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The Diagnosis is worse than the Disease!
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The Diagnosis is worse than the Disease!

Hi All it been a while......

I guess i needed to take a bit of MS time out of my life. I found I was consumed with doom and gloom after a definite diagnosis of MS just over a year ago. I felt I wasn't going to fufill all of my ambitious ambitions!. Was my partner going to want to marry me now? Was I going to be a suitable perspective parent? Was I going to fufill my career capability?..... Not a year ago.... I was too wrapped up in my P.J's, UGGS and despair!

This time last year I layed in a hospital bed, knowing deep down I had a diagnosis of MS before it was given to me officially. I smoked countless cigarettes and paced the hospital corridors (walking poorly partially with a tremor from fear of confirmation and the other, a symptom of the disease). And even though I knew the diagnosis which was coming I still wasn't prepared for confirmation from a professional for it. My stomach tightened with grief. I wanted to vomit. I couldn't breathe. And then it was "this is worong, they've confused me with someone else", and that followed by extreme anger... "why didn't this happen to someone else more worthy of this terrible disease"?. These things dont happen to good people... like me.

I guess the main part of what I'm trying to describe is that a year has passed... I have had MS for one year. . . My life has changed. But I have made it! I am through the toughest part of it and I am more/better prepared for what may be ahead. Prepared for what I am not sure?.. I guess whatever is coming... who knows?

Before my diagnosis I lived in a world where I believed a diagnosis of MS meant that they were disabled and dependant on others and lead a miserable, sad existance. In one short year since my MS diagnosis I have met so many inspirational people with MS, working, studying and getting on with life the same as everyone else and to an extent I blame it on commercial advertising denoting MS as a terrible wheelchair-bound disease for all who encounter it.  Here is the moral of the story.....

During my first dose of IV steriods for a relaspe I was in a hospital room full of 8 chairs for IV steriods. I had no idea what anyone was there for except for the man beside me, a handsome man, in his early 40's. He was so nice and halarious! We talked about local pubs and sports (not my forte but nevertheless I indulged in conversation). He told me had MS and was getting steriods and I secretly thought he looked great, how was this possible?. But it was only after his hour of Sulo-med ended that I noticed the nurse come over and helped into his wheelchair when I realised that he was unable to walk...... I cried when he left. I would never have known that this man struggled to walk. Certainly not by his charisma! This was surreal for me... A MASSIVE LESSON WAS LEARNED ABOUT MS.

I was in for a neurology review last week... A big question I wanted to ask but was afraid to was "what my EDSS score was"?.

Its a 0. In otherwords I have spent 9 months of my life distrought over what might be.... and now I remind myself of this man I once met breifly a year ago, with what was then my worse case senario of having MS, and I think to myself "what might have been or might be through out the course of my MS is not the end of the world". Had this man never gotten into his wheelchair and smiled and waved I would never have known by his perosnality that he was disabled by MS.....

MY POINT IS:

for those with/without a diagnosis... MS and its symptoms are not the end of the world, Its how we chose to embrace them. We can do it gracefully with humilty, accepting help when needed.... or we can despair in our P'J, UGGS and pools of tears. Either way the eventual outcome of how our MS acts will not be altered..... Its your choice.

Sharon
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Wow!  Thanks so much, Sharon.  Your words say more that I could express!

Welcome back.  You stand as a wonderful reality check for those who are paralyzed, not by MS, but by fear.

I hope we see you around more.

Quix
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      Hello, Thank you so much this post!  Your words are so true and your emotions.......Well they are so understood!  

    In your last paragraph when you said that...MS and its symptoms are not the end of the world, Its how we chose to embrace them......That sure "Rings" a Bell in my ear!
i too am coming up on my One Year "Official" Dx and look back in this last year at what has changed in 'me".

   I guess my answer would be.....to cut out all unnecessary "events", "situations", and Stessors in my life as well as Watch my faith Grow stronger and stronger in GOD and all the wonderful things he HAS givin me and not concentrate on the "things" that I have not!

   You have an awesome outlook and hopefully you can also share your thoughts and experiences with everyday people...not only w/ MS but w/ anyone who has a chronic disease.

Be Well and Thanks again for your Positive thoughts,
~Tonya

    
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Sharon-

Great post!  I very much enjoyed reading it.  It is soo true.  It is obvious you have lived it and come out the other side. Congrats to you.

Blessings to you, Julie
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Thank you for sharing such a well thought out and from the heart introspection of what you have learned since your diagnosis. It can take some people years to reach this point and when they do, it can bring so much peace of mind.

I attended my first MS event yesterday and the doctor who was presenting the main topic said something that I've heard over and over in the past but finally made it through my thick brain.

She said that we should not let MS be the center of our existence.  We may have MS, but the MS does not define who we are.  Those words finally hit home with me.  I realized that the reality of having MS is the same to me as, for example, the fact that I have 3 kids, am married, work in human resources, I've lived on an island before, etc.  It is in the chain of facts that describe my life, but it's not the central point in my life.  

Thanks again for sharing your experience. It was helpful and insightful.  

J.
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Thank you, Sharon, for this eloquent post. You are so right that attitude is an essential ingredient for getting through this reasonably well. Perspective makes such a difference.

Your circumstances are exactly the same--you still have MS with whatever problems or limitations it brings. But you have decided, and it *is* a decision, that you will not let this issue be the center of your universe. You spent 7 months being miserable, and now have spent the rest of the year much more content. How wonderful for you that you were able to be open to the possibilities. When you met the wheelchair-bound man, that was a lucky day for you, yet still, you needed to be ready to listen, and you were.

We have another thread going that you may not have seen: http://www.medhelp.org/posts/Multiple-Sclerosis/What-is-or-was-your-biggest-fear-upon-diagnosis/show/1338473

There, many of us talk about the emotional issues surrounding their diagnoses. In my part, I said, basically, that I won't let fear be part of my life. I choose to be as happy as I can be. Some people who don't understand this may believe it is dishonest. It is not. Everyone gets fears and everyone has bad days, but I am in control of the general mood of my life. It's a very pragmatic thing. I go with being as content as I can, and that makes me happy.

Best wishes to you.

ess
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572651_tn?1333939396
Welcome back Sharon, I certainly hope you will pop through here on ocassion and share your experiences and thoughts.  I loved reading of your emotional growth this past year.

We always tell newly diagnosed people to take time to learn to live with this disease and you give us another perfect example of how hard, yet simple that task can be.

Thanks for sharing this with us.  

Be well, Lulu
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Sharon,

Beautiful post, thank you!

I believe I joined the forum while you were on your break...so it is very nice to meet you :-)
~Jess
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Sharon,

I cried reading your post because that is how I am feeling  at this very moment.  Thank you.

J
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Sharon,
   My first year was tough. I was scared of all the what ifs. Now I am happier than I have been in my whole life. I live for the moment and do not worry about the future. I do what I can. I help others. I am going to be training a service dog for a man with Parkinsons as I trained Polly. I take Dressage riding, and work in my garden. Hopefully I will get back to art full time.

Alex
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Sharon,

Thank you for sharing your innermost feelings and the journey you have traveled to get to the destination that you are at. You shared with us what I believe all of us have done in one form or another, grieve and get on with life.

However, your encounter that day with the "pub man" changed your thinking and may have even extended beyond that tiny ripple that grew and encompassed you and now hopefully will grow to encompass even more.

Thanks again!
Ren
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1312898_tn?1314571733
Very nicely stated!  Thank you!

Red
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