Talking about our emotions...

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

  

[speechgeek]

I am so new to this and I feel that my feelings are so raw. I don't have a diagnosis yet. I know that everyone thought I was crazy until my emg was abnormal. This is going to sound weird but I am scared that I might not have MS and It might be somthing worse like ALS.

I am so blessed that I have a husband that helps me and now has to do everything laundry, grocery etc. and he does it with smile. He is in the military so he is emotionally detached form this situation. Yesterday was the first time he asked me to explain to him the differnece betwwen ALS and MS.

I worry about my children. I want to live long enough to see them safely into the world.

I feel sadness and I feel sorry for myself then I tell my self STOP IT!! you have RIGHT NOW don't waste it. I have to talk to myself a lot.

I so get no longer sweating the small stuff. I was a perfectionist when it came to the house. We had dear friends that came into town yesterday...the house was picked up but there were dust buffalo every where. I didn't care because it was about the friends and not the buffalo.

I too view the world differently.. everyday I make myself say ONE thing I CAN do versus the 5-10 ways my body failed me that day. Today I can walk without pain.  

I am so grateful for this forum even though I am new i have come to appreciate it. I am surrounded by people in my life that love me but I felt very alone until I found you guys.

Thanks to all of you that have listened and take the time to read and respond. I value every word and thought you have to offer.

Rebeccah

[sllowe]

Keeping this on top!

This is a GREAT idea!

Once I posted here, and shared all that was going on w/me, I haven't left.  This will be another thread for the memory books, something all should do, if haven't done so.  

I cherish all my responses, and the friends, and knowledge and experience that came along with them.

Be well,
SL

[mokibear]

Emotions, wow, great topic. It does require some soul searching to find truly what you are feeling compared to what you try to show the world.

I have felt like I am on a roller coaster for the most part for the last 2 years. I knew that something was wrong with me but the docs aren't fast on believing or trying to find out. So how has that affected me?

I go through bouts of anger, depression and complete frustration. I want to live like I did before and feel as if I am being robbed of that and don't know why. Fear is also a big factor in all this. Not only the fear of now knowing, but as I discovered last night, the fear of actually getting an answer.

Without realizing it, I have found out after much soul searching over my fear of this next appointment that I had started to identify myself as a limbo lander. Now I may have answers forthcoming and it scares me to death because then I will have to start anew with understanding and dealing with the outcome. Whether a good or bad diagnosis, what I have come to know as my life these last couple of years, will once again change.

I love my family dearly but at times I too find it to be difficult to deal with. I try to do what I can and when I can but sometimes they make me feel like a small child who needs to be protected. I get angry then because if I'm having a good day, I want to contribute and they won't let me. I also realize how fortunate I am to have such a caring family.

My DH on the otherhand is the opposite. When I am having a really bad go, he will not help at all. I get the feeling that he thinks if he makes me push, then I will be better. So that causes friction and anger with me because then I feel that it is another thing I have to deal with. The I feel guilty as I realize how hard this must be for him to watch me go through all this and him not being able to do anything about it. It has brought us closer in some aspects and in others it has made things very difficult, if that makes any sense.

I get depressed over how this has affected me and my family. I'm sad that my symptoms have caused this to become a life altering thing. I do though now let the small stuff go and realize how precious life is. I take each day as it comes now and if it's a bad day, I try to deal with it the best I can. If it is a good day well yahoo!!

Being able to come here has my life line through all of this. I have shared more emotion here than I think I have done in my whole life. Thanks to you wonderful people, I find that what I feel is not unusual and that it is okay to be down, hurt, angry, scared and frustrated. Where I thought I was going crazy, I find from you all that I am alright.

I am looking at this now as more of a learning experience. The vast array of emotions has taught me a lot and I am not saying that I will not still feel these from time to time, but now I know that I need to look deeper in me as to the true reason for my feelings.

Thanks for this post Heather. Again you show us all how caring and insightful you are. This is an important part of what we all go through.

HUGS
Mok

[doni54]

I am undx and due to financial problems and no health insurance, have not had any tests.  I fight depression everyday because I miss the person I used to be.  I can trace my down hill trend back at least 10 years maybe more.

This year has been extremely difficult and even though I have a close and very loving family, they do not accept that something is terribly wrong.  I have always been their rock and the one to fix things when they needed fixing.  My family doesn't understand that I'm not that person anymore, even though I do still try.  I think they are ignoring my problems because they love me too much to accept that something could be wrong.

It hurts me deeply when one of my family expects me to do something that is impossible for me now, and I see that look of disgust or aggravation on their faces.

When I am having a bad day or in extreme pain I just keep my mouth shut and endure it without complaint.  Except to you guys or my buddy Samantha (UK2).  I can just no longer handle the looks that tell me that I just could not be in this much pain.  I am sure some of you can identify with this.

There are days when I can tell that my husband realizes something is wrong and he tries to be understanding.  He loves me, but he is just so used to me being strong and able to handle everything, the person I have become is not someone he recognizes.

My husband and I are residential home builders and we have worked side by side for 11 years.  I have done everything from framing, landscaping, decorating, to the final cleaning on our homes.  I have been slowing down for the past 5 years, but this year I didn't do anything, I just wasn't physically able.

Decisions were always made by both of us, but now I have so many days that I can't even think, this too has become impossible.  I am, or was a very creative person.  I could picture in my mind what the finished home was going to look like and proceeded with the building and decorating with that objective in mind.  I can't do that anymore because it is though my creative mind has closed shop.

This breaks my heart, because all my life I have been a hard worker and considered myself to have a bright and creative nature.  It feels as though I only have a small part left of what was once an intelligent and successful person.  I really miss her.

I have days when I make myself a promise that "today is going to be a good day no matter what", but by lunch time I am back to the point of just giving up.

I love to read and I am having so much trouble with my eyesight that I get really afraid of what I would do if I lost it.  I guess I just live in a state of fear everyday of what might go wrong next.  This forum is a lifeline and if I can't see, then I would be cut off from all of you, what would happen to me then?

I want so badly to find a dx, but right now it is just not possible.  I think that when I know for sure what is causing my problems it may help me to cope better.

I just want all of you to know that I love all of you and even though I don't post much anymore, I am still here and trying to keep up with all of you.  This forum and the friends I have made here keep me going.

I have always been a stubborn person and I intend to keep that part of me no matter what.  I do not believe in giving in or giving up.  My body, mind and eyes might be declaring war on me, but I still have a heart and soul that knows I am strong and will win this battle like all battles that have come before.

doni

[Heather3418]

What a FANTASTIC post...that's the way to go girl...get all those feelings out in the open.  Re-read your own post and read it often.

You will find something different you didn't know about yourself and your emotions, each and every time you read it.

Thank you SO MUCH for sharing all of this with us.  This is exactly what I was hoping for, when I asked for people to voice their emotions.  It I believe, will give us all something to discuss with each other and hopefully help each other through.

We are with you babygirl...every step of the way.  ALWAYS!!!

