can stretch the meds for quite a while, I don't like taking drugs but mind you, I have chronic pain. It's been five years of pain everyday. Unfortunately, the pain meds she gave me make me depressed big time so I don't take them. This is government controlled health care but I already see that it will be harder and harder to get a treatment program that is beneficial to me once new laws take effect. I pay out of pocket for acupuncture instead.

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  21. I fear that one day one of my beautiful girls will hear the words 'you have MS'. I'm doing everything I can to ensure this never happens but it's a fear that is always with me.

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