MS is like an iPhone Battery...and I need a recharge!

Keeping ones battery charged with MS can be as tricky as keeping an iPhone going all day. Remembering to turn off location services and programs running in the background is vital to keep an iPhone chugging along. But how do we do this with MS?

How do we turn off those programs running in the background. That constant chatter of energy being wasted. Do we meditate? Medicate? Or both. 

And when it comes to our location services, how do we unplug ourselves from those wanting our energy? Do we withdraw? Or de we become strong and set boundaries?

So much in life has changed with my MS. Every decision, every thought is focused on how it will effect my mind, body and soul. While this is a good thing in the long run sometimes one really just wants to kick down a loaded cappuccino, go for a hike, enjoy a pipe on a cold and rainy day while reading Harrison, drink a glass of wine or two with good friends, tie some flies, hop in the car and drive...just drive. A certain since of freedom is stripped when a disabling disease like MS hits. Freedom in so many ways. Once a road warrior. I am now a shuttling sissy.

It started with a panic attack on the LA freeway amongst heavy traffic. No escape. Panic stricken, batteries faded fast. Eyesight diminished rapidly. Then the convulsions and dry heaving that would randomly hit never made it safe. Let cramps, not good for driving either. While these issues don't happen all the time, they've occurred enough for me not to trust my body, understanding now that my batteries could crash at anytime. Knowing this makes me feel vulnerable and vulnerability creates fear. Too much fear can strip us of our lives.

To a point we can quick charge our batteries: caffeine, tobacco, provigil, sativa, sugar, etc. But how long can we quick charge before the battery won't take a charge? And when we are left stranded there is no back up battery. No way to plug into the wall and recharge. We have only one battery. We must take care of it.

So how do we turn off those extra programs running? Visually I imagine the blinders on horses. Those eye guards that keep the horse looking ahead and not distracted. "Put your blinders on Caroline" and get to work. Focus on one project. Or one meditation. One walk in the rose garden. The point is to have just this one program running. And turn off all others. Blinders. This works for me, most of the time.

But there are those times when it doesn't work. When I need a distraction. And another distraction. And again and again until I have six programs running and my battery bar is slipping fast. "Put those blinders on." But sometimes it just doesn't work.

Then, finally, I stop everything and go lie down in a nice cool place that's not to bright. Closing my eyes and just being quiet. Recharging. Ahhhh. It takes strength to keep our batteries charged. To know what we need to do to take care of ourselves. To unplug from others when we are on low battery and turn off our location services.

For me this meant learning a lot about boundary setting. Rules. My rules for my health. This can be hard on friends and family. Setting boundaries can take a lot of explanation, patience and communications. But it's essential for defining our needs to keeping us alive and void of fear. To live life on a full battery. That's my goal. To manage my software and take care of this battery before it won't hold a charge.

Let's do this. Let's keep our batteries charged. Let's rid ourselves of fears and vulnerability. It's time. It's time to take charge and recharge.

#takethatMS

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Self-Care Challenge: Sit Quiet and Rest the Mind

Challenge accepted!

Time to "Make a Change - Make a Difference"

“SIT QUIET and Rest the Mind”

Start with 1 minute, one day, then grow to 5 minutes for five days.

Set a timer on your phone/watch so you're not thinking about time.

As your mind begins to wander, remind yourself that everything will be there when you are done.  And, that you will find answers and solutions at that time but for now we are to rest and be quiet.

Breathe deep.  Inhale through the nose.  Exhale through the mouth.  Seek always the quiet.

Find a quiet place and clear the mind.  This will not be easy but let your mind find peace in absence of thought.



Wellness begins in the heart and with a grounded body mind and soul.

"I am worthy of a healthy life"

Let these intentions carry you away into a beautiful positive life.

Join us on BelongMS - a safe community for you and your MS   

Finding peace and quiet with my Belong MS community, a safe place to discuss Life with MS with people who understand.  Join my channel or one of the others for tips, help, support, friendship and more. #belongMS 

App download:    https://go.onelink.me/PGKk/3c90cc47

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Because together we’ve got this!

#challenge #makeachange #livebetter  #takethatms #selfcare #BelongMS

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

Updated 2023

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.

One of my favorite articles about life with MS. 
This original  article posted on 9/22/18 and is reprinted with permission from Healthline.com

Escaping the Red Zone of MS

Sometimes this is not very easy to do, keeping your clothes on, with MS. Summer months are brutal and just hiding out by the AC doesn't cut it for most folks. Planning ahead with cooling devices is best but sometimes we simply wake up in the "red zone", inflamed and sensitive, a red flag for a relapse.

When I'm in the Red Zone the first thing done is to rate the shade of red. Am I getting a little pink or have I fried myself?

And then ask myself why?

• What did I do yesterday?
• What did I eat?
• What was the temperature?
• How did I sleep?
• What's on my agenda today?

