From: John latecki

To: fightingms1@yahoogroups.com

Sent: Tuesday, August 03, 2004 9:37 AM

Subject: [fightingms1] Not sure how to cope

Hello everyone,
Before I head back out to the water I would like some input. a lady
sent this to my personal e-mail address. I told her I never heard of
MS doing this anyone. I did tell her I would post it to the group to
see if anyone else ever experienced anything like she did from a
loved one with MS or if any of you with MS can relate to acting this
way.
Thanks John.


> I wasnt sure if this is where I was supposed to
> write about my experience
> with Multiple Sclerosis or not but I thought what
> the heck.
>
> I do not suffer from Multiple Sclerosis personally.
> But it does make me
> suffer.  My boyfriend of 3 years has MS.  He was
> diagnosed in 1994 at the
> age of 21.  I had never known anyone with MS, I knew
> nothing about it.  It
> was only 1 month after we started dating that I got
> my first look into this
> degenerative disease.  He suffered some vision
> impairment, numbness in his
> groin and right leg, numbness in his arm and what he
> calls "really bad deep
> arm itch."  He scratched holes into his arms.  I had
> never seen anything
> like it.  I was stunned.  I had suddenly been thrown
> into a world of Dr.
> appointments, MRI's, daily prednisone infusions, and
> introduced to a person
> I didnt know.  His anger at his MS had been
> channeled in my direction and I
> was his punching bag so to speak.  Verbally abusing
> me, emotionally tearing
> me apart.  He'd always apologize, and once his MS
> was under control things
> almost got back to normal.  But his anger no matter
> what, was always thrown
> in my direction.  Since first meeting him he's
> always had problems with his
> joints "being on fire" as he described it.  And
> every attack left him with a
> limp that steadily grew worse.  I began to research
> MS like my life depended
> on it.  I'd find something, a treatment that looked
> promising, and try to
> talk with him about it.  But he didnt want to talk
> and REFUSED to begin any
> injections after his 2 year experience with
> betaseron.  I didnt know him at
> the time but according to him it was like having a 2
> year flu and made him a
> monster.  Last year he suffered optic neuroitis.
> The pain he experienced
> was unlike anything I had ever seen.  He'd lay with
> his hands over his eyes,
> tears streaming down his face and I felt so
> helpless. The MRI showed the
> optic nerve from his right eye was slowly
> deteriorating, and eventually he'd
> go blind in that eye.  But that was nothing compared
> to his most recent
> attack.  On March 5, 2004, just a few short months
> ago, he had his worst
> attack since being diagnosed 10 years ago.  In a
> matter of days I watched
> his vision, speech and movement start to fade.  And
> I myself entered a hell
> I'm still struggling to get out of.  He refused to
> go to the hospital so I
> rushed him to his Neurologist, 1-1/2 hours away.
> The trip was nothing short
> of a nightmare.  He started punching me, held my
> head down as I was trying
> to drive over a very crowded overpass, grabbed the
> steering wheel and tried
> to run us off the road, and began attacking me with
> insults and names I've
> never heard from his mouth.  During the midst of all
> of this I reached back
> crying and swung.  I still dont know if what I did
> was right but we were on
> the verge of wrecking.  I caught him in the jaw.  He
> was shocked but he
> stopped physically attacking me.  He calmed down
> once I got him to the Dr. 
> His Dr. told him he needed 24 hour care and if
> someone didnt stay with him
> he'd put him in the hospital.  He looked over at me
> and though I was scared,
> I said I would.  He slept all the way home and that
> night paralysis took
> over the entire right side of his body.  I have 2
> little girls from a
> previous marriage, and sent them to my grandmothers
> house so she could care
> for them while I cared for him.  Things as simple as
> going to the bathroom
> required help, he was unable to walk without someone
> to hold him up.  I had
> to place my left leg behind his right leg and move
> it forward, because he
> was unable to.  He'd sleep most of the day, and I
> couldnt rouse him to eat. 
> Meals became 2-3-4am rituals.  The first time I had
> to assist him with
> walking he was like a frightened child and he said
> "PLEASE dont let me
> fall."  I promised on my love for him and my life
> that when I had him, he'd
> never fall.  He never did.  Gradually he began to
> recover, and I thought
> this experience would strengthen our relationship.
> I had never been so
> wrong in my life.  He swears he doesnt remember
> anything of the trip to the
> Dr.  Told me I was lying.  I didnt understand his
> attitude toward me once he
> was able to get up and around on his own.  It was
> almost like he resented
> me, HATED me.  He would tell me on a daily basis
> what a lazy worthless C*%T
> I was, how I made him miserable.  He couldnt stand
> being around me.  I began
> to show less and less of myself to him and when I
> did, he'd yell at me for
> not being around.  He turned into a real life Dr.
> Jekell and Mr. Hyde and
> each was playing tug of war with my emotions and my
> sanity.  I fell into a
> depression, and became in just a short time a very
> timid and scared person. 
> Each chance he got he threw insults at me that put
> me in tears.  Then one
> day toward the end of June he left.  He told me he
> was going to the post
> office and up until last week, I hadnt seen him
> since that day.  He left me
> a note closed up in my laptop that read "Here's to
> you and your miserable
> existance....C-YA!"  He called a few times from his
> friends house but I was
> bitter and cold to him.  Just last week he asked to
> see me and I gave in. 
> Since his departure he began taking Copaxone and
> I've noticed a slight
> change.  He only came home for a few days, then left
> back to his friends
> house to finish up a deck he's building.  He's a
> general contractor.  Over
> the phone a few nights ago I asked him to cut his
> ties with me.  I was tired
> of being on this fishing pole he kept me
> on...casting me out whenever he
> felt like it, but knowing he had me on this line
> he'd reel me back in when
> he wanted me back.  Knowing I'd be there as always.
> He replied with
> something I never thought I'd hear from a person
> like him.  "Please dont
> give up on me."  He wont elaborate much on it but I
> feel like it might have
> to do with the 2 girlfriends he had in the years
> previous to me.  The first,
> whom he was dating when he was diagnosed, cheated on
> him when he was in the
> hospital.  The second up and left out of the blue,
> taking with her most
> everything he owned.  I always resisted when he
> pushed, standing my ground
> and refusing to give in.  I love this man with all
> of my heart.  He finishes
> his deck tomorrow and will come home after he gets
> paid on wednesday.  For
> good finally.  I'm scared to death.  I'm happy, sad,
> excited, angry....I'm
> feeling every emotion humanly possible all at the
> same time.  I'm not sure
> how things are going to work out.  But I'm going to
> try my hardest, as
> always, to show him that no matter what, he can
> count on me to be there when
> his MS takes control.  I'm not giving up on him.  I
> thank you so much for
> allowing me to tell this.  I dont know anyone with
> MS.  I needed to share
> this experience, and maybe find an answer to some of
> my questions.  I'm
> still very confused, unsure if what I've been
> through is common in those who
> are living with someone who is living with MS.  I
> still harbor a lot of
> resentment toward him for doing what he did.   I
> allowed my hurt at what he
> had done turn to hate and fill that void he left
> inside me when he
> disappeared.   I dont know how to let that go.  I
> dont know how to cope. 
> He'll never know what that did to me.  And as much
> as I want to let the past
> lie in the past, I'm only human