Rocking New York City with Multiple Sclerosis!

I just made my first visit to New York City since 9/11.

Emotional, exhausting and empowering.

The multiple sclerosis was managed but it took hard work and plenty of preparation.

Final result: Live TV shows promoting brain-health and MS awareness.

Traveling with MS can be a nightmare, even with the best intentions.

Click HERE to see how I prepared

It’s best to have a well thought out plan “A”, knowing the whole time that most likely plan B, C or D might come into play.

We started off the trip with some MS advocacy work... my favorite! Celgene is introducing their new #MSmindshift initiative and I love it. Spot on. It’s all about brain-first thinking. MS affects the whole body but the damage is done in the brain and spinal cord. For now, I’m focusing on the brain.

My friend and fellow MS advocate, Cathy Chester (@CathyChes) was there along with her husband, Gary. Total blast. Laughter, fun, sillliness and seriousness filled our time.

Click Here for more information about MS MindShift and Brain First thinking.

Plan B it is

The plan was to spend the day in a hot air balloon. But, just as with MS, life is unpredictable. Especially the wind. So, Plan B it is.

And let’s just say that Plan B can often be total baller. Best not to have expectations for any of the plans because something really cool may just show up.

Today it was a private yacht trip to the Statue of Liberty. No one else on the water and the weather, while breezy, was gorgeous.

The next day was packed with a satellite media tour in the morning and then...ahhh...back to bed!

First morning was a 3AM wake up call. The next was 5AM and the next 4AM. After traveling cross country. Thankfully, we were on Alaska Air, which knows how to take care of their customers, especially those with MS.

The media tour was fun. I absolutely loved it - sharing my story to help others. I could do this all day long... well, maybe at least for a few hours. Here is my very first ever live TV interview chatting up about MS Mindshift, “brain-first” thinking and what its like to live with MS.

Click HERE for live TV interview with Caroline Craven, the GirlwithMS

I love what I do, and can do it because of my friends, support and especially because of Tim. He is attentive, caring and takes care of me better than I do. We all have our strengths. My forte is not taking care of myself. I have had to learn, train, practic and form healthy habits in many ways. Like, slowing down and taking breaks. Tim can see when my MS is acting up and will interfere so I don’t over do. He attentiveness is helping me stay focused on whats best for my MS.

Couldn’t do this without you, honey!

The tour of 9/11 brought about emotions not felt in over a decade. My MS was really bad when 9/11 occurred and the images from the original film footage came up like a splinter and stung hard. Vulnerable, raw, emotional, I was a mess. Snapping at Tim for no reason, except for feeling like a veal chop pounded wafer thin, ready for the broiler.

Then we toured the Empire State Building with Rubio, An informative, enthusiastic and passionate guide. AWESOME tour!

Click HERE to see how I prepared for NYC

And, HERE are my tips for traveling with MS:

1. Plan your trip. We studied the map and made general ideas of what we wanted to see. As the trip got closer certain reservations for tightened up. But within each day were hour long blocks of nothingness. Spots for rest, rejuvenation and restoration.

2. Prepare: I spent a week in Lake Arrowhead prior to NYC. This meant quiet time, me time and time to get my work done. No one else’s agenda mattered except mine. This is not easy to do but it worked out well for this trip.

I have a tendency to lose weight while traveling. This was never the case prior to MS. But now I need to calorie load beforehand. Especially for a trip like NYC which had long days and plenty of walking.

3. Wardrobe: Check out the weather and layout your wardrobe. With MS, especially in the warmer months, it’s important to dress in easy layers that can be shed as necessary. Even more important if you are a middle-aged woman. Organize outfits for each day and make notes of them. This can be so helpful when the MS blahs rear their ugly head during a trip.

4. Nutrition: Anti-inflammatory foods help me the most while traveling. Green tea, lots of water, lean proteins, cheese becasue I’m a cheesehead. And watch the dangers: too much salt, processed foods, quick fixes like caffeine and alcohol.

5. Check out my blog post about brain-restoration; Click HERE to learn a bout brain restoration, sleeping and MS

6. Most importantly - have fun and smile!

Even if youre tired as heck, try to find that smile deep within and share it with others. It’s contagious and viral in all the good ways.

We had the opportunity to see. Oklahoma! On Broadway thanks to Jamie DuMont and Rick

Miramontez. What a show. I am still smiling and dancing inside. Just what we needed to wrap up an amazing week in New York City.