My love,
Heather

[elsiek]

Wow, what a question.  I have been diagnosised for 20 yrs at age 28.  I am certain that I have had symptoms since I was a teenager.  My life has taken many turns in 20 yrs.  Plans I made at 20 have been changed, goals have been modified.  Thru it all I have tried to keep a positive attitude.  

I focus on doing things that have nothing to do with my MD.  I sing in two groups.  I do the same music, most of the movement but have to sit on a stool to perform.  Both of these groups use me on the stool as part of the performance.  I sit center stage, front row due to the part I sing.  Being center stage on a stool makes me stand out but being a performer, I can deal with it.  I must deal with it to fit into a society where most people are still able bodied.  It gives me a great feeling of accomplishment.

I have accepted my MS as a part of me, but not the whole of me.  Yes, I get depressed at times.  Sometimes I just need a good cry on my husband's shoulder.  By the way, I just got married on New Year's Eve, 2005 and is a second marraige for both of us.  Before we were married, I was in a sharp decline.  I did three doses of Novantrone and I was able to stand for the entire wedding.  My family didn't think I could and there was a chair handy if I needed it.  But I was determined to stand up with my husband as we said our vows.  The memories are priceless.

I decided from the beginning to not hide my MS from anyone.  I have interviewed for jobs and have gotten them even after disclosing the MS.  All my family and friends knew from the beginning what I was dealing with and decided they would be there to support me in any way needed.  I have found this to be an inspiration to some people.

Nothing get me more angry than for someone to tell me I cannot do something simply because I have MS.  I demand to be the one to make that decision.  And I love proving them wrong.  And I am human enough to admit when I truly can't do something I want.

Life with MS can mean many things.  It is up to you to decide how much control you are willing to give it.  Even after 20 yrs, I am still learning.

Good luck to all.

Elsie

[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

[tamhart9]

I am not diagnosed yet, but have so many emotions and yes I am willing to share.

I feel like my family don't understand and dont want to care. I find myself yelling at them a lot for things that I would do but some days are just to weak to do. I want them to understand the pain and frustration that I am experiencing with this "probable MS" diagnosis. I know that they are so different but I also know that I am different now too then I was 2 years ago.

I can hardly walk up steps and I lay some nights just crying in pain. I think maybe I am crazy because no one wants to believe the symptoms that I experience and at the different times I experience them.

I feel lost somewhere with no reason to return. I love to go all the time but I fear what will happen if this is MS and if I cant drive anymore. My daughter graduates from high school next year and is very active in band and other things... I cant help but wonder will I be able to walk with her on that football field for her senior night. Will I be able to stand and cheer for a job well done when she walks across the stage as she completed another milestone in her life.

My son graduates from college. In 2 years will be marrying the love of his life will I be there?? Will I be able to hold my grandchildren when ever they come into the world??

I have changed so much emotionally and physically that it is scary for me. I dont like to have to be cared for... I am the tyoe of person who always cared for others. I was a hospice nurse for many years and hate that I can not be out in the community any more lately. Not because I dont want to be but because I cant.

Everyone because you all are so special to me I want to tell everyone a secret... Only my family knows about me... My husband and I adopted a young man who is now 26 and has cerebral palsy. I cared for him and lead  him into the young man he is now.

The sad part of all this is now he is leading me down the path of trying to stay strong and be who he knows me as. He has  become my inspiration just like he use to say I was his inspiration.  

Some days I cant talk to my family because I know they dont know what I am feeling and dealing with and that is when I turn to this forum. I know I am still new here but I hope I can become old here really soon. I love you guys and thanks for such a great place to loose my emotions too.

[doublevision1]

Really good question, Heather.  From reading all the great posts, it seems this topic is long overdue.  We’re so focused on our physical health, and rightly so, that the emotional aspect is sometimes overlooked.  I will admit that in the past, I way underestimated the emotional impact of being diagnosed with a chronic illness, until I experienced this personally.  And I was trained as a social worker, for pete’s sake!  Just goes to show…….you can empathize and still never really understand what someone is going through till you’ve been there yourself.

Like all of you, I have experienced a whirlwind of emotions since learning of my possible MS and again upon receiving my definitive diagnosis.  Some of the more prevalent ones are:

Panic:
I have had a couple of serious meltdowns, of the panicked, near hysterical variety.  I am normally pretty reserved and calm; this was a very scary feeling to me.

Disbelief:
After 4months, I’m still not sure that the full reality of this has sunk in.  I believe this is going to take some time.

Fear:
Of losing my physical abilities and my independence.  Also I am very afraid that my double vision will never recover and that I will be stuck with this for good.  I realize this is very possible and am trying to get my head around it.

Anxiety:
That I have much less control than I perceived I did before being dx’ed.

Shame/Embarrassment:
This is a weird one.  I know in my rational mind that I did nothing to bring this on, yet sometimes I feel ashamed about it.   Thus far I have been somewhat quiet about my MS.  I have told close friends but sworn them to secrecy.  I have told only a couple of people at work.  I don’t want my condition to be widely known.  I don’t want people to feel sorry for me.

Sadness:
That things will never be the same.  I am working on letting go of this.

Regret:
That I took my good health for granted all those years.  I also am letting go of this; it’s only going to rob me of happiness today.

Relief:
I did not feel relief at the time of my dx; I had not been suffering for years like many others.  However since learning a lot more about other neurological conditions, I now feel relief that it is not something worse.

Hopeful:
Not an optimist by nature, I am surprised by the moments I am taken over by hopefulness.  Hearing about how people go on and do well after dx is really helping me.  Looking forward to starting treatment is also giving me hope; as is all of the research on MS that is in the works.  Even if there is no cure in my lifetime, it does seem likely that treatments will improve.

Resolve:
I am starting to believe that I will be able to handle this.

Love:
Never have I felt more love in my life than in these past few months.  

Gratitude:
I hate that this is happening to me.  So I am amazed that I feel any gratitude at a time like this, but I honestly do.  Where do I start?  Fantastic doctors, compassionate and kind nurses, prompt and thorough medical attention, free MS meds and universal health care in general, a supportive employer, great benefits, job security, financial security, the loyalty and support of my friends, and most of all, my husband, who has stepped up to the plate in a big way.  He is doing everything for me, with compassion and without complaint, and finds ways to make me laugh even on my darkest days.

This really is a roller coaster; some days I feel all of the above, and then some.

I for one do NOT believe that everything happens for a reason.  I do however believe in finding meaning in what does happen, which is different.  I believe MS shoots randomly, and like all of you, I happened to get caught in the cross-fire.  I honestly don’t think “why me?”  Perhaps a better question is, “Why anyone?”  No one deserves for this to happen to them, but there it is.  The best I can do is to try to stay calm; try not to worry too much about what the future will bring and focus on today; not take for granted what I do have; and try not to mourn too long for what I’ve lost.

Thanks to all of you for the information, support and hope that you give me.

db1  

[Super_sally888]

Hi,
I am a limbolander.  There is something not right.  I don't know what it is and my doctors don't know / haven't worked it out yet.  My close friends (who know) make jokes about imaginary illnesses.  

