Living with M.S.

"Living with M.S. is sort of like training for a long race. The harder you try, and the longer you keep at it, the stronger you become.
Eventually, looking back, you may be amazed at the power you possessed, even when you had no idea it was within your reach." (Linda Ann Nickerson)


May 28, 2014, is World MS Day

Today is World MS Day. The 2014 theme for this global health awareness holiday, promoted by the Multiple Sclerosis International Federation, is “ACCESS.”

And here’s a cool idea.

Do you have a wish pertaining to multiple sclerosis? Are you wishing for a cure, better treatment options, cessation of symptoms, freedom from pain, restoration of MS-related losses, or something else?

Why not post your wish, so it might appear on the World MS Day page’s Wish Wall? Submit your World MS Day wish online, or tweet it with this hashtag:  #onedayms 

You can also visit the World MS Day Wish Wall to see what others have written.

Here’s to World MS Day … and the day to come, when MS is no more.

World MS Day 2014
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Got up. Got dressed. And got back in bed.

Score one for the MonSter today.

Sometimes, it just works that way. But, hey. It’s Saturday – and a holiday weekend.

I had the best intentions. I’d planned to rise early and run. I really need to. I’m registered for a 5K race in two weeks, and I am not nearly ready this time.

But multiple sclerosis is uncanny and unreasonable.

Symptoms like fatigue, pain, and vertigo often stage their collective ambush, and it’s pretty much impossible to see it coming.

This morning, around 1:30 a.m., the MonSter hit me with a vengeance … and a migraine.

And an MS migraine is a breed all by itself.

If you’re an MSer, you already know that. And you may be shaking your own throbbing head. Sorry about that.

So, at this obscene hour of night, I staggered to the sink and downed some ibuprofen. I thrashed around in bed for a few hours, praying for relief.

By 6 a.m., the beast was still raging, so I stumbled out of bed and grabbed stronger meds. I reeled around in the shower, holding the safety rail on the wall and trying to clear my throbbing head. I dressed in my running clothes, still hoping for a quick rally.

I crawled back into bed, still wearing my workout wear and with my hair still wet and uncombed.

You know … desperate times and all.

One point for the MonSter.

Now, a few hours later, the brain is still in pain. The MS migraine hasn't let go. But I’m planning to come out swinging later.

I’m stubborn that way. And I’m a mom. That means I’m on duty – even on a holiday weekend. MonSter, you've been warned.

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Gotta love a good MS report

I’m kicking MS’ butt. OK, that’s not always true, but this week, it pretty much fits.

Good news is worth sharing.

My latest magnetic resonance imaging results came back, indicating no change from the past couple of years. That means no new lesions. 

And that is simply fabulous news.

Although the flare-ups do come and go, with the MonSter rearing his ugly head and creating havoc in my life (often at the most inopportune moments), I am rejoicing to hear of no new apparent damage showing up on the MRI.

Tomorrow may bring unexpected challenges. It surely will. MS is a wild ride.

But, for today, I am kicking MS' butt.

If and when the MonSter strikes back, I will stand with the hearty host of MS warriors and battle the beast. I’ll slug and slap and kick and get in as many licks as possible.

If you live with MS, then you’re kicking its butt too, whether you're in remission, mid-flare-up, or pushing yourself through MS progression.  ‘Cause the fight never stops.

Gotta lovc a good MS report –
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Mama’s not faking … or bellyaching.

People with similar health challenges tend to share their stories with one another. I frequently experience this, both online and in person.

This week, I received this message from an MSer’s mom. (Let’s call her Annie.):

Hi. I am a mother of a wonderful daughter with MS. I need your advice. Help. My daughter has children who think she is using MS as an excuse for everything. They are mean to her, although not in front of me. How can I make these kids realize how much they are hurting their own mother?

This message gave me an idea.

As fellow MSers (and loved ones) share questions about life with MS, I’ll try to respond. I make no promises or pretenses about having any insider or expert medical knowledge. But I may be able to share similar experiences, lessons from life and research, and a whole lot of empathy. 

Maybe it’ll help someone, raise someone’s spirits, or start a constructive discussion.

So let’s look at Annie’s concern.

First, I gotta say it: Annie, you are not alone in this. The “You must be faking it” assumption seems to go along all too often with multiple sclerosis – particularly Relapse-Remitting Multiple Sclerosis (RRMS).

Why? Because RRMS comes and goes. That’s pretty much it – by definition.

So, our weird and annoying and exhausting and frustration and often disabling MS symptoms may be in full force one day and fairly invisible another day. Or they may stick around for days, weeks, or months.

Maybe that’s hard for onlookers to understand. It may be even more incomprehensible to those closest to us.

But maybe that’s not our problem. As MSers, most of us are still trying to understand it for ourselves.

Here’s my little spiel – for those who may question whether MS is real.

MSers, feel free to read bookmark this page and read any or all of these statements to your loved ones, whenever the suspicious eye-rolling begins.

  1. MS is real. My symptoms are real, even if they don’t bother me all the time. When they happen, they can knock me flat.
  2. Just because I do not complain constantly about MS, it does not mean the condition does not make me uncomfortable or cause me problems.
  3. My MS symptoms are not a convenient excuse to get out of chores, work, or other responsibilities. In fact, MS is really not convenient at all.
  4. Yes, I may look like an overachieving powerhouse of energy some days. That does not change the fact that I may fizzle unpredictably on MS days.
  5. No, there is not a pill I can take to make my MS symptoms go away. Usually, I just have to wait them out and hope for the best.
  6. Did you know that stress can aggravate MS symptoms? That’s why your understanding and encouragement can really help a lot, especially during flare-ups.
  7. Let’s make a deal. If I don’t whine about MS, how about it you don’t whine about the times I may choose to sit out an activity?

What would you say to Annie that might help her and her daughter to instruct the children about their mother’s life with MS?

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