We also got to meet up with my big brother, Bruce Craven, at Marea’s Restaurant. Bruce recently published his latest book, “Win or Die, Leadership Secrets from Game of Thrones.” I highly recommend it!

Remember guys - we’ve got this!

#takeTHATms!

CLICK HERE FOR MS on the NEWS!

More Than Just Spasms and Pain: What It's Like to Live with MS

18 and is reprinted with permission from Healthline.com

More Than Just Spasms and Pain: What It's Like to Live with MS.

by Caroline Craven

Creating a sense of well-being can help mitigate the negative effects of multiple sclerosis.

That’s what researchers in the Netherlands are saying in their recent study on the debilitating disease.

With multiple sclerosis (MS), the body can start to fail and falter due to various symptoms.

Feelings of “I can” are replaced with “I might be able to.”

“I still remember the first time I experienced muscle spasms in my arm and leg. I could no longer walk or sit normally. It scared me and made me wonder whether it was really my body as I felt totally disconnected from [it],” one person with MS recalled.

As the body is able to do less, experts advise healthcare professionals and people living with MS to focus on the what the body can do.

“I would like to know whether this paper resonates with the MS community,” Hanneke van der Meide-Vijvers, one study author and a postdoctoral researcher at Tranzo Tilburg University, told Healthline. “When it comes to healthcare practice, I strongly advocate a phenomenological perspective in which we start from lived experience rather than a body-mind dualism.”

Analyzing the MS experience

The study, entitled The Mindful Body: a phenomenology of the body of MS, focused on how people with MS experience their bodies on a daily basis.

The researchers concluded it wasn’t the body that’s limited, but rather the ability to live life fully.

For a person with MS, it’s not the lesions or physical disabilities that they experience on a daily basis. It’s the inability to make a cup of coffee, attend a concert, or drive to a friend’s house.

The phenomenological research design this study followed refers to a tradition of philosophy, originating in Europe, and includes the work of Sartre among others.

The study involved 13 women with relapsing-remitting MS (RRMS) for more than five years. The process included personal interviews that took place in the home, a coffee bar, or via Skype and FaceTime.

“It’s a very interesting study,” Kasey Minnis, director of communications for the Multiple Sclerosis Foundation, told Healthline. “Rather than try to ignore their body, healthcare professionals should be trying to help individuals with MS feel positive within their bodies.”

This small study provides a glimpse into what it is like to live with MS.

Living with MS means adapting

People living with MS may experience unusual symptoms.

After a long enough period, these unusual symptoms become mainstream. They become familiar with the strangeness.

A healthy person will consider exercising as long as they can. A person with MS will exercise as much as their body can tolerate.

Ordinary tasks require planning and attention. When the possibilities of the body no longer match aspirations, the two become separated.

“I once had a relapse and had to learn to swallow again,” shares one participant in the study.

The body effect

The study suggests that “a person with MS ‘splits’ her body to reconnect with her body.”

“My mind likes to dominate over my body,” one participant said, “and now my body gets more chance to speak. There is more balance.”

When a person creates this type of emotional connection it’s called the “body effect”.

This emotion toward the body is reflected in the care given. The study found the 13 women committed to keeping their body in shape, exercising or paying attention to diet, more so than before diagnosis.

But, a person may ignore their limitations for a feeling of freedom. They continue behavior patterns that could be detrimental to their health.

In essence, they harm the body to nourish the soul. These dangers include sauna use, smoking, drinking, and other modifiable risk factors.

“We go to the sauna every Friday evening,” shared one participant. “After the sauna, I always have weak legs and I know the heat is not good for my body, but my spiritual well-being is also important. Going to the sauna is my way of unwinding.”

Evolving to live

A person with MS engages in modifying their body as the disease progresses.

This process builds up what’s called the “habitual body.”

The actual body represents life before MS. The habitual body is what one creates with their conscious thinking and actions.

As time goes by, the memory of the old body fades and the new body becomes familiar.

This new body has most likely been altered and changed, so the person with MS must adapt to these changes.

“I had to learn to walk again,” one participant said. “I felt miserable because a lot of people in my neighborhood do not know I have MS. I had the feeling that everyone was peeking though the windows seeing me act weird.”

Worried what others might think, she added, “but yeah, I wanted to recover and moving around was the only way to get there.”

The mindful body

Uncertainty leads to increased awareness and a new appreciation for the body.

A person with MS may find themselves in a constant state of bodily alertness.

This is called the “mindful body”.

“Yesterday I walked in the city center and did some shopping. I noticed that my legs started to swing and that I was more and more leaning against the person I was with. Then I realized it was time to go home,” said one participant.