They ridicule me for "making my doctor think there is really something wrong". (my endo is the one still with and supportive).   They think I am obsessed with my health.  So nowadays I don't even mention it to my closest friends.  I just live with it.

I even feel reluctant to see my drs (don't have a good neuro yet)... because I know they are scratching their heads and have no answers and find me a 'difficult' patient. My endo still keeps muttering about MS.   Anyway, what am I worrying about, I am functional.

I haven't told my family anything.  I can't tell them anything.  Anyway, they are all too far away to do anything.  So no diagnosis and I can't tell them anything.  In a way, that's good.  I don't want them to worry.

I guess denial that anything is wrong is the strongest emotion I am trying to maintain.  I want to believe there is nothing wrong.  I am not disabled!  I mainly have sensory symptoms, with a little visual stuff thrown in.  That can be caused by psychosomatic causes.  Or maybe just my thyroid playing up (though I know that's not the case).

Then there are despair days.  I can't tell anyone what's going on anymore because they all think its in my head.  This makes me so sad.  I want it to just be in my head because I want it to go away.  And if it's just in my head, then it can stay there. I feel this so strongly that I am crying as I type this.

I have so many goals in life and this limbo land thing makes it harder.  harder because I don't know what's going to happen.  harder because my body is acting strange, and harder cause I get really tired.... but then maybe that's just cause i'm busy.

I get so angry at myself.  I should not be like this.  I should be able to ignore everything. I should be strong.  I should be achieving all my goals and performing brilliantly at work and other things I choose to do.   I should not be seeking answers for my imaginary condition.

Oh dear.  Sorry. Verbal diarrhoea.  Gotta work now.  Deadlines overdue.

Sally

[Heartshome]

What an interesting topic idea. Hope this isn't too long!

I am a limbo-land person. I've had symptoms for approx. eight years. At first I completely ignored the numbness and tingling in my feet, as it only occured when I was stressed out. Finally, it got so bad that I mentioned it at work and people were concerned.

When it started happening in my hands as well, and when I started getting lots of strange symptoms all at once I got concerned and saw the doctor.

Twice now I've gone through the whole workup only to find nothing. My doctor who I loved suggested it might be depression and put me on AD. The medicine has helped me feel much better, but my symptoms are still there, although they seem much better recently.

I started off feeling really strong emotionally. Even my doctor told me how well I was handling all the uncertainty. (First, probably MS, then maybe Lupus, then probable MS, then no MS, ...)

However, I've noticed that I started really obsessing about finding out what was wrong with me a year ago. It's so strange when you KNOW that your body isn't feeling/acting right. You KNOW that you aren't a neurotic, hypochondriac-type person, but a logical, pragmatic, intelligent person. Yet it seems like no one will believe you.

My husband has been great about it all. My Mom (who is a RN) has been great, but I think she thinks it's all a stress response. Perhaps it is, I'm open to all ideas and will be seeing a counselor soon to talk this through.

I don't want to have any disease! If this is depression, and if I've found out and can control it with medication, etc. I'm thrilled to do it and move on.

But these past six months or so have been very tough. I'll think that I have accepted that I might not ever know what's wrong with me and just move on, only to discover that I can't let it go. I'm scared that there might be something that can be done if only I knew what "it" was.

At first I was afraid to make any plans for the future. Now I am going on as if nothing ever happened. However, I worry still that this may impact our financial future. I guess I don't even know how to explain what I feel. I'm only glad that others here seem to understand! :)

[pins_n_needles]

Two hours ago I was at my doctor's office looking at films of my brain, the second MRI I have had since October. He was pointing out the white spots and how they have grown larger, blah blah blah, yada yada yada. I interupted him and asked point blank. "So, do you think it is MS?" and he said Yes.

So I am in shock. I don't know what to feel right now. I read these posts, and there are so many emotions represented that I have felt in these last couple of months. I especially relate to doublevision1's post.

Today, I feel DOUBT - maybe the doctor is wrong? A couple of months ago, after the first MRI, docs at OHSU said it did NOT look like MS.

I feel RIGHT - All along I've had a feeling in my gut that it was MS, and they just didn't have enough info yet.

I feel SCARED - For my self, for my family, for my business. For what the future might hold.

I feel PISSED OFF & full of SELF-PITY - If everything happens for a reason, why me? Although, I think that "finding meaning in what does happen" is a better path for me.

I feel CONFUSED - About the stacks of drug info I left the office with. The hilarious thing is that each set of drug information (there were 3 drugs) was packaged up in a tricked out gifty messenger bag like you'd pick up at a trade show. Told the doc l felt like they were saying "You've got MS, but here are some lovely parting gifts for you!" Do they think I'll pick the drug came with best free bag, or what?

Anyways ... It has been a couple of months since I posted here. At that point I was in Limbo land. Just being back on this board for a few minutes has given me some comfort, and the reminder that I am not alone with this new diagnosis.
Pins

[biowham]

My dx is currently "probable MS." My feelings are (a) sadness that I may not be hiking with my husband through our retirement years (if we get there), and (b) extreme relief that it's not something immediately life threatening of the "you have six months to live" variety that would take me out of the running to see my children grow up. I know other emotions will arise. I've had incidents of near pseudobulbar affect a few times in the last two weeks, involving sudden tears out of nowhere. I'm not very good at recognizing and naming my emotions (we have autism in our family and are all "unusual"), so if this seems overly rational, it's still sincere at this point in time. I find that my emotions will catch me completely by surprise, especially strong ones, so it could change at any time.

Because I'm very much a "one-day-at-a-time" kind of person, I'm trying not to project too far down the line.

Emily

[syndismilez]

hello,
ok...I am shivering....it is cold here...lol...39 ...Florida...brrrr
I just lied in bed...crying.
I am so mad....
I just thought of the many years....I had mono when I was 7...then again when I was 16...then again when I was 24...then again when I was 28....finally I quit being tested for it.....chronic fatigue..they tell me..One Dr.metioned Ms...10 years ago ...the second
time 16... I started the severe aches all over...especially in my legs....it would roam...from leg to arm...from arm to torso....from torso back to leg....I could take tylenol...and count the minutes till relief!!!  
I am 36 now....still having the aches....I went through college....Was in dance company....tae quan do.....did everything till it made me sick...I endoured it....I would lie in my dorm room....aching....sick from all the exercise and heat....
I didnt know....
Got married...got pregnant...everything great....till 2 months after pregnacy....my legs started to freeze and stretch without me telling them to!!!!  weird!!!  But I didn't go to the Dr....Just thought, it is just me...
Now, I know something was not right....
I just get so frustrated.....listening to the Dr's tell me I am just fine....
ugh....
sorry my friends....I just needed to get it off my chest per say.....
I love each and everyone of you, and thank God for this forum...for Quix, for Heather our backbones.....
I am sure I have left out much of my lying in bed crying outburst, but I got a lot of it written....
I hate Mono.....I don't know it that is what caused my symptoms...but I sure dont doubt that it has a role in it.....
I was born in Japan, (navy brat) and never got sick until I moved to
Arkansas....
It is so embarrasing to have to cath in front of my boyfriend...
It really sucks....invalid I tell myself...why cant I pee!!!!!  
Then I love my good days..!!!! LOVE THEM!!!!
hate the bad days....Really hate them....
I am not DX....I dont' want to be...but something deep down inside, just says to give it time....the right Dr. will come along and listen to me....I have found the greatest urologist...he listens....asks questions....he really knows me....and understands what I am going through
OK...enough
sleep time....
love each and everyone of you!!!!!
Syn
Thanks Heather...may your trip be safe.my deepest sympothies....
pins and needles....sorry for your DX.....We are all here for you....Dx'd or not :)

[kitten o]

THIS IS A REAL GREAT IDEA.
I WILL POST IN A FEW DAYS,
KITT
.