What can I do now to move into the "Blue Zone"?

Hanging by water is a great option. Pools, rivers, lakes, oceans provide instant relief from warmer temperatures. But not all of us have this opportunity nor can we often remove our clothes to cool off so improvise we must.
Quick tips:

• Cool shower. Even Luke warm is fine. Just hop in the shower for instant cool down.
• Wet bandanna around cooling points: neck, wrists, ankles
• Ice water, drink it, pour it on your head, pour it down your shirt!

• Wet shirt, cool off body. Huge help in the Sahara when my guides put my shirt in the crocodile infested waters so I could cool off. They don't have ice on safari in Tanzania, FYI.
• Juice it! With Cooling, anti inflammatory and detoxing foods such as cucumber, apple, pineapple, etc.

• Visualize the Blue Zone:

Ahhhhh....feeling cooler already. Now, not to mess it up.

 

That means to watch diet and activities all day:

• Cooling foods
• Activities by AC
• Water, hydration
• Reduce stress and get those items checked off to-do list
• Have fun brainstorming on some new projects
• Find balance
• Be at peace
• Mellow in the "Green Zone"

So, How do you deal when you're in the Red Zone?

Originally posted in 2015. Still pertinent today in 2024!

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Creating your own health: Using Diet & Nutrition to Treat MS

Wow. 23 years later.  Probably one of my biggest factors in managing my MS symptoms is the use of diet and nutrition.  During my three years in the double-blind, T-cell study, back in 2001, my hopes were on nutrition and all things alternative.  I willingly went off all DMD in search of a cure for MS.  But then reality set in, and it was all engines forward in the battle of natural ways to fight the progression of this disease.

Sporting my flower peace wreath

There is a lot of incoming research on Diet and MS.  There are also some active clinical trials.

Click this out:  Here is my article on Diet as a treatment for multiple sclerosis.

Diet - or better yet, a nutritional protocol, is essential in my daily battle against MS.  If my daily intake has too much salt, too much caffeine, too much gluten, too many processed foods, then I will pay the price.  And while that price may not be paid that same day, trust you me that it will not forget and will rear its ugly head.  And, more often than not, all of the prices will want to be paid on the same day at the same time, wreaking complete havoc on your life.

Go for color when cooking and creating healthy menus 

Fresh lemon is key!  Use in water, tea, baths, etc.

 #refresh

Click here for my article on Diet as a treatment for multiple sclerosis.

Become friends with your body and find a new level of wellness.  

Welcome to living with multiple sclerosis.   As you know it often does not bode well for us MS patients.  Out diseases are random and progress willy nilly.  But there are modifiable risk factors that we can take into consideration to help us strive for the best life possible despite's our illness.  These risk factors include cigarette smoke, alcohol, nutrition, supplement intake, exercise, and other situations that we have control over.

~if need be - pee on it and walk away~

Cig smoking is bad.  Bottomline, cut it out.  Alcohol is considered OK in moderation.  Consult with your neurologist or medical expert.  Often people find that Vitamin D, B12 and Biotin can all be beneficial supplements.  In addition, the nrf2 activator, Protandim, is found to be great at fighting oxidative stress.

So, that brings us to Diet, or nutritional protocol.   Everyone is different so finding a protocol that works best for you is key.

Gluten free bread is an option.
Here it is paired with home-made soup and fresh salmon salad.

One person who is making a difference with diet and MS is Dr. Terry Wahls and her Wahl's Protocol. I had the great fortune of speaking with Dr. Wahls a few weeks ago for an article I was writing for Healthline.com - "Diet as a possible treatment for MS".   And wow!   So much great information going on with diet and MS.

The Wahl's Protocol is a modified paleolithic diet.  More about it click here. For those who do not know, Dr. Wahls has made diet a form of treatment for progressive MS.  Thank you Dr. Wahls!   I have been following and almost identical diet based on my own experience for over 15 years.  It is the number 1 "go to" when things are going bad with my MS.

And if you don't have fresh flowers, the fake ones are fun too!

First, I ask myself:  How is my diet?  Where am I going wrong?   And most of the time, this usually fixes it for m!   Like I say, everyone is different.  This is one reason I love the Wahl's Protocol - as it suggests elimination type diets to see what you personally are sensitive to and this is BIG!

Here is my article on Diet as a treatment for multiple sclerosis.

Here are some food common sensitivities:

Processed foods
Salt
Gluten
Red meat
Simple carbs
Sugar
Sodas
Diet anything / excitotoxins or NaStY for MS
Dairy....

