Talking about our emotions...

[Heather3418]

I thought it might be interesting to talk about our emotions and not our symptoms.  There is such a huge emotional component involved when we are dealing with "Limbo-Land" or dealing with the diagnosis of MS.  Hopefully after you post you will feel that your load is somewhat lighter for having shared your emotions with others.  It may actually bring all of us even close together.  But talking about what we are feeling and how we cope, can be a huge benefit to our overall well-being.

We are always listing our symptoms and sometimes we talk about our emotions, but we never concentrate totally on just the emotional aspect of what we endure.

Would you be so kind as to share the emotions you deal with and how it affects your daily lives?  Would you share wtih us what you feel your caregivers must go through, when they stand by our side with us, through this whole ordeal? Or do you think your loved ones have abandoned you? How has it affected your relationship with your loved ones?  (For example, has it brought you closer together, do you find that you argue over little things when you aren't feeling well, do you think that your family tries to unload too many responsibilities onto you; when you just don't have the energy to even clean the kitchen or take out the trash?

I personally suffer from periods of doubt in my abilities to contribute to those around me.  I do wonder what 'tomorrow''s' challanges will bring and if I will be able to meet them head on.  I find that some days I am depressed about what MS has taken away from me, then realize how much it has actually given to me.  It's given me a different look at the world and those around me.  I appreciate the little things more than ever before. I don't seem to "sweat the small stuff anymore."

Having MS has given me a totally different outlook on life.  I don't take one day for granted and try to accomplish everything that my body will allow.  I try to live life to the fullest, never knowing what tomorrow may bring.  It has brought me closer to my loved ones because I see the sacrifices they make for my disabilities.  I also have anger for my loved ones at times, when they expect too much of me on one of my bad days.  Sometimes they do not understand that all I want to do is just lay down and rest my painful body.

The greatest gift that MS has given to me, are all of those that post on this forum.  Without the friends I have made here, I really don't know how many days I would be able to greet with a smile.  As much as MS has taken away, I also find how much it has actually given back to me.

I would appreciate your personal thoughts.  Again, not the symptoms of your disease or possible disease, but the emotions you endure, day in and day out; with or without a diagnosis.

I really feel that by sharing the emotional aspect of our daily lives, that we indeed can give some insight to others; how to endure and carry on despite the trials.

All my love to all of you.  My "Angels with Invisible Wings."
Heather

  

[Heather3418]

I am just blown away by the honesty and compassion of each and every one of you that has posted thus far.  You are making an old lady weep, but it's good tears.  It helps me to understand more about all of you and hopefully strengthen the bond between all of us.

Thank you for laying it all out on the line....for trusting us enough to share your inner most thoughts and emotions.  This is what I had hoped would happen.

God Bless all of you,
Weepy Heather
I am SO touched by all of you....WOW!

[grannyhotwheels]

What a great question.  The problem is that today I will probably answer it totally different than I would have last week.  Right now I'm having some sort of bad flare (I hate that word) or something like that.

Today, I'm depressed, I'm in total disgust of what my body can or can't do, I seem to yell at everything my family does because none of it is how I would do it.

My husband is being way to nice.  He is trying to help in ways that's very unusual for him and for some strange reason it makes me mad.  I want to scream at the top of my lungs words that I would never say in my daily life.  I want to go to bed, cover my head, and scream at anyone who tries to talk to me.

Last week,  I would have told all of you that dealing with MS has changed my life in alot of ways but it has not changed me as a person.  I'm still a happy woman who loves her family and this is just a silly disease that I refuse to allow to take over my life.

There are of course days that I'm sad, I call them my pity parties.  I will feel sorry for myself, and pray alot for God to give me the strength to be a good Mother, wife and friend.

Then there are times that I know my family cannot possibly understand the pain I live with every day.  I can't do the things I used to, I don't have the relationship with my husband that I at one time thought nothing could come in between.  I felt like our sex life would be perfect forever.  I never imagined that our love or our life would change.

Then the realization that every thing has changed.  I haven't slept with my husband for 3 years now.  I wonder what he must feel.  I wonder if and how does he still love me. He rarely tells me that he loves me.  We used to never go to sleep without saying the words.  I can't remember the last time was that we sat down and really talked.  I don't mean about a movie that's on, or the grandchildren, I mean really talk.