[Eliza3]

I'm not well known around here. I just have a hard time talking about problems. But since my husband and I are going to marriage counseling today,(this will be our first session) I thought I would practice talking.

My emotions go up and down. Sometimes they keep going up and down over and over and I end up getting sea sick.
I have to admit that when my MRI finally showed the MS this time I was happy. I felt relived after 27 years of telling one doctor after another and having 2 MRI's and nothing. Now I can go tell those other doctors Nani Nani Boo Boo.
I finally told my husband to quit taking my home-making job away from me. That if I need help I will ask for it. That just makes me so angry with him. I know he is just protecting me from frustration and pain but why now why didn't he protect me from his sister n law?
I have to tell you all; I haven't had the pain with this until this last week. Sunday I got up to go to church and had a real hard time walking. I could not stand straight up and my legs dragged. By the end of the day I could not move my legs at all. NO I did not go to the hospital or call the doctor. But Monday morning the pain was still there and I could walk. Every day I sit and remember my sister going down hill and she is now in a nursing home. Not even able to sit up. My hope goes way down and the pity party is on. I like chocolate pity party cake what kind do you like?
It is time to put away the cake and start living my life like I had planned. I now have 3 grand babies they are 3,2,1. I enjoy spending time with them. They are my life right now.
I enjoy reading the post on this forum.
Heather my heart is with you.
Quix, I pray you are doing better. You and Heather are really great.
Well I need to go my right eye is hurting and my left see's double all of a sudden, again.
Love you all
I will let you all know how the counseling goes. (He is the one that made the appointment so that makes me feel good. I know he wants to make this marriage work)
My name is Elizabeth but I go by Eliza. That is what my mom has called me since I was born.
Love
Eliza

[Want to feel well!!!]

This is a good idea Heather.  Not only to allow each of us to vent, but to see how everyone else handles all of this.

Lately I just keep it all in because that’s what works for me.  I tell everyone I am fine because it is the easy way to deal with it.

The other day I did have a slight breakdown, while I was alone, and vented to myself in a mirror, and that seemed to help.  I grew up keeping everything inside and I seem to have fallen back into what worked so many years ago.  

Family and friends really don’t want to hear the same song over and over.  I still sense doubt from those around me and that is one of the hardest things to handle, so I simply don’t talk about it.  

My husband is a great person, but unable to be someone I can lean on for support.  I’ve accepted that.  

My life is what it is.  It’s up to me to get through this and I think I am doing okay.

Wanna

[Rose1963]

Soooo very much is going on with me right now!  On top of my MS, DH who has been the strong one, is now even sicker than he was with kidney stones.  His diagnosis doesn't look good for me and I rittled with anxiety about what to do for the future.  Here are his synptoms, a swollen spleen, had ultra sound that showed it, has elevated liver enzymes, low RBC and low platelets, has chronic pain on right side near ribcage that radiates into the back and this pain is now also near his left ribcage.  Google that and given what the docs are doing, this is scary!

I am trying so hard to pray about all of this, but all my spirit can do is groan.  Have faith, Keep faith that's what my church friends say.  And I am trying to be positive.  But hey there is the reality of it all and we are in for one tough ride here.  Yes I know that God is the great physician, all of that, but I can't grasp that right now.  I am watching my husband really suffer with pain and chronic fatigue.  The doctor told him when he sees the pain managment doctor to have his pain meds increased so he can be "comfortable".  I didn't like the way that was stated at all.

About me, well, tomrrow I was supposed to go for my first Tysabri infusion, but now I can't bring myself to go.  For those of you who don't know, I had a severe reaction to Rebif and almost died.  So I am very apprehensive about all DMDs.  The way I view my MS right now is that mine is progressing slowly, so unless something drastically changes, why worry about the meds now.  After all, I've been diagnosed for 3 1/2 years and I am still very mobile and do quite well.

I feel like I am falling into a black hole.  Well, I have already fallen.  I don't know what to pray.  That for me is usually not a problem.  However, I usually pray for others not myself.  Spiritually I feel bankrupt.  Almost like a lost soul.  

I know stress is not good for MS.  And I know that any given day everything for me could go south.  I got lesions, but my symptoms are very minimal right now.  Sort of puts me in a state of almost denial.  

Then there are my 2 teenagers.  My daughter who is 14 and my son 15.  They know things are horribly wrong with Dad.  There's no hiding that.  Also, they are wise beyond their years.  But they are good teenagers and I am thankful for that.  We are an extremely close family.  I am thankful for that also.  There is no problem with openess and honesty.  I just didn't want them anymore burdened than they already were.  Hubby going through the bout of kidney stones was just awful on all of us.  Now it looks like the road just got tougher.  

I guess I am having a pity party.  And I am sorry.  You can all tell me not to come back if you want  to.  I'd really actually understand if you did!

Rose1963

[kitten o]

I DO NOT NO HOW I FEEL.
I AM VERY SAD AND SCARED. I WILL BE HONEST.
I WILL NOT SLEEP NOWING I HAVE EYE PAIN,
I AM SCARED THAT I WILL NOT BE ABLE TO SEE. IF I FALL ASLEEP.
I AM TRYINTG TO UNDERSTAND ABOUT THIS SH-T I HAVE.
I USE TO BE VERY STRONG
AND HAVE HANDLE ILLINESS IN MY FAMILY FOR
A LONG TIME. BUT NOW IT IS MY ILLINESS.
AND I DO NOT NO WHAT TO DO. I CAN NOT WORK ANYMORE.
AND BELEAVE ME I AM DYING TO MAKE MONEY.
I FEEL HELPLESS AND ALONE.
SORRY BUT I HAD TO EXPRESS MY SELF.
I THANK YOU ALL FOR BEING HERE FOR ME.
BECAUSE I HAVE NO ONE ELSE.  NO ONE ELSE.
KITT

[Angie1960]

I've been wanting to post - about emotions.

This is the worst - I feel bad, I've felt bad for many years.  The depression has driven me to daily suicidal thoughts.  I just deal with it - the Psuedo bulbar or "labile effect" and not knowing when it will hit - I've had that for probably 20 years.

Why do I want a Dx?  Cause I want to feel like I am a survivor and that my abrupt abandonement of my dreams, declining motivation, lesseining abilites, etc. were not all my fault.

