Multiple Sclerosis Community
Can you have a 'normal' life with MS?? Does it ALWAYS have a ...
About This Community:

Our Patient-to-Patient MS Forum is where you can communicate with other people who share your interest in Multiple Sclerosis. This forum is not monitored by medical professionals.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Can you have a 'normal' life with MS?? Does it ALWAYS have a 'bad ending'??

I think part of my reason for freaking out about a possible dx is the fact that I will never live a 'normal' life again if I have MS.............no driving, no going to a regular job, no playing with my  kids, no going to fun activities..........nothing but sitting inside my house, isolated, with PAIN and gradually being able to do nothing for myself.   Right now?  I do ALL of those things, have no disability whatsoever (only pain!),and have been dealing with this for 13 years.    If and when I finally do get dx, the damage could have reached the point of 'no return' since I've been on no drugs while whatever this is has been doing it's thing.     Are my fears unfounded??? Do those with MS have a 'normal' life?  Does it necessarily mean that just because one has MS, he/she will wind up inevitably disabled and unable to take care of oneself?? Perhaps I am just visualing the 'worst case scenario' as the 'typical reality'.   Any thoughts???

Mocha
Related Discussions
10 Comments Post a Comment
Blank
486038_tn?1300066967
ahhh, mocha. First off, hang in there. You are seriously freaking out on us. Each person has their own road to travel with their disease. But I can tell you that life is what you make of it. I've learned that. You can't simply say "the day I learn that I have MS I will stop doing all these things"........... why should you? And you also can't freak out and think that once you are diagnosed you will simply sit in your house. Now, I understand that a few of us here on the forum are in our house due to disability, but we aren't isolated... we have the forum!!! You have to do as much as you possibly can, and then a bit more to enjoy life to the fullest.

Try not to worry about the future. And yes, there are those worst case scenarios like you are mentioning and if that happens you know we will be there for you, as will your family and you will be able to find adaptive aids to help you and you will always be able to do things with your kids no matter how bad it gets, even though you may have to change how and what you do. For me, when I had trouble walking I got AFO's so that i could get around, and got an automatic car so I could drive.

Someone once told me "You have this disease, it does NOT have you" and that has really made a difference for me. If I have a problem or a symptom is getting in the way of daily life, I try to figure out what I can do immediatly to make so I can go on living with laughter,

Normal is all what you make of it I've found. Yes, I've read on here that some people with Diagnosed MS do have a normal life (driving, walking, working etc), and other's don't but at the same time your sense of "normal" changes to reality and you HAVE to go on living, looking for laughter.

I'm SURE that many other's will chime in. I will msg a few of my friends to see if they can give you a few words of wisdom as well.
~Sunnytoday~
Blank
627818_tn?1271780626
Hi Mochamom! Actually it is a small percentage of people with MS who end up in a wheelchair. Many, many people lead perfectly normal lives. I am one of them. Granted, my symptoms have all been pretty benign, but I know there are plenty of others out there also who have MS and no one would ever know. There are also pain clinics which can help you deal with the pain. The MS drugs don't cure it, but only help keep the symptoms at bay and help prevent them from getting worse. Even though my symptoms are mild I do take the shots. Take heart! I think we all probably were scared at first - I know I was! I hope you can find a decent neurologist who will get to the bottom of your pain. Keep trying! You have to be proactive in this - you are your own best advocate! Best wishes! GrannyJo (see? I had 3 kids and 6 grandkids - how normal is that?!)
Blank
Avatar_f_tn
This is absolutely the worst case scenario. Look up the statistics on MS. The vast majority do not wind up in wheelchairs, and most of those who do are not helpless and miserable.

Why do you take such a black or white attitude? The older I get the more I am convinced that life consists of infinite shades of gray. And I believe that the shade of gray we get is largely determined by ourselves and our thinking. The huge majority of what we worry about never happens. Even if it does, eventually, we have wasted time that could have been enjoyed. None of us knows what life will bring or how long we will live. We do know that life has an end. So why not make the best of what we do have, which is NOW. There's a lot of living to be done, and a lot of ife to be appreciated.

I'm sorry if I'm coming across as harsh. I don't, usually, or at least I don't think so. But I've just been reading a very long journal and comments about suicide and how it affects others. Now THERE's difficulty and sorrow. MS is simply a problem. Sometimes a very painful problem and often unpleasant, but it isn't the end of the world. It all depends on your attitude.

In no way would I want to imply that I have some kind of angelic disposition. Far from it. In fact, I choose this attitude because it feels a lot better than choosing to be miserable, so in that sense it's selfish. I like feeling good.

