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when you were first diagnosed

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Posted 1/13/2009 9:13 PM (GMT 0)

Did any of you , when you were first diagnosed and learning what your body was actually doing, think that you were on a sinking ship and there was no one to throw you a life preserver?  I will go a day or two and think, I feel semi ok today, I can work and do all the stuff I usually do.  Then you wake up and holly heck, it hurts to walk, where did the strength in my legs go, my head is vibrating and I just want to cry because it will never get better.  That lasts about 4 days, then you are semi ok again and that day is a little easier....my confidence is back up.  This I can do.  THEN.....slammmmmmm  down in the dumps again.  Please tell me I am not the only one this happens to.  I feel like I am on an island and everyday is an adventure, just not an adventure anyone cares to be on.  I am at the point where I am having a reality check on what this disease means to every day life.  I can't even comprehend the future.  I am assuming it is all a part of the process of MS.  Thanks for letting me vent. 

Cindy

Posted 1/13/2009 9:48 PM (GMT 0)
Cindy,
You are not alone. I feel that way almost everyday. I just try to make the most of it and do only what I can do, and before you know it, the day comes to an end! Take care my friend and God Bless you. Maybe someday we will win this battle with this disease and I want to be here when it happens, don't you?
Posted 1/13/2009 9:56 PM (GMT 0)

Hi Chuck,

Thanks for the kind words.  I hope we are both there to see the day of a cure.  Thanks again and have a great evening.

Cindy

Posted 1/13/2009 10:18 PM (GMT 0)
Wednesday p.m.

 

Hello Cindy:

 

For me, first syptoms began to appear at Christmas time in 1986.  My freiends and I used to go up north in MI, where I live, to go skiing.

But....I began to experience some unusual symtoms.  Slightly blurred vision, slight lack of balance....not very good things to be with to go skiing.

So.....I did not go....and went to see my primary care doc....on Christmas eve....he checked me out....and as I worked retail back in those days...he suggested I wait til after holidays...and symtoms did go away....heck, I even went to CO to go skiing in February.

But....symtoms came back in May.  He sent me to see Ear,Nose and Throat, who ran some tests...and sent me to Neuro.

Who also ran some tests, and on June 21, 1987 told me my problem was that I had Multiple Sclerosis.

darn.

But...I am blessed....the following September my sweetheart married me....and  I have the most amazing immediate family who is always there for me.

While  I was crapped on by this MS thing, my support  group is very strong.

 

Cursed and blessed at same time....John

 

But, yes, on  somedays though, it really gets to me....

 

 

 

 

 

 

 
Posted 1/13/2009 11:06 PM (GMT 0)
Hey Cindy

Hang in there friend. Chuck is right...the days roll on and the bad passes on. Sometimes our days are really bad and sometimes they are better. The thing is, no one really knows how bad the bad is unless they've been there. We are with u friend. U will get thru this and u will be better.
Posted 1/13/2009 11:20 PM (GMT 0)

Thanks to everyone.  It does help to know there are other people out there that know what I am feeling and talking about.  This forum has been a wonderful thing for me.  Thanks again.

Cindy

Posted 1/19/2009 5:38 PM (GMT 0)
Cindy,
You're not alone my friend. Hang in there as we care about you and love you. It will take people like us to fight this monster and help find a cure so others don't have to! God Bless you.
Posted 1/20/2009 3:29 AM (GMT 0)
Yes...we have all experienced what you are feeling! It feels very defeating. What I have learned is this: pace yourself and don't use all of your energy just because you have it. Your body needs energy to heal too, so save some for yourself.

stay positive!
Andrea
Posted 1/20/2009 1:19 PM (GMT 0)

Thanks Andrea,

I appreciate everyones input and kind words.  Have a great week.  I hope it's warm where you are.

Cindy

Posted 1/25/2009 7:35 PM (GMT 0)
Hi Cindy! I can completely understand what you are going through! This is my 4th good day in over a month-not sure today's gonna stay good actually but stayin' positive! I have been housebound except for Dr's visits (probably should have stayed home from a couple of those too)! LOL A couple of coping methods I use are to really, really enjoy the good days, I'm almost euphoric I feel better and want to do everything and there's so much that's been neglected! Don't overwhelm yourself-do 1 thing that HAS to get done, then you need to do something for yourself that you completely enjoy and miss doing when you are so fatigued and unable to. For me it's playing my guitar, I'm learning and love it! Also enjoy that drunk feeling! I do! Just don't like the hungover feelings so often present! Also don't forget to laugh at yourself-I slid off the couch the other day because I felt good and thought I could just jump up without thinking about it-body said nuhuh-I sat on the floor cracking up, the animals thought I was crazy-perhaps I am heee-hee!Anyway I hope this inspires you to get through the bad days! Thinking of you! HUGS!
Posted 1/29/2009 3:32 AM (GMT 0)
Oh Cindy. I hear you on FM! This disease is a flipping roller coaster. Some days I feel just fine and other days staying upright is just asking too much. And it's so easy to feel alone...because we're surrounded by "normal" people who don't get why we feel like butt today when yesterday we were just fine. It's incredibly frustrating and it's easy to feel alienated.

The key, at least for me, is keeping a positive attitude and having a good support system. The folks here are amazing and I'm so appreciative of everyone's openness. It helps to have people to relate with. And hopefully you have positive, supportive people in your life that you can surround yourself with.

Also, take time for YOU. Take some time to bring a little happiness and laughter into your life each day. It's hard to feel like smiling some days. Believe me, I know! But keeping the spirits up is the best therapy.

Take care and best wishes!

~Niki
Posted 1/29/2009 1:08 PM (GMT 0)

Thanks Niki,

I appreciate the kind words.  It is everything to know we are not alone and that this site provides exchange between others that understand.

Have a good rest of the week and weekend

Cindy

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