Getting a Dx - I get to remember my childhood and how my parents basically ignored a chronically ill child and I got to remember all the things I had forgotten, like the fainting and sleepwalking, the pains in my legs, and how I made wallking aids by taking my father's belts, strapping them to my thighs and pulling each leg up by the rest of the belt with each step.  I only needed this after the repeated penicillin shots I would get in my *** everythime I got strep throat.

I wonder when I see the definition of MS, many scars, if some of us (at least) share that on more than one level.

[Barbie51]

I've never been asked about my emotions of MS.  Very good question.  When diagnosed in '02 I was absolutely terrified.  Unlike many, many others I never in my wildest dreams suspected MS.  All I knew about MS is a very nice lady who taught bell choir when I was a young mother had it, and she could barely walk, even with a cane.  I immediately apologized to my husband that he would be strapped to an invalid and went home trying to prepare for waking up one morning blind, lame or paralyzed.  I was just starting a new job and thought my life, as I knew it, was over.  After many months I begin to accept my diagnosis and learn more about what it meant.  I did immediately start on Avonex, which I'm very grateful for.  I've realized I can't plan for the future, because nobody knows what it holds.  I quit that new teaching job after three years because I just couldn't handle the fatigue and stress.  But I met amazing people there, whom I still consider to be good friends.  They were very supportive of me and my diagnosis.  My husband is wonderful, as are my children.  I have pity me days, but mostly I'm kind of grateful that MS made me slow down and realize all the wonderful things and people that are great in my life, and that I can contribute to this life in a positive way, even if I can't "work" anymore.  I don't believe God "made" me this way for a reason.  Instead, I believe he allowed it to happen, and I can trust in Him to help me learn and grow and endure.  And I believe He has already helped me with that.  I am so grateful for all my new cyber friends.  You are all amazing!  

To all of you who are hurting right now, I'm so sorry.  I think it's okay for you to cry out, "Why me God?"  It's okay to be angry.  But I know God is listening and caring and please know that all of us here are also listening and caring.

Barb

[grannyhotwheels]

Wow, emotions,  I'm having so many emotions these days that I'm not sure how I feel.  As most of you know I'm going through a flare-up right now and the biggest emotion I'm fighting now is depression.  I absolutely hate being depressed.  A lot of ya'll know that I'm normally a pretty happy person.  I try not to let things get me down.  I can usually do this by taking one day at a time, one hour at a time, and one minute at a time.

Lately that's been really tough to do.  Most days I'm sitting on my pity potty feeling sorry for myself.  I'm back in this stupid chair, (which by the way I'm thankful to the Lord for providing me an electric one), and I want to get up and walk so bad I can't stand it.  I want to go outside and walk barefooted in the grass. (it's almost 70* today).  I want the pain to go away for just a little while.  I would like for just a little while to not have a cramp, spasm, or needles sticking in my feet (feeling).  

Sometimes I look in the mirror and think, I look like a normal person.  I have my hair fixed nice, I have make-up on, I'm dressed nice, I look like I could stand up and walk.  No wonder why people make nasty comments when I ride on the store scooter.

Another emotion I'm having right now is sadness.  I'm sad all the time.  I have to make myself smile.  When I went to church this morning I made myself join in the conversation.  I wonder if they could tell that I could have care less what we where talking about?

Then there is  anger.  I'm mad at God, my husband, my children, and myself.  I keep asking God why he keeps doing this to me and I can't seem to get an answer.  My husband thinks I should bare through the pain and keep walking with my cane.  If he only knew how sever it is.  My children, because, they seem to have no respect or regard that I'm unable to do things, or if I do something I know I shouldn't, I pay for it dearly with the pain.  We have had the flu being passed around here at my house.  Thankfully not me, but everywhere you look there are tissues on the tables, the floors and the furniture.  I roll around picking them up constantly.  No one can seem to throw their trash away.  Cereal boxes, cracker boxes, cough drop wrappers, diapers, I'm always picking this stuff up.

Last night after everyone went to bed I swept and mopped the kitchen and dinning room floor.  There was tea, cough medicine, food, I'm not sure what all was on that floor but it was disgusting.  They where all still awake and even looked to see what I was doing, but not one of them told me that they would do it the next day or nothing, they just smiled and closed their doors.  It's not east to sweep and mop when your in a wheelchair, but I did it.

Next, anxiety, confusion, terror, and a very thin wire away from totally loosing my mind.  I want to scream at the top of my lungs.  I want to start yelling at everyone in my house about the things that irritate me.  PICK UP YOUR ****, TAKE CARE OF THE BABY, PICK UP YOUR OWN DIRTY CLOTHES, ETC...
I'll hush or I could go on all day.

I think that the only emotion I have left inside me is thankfulness.  I'm so thankful that I have all of you in my life.  I probably would do the above paragraph if I didn't have ya'll to scream at instead. hahaheehee.  Wen I'm with ya'll I laugh, cry, get angry, learn things, and get to meet new and wonderful people.

I love to laugh, as some of you know, and lately this is the only place I get to do that.  There are so many of you that are so witty and remarkably funny.  I have laughed so hard on here that I've cried.  Quix has some of the off key kind of comical remarks so that it is hilarious to read.  The same for several of you,  I don't want to start naming names because I would leave someone out and I don't want to do that.

Thank you Heather for giving me this chance to spill out my emotions.  I'm sorry it's so long and boring but Heather was right, I feel a hundred times better to have gotten that all out in the open.  Even if no one reads this I don't even care.  Just yelling and crying on the puter was good enough for me.

I'll try to keep laughing because it seems to feel the best. haahaaheehee

I'll be praying,
Carol

[essdipity]

I know this thread is about our own emotions, but that's not where I'm going with this. Much of what I've read here is so moving. My heart goes out to everyone, and I do know how fortunate I am in comparison to many.

But Carol, this is just so awful. You put up with an enormous amount physically, every day, and I don't see how you do it. You also have to deal with unbearable things from your family. It isn't my business, I know, so I'll just make this one teensy comment: Why don't you go on strike? From what you've said there are several other able-bodied adults there who can sweep and mop. Let 'em.

The end. Off my soapbox.

Best love,
ess

[pennst8r]

I've been really wanting to post on this phenomenal thread, but am afraid that once I start I won't stop and will cry. I hate to cry. So I keep putting it off another day. Maybe tomorrow...

Love to you all for your bravery, your candor and your awe-inspiring strength.

Penn

[AnyaD]

Hi everyone !!!  I am going to bring some humor. You are all so wonderful but I visit you very seldom, because I get very scared every time I read about all symptoms you experience and I don't YET, but I am sure will in the future. That's not the point. I will remind I was diagnosed based on Lhermitte's and MS like couple of lesions in the brain and spinal cord. My doctor and I are waiting for a second attack. I am so stressed about this whole MS deal that I can call sneezing an attack. I cought myself probably 10 times on stuff like that. Here are some examples:
1. I turned heat on high in the seat of my car and completely forgot about it. Then in 10 minutes my back started burning - my first thought was 2d MS attack !!!
2. My Husband and I were at the airport one day and something started buzzing. I thought my ears were buzzing and I told my Husband I am having an attack. I was about to tell him about my ears and he told me to wait because the whole building was buzzing and he could barely hear me...
3. I spilled soup all over my hand. Next day my hand started to feel sore and the first thought I had was of course an MS attack....

