Monday, February 16, 2009

Winners and survivors.

Can you really fight MS and 'win' and can you be a plucky ‘survivor’ not possible surely once it has come into your life.

MS just strolls into your life uninvited and takes it over, it just steals your life.

I was diagnosed in 2006 with Primary Progressive MS and it was more progressive than we, Richie and I could have ever imagined.

The progression of the disease has been so rapid that everything has become outdated almost before it has been implemented.

It is a real shocker and extremely scary and unexplainable, it's hard not being able to adequately describe how it feels having MS.

Friends and family find it very hard to put themselves in our place and are quite often very worried and scared as are we.

Even the most sympathetic/empathetic person can't feel what those of us with MS are feeling.

None of us can feel what another is feeling, so we are all isolated in our own experience which is why it is even more important to make contact and to communicate with each other.

We need to give ourselves and others a break MS is a shocker which worries us all.

12 comments:

Anne said...

Hi Herrad:

I don't think at this point in time, that any of us can WIN with MS, but I do believe we can survive with MS.

Until we have more tools at our disposal to WIN, we won't. But that doesn't mean we have to die, although it does look that way to those who are suffering greatly.

I champion you alot, because you are still keeping on, and that is important, whether you do it with help (Richie and others) or spiritually (within yourself). You are a true model. I am thankful that you blog to share your experiences with others.

Love,
Anne

LISA EMRICH said...

Hi Herrad,

I don't really like the phrases "conquer MS" or "healing MS" or "beating MS."

MS is something which we learn to adapt to, no matter the extent of the disease or its progression. We learn to "live with MS" or "survive MS" just as Anne says.

You are an excellent example of a person who is continually adapting and finding ways to enjoy life in spite of the challenges placed on you.

That doesn't mean that you don't feel anger or sadness about it. It means that you have a strong, deep desire to continue seeing the beauty in life. That makes you a true survivor.

You are showing others that it can be done, surviving. In that way, you are a warrior, a trailblazer. Thank you for continuing to share your journey and path with those of us on the other end of the computer screen.

Much love,
Lisa

www.ConquerMS.com said...

There are so many people out there who are conquering ms. Have you read the book, Healing MS by Ann Boroch? These are true stories of people who conquered their disease. I hope you are a reader, it will make you "believe" that you can get better. If you don't believe than you won't. We don't need to rollover and die.
Robert

www.ConquerMS.com said...

This is in response to Lisa E. comment.
"There is a entire human demension to human health we don't understand, you cannot measure a person's will or spirt". - Dr. George Thurber
Your saying you cannot conquer, beat multiple sclerosis is saying there is no hope. You can only adapt to your situation.
I thought there was hope for me when I could not walk one year ago, could not remove the anxiety out of my head, could not see the future ahead of me. I "BELIEVED" I could conquer my negative feelings and this disease. Today I walk 1.5 miles each day, have no anxiety,and I'm happy. Have you done everything in your power to beat this disease? Have you done meditation, yoga, exercise, alternative methods? Have you choosen to get well? Until this happens you have not choosen to do everything in your power. And lastly, have you educated yourself and read every piece of material and listened to every story of people who really beat this disease. These are true stories and I have met these people. Until then you cannot assume that their is no hope.
Robert Groth

herrad said...

You can't conquer or beat multiple sclerosis.

But acknowledging reality does not mean giving up.

It means you use what you have and you enjoy what you have.

It means you have to make the most and the best of your life.

You have to be positive and adapt to your situation.

Giving and receiving support is vital to adapting.

Staying positive is the other.

Jen said...

I agree with the women here. Everyone is so different and MS experiences are so varied. Some will go from wheelchairs to unaided walking and some will not. It is the nature of the beast. I would never presume to tell someone that they are not "trying hard enough." I am fortunate to have had a moderate course of the disease thus far. I don't have a lot of day-to-day physical challenges. And I don't KNOW if I will have worsening disabilities in the future that I cannot CONQUER, but merely SURVIVE with.

MS is so subjective that we can only work with what we've got (trial and error)and deal with the disease. This includes handling the scary ups and downs that no amount of praying, reading, or wishful thinking can conquer. I'm not a pessimist, just a realist.

Herrad: you rock and I am honored to follow your blog. Know that we here support you during your battle, whether our own battles are similar or far different.

Love,

Jen

Anne said...

I just got done reading comments from other bloggers - namely Robert somebody - and I thought "What nerve!!!" He is assuming alot, considering he doesn't know you and assuming that he doesn't know the extent of your MS.

I think you should write a post citing that YOUR MS is not like HIS MS because none of us is alike.

Sorry, he just ticked me off when he said you haven't tried everything there is to try!!

Love,
Anne

PS Did I read that you were going to start up podcasts? I can't wait - I am looking forward to it!
A

mortonlake said...

well,sometimes it gets just too much doesnt it herrad?the realisation you can't do what you want.well,whatever happens,you will never give up.good luck,let all of us who have this most nasty of diseases finf relief.take care,mort xxx

kmilyun said...

Acceptance and a strong desire to not roll over and give up. You continue to brighten my day with your strength.

Richie said...

I saw a cyclist get hit by a tram a few years ago- that was how MS hit Herrad. One second she was getting on with her life and the next she was twenty metres up the road and her body was shattered. We did not have time between diagnosis and this point to try everything possible- we were still looking it up on the internet when suddenly Herrad was in a wheel chair.
Robert has a very different relationship with MS. A shockingly early diagnosis and an entire adult life of resisting it's intrusion. We suspect Herrad has lived with it for about thirty years before it took over. This was achieved with ignorance and not positive thinking or action. MS gave her a few nasty times -falling over- going blind in one eye-rubber legs- exhaustion- many little unwelcome interventions over three decades. Herrad dealt with every symptom as it came along. It was not until it was bad enough to stop her walking did she discover she had MS. Her positive attitude has impressed all who have had contact with, from fellow patients to medical staff- friends old and new ever since. She has made fresh social contact in every situation and has many new friends from the last years. If positive could do it she would be tap dancing now.
Truth is hard to take but lies are no consolation for a hard reality. MS kills. Not everyone mind you.
If Robert's positive thinking and his self help books and his freshly squeezed orange juice works for him I will be delighted. His positivity is wholly commendable however it carries a price- faith. To be positive Robert must believe or the magic does not work. Robert is fiercely prosecuting his thesis for survival and can not allow doubt to dent his shield of positive attitude around his central nervous system. This need to believe can lead him to be insensitive to those who's experience does not support his thesis of positivism.
He did not intend to be so rude to Herrad. He was just over evangelical for his cause. May he keep his positivity and his remission for ever but please let him learn a little diplomacy.
Thank you to the other commenter s for saying such nice things about Herrad. She deserves so much respect for the courage, dignity and humour she shows every day.
May Robert and every one else be spared the pain my darling is going through- but you have no guarantee.

Blinders Off said...

Herrad,

MS is our reality, but life is not over. I agree with the ladies on here. I applaud you because I do not know how I would have handled being told from the onset I had PPMS.

To be SURVIVORS WE MUST KEEP A POSITIVE ADDITUDE Living with MS.

Jaya said...

I couldn't agree more with what Richie has said here....lots of love and hugs for both Richie and you, Herrad - your courage and the way you see life with such clarity is remarkable!