And yes, allowing for a bit here and a bit there, I live a normal life.

ess

Blank
Avatar_f_tn
Hi Mocha,

I'm sorry that your worry about MS has gotten you so upset.  I agree with GrannyJo, Sunny and Ess.

You can't dwell on the worse aspects of MS, but be determined to make the best of it and continue to enjoy your life, even though you may have to adjust to the changes your health will dictate.  It is by no means a reason to give up being who you are.

I know how the pain can be so bad that you can't think of anything else, I live with extreme pain daily too.  Like you, sometimes I would rate it a 15 on a scale of 1-10!!  I pray that you can find a pain clinic or talk to your neuro about this and find something to help lessen this for you.

Is there anyone you could talk to about this?  You just seem to sound worse with every post, and I'm worried about you.  It really helps to come here and let us support you, but sometime you might need to talk to someone face to face.  Maybe a therapist or counselor could help put this all in perspective for you.

Please try to find someone to talk to and continue to post and let us know how you feel.  I know it helps to pour out what you are feeling, and get others feed back.  You are not alone, we are here for you!!

Take care of yourself and do something that you love to do, and try to give the worrying a break.  I've learned that worrying doesn't change the situation, it just makes you feel worse.

You are in my thoughts and prayers, and I hope you can feel better soon.

Hugs,
doni
Blank
611606_tn?1315521367
Hey there, you don't know me, but that could change with time if you want it too.
Let's see if you can answer this question.. Just what is this so called "Normal Life?.
I have lived a full and beautiful life since I received my DX Jan.29,1986 at 3:15 in the afternoon. I had no idea what MS was, but I knew it was going to change a few things in my life. My life by the way has Never been "Normal", nor would I want it to be, sounds rather boring ..I don't consider myself unique'or special, I am no different from any one else in our group.
I am not making light of your post, in fact just the opposite I am concerned about you. You sure have painted a very dark future for yourself, and your family, I have no idea of why?
By the end of 1986 I was in a wheel chair, Had a trachea tube, lost my career and my husband left me... Since than I want back to college, learned how to paint in oils and water colors, took two photography classes, wrote a book of poems, had my 1St GrandDaughter I already had a Grandson. I watched my daughters get Married, Son was already married. , have babies, to date I now have 16 GrandChildren. Saw my two youngest girls graduate from high school I am still able to give all those I care about a hug and a smile with little or no effort, My ability to give love has continued o grow.
I had to stop painting, huge loss, no longer able to develope my own film, but I still play with my photos on my computer.I am no longer able to do count cross stich, or fly a plane, Oh, I Never could fly a plane. HELLO!!!
I don't think I live a worthless life, it happens to be full of people I love and care about. Yes, Of course my body is always going through changes and there are times when I not sure I am ready for what might lie ahead of me. But than no one knows what is going to happen tomorrow, DO They?. I don't pay too much attention to what I can't do, but give that attention to the things I can do. I still live on my own with my wonderful, funny lovable Kitty Shadow who will be Three in May
I drove my car using hand controls until 1995 when due to my morphine pump thought others would be safer if I sold my car. Was this a "Big Deal"? you Bet It was, but I have an electric chair which gets all around my neighborhood and to my Dr. appointments. I had to have a suberpubic Cathe put in in 1999, Hey, it is what it is..At least I don'thave to worry that a spasm will push it out while I tooling down the street.
You can read all of my journals and postings if you want to, not just mine but read others in our support group too. We happen to have the Best, most loving, funniest, Support Groups around.
Here's another question for you to think about. Is this the attitude you want to show your children? Is this how you want them to see their Mommy the woman they most look up to. I don't believe it is, but I guess I could be wrong. Your Husband and /or life's partner will take their clues from you as to how to react to changes that MIGHT occur. I sure would hate to see you lock yourself into the "Bleak and Dark place you seem to think is your future if you happen to have MS. No ones life is a bed of roses, without thorns, every one has things in their lives they wish weren't there..  
My Faith gets me through the dark moments, we all have them. Our Heavenly Father NEVER gives us more than we can handle, especially if you turn to Him. I am not suggesting you have to be of the same Faith, I am just telling you how I do it.I only speak for myself, For me, my Faith continues to grow ( Thank Goodness), with each day that passes. I see every single day as a special gift, none of us know when our life here on Earth Will come to an end. I have decided to make the most out of each day, and some days that just means I opened my eyes. , I am not kidding.
If I wake up, it's already a good day no matter how painful it might be.
So Mocha I hope as time goes by we will have a chance to get to know each other and eve become friends. Either way, I know that Myself and the others will be here for you, all you hav to do is decide to show up.
I will keep you and your love ones in my daily prayers and I will send you daily hugs on the winds, so whenever you see the wind or feel a gentle breeze blow by you, know that you just received another one of my Hugs{{{{~!~}}}}
Please take care of yourself, your family needs you no matter what!!!  
Blank
751951_tn?1299202836
I'll volunteer to try to help you through this.  I'm not a licensed therapist, but I have a significant amount of training and experience in pastoral counseling.  Send me a private message if you would like to talk more about this.
Blank
230948_tn?1235847929
I posted eariler today about the a good day i had, i was not running like i used with my kids or out for hours with them, i was simply enjoying a day out after a 5 week flare in my wheelchair with my 3 children just being blessed in that i was out of the house sun on my face watching them play entering conversation laughing, sometimes an illness can be a blessing why??? cause you enjoy the moments that you used to take for granted, there are many different types of people in different levels of disabilities with this disorder or like me with fibro ( though i am being re tested for MS again) that still enjoy there life i went to church today on my sticks with my family, i've just ordered a car thats adapted so i can carry on driving. Life does not stop even in the bad times you learn to read or come on here or just watch a good DVD etc.