I can continue the list, I now laugh at myself. This MS anxiety caused my Globus sensation. I had this feeling of an apple in my throat for a week, so I ran to see my GP thinking I had a cancer or whatever....He ordered an X-Ray but told it was probably just a body reaction to too much stress....I am so used to stress, that I forgot what it feels like to enjoy something without having this second thought at the same time "You have MS, enjoy while you can". I don't know if I ever forget for a minute about my diagnosis. This is so crazy. Do you ever get used to the idea and just except it? From another hand, I do appreciate people and my Husband especially, much better, I try to spend more time with my kids and I don't take things for granted anymore.....This experience tought me a lot !!! Thanks for a great topic. Take care !!!

[monotreme]

Carol,
  You have the strength of many, Carol.  I admire you.  Your strength could only come from our kind and merciful God.  But I do agree with ess and let the floor get dirty.  The people who are OUT of the chair should be doing the work.

Elaine

[doublevision1]

With the recent discussions of how MS affects our emotions, I thought I would revive this great thread that Heather started last year.

There are a lot of new members in this forum and it would be nice to hear from all of you on this topic.

It would also be interesting to hear how those of you who posted on this thread are doing now.  Some of the members who posted were in limbo at that time, but since then may have been diagnosed.  Others, who were already diagnosed, have been living with MS for another year.  Do you still feel the same as you did a year ago?  How have your emotional responses changed?    Emotionally, are you doing worse, better, or the same?

In re-reading my post, until very recently I had become much less anxious about my health than I was then; was feeling more calm and more upbeat and feeling somewhat well-adjusted to living with a chronic illness.  My treatments were going well, I no longer had any anxiety about self-injection; I felt even more hopeful about all the research on MS that I have read about this past year.  I still feel grateful, and my personal relationships have been strengthened since I stopped being so secretive and let people in on what was going on with my health.

However, due to recent developments, in many ways I feel I am back to square one at the moment, as I await news of my recent blood test for NMO/Devic's disease.  I expect the whole cycle of grief to begin again if in fact it turns out I have been misdiagnosed.  However, I do feel like I'm now stronger emotionally to deal with it, than I was when I was first faced with an MS diagnosis.  I guess we'll see.

~doublevision~

[essdipity]

Rereading this makes me sad. So many of our faithful members posted, but have since sort of faded off the forum. Where are you, my friends?

I MISS you.

Love,
ess

[syndismilez]

Hi!!!!!!
I was a poster on this topic!  I am still in Dx'd. I really haven't pursued it much. I just had a hyterectomy on Wed. It was a partial but took my right ovary. It was done laproscopically!!!  4 little incisions!!!  I had a pretty bad case of endometriosis.
I just had to take a break from neurologist. LOL.  My gyno helped in taking away one more stressor in my life.  
Now I can concentrate on healing, getting back to exercising, eating right and seeing how my symptoms improve or not.
My emotional state had leveled out. I have accepted the chronic illness.
Of course there are days that I lean on my fiancé. But I do good most of the time :)
Cyn

[doni54]

Hi All,

Just want to thank Heather again for this wonderful thread, and thank DVision for bumping it up for us!!

[uk2]

Hi

I find the hardest thing of being ill is the lost of the life you had, you grieve for that life like you do a person and that took me by surprise.

then their's the guilt you feel and as i am a mum with young girls i feel guilty alot that i cant drive them to there clubs anymore, i cant hardley come to watch them in their plays and if i do i come in a wheelchair and i hate the questions the other kids ask them!

i hate i have to have strangers in my house to do all the things i should be doing, and

i hate that my kids never have friends over and no one ask them over either.

I hate i lost friends through this, and i have lost my marriage through this illness and am a single mum i wish i could walk away like he has.

I hate that somedays all i talk about is my meds or how i am feeling, that my friends wont tell me how they are feeling cause they feel sorry for me and dont wont to put there feelings on me but i'm dying to know as i want to talk about other things things that are important to them.

I hate seeing my kids worry about me, and i hate how much responsibility they have to take on.

I hate the way people look at me in the wheelchair,and i hate that that should bother me.

i hate i cant even take my dog for a walk never mind run with her like i used too.

i hate that no body not even my closest friends know how this feels (except you guys and doni my best mate)

i hate i am alone with no family to help me.

But i love the good days, the days i get out in the wheelchair with my kids.

The days i make it to church or an old friend pops round for a cup of tea and a catch up.

I love the fact i have got a new mobilty car coming and i might get my independance back be a mother again go see my friends that will be a great day when i drive again.

I love my faith,the sun (when not to hot) my pets my kids i am still blessed.
I love the new friends i have made on here and the outsideworld because of my illness.

although i have been to the darkest place even considered suicide i came out the other side, and although i face uncertainty everyday i still try to find one thing to make me smile everyday.

I cant say i dont worry of the furtue as i do i worry, i worry this is more then fibro thats why they are retesting for MS that for 2 yrs or more they have missed something and thats why i am disabled now and this is only the start but i also have hope that they did miss something that this time they will find something and there start treatment and i wont get any worse.

everyday is different and sometimes thats good but most of the time that *****!!

I'd loved all your post and cried at some, we are a truely unique family.

sam

[ShadowsSister]

WOW! UNBELIEVABLE ! I just love the way life works... You know I don't even care if this post you started over 1 & 1/2 years ago isn't going be read by any one.
My emotions are all over the place, every time I get on "the fast track" of losing more ground it feels like the "Morning Process" starts over again.. Every one seems to think  I am strong, but I feel like I have been kick to my knees and they aren't holding me up. The past two years have very rough, kind of like being in the middle of a storm that keeps raging & gets worse rather than clearing up.
I am scared, ticked off, I am exhausted because almost as soon as I fall to sleep the spasms get worse, now I even "up-chuck while sleeping which is very dangerous. It happened for the second time Tonight, the first time was Monday morning, plus the battery of test are very difficult because of having to lay on my back which is now broken in three new places as well as having several collapsed vertabrae's.
To be completely HONEST I am ready for the cr#@ to be over. Please don't misunderstand I would never end "IT" myself, not that the thought hasn't been around. I could never put my Children, Grandchildren through that & the rest of the people who share my world.
The other side of these dark feelings are the lights that Shines from the Love &Support that surrounds me. It is said time & time again that Our Lord never gives us more than we can handle but I must admit that I question  it.
I feel like I am not making a whole lot of sense so  I'm going to sign off...Hugs going out to all of you, {{{~!~}}}

[Guitar_grrrl]

Wow!  After lurking and participating for 7 months, now, I know I've seen this thread before.  I'm finally ready to say something.

I tell people I'm done freaking out over my diagnosis, but I still freak out inside, worrying about not playing my guitar (my hands spaz now and then), riding my bike on those long, challenging, mountainous routes ( I stick pretty much to the flats, now).