FYI - I eat dairy.  Cheese.  I tried to take it out of my diet once and my boss told me to add it back as the rest of the staff was complaining about my horrid mood.  That was near 30 years ago and I haven't tried to remove it since~  I don't eat a lot of it but like it now and then.   I will willingly cut everything else out, before the cheese~

Lately I haven't been able to eat much meat.  My body, probably due to the warm summer months, is craving cooling salads and fresh fruit.  Unfortunately I like beer, especially in the summer months.  It's not the alcohol that bothers me but rather the carbs and gluten.  Talk about a weight gainer!  And then if I add bread....Oh dear save me.

Last winter I made the mistake of letting way too much beer, bread and gluten get into my diet.  Showing no restraint at all for about six months eventually led to a 15 pound weight gain, horrid dry skin and then the dreaded MS relapse!   Ugh.

My vertigo and vision got so bad that driving was out of the question...even just to a friends house.  Lethargic and inflamed my life consisted of laying in bed and "trying" to motivate.  Oh how I hate this feeling!   My skin was dry and eczema appeared all over.  Hair loss was abundant and my breath was so bad it even grossed me out.   What have I done?  So healthy last summer and then wowza, what a defeat brought on by my own weaknesses.

Time to make a change!

Feeling the summer spirit, light and fresh!

Nothing huge at first, just cut the carbs back down to no more than 10% of diet or so.  Eliminated processed foods again and removed gluten for the most part.  A little now and then does not bother me.  But a six pack of beer and loaf of bread is not considered moderation.   That's OK, the change feels good.

Back to juicing and healthy eating.  Beautiful summer produce combined with beans and grains cooked fresh are making the table.  Herbs from the garden and cheeses and meats from local farmers inspire this cook to create.


Some of recipes for your enjoyment:

Anti-inflammatory Rice Pudding

Obsessive Gaspacho 

Juice Recipes

Chia Pudding


Words of Advice:

Try different diets.  Work with nutritionists who understand MS and the different trending diets.  This is your health - it is your body.  Do not try whack-doodle eating schemes.  Try stuff that has worked for others, the key word being "try".  Give yourself a chance with different foods and see what you might be sensitive to.  Everyone is different!  

Add color and energy throughout your house with fresh flowers.

Here is my article on Diet as a treatment for multiple sclerosis. 

#takeTHATms!   

10 Tips for Living with Multiple Sclerosis - Holiday edition!

I first created this list for the holidays.  But really, they help anytime!  These are lifestyle changes that do make a difference.

As a certified MS life coach I'm often called into service during stressful times.  The tools we create and work with help us throughout the year, which is an added bonus.  

The holidays take planning when living with a chronic illness like MS.  Somethings are easy, some are more difficult.  

Here are 10 simple tricks to help us all get through the next few weeks a little calmer, a little better.  

Here's to thriving versus surviving.  

10 TIPS for Staying Healthy during the Holidays with Multiple Sclerosis

Lifestyle Tip #1:  Breathe Deep.  

One trick is to inhale to the count of four.  Hold for a count of six.  Exhale for eight.  

Breath into your lungs. Then let that breath seep into the belly. Then even further to the gut. 

Connecting our breath from brain, to gut, can open our minds!  

Try it and let me know!

Lifestyle Tip #2:  Finding gratitude.

Think of 1 thing each morning that you are grateful for and why. 

Write it down.    

Lifestyle Tip #3:  Watch what you eat.

Small portions.  Eat with INTENTION, not at the computer or on the hoof. 

 

Lifestyle Tip #4:  Sleep is utmost, but can be most difficult.  Keep that blue light off, no TV, devices, can help.  Reading, relaxing tea, yin yoga, essential oils, mediation and more. 

More about Sleeping and MS:   

How to Sleep with MS

Brain Restoration and Sleeping with Sabrina

Lifestyle Tip #5:  Find a Healthy Escape!  

Medication, music, coloring, strolling, exploring nature, photography,

cooking, gardening, art, reading and more.  

Be kind to you!   

Lifestyle Tip #6:  Seek advice and help.  

Whether an MS community group like BelongMS  - an app for those living with MS.

Click on link to download app - and join my channel "The Girl with MS".  

Find an in - person group, a therapist, counselor, your doctor.  You are not alone!

Lifestyle Tip #7:  Help Others

The act of helping others, whether volunteering or donating, creates an sense of happiness

that I find addicting. It also gives me a sense of purpose that gives my life substance.  

Lifestyle Tip #8:  Communicate.  

During these busy times, and really all times, it would behoove us to follow these simple rules:

Talk

Listen

Call a friend

Do not assume

Clarify

Lifestyle Tip #9:  Be Kind to YOU! 

Pamper yourself.  What makes you happy?  Do it!   

Bathe, spa time, massage, hiking, cooking...anything you want.  

Lifestyle Tip #10:  Smile.

See someone without a smile?

Give them yours!   

I accomplished several goals last week.  Took a nature sketching stroll with 

a group of people 

at our local gardens.  

Made me happy, created some hand-eye coordination, tried something new. 

That too is a key.  Something new.

Try something new!   

#takeTHATms!