Yes there is the grieving time of your life but that happens when you are registered disabled and you cant run 5 miles a day like i used to work 30 hrs a week as a carer or do those things not before they have happened thats not good for you as anybody life could change like that in a sec, so just cause you get a DX of something does not mean your life ends. My friend has MS and has had it for 20 years and only had 7 bad spells she is fitter then me and still runs everyweek, so its not a death sentance.

Life is what you make it and i have my tough weeks and mths i get depressed sure but then i burst with joy in the good times.

Have faith and focus on what you can do not what you cant do or not be able to do your not even at that stage yet.

But i understand the stages you will go to and we haveall been in those dark places at different times of our illness and we areall here for you.

sam
Blank
572651_tn?1333939396
Hi Mocha,
You are pondering lots of unknowns right now and the fear, concern and dread are all a normal part of this process.  May I recommend that you take that time spent pondering and begin learning as much as you can about MS?  

Each one of us here is different in our symptoms and our lives, but the bottom line is we are here, taking each day as it comes, and sharing those times (good and bad ones) with our forum members as well as our family.

What is normal is constantly evolving in our lives.  I had a heart attack last year and the best wisdom I received from other women heart patients is to accept that I now have a NEW normal.  I had to reinvent myself in the process of recovering and dealing with those questions of health and unknowns, and honestly feel I came out better and stronger because of it.   I now live with a heart condition that could kill me at anytime - I will never know if the next event will be a fatal one.  

My MS is much the same way - I live with it every day and it has made me a better person.  I also don't know what tomorrow will bring with my MS, but at least I'm pretty sure it won't kill me like my heart can.  

I hope as you digest the possibility of MS being a permanent fixture of your life you will use the resources available to you for aid in adjusting to your new normal.

The members above have all given you wise, experienced advice.  Pick and choose the best from all of us and apply it to your situation.

MS is do-able,
Lulu
Blank
627818_tn?1271780626
Lulu says it all so well! Another thing that is important is knowledge. I feel that knowledge is power in this fight - and it is a fight! Look at the Health Pages, go online, go to the NMSS site, go to the library - whatever it takes! What we don't know often grips us in fear! Once I had a handle on what MS really was, I was better able to deal with it. It is always an unknown in each of us, but you know, life is an unknown for everybody! It is probably a good thing none of us know what tomorrow will bring!

We all want the best for you and are here to help support you and walk through this with you. Having friends there to support you is a huge help, and even though we don't know each other well, we are "cyber" friends none the less!
Jo
Blank
Avatar_f_tn
I can certainly feel where you are coming from. I have had something going on for the last 7 months, no answers, only "possibly MS". The unknown can be very scary and I have dealt with many emotions over the last few months. One thing that I do know is that there are many people who handle the disease quite well. As a matter of fact, I have 3 people that I know personally with MS and all of them still work full time. You wouldn't even know that they even had a chronic illness. Always know that there are a lot worse things that you could have. Continue to be strong ok!
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Multiple Sclerosis Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
How to Silence Your Inner Critic an...
Apr 16 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eaters: How to Silence Yo...
Mar 26 by Roger Gould, M.D.Blank
1344197_tn?1392822771
Blank
Vaginal vs. Laparoscopic Hysterecto...
Feb 19 by J. Kyle Mathews, MD, DVMBlank
Top Neurology Answerers
147426_tn?1317269232
Blank
Quixotic1
Washougal, WA
987762_tn?1331031553
Blank
supermum_ms
Australia
Avatar_f_tn
Blank
SarahL2491
Alagash, ME
Avatar_f_tn
Blank
essdipity
1831849_tn?1383231992
Blank
kwarendorf
Great Neck, NY
198419_tn?1360245956
Blank
sllowe