I worry about losing my strength.

I've suffered depression off and on since I was 10.  Therapy is a blessing, and now, I can cope well, and even though sometimes I have suicidal ideations, I know how to deal with them and extinguish that flame, too. Now I worry about the Interferons, and I've told my neuro about my past depressions.  We'll discuss this more tomorrow.

I'm REALLY angry!  Why me?!?  My husband is still in denial to some degree, and that pi**es me off, too.  He did ask about DMDs the other day during a walk, and I look at this in a positive way.

On the other hand, I'm inspired, too.  The woman who summited Everest last month is a rock star in my mind.  I'm still riding, I'm paddling the Westwater Canyon (Colorado River) in an inflatable kayak in August.  I'm just going to keep on keeping on...

I still haven't had a good cry over this, yet, and I wonder if that makes me weird?
One day at a time.

Love to all,
Guitar_grrrl

[Heather3418]

It's almost bone chilling that this post came forward.  Several hours after I wrote this post about emotions, I learned that the love of my life, for all my years on this earth, died unexpectedly.....my precious daddy.  Don't have to tell you all what my emotions were like on the evening of January 13, 2008.

DJ, I wonder if my Daddy is trying to tell me something?  Maybe he and God are trying to tell me that "I" am the one that is NOT dealing with my emotions.  I haven't taken the proper time to grieve.  Probably because I am so happy that my daddy is in Heaven with my mother.  He was emotionally abused by his second wife.  His death was a release.  Sad for the void it left in my life, but I know that my daddy is still with me in spirit.

I love you girl.  Always,
Heather

[BOK2Bjan]

Hi all - good thing it's hard for me to type - should keep this a reasonable length.  Being both transparent AND introspective, I have no trouble being in touch  w/ my feelings.  It's been a long, tough journey due to multiple diseases combined with an abusive husband.

I've always been the strong one - the one that does everything, handles everything, helps everyone else w/ their problems etc.   No one has been able to think of me any differently, which is partly my fault.  It's a role I'm used to, but also like.  I'll admit to the pain, but not the need for help.  If I say I need help, it's still hard for me to accept it, or sit back and let others do things I feel I "should" do.

I think I've been in partial denial because some of my conditions are terminal, yet I don't seem to truly accept it - and the conditions that are the most serious, people haven't heard of.  People have heard of MS, but not Sceroderma, or pulmonary hypertension etc.  It gets frustrating!  Even family (not much of one left) doesn't understand how sick I am.

One of the hardest things is my kids - they were so young when I was a dynamo - a real physical machine.  They will always remember me as sick.  They view me as strong, but I grieve their not having known me before.  I grieve the loss of that person I still find myself trying to be, as well.  All of my "good" years were spent trying to save a marriage with an evil, abusive man - 27 years!  BUT - that pain brought me back to the Lord, and meant I raised my kids to love Him too. So those weren't the only "good" years.

Adversity has made me a better person - that I  believe strongly.  But sometimes I get so overwhelmed by my pain, and the unbelievably broad scope of my illnesses.  There's not a single organ or system not greatly affected by disease.  Then I hear, "you look good, you must be better!" - but I don't ever get better.  I've lost friends who are willing to help and "be there" for the short term - but when it never ends and I can't reciprocate or be my "old self" they fade away.  I'm no longer asked to lead groups at church, or teach etc.  When I need contact and support the most - I have none.

I've lost faith in many people.  Most are self serving and don't want to focus on others.  Plus, lives are so busy, no one has the margin to help even if they want to.  THAT I believe is a terrible societal shift.  Everyone needs spare time to give to their children, neighbors, and friends, but too often it's not there.  Everyone's working to get bigger homes and more toys - it's a shame because everyone suffers.  There's no one who has the time to help me - even within the church.  They've helped, but it's not often and hard to organize.

Sadness, anger, bitterness, frustration - all are felt when I think of how much I still have to offer.  My mind still works (sort of lol) - it's just my body that's unreliable.  I don't want to be put out to pasture, yet feel I have been to a degree.  I am thankful for this site and all the caring people here.  It would seem it takes having a chronic illness to appreciate its effect.

Well, my hand can't take anymore one finger pecking.  Thanks to those who "listened" - I enjoyed reading everyone else's thoughts as well.

Blessings, Jan

[Ufrustrated2]

frustration, frustration, anger, numbness ...

the sense of betrayal within myself when my self told me for years there was something wrong, that it wasn't a simple matter of needing psych visits like the VA loves to do. then going along with that path.  now i know it isn't me but a disease, at least clinical tests prove that.

the loss of relationships and fun socialness due to withdrawing because i never knew how i was going to feel day to day, week to week. it became so tiring explaining this to friends i finally gave up on it. and with the doctor's not getting to a diagnosis, it made it that much harder.

the VA has been very selective in what they put in the history notes, so when i would go and discuss the issues all they saw were the depression and ct's and very low MRIs that made no mention of demyelinating disease. so i now i know why they looked at me so funny, like "where the heck you coming from". so add another notch of frustration to my belt on that one.

some years back the symptoms got way worse and the frustration shot through the roof. most people just thought i was weak and depressed. how was i to know it was fatigue and such associated with a disease. and of course the VA treated me as a head case. so who in this situation wouldn't withdraw some?

lack of intimacy desires and performance fears due to things there began not to work well some years ago had contributed to my social withdraw. i now have a med for that and it helps. but i never know how my body is going to feel and this effects the mental part or is that the other way around? you folks know what i mean.


i go to support groups, i pray simple prayers for strength and courage, i now take meds once in awhile to help with symptoms, i have maybe two friends that actually believe me. i showed them a few papers and test results so they know i'm not making it up. and they too have had the run-a-around at the VA and civilian doctors.







frustration, frustration, anger, numbness ...

the sense of betrayal within myself when my self told me for years there was something wrong, that it wasn't a simple matter of needing psych visits like the VA loves to do. then, going along with that path and always knowing it was leading nowhere, that i was just being patronized and brushed aside.  now, i know it isn't me but a disease, at least clinical tests prove that.

the loss of relationships and fun socialness due to withdrawing because i never knew how i was going to feel day to day, week to week. it became so tiring explaining this to friends i finally gave up on it. and with the doctor's not getting to a diagnosis, it made it that much harder to deal with.

the VA has been very selective in what they put in the history notes, so when i would go and discuss the issues with a doctor all that doctor saw were the listing for depression, ct's, and very low MRIs that made no mention of demyelinating disease the way they worded it. so, i now i know why they looked at me so funny, like "where the heck are you coming from vet". so add another notch of frustration to my belt on that one.

some years back the symptoms got way worse and the frustration shot through the roof at the sametime. most people just thought i was weak and depressed...at least that is how i took their actions and words towards me.  how was i to know it was fatigue and other such symptoms associated with a disease?  and of course the VA, as usual, treated me as a head case. let me ask, who in this situation wouldn't withdraw socially a bit?

