WHAT MS EATS

[spitfire989]

Hi guys, I guess I'm posting this as my version of venting. I have been somewhat in limbo land for awhile, even though my primary/neuro, etcc have said the "likelihood" of me having MS is 95%( were just waiting for the last confirmation test), what REALLY gets me with all this is What MS "eats" from you.---For me not only has it eaten away at my body, (the pain, the numbness,the dizziness, the wobbly legs,the crushing headaches, the vision issues, the nausea, the taste of metal or blood all the time,in my mouth, just on and on) but it has eaten away at my personality. And that is what bothers me the most!---I "used" to be someone that had a wild sense of humor.  I was the type of person that could get a room full of people laughing their ***** off over a mud puddle! ---I found humor in just about everything.  But, now, I see and know that due to this "devil disease", I find myself with little or no sense of humor! And as I said that bothers me!----Does anyone else feel that this "devil" has taken from them what they used to be? Other  then the physical?----And more importantly---HOW DO YOU GET THAT BACK?-----I don't normally "enlighten" people to my inner feelings, and because I don't really have a "support system" outside of this forum for my feelings, questions, whatever,  I have decided to post this---to see if others are going through the same thing.   So, hopefully someone out there can give me some "tippers" about how to get back what MS has taken from us, and/or if they too have the same issue.----THANK YOU for letting me vent here, guys.   IT MEANS ALOT TO ME.

[spitfire989]

THANK YOU SOOOO MUCH GUYS FOR THE SUPPORT!!!! I NEEDED IT.----Yes, I HATE ALL THAT HAS HAPPENED.  And I try EVERYDAY  to be strong for my daughter's and my grand baby (who's pic is my profile pic).  I look at her, and say "That's what gramma's fightin for!)  She's 9 months old now, and I think God brought her into my life to be my Rocl of Gabralter if you will.  He does work in weird ways.----Post note----I got the call to go for the dreaded Lp next Tuesday.---Pray all goes well!----AGAIN THANK YOU FROM THE BOTTOM OF MY HEART FOR ALL THE SUPPORT!!!!!

[Tahiri_Veila]

I too am in limboland and a lot has changed for me, but I think that no matter what road our lives take us down our normal personality is always changing.  Yes it does depend on our experiences and how we face them, but not just MS causes this.  Growing up changes your personality.  A big thing for me was finally not bottling feelings up that I had done for 19 years.  After sharing my feeling my whole life changed, and I contribute that to my husband.  I am a completely different person since he entered my life.  I have also found that yes my MS like symptoms have changed me, but so has having a child and my work.  

I understand that it is hard to see yourself change in ways you don't want to, but sometimes that change is just passing and other times it is not.  I think that you will pull through this.  Always look to the silver lining even though believe me that can be really hard.  I find being positive, or at least trying to be, makes it to where most changes aren't for the worse in my opinion.  

I hope you and your son can communicate and work through this time.  I hope you can draw support from each other, because chances are this experience has changed you and you will never be exactly the same as you were.  I don't mean to offend anyone by that, it is just what happens.
Know you have lots of love here and from your family.
Tahiri

[goofysmom1]

I too understand how you feel.  I find it difficult to talk to family & friends about what I am going through.  I have always been something of a "homebody", but am even more so now that I am dealing with all of my health issues.  I find myself not wanting to make  firm plans with people because I don't know how I will be feeling and I hate cancelling at the last minute.  

I am thankful that I have found this forum & all of the wonderful people whom I have met so far.  Having a group who understands and knowing that the support needed is just a few clicks away is extremely comforting to me.

I haven't posted much - I want to, but I struggle with not being able to contribute anything other than my own experiences and my lack of diagnosis...

I don't have an answer for you about how to get back what MS has taken from you - all I know is that if I am feeling beaten by whatever is wrong with me, I can log on here & read some thoughtful, supportive and caring post by one of the many wonderful members here and I will feel better...and not so alone in my misery.

Take care,
Chrisy

[doni54]

Spitfire,

I'm there with you, sweetheart!!! Though I'm probably a long way from any dx.

I used to constantly pull tricks on my family and always had them laughing.  I was a happy and outgoing person.  

All my children's friend's wanted to come to our house and when we had to go on trips...band...basketball....all the kids fought to go with my husband and I and even kids who had their own parents going would say.....I wanta go with Mamma D!!!!

I just hate the look on my hubby's face when he will ask if I want to do something and I just say NO.  We were always doing something, even if it was just riding around in the country for no good reason, window shopping, trade days, antigue shops, etc.  

I told him the other day that I was turning into a recluse, and that is not anywhere near the person I used to be.

Music is another thing that brightened my life, now most days it just gets on my nerves, which is a great lost for me.  About the only thing I can listen to is my meditation tape of ocean waves and sometime it evens grates on my nerves.

I agree with Lulu about the need for psychological assistance for these chronic and life changing diseases.

At least all of us here have each other, I give thanks everyday for being fortunate enough to find this forum and have a place to share my thoughts and feelings and make friends for life.

doni

[Lulu54]

Spitfire,
I had already gone through this change of defining my new normal once this year when I had my heart attack.  It makes you stop and take stock of who you are and where you are going, along with the physical changes. So many things I had to give up or dramatically change that is was almost like becoming a new person.

I had done a pretty good job of grieving the old me and moving on (or at least I thought so) and then 7 months later I get smacked with the idea of MS.  Now the big problem with MS is I can't figure out where I'm going with this.  I can exercise more and inject myself regularly with my DMD, but who am I going to be tomorrow and the next day and how am I going to feel?  Will I come through this relatively unscathed or am I going to have to redefine my life even further?    

We have been discussing anxiety and stress quite a bit around here lately, and the point I made in one of those posts I will repeat here - psychological assistance with these major diseases should be as much a part of the treatment as any other component such as drugs and physical therapy.  Perahps we could retain more of our old personalities with help.

My best, Lulu

[Sailorsong]

Actually in my case it has given me things that weren't there before. Before I got ill I was a very serious person, never let my feelings show, and rarely laughed at anything. But since this hit me I have become very open about my feelings ( I cry with almost any movie I see). Find almost everything funny (at least when it comes to things I do ). Started writing songs and composing music (even though I have never taken a lesson in my life), And also became a minister and am studying all of the major religions.

I think that maybe because of MS the side of my brain that was in charge switched. Logic use to rule my brain and now emotions do.  I still can use logic to a great extent, but the emotions make it a chore in order to do this.

Dennis

[Cosmobirdy]

I know exactly what you mean.  I was the same kind of person as you, loved to laugh, twisted sense of humor.  In the year since my symptoms started, I have changed alot in that area.  I don't laugh as much, or even want to interact with people as much.  Just don't have it in me... :)  

In fact, I was talking to my son a few weeks ago when he was home from college.  He finally let out some of his emotions, and thru his tears he told me that is the hardest thing for him about all this - to see the toll it has taken on me....to see how many ways I have changed.  The physical things of course, but he is bothered even more by seeing how I don't laugh as much anymore (I used to wear waterproof mascara every day, because I would laugh till I cried so often, lol.)...how I don't have much energy most of the time....the cognitive changes.  I told him I miss who I used to be as well...but I am starting to make peace with the fact that this is the new normal, and I am just trying to adapt and adjust.  The hope is that Tysabri will help bring back some of the "old me", but the fact is that it may not.  

I wish I had an answer to how you get that person back.... If you find out, let me know, too, lol.  I just wanted you to know you aren't alone.... :)  I am struggling as well...all I can say is hang in there.  The good news is that we have the awesome people here as a support system...

Rita