You know I could go on forever about my emotions and feelings of what MS has done to me, but somewhere you have to stop and ask yourself, was all of this caused from the MS?  I don't know.  I may never know.  All I do know is my life has changed in the last 4 years so much that I never would have imagined it to be this way.  I guess my biggest emotion is the feeling of despair.  How else would you describe it?

One thing I want all of you to know is that had I not found this wonderful new family I really think I would have lost my mind.  No matter how bad it is or how good it is ya'll are always here for me.  This, I trule thank each and every one of you for.  God Bless you All.

This is where I stop.  If I don't do it now then I might just talk all day.  lol  Trust me I wont do that to ya'll.

I'll be praying,
Carol

[Momzilla]

I am having a terrible time with my new diagnosis of "growth hormone deficiency."  I know I am deficient.  This was proven to me in black and white with test results given by a very thorough endocrinologist I respect a lot.

My neurologist has theorized that some time ago, I had some sort of infection in my brain that so stressed out my endocrine system, it produced the deficiency.  It also produced the symptoms I suffer of vertigo, nystagmus, weakness, diplopia and periodic paralysis in my legs. (I also have Babinski's sign)

I am having a hard time moving forward with this diagnosis.  I am developing weakness again, and had a very hard time making it to church this morning.  I am cinsidering buying a cane.  People look at the way I walk, and it doesn't really bother me, but it does bother me that I can't walk well.  Or stand during worship when everyone else is standing.

My endo said that he didn't have any other patients that had periodic paralysis with the GH deficiency, and the Babinski sign was very unusual.  So, I worry that I don't really have my answer.  Not that I DON'T have the hormone deficiency;  I know I do.  I just wonder if I have something more.

I've not really been tested for MS, except for MRIs which came out normal.  I worry that perhaps I actuaaly may have MS, and I'm not doing anything to stop the progression.  I know it can insidiously do damage even when there  are no symptoms present.  I worry that could be happening to me and no one is doing anything to check or stop it.

I also worry that I am obsessed with this diagnostic process.  Why can't I let it go?  I have two fine doctors who have spent a lot of time and energy figuring things out, and they came up with a reasonable diagnosis and treatment.  Am I ever going to be satisfied with testing and answers?  I worry that I'm just chasing an MS diagnosis or I won't be happy.  Who would be happy with that?  

I worry, too, that I won't make it up the stairs today.  My legs are weak and tired and sore.  I don't want to go to work this week.  I feel like pulling the covers over my head and camping out till this all passes.

Feel well, all~

Zilla*

[syndismilez]

Deep Breath....
I have to say that my emotions are also like a roller coaster.  Some days are really hard, others seem almost normal.  My boyfriend has been wonderful, although at first he did not quite understand what I was going through.  He now attends every doctors visit and puts his 2 cents in when he feels the need.  
Today has been a good day.  It is Sunday, so I have had 2 whole days of rest.  The work week takes a lot out of me, even though my job is cushy.  
I get really angry at myself for getting all excited about going to the doctors, thinking maybe today will be the day I will find out what is going on.  I then end up so dissappointed.  I want to throw things so hard!!!  There was one point where I just wanted to get away from everyone due to my Dr. telling me that the symptoms sound like someone who had been abused or something and my symptoms are manifesting and it is like I am crazy!!!!  Yes he acually said that... I gave him the blankest stare.  That was the hardest day for me.  What was even worse was that my boyfriend was with me!  So after the appointment he was even questioning my symptoms!!!  AAAAGGGGHHHHH
That was 3 months ago, and I have a new neurologist.  Thank God!
Somedays, I feel like crying all day and I don't know why!!!  Tears are on the verge, and the littlest thing will make them fall.  I get to feeling sorry for myself.  I feel sorry for my boyfriend, my son.  shoot I even feel sorry for my cat because I forgot to brush her.  
Then other days I can laugh at myself.  Sort of like today.  We went grocery shopping, and I forgot so many things!!!  I even have a list, and my eyes look right over things!!!!  Maddening!!!  It was so crowded in the store, that my mind couldn't keep up, so I even forgot to give the cashier my coupons!!!    If it had been a bad day, I would have ended up crying, but today I just shrugged it off and laughed!  
Whew...this emotional stuff is very interesting when you start writing it down!!  I don't just have a rollercoaster, I have one the goes backwards, and does loops!!!  
Thanks Heather,
Your Idea is wonderful.  I have read everyone's post and I feel so at home here :)  My new family too
Hugs and prayers to everyone!!!!  
One more thing,
My boyfriend tells me that if it is MS, that just makes him love me more....