The researchers suggest that a person living with MS is always connecting with their body, either consciously or unconsciously, “listening to their body.”

This attention toward one’s body may allow them to live as well as possible because they’re aware of their limitations and create a life around them.

To adapt, they must relearn how to recognize the body’s signals. Someone may become especially sensitive to signs of fatigue, such as sensory issues, trouble communicating, or problems concentrating.

During the study, one patient responded, “MS is like the weather as I cannot predict how I will feel in three days, or tomorrow or even a few hours.”

The MS hug

People living with MS can experience bizarre and intense bodily sensations. Basically, the body takes over and wants full attention.

One example of this is the MS hug, a common symptom of MS.

“The MS hug is a feeling in my body. It’s like having an elastic around my waist that gets tighter. At that moment, my body enters a warning phase,” shared one participant. “Like it says, ‘Don’t do any crazy things anymore because were going to tighten it even more!’”

Sense of well-being

The body can also produce a sense of well-being for people living with MS.

They can get lost in their activities where they experience their body in a positive way.

One participant shared her experience with a cycling class.In the beginning, her legs felt heavy.“But, at a certain moment I was so in the flow of the lesson and busy with the group in front of my, that my body fell away,” she said.

Taking the body for granted

This study highlights that uncertainty is more about the here and now rather than the future or long term.

Uncertainty requires planning, loss of spontaneity, and distrust in body. So, the focus shifts to the body, not at the task at hand.

This also brings added anxiety.

Western society demands a fast paced life. Schedules become filled weeks in advance.

Study participants expressed problems with keeping up with society and the need to listen to their body.

They experience a constant struggle between what they feel they can do and what’s on their agenda.

Useful therapies

People in the study shared that they attended to their bodies in healing ways by walking, meditation, and dance.

“That’s one benefit of our health and wellness program, which provides exercise and wellness classes,” said Minnis. “Adaptive exercise and recreation can help a person appreciate what their body can do, despite any limitations, and to feel more in touch with their bodily needs.”

“We’ve observed that participating in these activities has more than just physical benefits,” she added. “They often increase mental clarity and emotional well-being.”

Editor’s Note: Caroline Craven is a patient expert living with MS. Her award winning blog is GirlwithMS.com, and she can be found @thegirlwithms.

Emotional Hangover from MS - and what to do.

The MS got a hold of me, worse than it’s been in months. But there were reasons. Pushed beyond comfort by demands of life, it caught up with me. And caught up bad.

Often we talk about the physical pain of MS, the tremors, the spasticity. The pain the comes from every nerve ending or the fatigue that covers us in a lead blanket.

And then the pain wanes and we feel better for a bit. But the emotional sludge that remains behind is detrimental to our health and happiness.

And boy did I feel it this morning when the day got started. Frustrated, irritated and angry at life, my legs crumbled their way out of bed to get some coffee. Crumbled for sure as there was no jumping for joy today.

Why my? Why this damn MS that suffocates me and keeps me jailed up in my body?

Sure, I aim for happiness. Positive thinking and all is great an my focus. But today, I’m not going to fight it. My emotions are way over the top upset and there’s no denying that I really I despise my MS right now.

Unfortunately the angrier I get the more worked up my MS becomes. This isn’t productive or healthy for anyone.

Time to force a change!

Yes, I’m using the word force. Enter something beautiful in life: A sit in the garden. A chat with a friend. A stroll through the neighborhood. Find the beauty, grace and appreciation that is the bases of life. It’s there but when I’m this worked up it’s hard to see beyond the tears.

But forcing this is easier than it may seem. Just sitting out in the garden for a few minutes is helping.

BREATHE DEEP EXERCISE

1. Breathe in deep to the chest.

2. Take the breath deeper, into the belly and gut and let it distend out as far as possible

3. Keep taking in more air, aware of the beauty around you.

4. When full of air, sit a second then exhale deep.

5. Exhale through the mouth, letting out everything dirty, angry and evil.

Repeat!

Ahhhhh... Feeling so much better already.

Now, to remember this trick during the busyness of the day.

Now that I can see straight and am calming down, time to record my issues.

Even after almost 20 years of this illness, I am still learning about it. Today was a lesson learned. AFter three days of physical hell, the emotional hangover was even worse. Next time my body faces exacerabations from mismanagement I must remember this tailing wind of emotions that have entwined me.

Win or Die: Leadership Secrets from Game of Thrones