I’m Living With MS, I’m Not ‘Battling’ It

Ed Tobias avatar

by Ed Tobias |

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antibody, The MS Wire

 

A former colleague recently asked me, “How are you doing in your battle with MS?” It was a legitimate question, not one of those throwaway lines of mock concern that we often hear. We were discussing the death of a former colleague who had been diagnosed with MS in 1996. She was just 59 years old when she left us a week ago.

Annie’s death and the “how are you doing” question got me thinking about the course of my own MS. I was diagnosed in 1980 and I’m now 70 years old. So, I’ve been stumbling — and now usually riding — along the MS road for a lot of years. And, here’s the thing: I’ve never thought of myself as “battling my MS.” In fact, I have a great dislike for that phrase.

For me, living with MS is more like having a constant companion. Some days we get along very well; on others, my companion can be a real pain in the butt. (I’d rather use a stronger word, but my editors would cringe). Sometimes we arm-wrestle — and my MS medications have helped me win many of those contests — but we never battle.

Join the MS forums: an online community especially for patients with MS.

Yes, MS has robbed me of the ability to be as active as I’d like to be. I can’t play tennis, but I can — and do — swim. I travel. I enjoy music and reading. I can’t “walk” my dog, but I can take him out using my scooter. There’s no battle underway when I’m doing these things.

I know that I’ve been very fortunate. My MS has progressed relatively slowly over the past four decades. I’m sure that there are others who do consider their lives with MS to be a battle, but I don’t. If you’re really interested in me, just ask, “Is anything new with your MS?” or, “Are your Lemtrada (alemtuzumab) treatments helping?” or, simply, “How ya doin’?” But, please, don’t ask how my battle is going.

You’re invited to visit my personal blog at www.themswire.com.

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Comments

Cyn Doyle avatar

Cyn Doyle

I feel the same way....I have had this ''adventure'' for 50 years....and will be 70 years old this August. I thank God every day that I am able enough to keep going....some days are very ''down'' days...but others are very good. When people ask how I am doing , I say ''quite well...considering''. My husband just went into a nursing home after being in hospital for 28 months...and God gave me the strength and ability to go visit him every day...I only missed a few days when I was sick [from meds.] or there was really bad weather. ''living with MS''.....not ''battling''...thanks for your thoughts

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Ed Tobias avatar

Ed Tobias

Thanks for your comments, Cyn. We're both 70 and we were both born in August. Leos are a tough bunch.

Ed

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Lashonda Stovall avatar

Lashonda Stovall

I'm a Leo as well I'm 32 with ms got diagnosed in 2015 it's been a journey with alot of questions on my mind I pray to see as many years as you all have been blessed to see

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Ed Tobias avatar

Ed Tobias

Lashonda,

You have many more treatment options available than I had in 1980. I think you have a very good chance of living a fine life even with your MS diagnose.

Best of luck,

Ed

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Christopher avatar

Christopher

Unfortunately Ed, you only had ACTH and corticosteroids in 1980, up until the early 1990's when the interferon drugs were developed to fight MS. A lot of the advocating for further development of advances in neurodegenerative disorders, and primarily multiple sclerosis, was due to people like Dr. Stanley van den Noort, of whom I had the great pleasure of meeting once before he passed in 2009. Too bad there aren't many more researchers like him. You are definitely much better off (if it can even be qualified and quantified) that your disease has been slow moving. And you are correct in your assessment that Lashonda has a much better chance at a somewhat normal life with MS in being Dx (diagnosed) nowadays as opposed to even just 10 - 15 years earlier, let alone almost 4 decades earlier. Anyone being Dx these days actually has a much better chance of their MS being stopped in its tracks, or at least slowed down enough to reach the next wave of genetic engineering therapies designed to stop MS completely or even partially heal damage.

Kelley Spilios avatar

Kelley Spilios

Leo also!! 51 years old MS for 32 years...not fun but I'm making it...no battles just lots of work and support

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ita sara avatar

ita sara

I'll be 71 in March 2019. Dx'd in 2005 with MS, 3 years after my 20 yr. old was dx'd with MS. no others in family known to have MS. She is doing exceedingly well in CA and is off meds. I am on Copaxone and live in upstate NY and am considering coming off it this year. Other than my first major sx I can't say I've had major issues. Some issues I have are chronic but could also be aging.. hard to say. I've been lucky so far. At this point I am more worried about aging issues than MS.

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Erica avatar

Erica

How did you colleague pass? It is very rare to hear someone pass away because of MS so I am very curious.

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Ed Tobias avatar

Ed Tobias

Erica,

You're right that you don't hear of people dying because of MS. In my column I didn't say that she did. Rather, I simply wrote that I that she recently died, I was discussing her death with a friend and that Annie had MS. That prompted the person I was speaking with to ask how I was doing with my MS "battle" and my column was based on that question.

FWIW, Annie's obit reports that she died "from complications related to MS."

Ed

In

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Rashmi Jose avatar

Rashmi Jose

The article opens up a new perspective.... Thank you....

Reply
Steve avatar

Steve

A battle or battles implies there is an ongoing war. Daily battles are win some lose some. As for the war on MS it all comes down to location. Where is the fighting taking place, the optic nerve, spinal cord, etc. is there a new front being established in the CNS? After many years of battles the trenches are dug and the landscape is scarred.

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Suzanne avatar

Suzanne

Thank you for writing this. There are certain words and phrases that keep reappearing in MS discussions. Others are “debilitating,” “ravaged,” and “suffering.” Sure, I’ve felt all of those things and some people have more extreme experiences than I, but this is not the Blitzkrieg. After nearly 30 years, it is mainly about coping, perseverance, and the day-to-day requirements of survival.

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Trudy avatar

Trudy

Love the line, coping,
perseverance, and survival!!!Actually copied it and will put it by my mirror!!

Reply
Ingrid avatar

Ingrid

Great to hear your view on MS. I was diagnose with PPMS ( Neurologist says is a slow progressive type)in 2015 at the age of 48 and for me right now I say I am battling it every day there are more bad days than good. Since 2015 it has gotten a little worse and of course the weather whether hot or cold does have an impact, I use a cane and have a AFO brace on right foot and walking is a struggle and know think might have to upgrade to a scooter. Anyway thanks for sharing your story.

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Christopher avatar

Christopher

Sisyphus is a good way to portray multiple sclerosis.

Reply
Mary Czarnecki avatar

Mary Czarnecki

Excellent to hear a positive view on accepting MS; leave the 'battling' to the doctors/researchers, I say!
Have a great day!

Reply
Ed Tobias avatar

Ed Tobias

Thanks, Mary.

Ed

Reply
Mike Libolt avatar

Mike Libolt

Thank you for telling your stories. I am new to this. I haven’t received a MS diagnoses, but I can see it is coming. I am sad for the loss I am experiencing. Thankful for God’s providence and care. Thanks for the wise words. Mike

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Ed Tobias avatar

Ed Tobias

Thanks for your note, Mike. I hope the info you read here is useful to you. There are a lot more treatment options today than when I was diagnosed in 1980. If MS winds up being your diagnosis I hope you'll find one that will benefit you.

Ed

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