[treebranches]

I'm pretty void.  It's a combination of fear, being stunned at the prospect of having MS, and the fact that I'm part Swedish so my mom is extremely reserved, as am I.

I'm also stressed.  I stress the stressing.  If something goes amiss I react greater than I would normally, especially if I'm having a flare.  

I'm more sensitive.  If I spill my grape juice, instead of pouring salt on the stain to absorb it right away... I'll stand there and cry about it, I'm so upset.  Meanwhile the stain has time to set and then I cry more about that.

My boyfriend and kitty are taking care of me.  Boyfriend pours the salt on the grape juice and the kitty licks my tears up.  It tickles.

[young at heart]

HEATHER, YOU ARE SUCH AN AMAZING WOMEN THIS A GREAT TOPIC.

WELL HERE IT GOES,MY EMOTIONS OF DEALING WITH MS,IS MOSTLY THROUGH HUMOR BUT IN ALL REALITY I HAVE DAYS THAT HONK ME OFF AS I FEEL THAT MY CHILDREN HAVE BEEN ROBBED OF THEIR MOTHER,THE THINGS I USED TO BE ABLE TO DO I CAN'T.

BUT IN RETROSPRECT  THEY GAVE ME A MOTHERS RING FOR CHRISTMAS ALL 4 OF THEIR BIRTHSTONES AND ON THE BAND GOING TO THEIR BIRTHSTONES IS THEIR NAMES AND ON THE INSIDE OF THE RING THEY HAD INGRAVED "YOUR OUR INSPIRATION"

I'M SCARED,DEALING WITH BILATERIAL OPTICAL NEURITIS AT ONE TIME,STILL DEALING WITH THE VISUAL DISTORTION.

I'M HONKED OFF THAT MY LEGS DON'T WANNA SUPPORT ME,IT'S A REMINDER EVERYDAY OF THIS SINCE I WEAR THE LEG BRACES.

ITS ROBBING OF MY HEARING,GOING FOR HEARING AIDES.

I'M TIRED OF ALL THE MEDS,START MY BREAKFAST OFF WITH 6 PILLS,JUST TO FUNCTION.

I HAVE A LOVING FAMILY,MY MOTHER AND SISTERS,BUT THEY ALL SAY PUSH THROUGH IT,IGNORE IT,BUT I KNOW THEY'D DO ANYTHING FOR ME.BELEIVE IT OR NOT I CAN CALL MY STEP-MOTHER(WHO IS NOT ALWAYS THE NICEST--SHE HAS BATTLED CANCER TWICE) AND BLESS HER HEART SHE LETS ME VENT.

I'M SCARED WHAT MY FUTURE MAYBE,AS I KNOW MY DISEASE IS PROGRESSING AND THERES NO MEDS APPROVED TO HELP,IT MAKES ME ANGRY AS ALL GET OUT.

I DON'T DISCUSS TO MUCH WITH MY FAMILY AS I DON'T WANT TO BURDEN THEM.I WANT MY CHILDREN TO FOCUS ON THEIR ENDEVORS.

I FEEL THAT I GOTTA PUSH THROUGH MY SYMPTOMS AND HIDE THEM AS I GOTTA TAKE CARE OF MY 2 REMAINING CHILDREN AT HOME.

I HAVE LEARNED WITH MS ALL THINGS ARE POSSIBLE,EVEN WITH LIMITATIONS,IT HAS TURNED MY LIFE INTO A WHIRLWIND,BUT HAS MADE ME A STRONGER PERSON.

I FINALLY DID GO TO MY DR AND SAY HEY I NEED SOMETHING TO HELP ME WITH THE MOOD SWINGS AS I WASN'T COPYING WELL WITH EVERYTHING,I FELT BY ASKING I WAS BEING WEAK,AS I WAS RAISED JUST TO WORK AND PUSH THROUGH IT.IT WAS THE BEST THING I COULD OF DONE FOR MYSELF.

