HOW DO YOU STAY BEING THAT PERSON EVERYONE KNOWS. WHEN YOU CANT BE ANY MORE.

[ice_in_the_vein]

DONT KNOW WHY I AM TYPING HERE. I GUESS NOT MANY PEOPLE WILL READ IT BUT IT WILL BE OUT OF MY MIND.... HOW DO YOU STAY BEING THAT PERSON EVERYONE KNOWS. WHEN YOU CANT BE ANY MORE....I HATE TO SAY IT BUT IT ALSO ***** TO BE SICK WHEN NO ONE CAN

[Fluffysmom]

Welcome; I hope you find some of what you're looking for here.  This forum has helped me weather some awful changes in my life, and I don't have a diagnosis yet.

I used to climb mountains, hike, spend time on the elliptical and weight machines as well as some lighter free weights nearly every day while in the city.  When I'd go on vacation, I'd scope out the nearest gym that I'm a member of.

Knee surgeries and a herniated disc or two slowed me down, but I still walked a lot and found water aerobics; loved it, often would go up to six days a week.  Then a really bad lumbar herniation slowed me more, though I still kept trying.

About a year and a half ago, I woke up with tremors, then mind-numbing fatigue, dizziness, lack of balance, and more.  My brain MRI showed lots of lesions, though not in classic  MS distribution.  I've been to two general neuros and and MS specialist, who all stopped at thinking I have small vessel ischemic disease, which I have no risk factors for; my cardiologist backed me up on that.

I've gained weight, which I totally despise.  I have burning nerve pain in my right leg from the waist down that's been really bad for over a week.

Um, past the depressing part; I've had plenty of time to think, to plan, to organize my medical records.  I'm preparing to see a new MS specialist, as my 3T MRIs that the last one ordered show things more clearly, and hope to move forward.

I have a friend who is totally behind me; she even lets me stay in her spare room, drives me around when I just can't because of fatigue or dizziness.  Best of all, she takes me along on business trips, so I've been travelling and seeing parts of the country that I haven't imagined I ever would.  Not to mention totally fun trips; she owns timeshares, so I've been to Maui and other fun places.

I find that I'm still me, but I'm adapting to life as it changes.  I think everyone must, no matter what their situation is.

I hope you can find ways to make your life more enjoyable.  

Take care,

Kathy

[ErinZoe23]

Hey! I read your ? on how you stay the same person you were before ....Well my answer is you don't. You learn, you grow, you fall, you cry, and much more. My thoughts would be once you go through all the feelings of accepting this disease look at all the positive attributes that come from ...remember without pain or struggling noone would ever see there trueselves for its only then when people can see what they are truly made of and what kind of person they truly are.

Me I'm a stubborned little girl and still do everything i did before just with a better heart and more awereness of my body. For instance...

I still layout for like 3 hours...but i just keep a hose near by to drench myself so I don;t feel the sun at all or lay on a raft so i can just jump in the pool when i'm getting hott

I still go out on the boat all morning and afternnoon ...and agin i just jump in the river when im hottlol and bring alot of water

I play basketball for about 3 hours...when im feeling really dizzy i just sit out bymyself for a lilbit and if i start to feel the pain coming back well for me i dont care much about pain high tolerance i guess so i just push through that

When im really fatigued...I REST or if i'm with friends i just tell them i'm tired as hell so lets just chill out today or day somthing easy until i ge tmy energy back lol

My personality changed for the better im stronger more determinend . more loving, more caring, more understang, more angry , even more stubborned lol

I only been diagnosed in july and no i have a long way to go but im still shooting to be a wildlife biologist and I WILL work in the field and I WILL be able to do it and all the pain and suffereing im going to experience i think will just make me stronger and will show me more of the real me

So that is my answer you are going to change, things will be different but its just up to you on how you or someone you know wants to live with this disease.

Good Luck and wish you the best,
                              Erin

[Lulu54]

And yes, it sure does help the brain to be quiet and find peace when we can get those thoughts down on paper (or onto the screen) to be shared with others.

[Lulu54]

Hi Ice and Autumnmoon, Welcome to the ms forum here at medhelp.  I hope you will find some of the answers you are looking for here in this community.  This is a group of wonderfully compassionate people who will go out of there way to provide answers or listen with an open mind.

The frustrations of this disease are many - I don't know what stage of MS you are dealing with, but would like to point out that having a dx of MS is not the end of everything as you know it.  There is an MS patient who just summited Mt Everest - quite the impressive feat for anyone.

I hope you will come back often and share more with us - questions, thoughts, rants are all welcome.

be well,
Lulu

[ice_in_the_vein]

from the wife of iceinthevein -- the issue for him is that his life reflected a very physical, outdoorsy life as a marathon/weight lifter. his personality is what will allow him to make it through this, but with an inability to sleep most nights, he reflects upon the things that he can do no more. he wants to be outside, but tends to make choices about this in the less beneficial way ---- better said he has yet to make the adaptations to his disease which would enable him better outcomes, but first, as we all know, acceptance is required. i am so HAPPY to know that there are people out there available to speak and listen. I know that together we will be the best people that we can be! God Bless each and every one of us.

Lucy (autumnmoon)

[Mand125]

Hi there and welcome.

You would probably be surprised how many people read this and care about you.

Your kids will understand your problems, kids are resiliant and accept a lot more than we sometimes give them credit.

Even though you think you can't be the person you used to be, that may be true as far as what you are physically capable of but inside you are still the same person.

Hang in there
Mand

[diemyn]

You don't have to keep trying for other people's sake. Tell them that even though you have changed a lot your feelings for them are not gone. It'll be so hard on you to adapt to all these changes in yourself and you life if you don't let go of what was. The new you is no less worthy of love or respect; remember that.

Love and light to you, dear one

<3

[supermum_ms]

Hi There,

I'm not sure what you asking for, if your wanting to know how someone can stay true to them selves and live a good life, one which is both productive and rewarding then that depends a lot on how your being affected and your personality. For me, if my (expected) dx of MS happens this year, i will of had MS for around 20 years. Symptoms first started just after my first child was born (now 23), lots of weird things never explained but when your a mum you just have to get on with it sometimes, other people take priorety. Still i've had to adapt over the last 6 years to the changes in mobility and fatigue etc. but i am the same person i have always been and expect who I always will be.

I will always be a person who questions and does the unexpected, thats who i am, to me anything is possible, i make the choice to enjoy the life and responsibilities i've been given, i'll change what I can and accept what i cant, i know no other way to be. This is one more puzzle to solve in this game of life we are playing, i've worked on many puzzles this is just one more i'm working on.

Cheers.........JJ

[ShadowsSister]

I am not sure what you are trying to say, it would be helpful if maybe you could try to be a bit clearer.

This is a great support group and I just wanted to let you know some one out here is listening to you..

Feel better and never give up being yourself...

{{{{~!~}}}} hugs on the winds from ShadowsSister