How to Manage Fear When You Have Multiple Sclerosis

Vicki Health Guide April 02, 2011
  • Fear is not listed as an MS symptom, but it could be. Many of the questions and posts submitted here on Health Central show degrees of uncertainty when facing life with such a complicated condition as MS. There are so many possible symptoms, symptom clusters, and locations where they can show up. I t...

6 Comments
  • Cathy
    Health Guide
    Apr. 02, 2011

    Vicki,

     

    What a wonderful post (once again) that you wrote.  You know, after having MS for so long I think I put some emotions on the back burner just to get through my days.  Fear is certainly the first in line.  I don't think a day goes by that I don't subliminally think well, what if this issue means my MS is getting worse or I don't...

    RHMLucky777

    Read More

    Vicki,

     

    What a wonderful post (once again) that you wrote.  You know, after having MS for so long I think I put some emotions on the back burner just to get through my days.  Fear is certainly the first in line.  I don't think a day goes by that I don't subliminally think well, what if this issue means my MS is getting worse or I don't know if I should tackle a task because it'll result in beginning another MS symptoms.  Reading your post helped me to see that it's ok to have fear, but to face it head on and not let it consume me.  The example you illustrated of the possibilities we can experience despite our fears is a testament to the human spirit and the true ability for people with MS to lead normal and active lives.  Thank you for letting me say that to myself out loud.

    • Vicki
      Health Guide
      Apr. 03, 2011

      Hi Cathy,

      Yes, I think when MSers like the two of us go through the day, we automatically put fear on a shelf and just continue with the day. After so many years, it is a habit that takes little thought.

       

      Then we run across someone facing some of those same things we lived through, but with such fragile eyes. It reminds us how we felt in the beginning,...

      RHMLucky777

      Read More

      Hi Cathy,

      Yes, I think when MSers like the two of us go through the day, we automatically put fear on a shelf and just continue with the day. After so many years, it is a habit that takes little thought.

       

      Then we run across someone facing some of those same things we lived through, but with such fragile eyes. It reminds us how we felt in the beginning, before we had a special "fear" shelf. It is a reminder not to become complacent.

       

      It does help to say it outloud every once in awhile.

  • Michaelbgerber
    Apr. 03, 2011

    What you do so well and what is so needed is to bring up the topics that no one wants to discuss…..or at least need to be discussed. Again you have raised a great issue in an easy, comfortable and conversational manner.

     

    When it comes to dealing with fear, I think acceptance may be most helpful when dealing with MS (life really). By acceptance...

    RHMLucky777

    Read More

    What you do so well and what is so needed is to bring up the topics that no one wants to discuss…..or at least need to be discussed. Again you have raised a great issue in an easy, comfortable and conversational manner.

     

    When it comes to dealing with fear, I think acceptance may be most helpful when dealing with MS (life really). By acceptance I don’t mean resignation. I mean accepting the fact there are some things in life that we cannot control (like having MS) and recognizing when we have influence and exercising it.  Some time ago I wrote “Denial: A Basic Survival Skill.” My psychologist friend disagreed with me.  She said we need to develop coping skills. I think we are probably both right.

     

    Fear of the unknown describes every day. Some people get hit by a bus. Some win the lottery. Some get a chronic illness. As the saying goes “It’s not what happens. It’s what you do about it.” You do great stuff with your MS and that makes us all a little less fearful.

     

     

    Michael

    • Vicki
      Health Guide
      Apr. 03, 2011

      I do seem to write sometimes about topics so many of us don't even want to acknowledge. Yes, in life, not restricted to MS. As I get into some of them, I would be just as happy not to deal with it now. I want to present all of these topics with honesty and respect, and I hope I come close.

       

      Yeah, I know, I know. Acceptance is the goal, but I am a believer...

      RHMLucky777

      Read More

      I do seem to write sometimes about topics so many of us don't even want to acknowledge. Yes, in life, not restricted to MS. As I get into some of them, I would be just as happy not to deal with it now. I want to present all of these topics with honesty and respect, and I hope I come close.

       

      Yeah, I know, I know. Acceptance is the goal, but I am a believer in the five steps. Denial, among other interpretations, is time to take a breath, maybe make a subconscious plan to continue, or maybe just deny. Some people try hoping it isn't so. I think denial is very important. I always appreciate your words and thoughts.

       

      Your warning about resignation is true. I think anyone who is resigned is simply stuck somewhere in the depression step. I think these steps are important. There are times we can skip steps or relegate them to others, as in the bus example. We can continue this another time/place, but only if I get to read your thoughts on denial.

       

      Until then, I'll admit I try to select this type because I have to think about it and this is one way to do it. Also, I want to thank you for your comment. You are thoughtful, and you often come up with something or a way I had not thought about the topic.

    • Mother
      Jan. 22, 2012

      Whatabout my daughter who has secondary progressive MS. is now totally bedbound, permanently disable and is totally paralyzed except for her right hand and arm.  Yes, she can speak and watch tv and use a computer with her one hand.  She cannot do anything for herself.  What will happen when I, her mother, am no longer here?  ...

      RHMLucky777

      Read More

      Whatabout my daughter who has secondary progressive MS. is now totally bedbound, permanently disable and is totally paralyzed except for her right hand and arm.  Yes, she can speak and watch tv and use a computer with her one hand.  She cannot do anything for herself.  What will happen when I, her mother, am no longer here?   The nursing homes in our city are impossible---we have had some terrible experiences with some, and I have investigated almost every one.

       

      There is a lot to worry  warnsabout if you have an acute case.  Medication has totally ruines her mouth; who warns you of this?  Doctors have no info on where to get help.  This is sort of a do it yourself program.  The MS society is helpful to a point.  This is an extremely expensive illness.  Winning the lottery would be great.  Thank goodness for medicaid which took us 4 years to convince them we were entitled to it.  Just hope you have backup support.

    • Vicki
      Health Guide
      Mar. 15, 2012

      Hi Mother,

      Fear is certainly a part of MS that we cannot ignore for long. Thank you for your comment.

       

      I was interested reading your comment because you could have been my mother. I have secondary progressive, stay in bed more than anywhere else, but the hand I can still use is my left.

       

      Since your daughter still has use of her voice, has she ever...

      RHMLucky777

      Read More

      Hi Mother,

      Fear is certainly a part of MS that we cannot ignore for long. Thank you for your comment.

       

      I was interested reading your comment because you could have been my mother. I have secondary progressive, stay in bed more than anywhere else, but the hand I can still use is my left.

       

      Since your daughter still has use of her voice, has she ever tried voice recognition software? It really is a valuable tool for those of us who pick through the keyboard with only two or three workable fingers. It often makes writing (even comments and emails) more pleasant.

       

      I think it would be very interesting if the two of you publish a post or two about you trials with Medicaid. Many people would find that helpful because there is not enough information available. It is amazing how many MSers face that same journey -- qualifying for Medicaid. The other part of your story that many of us understand on a personal level is wondering who will be the carer when a primary care giver can no longer do it. That is something we need to address while there is still time.

       

      I wish you and your daughter much luck. I hope you have found a workable caregiver. Please let us know how she is doing, and you, too.