lack of intimacy desires and performance fears due to things began not to work well some years ago had contributed to my social withdraw also. hard to be intimately fun when one doesn't feel well. i now have a med for that and it helps some.  but, i never know how my body is going to feel and this effects the mental part of life or is that the other way around? you folks know what i mean.

i quit drinking 18.9 years ago & still go to support/fellowship groups, i pray simple prayers for strength and courage, i now take meds once in awhile to help with symptoms, and i have maybe two friends that actually believe me. i showed them a few papers and test results so they know i'm not making it up. and they too have had the run-a-around at the VA and civilian doctors so we a bond with that. i email other veterans who have the same uphill battleground and that helps to share each other's story. when your own family doesn't truly believe you, its a bit hard when i think about it. although, i don't blame them. being in "demyelinating disease of the cns" limboland is just too difficult to explain to anyone.

recently, the local neuro suggested i speak with a psych who specialized in neuro-illnesses. he mentioned something about ptsd too. i said i would try that and asked him to suggest one. he couldn't because he didn't know any!! you read that right! LOL  i told him considering the VA and my history with them trying to diagnosis my CNS problem, why would i trust an avg shrink with no experience in demyelinating disease and what that puts a patient through? he said it was a shame i didn't trust the VA. so, another notch in the frustration belt.

some days i'm just lost because i feel so downright fatigued, lack of real sleep, some balance issues, the pain, feeling i'm going nuts, my nervous system being out of sync, etc., and then out of the blue i feel like a 20yo kid full of life. but i know it won't last but i try to do something fun on those days.

i'm going to start some part time work soon. after leaving an analyst job in norcal two years ago, scores of resumes and interviews here, just getting to say "i'm going to work" will help my psych out a bit. i think i blew some of those interviews due my lack of energy, losing a word in mid-sentence and trying to keep up. like i said, i can't plan which days i'll have an interview and with temps here getting over 110 in the Summer, a 3-piece suit, well, is it any wonder i look fatigued? LOL

i seem to just be rambling now but it is so much easier to write than to speak and this is good for me to just jot some feelings down here.

i'm going to put in some effort to do a little upper body workout this AM, then get a buddy and go to my townhome i'm remodeling and hang some closet racks. i'll start moving in this week. this demyelinating disease merry-go-round i've been on over the years hasn't killed my spirit but i admit it has knocked me down many  times. luckily i've been able to get back up into the fight, try to see this through, and on my good days/nights, still have some good fun.

[Guitar_grrrl]

I finally had a good cry after I talked to the Rebif folks, and again with my husband, yesterday.  I guess the grieving and uncertainty are finally hitting me.  I feel better, now, and I still plan on living life to the fullest.

Jan, I'm so sorry to hear of your dad's passing.  Big hugs...

UF2, as frustrating as the VA is, don't forget to live.  My brother has a lament - "There's too much life getting in the way of living!"  So, 18 yrs C&S, he's living, darnit!  Good luck with your remodel, don't let the b**tards get you down, but keep being the squeaky wheel, too!

Hugs to All,
Guitar_grrrl

[Quixotic1]

You honor us all by letting us see into your deepest selves.  Thank you for that.  There is no way you all will ever know how many other people you reach by putting your words down.  We have 200 or so active members, but another 1000 have joined the forum and uncounted 100's lurk, listen, and are helped by knowing they aren't alone.

DJ - Thank you for being honest about how you feel.  It is a sign of deep respect to show us that honesty.  Knowing you are in our midst gives me great joy.  I have been low and wished that the end would somehow arrive - mainly from depression not pain - and told our friends hear about it.  I felt that it was hypocritical to have people tell me I was strong.  I will now tell you what they told me:  You are strong because you are still here.  You still reach out and touch others' hearts.  The fact that you feel beaten down and tell us about is a strength more enduring than uttering optimistic phrases.  Thank you for accepting our love and efforts to support.

Jan - I, too, gave my best years to an abusive husband.   Thanks to you, too for telling us about the other things that really are more terminal for you, and I hope that you can find a way to share that with your family.  They deserve to know and you deserve to have that invisible elephant out of your living room.  You have been a wonderful friend here and thank you for showing us the respect of saying real things.  You, too, are strong, but need to learn to accept help and to ask for it, telling your people why you really need it.  Thanks for being here for us.

U2 - All of the things you suffer from are, indeedm valid and understandable.  Yes, being told that you are a head case would cause anyone to withdraw.  Knowing that you are being stonewalled would make anyone angry and frustrated.  I have seen your strength from the first times you posted here.  You're still you and through all of this have maintained your integrity and sobriety.  I'm proud that you are my friend.  Good luck with the remodel, the summer and your exercise.  You are strong because you are still here.

GGrrl - You also have been a delight and a source of great support here.  You have enriched us all by joining in, sharing, and asking.  For every question asked by one, hundreds may see and revel in an answer.  I know the ache of seeing the ability to do what I love disappear.  I pray that your guitar-playing years stretch on for a long time.

Heather - I don't tell you often enough the depth that you offer to this forum.  You remain a pivotal player in the family of souls struggling to make it through.  This thread, which I just reread, is just another of the 100's of things that you have done for the people here out of love and the knowledge of what a group like this can be.

My emotions have leveled out after 10 years.  I live vicariously through all of you.  So I am angry, scared, frustrated, and wistful.  When external things come up (like my remodel) and I drift away from being here everyday, I begin to feel hollow and useless.  Those are the feelings that have permeated my life since I left practice.  You keep me filled with purpose and give form to who I am and can be.

I thank you all.

Quix

[HVAC]

Humor keeps me alive. Otherwise I would just give up.

Alex

[Janette2836]

DENIAL!  That is what I try to do most of the time.  I try to keep so busy that I do not think about what my body is doing.  For some reason it does not decide to just go away though  :)

Anger & lonliness - for a time my family treated me like the doctors do - like nothing is wrong.  Hubby was getting frustrated & thought I was just being lazy.  NOW He has read up lots & even keeps up with what is happening on this site!  It is hard hearing the kids talk about me at times.  My youngest child shared with his teacher that one of mommie's favorite things to do is NAP!  That is sure not how I want my kids to see me.

Encouraged - I read many of your stories of how you have coped & what you are going thru & it brightens my day.  So many strong & courageous people on this site it is amazing.

Hugs to all

Janette

[mxspdracer]

Ten years ago, I couldn't walk because I suffered a severe MS attack that left me half paralyzed. I spent six months in recovery and therapy just to regain the ability to do everyday things like write with a pen or use a spoon to eat, I spent another year working hard to regain my mobility by practicing yoga and acupuncture.

While I was recovering, I vowed to change my life. I adopted a healthy lifestyle and diet along with a strong will to overcome this disease. I decided that when I regained my ability to walk again, I was going to spend every day living my life to the fullest.

There are inspiring stories you can view at http://www.iwalkbecause.org.  I get particularly inspired by Lea's stories.  If you or anyone you know have great stories to share that can inspire us, I understand they're collecting more for next year.

mxspdracer
"Life shrinks or expands in proportion to one's own courage." Anais Nin