I HAVE LEARNED TO COPE,BUT WHEN ALONE I HAVE MY PITY PARTY FOR ONE ON OCCASIONS,DO I GREIVE FOR THE OLD ME HECK YEA,BUT I HAVE SLOWLY FOUND A NEW ME.

THIS PAST YEAR HAS BEEN HECTIC,THE DX,THE INTRUDER,THE 5 DAY HOSPITAL STAY,4 RELAPSES TREATED WITH SOLU-MEDROL INFUSIONS,MY DAUGHTER LEAVING FOR THE NAVY,A CAR ACCIDENT,THE DIAGNOSIS OF ARACHNOIDITIS AND HAVING TO HAVE ANOTHER BACK SURGERY.
BUT AS I LOOK BACK ON THE YEAR I'D HAVE TO SAY IT WAS H**L,BUT I SURVIVED,MANY WOULD OF GIVEN UP.

MY SON CAME TO ME AND TOLD ME HIS WRESTLING COACH REALLY LIKED ME,I LAUGHED AND TOLD MY SON I WAS TO OLD FOR HIM AND MY SON TOLD ME NO MOM,HE ADMIRES YOUR STRENGTH,YOUR WILL,HOW YOU GO THE FITNESS CENTER,MY WILLING TO GO OUT IN PUBLIC ON MY WORST DAYS.HE TOLD MY SON ,WHEN HE HAS A BAD DAY HE BUILDS OFF MY STRENGTHS AND REALIZES THINGS FOR HIM AREN'T THAT BAD.

I THINK WITH THE DX IT HAS CHANGED MY LIFE FOR THE BETTER,RENEWED MY FAITH AND STRENGTH IN THE LORD AND OTHERS.

ITS BEEN A ROUGH ROAD,THE FALLING,THE VISION,THE LOSS OF HEARING,MY LEGS NOT WORKING,BUT I'LL CONTINUE TO BE ME,TAKE EACH DAY AS THE GOD LORD GIVES THEM TO ME AND NOT TAKE ANYTHING FOR GRANTED.

OH YES,I'LL CONTINUE TO CLEAN GUTTERS,DRY WALL(MY WHOLE UPSTAIRS NEEDS GUTTED AND REDONE),I REFUSE TO LET THE MS AND AA GET ME.

I AM VERY BLESSED WITH HAVING YA ALL HERE,YOU HAVE BEEN VERY SUPPORTIVE AND MANY HAVE PUT UP WITH MY WARPED SENSE OF HUMOR.I THANK GOD EVERY DAY FOR YA ALL HERE.I HAVE GAINED A VERY WONDERFUL CYBER FAMILY AND WITHOUT YOUR LOVE AND SUPPORT I THINK I COULD OF GOTTEN VERY ANGRY WITH THE DX AND WENT INTO A DEEP DARK PLACE AND ALL OF YA HAVE KEPT ME FROM THERE.I CAN'T THANK YOU ALL ENOUGH.

I THANK GOD EVERY DAY IT WAS ME WITH THESE DX'S AND NOT MY CHILDREN NOR MY SIBILINGS.THE GOD LORD PUTS NO MORE ON US THEN WHAT WE CAN HANDLE.

I WILL CONTINUE TO FIGHT EACH SYMPTOM AS THEY OCCUR,I KNOW THAT I'M GONNA HAVE DAYS WHERE I'LL NEED A GOOD CRY.I HAVE LEARNED FROM MY CHILDREN THAT THEY HAVE NOT BEEN ROBBED OF THEIR MOTHER,BUT THAT I HAVE
MADE THEM STRONGER.

I PLAN ON STARTING COLLEGE IN APRIL FOR X-RAY TECH,I PLAN ON TAKING THE TEST TO GET MY REAL ESTATE APPRAISAL LICENSE.

I WILL HAVE BACK SURGERY IN JUNE,BUT THIS IS GONNA BE A POSITIVE YEAR.

THE ROUGHEST YEAR IS BEHIND ME,AND I CAN'T THANK YOU ALL FOR HELPING ME GET THROUGH IT.

T-LYNN