Its Been One Year - A Message of Hope

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Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 12/11/2008 10:43 AM (GMT -6)   
What I am about to post will not describe everyone here, but it will certainly describe my journey so far with MS.
 
One year ago today, I was dx with MS. I was a man of 53 years, and had had mulititude of problems the two years prior to the dx.  When I found out, I cried for a moment when I got back to my car, and had a moment to myself. I do not rmember if I cried because I had MS, but I think not - I cried cause finally someone told me what was wrong with me.
 
With this dx there was a promise, at least inside my heart, that someone would be able to help me with or at least provide me with some relief from the brain fog - that was horrifying, the dizziness, the  vision problems, and the list goes on and on.
 
Years ago when I knew nothing of MS, and ran into someone with MS, my only train of thought was that this person has tingly and numb limbs, and may become disabled as a result of this.  I have learned over the last three years, that (and again I am speaking only of my self) that the numbness and the tingling is all secondary - that MS is a much more complex disease then just tingling and numbness.  The heart of the desease is not that, it is all of the things that only u know what is going on - and that others cannot see. It is the brain fog, the dizzy spells, the anxiety, the depression, the fatigue, heat, lack of other bodily functions - cognitive skills, and all the things that cause most of the grief to this mysterious disease.  I had no idea how complex this disease was until I had the opportunity of experiencing this all first hand.
 
A year ago, I did not know how I was going to do this, but I told myself that I had to, or I was going to allow this to control and ruin my life, as well as all the loved ones around me. 
 
Well I have to tell you, one year later, I feel pretty darn good. The copazone in one manner or another has done something, but learning to manage the disease has been my greatest asset.  Knowing when to have that good old naps - to ward of the fatigue, which seems to trigger so many of the symptoms that I use to get.  Knowing how to recognise that being too warm will set everything in motion, and put me down on my ear.  I have not had any brain fog for months, likely 9 months, which was the worst of my villians.  When sysmptoms do appear, I know now that it is likely to do with being over tired, or too warm, or a combination of them both...
 
My message to myself that I wish to share with u all  - is my attitude and learning to manage this desase has done wonderful things for me, along with the DMT (Copaxone) I am taking.
 
I just wanted to pass this on to the new people, and other too, that have been recently dx, that shiny days still do exist - and in some ways, I appreciate these days more now than I ever did before - THERE IS HOPE in your horizon and future.....
 
Have a great day, and thanks for allowing me to share this with you
Gary
 

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 12/11/2008 5:54 PM (GMT -6)   
Well said!!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 12/11/2008 6:29 PM (GMT -6)   
This is an awesome post, Gary! Thank you.

Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


healing spirit
Regular Member


Date Joined Mar 2008
Total Posts : 177
   Posted 12/12/2008 6:15 AM (GMT -6)   

Hi Gary,

Thank you so much for your post.  I was diagnosed Sept 15th and am going through most of the same things you described.  I am right in the middle of a bad time.  I was just coming off having 3 good days and I tanked with symptoms.  Yes being tired and too warm caused a couple of days that I don't wish to do again. Just when you think you are doing ok, MS reminds you it is always there!!!!   I try to keep a positive attitude most of the time but it has been hard the last couple of days.  Your post has started me off today with much more hope.  It is all about managing symptoms and getting that under control.   Listen to your body because we are all so different in this crazy disease.  There are no standards so to speak.  It is different for all of us.  I guess that is what we all share!  Thanks again and Happy Holidays to you and everyone out there. 

Cindy


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3524
   Posted 12/12/2008 8:27 AM (GMT -6)   
This disease forces you to get to know your body. You will question every symptom.  Some of those will be from MS.  Some will be from other things.  You will get really good at figuring this stuff out and learning how to manage it in your own way.  That will give you some sense of control and that is huge in this MS world.

Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 12/21/2008 5:36 PM (GMT -6)   
Hi Gary,
I agree with everything you say. I have a whole bunch of different symptoms but it is your attitude which is vital and remembering that there is always light somewhere, I had such severe pain that I did not know how to go on. It took a lot of searching but finally, after several years of ever increasing pain & spasticity, I was given a baclofen pump. The relief was miraculous. After spending years in endless dark I live now in endless light. Yes, I still have all the other symptoms but I am so grateful for the relief that I live in a state of continual joy.

By the way I have found diet and exercise (as much as you can do) very beneficial. Give it a try and you may be surprised at how much it helps. Happy holidays to everone smilewinkgrin
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 12/30/2008 1:23 PM (GMT -6)   
Gary,
Your post was right on the money! It's people like you that makes someone like me keep coming back here because it proves to me that others do understand what I go through! God Bless You and I hope you have a Very Happy New Year! Maybe 2009 will find all of us a cure for MS. One can only hope!
 
 
 
 
                                           Chuck Huckaba
                                    AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2007
                                   but still working at the present.

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