Girl with MS - Tips & Tools for Thriving with Multiple Sclerosis

Caroline Craven - Certified Life Coach, MS Advocate, Motivational Speaker, Writer & Patient Expert living with Multiple Sclerosis.

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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!

 


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Girl with MS Support Group & BelongMS are here to help!

Help!   I definitely need extra support during these epic times.  How about you?  


As many of you know, my focus is Conquering MS with Self-Care.  Self-Care means a lot to different people but for me it represents a combination of awareness, education, action, and medical expertise.  As people living with MS, the need for social connection is essential in keeping us sane. At least it is for me!  


One of my most asked questions is “Do you use an app or other social media to help with your MS?” And the answer is Yes. 

I’ve used and tried different apps and social media outlets over the years and each has slightly different offerings and options.  After being shut down by facebook due to a hacker, (My story here) I knew I needed something more reliable.  

For my current life with MS, I have chosen BelongMS (part of Belong.life) to share my twenty years of experience to help others.   

We created a Girl with MS support group.  And it’s not just for girls. As a certified life  coach, nutritional educator, health journalist and someone living with MS for twenty years, we have stuff to talk about!  There are many tips and tricks and just over all support that will help us live better with MS. Will help us all say, #takeTHATms!  

  


And now we can chat directly via Belong.  Anyone with MS can join Belong and find tons of support, friendship, expert advise and even clinical trials. Once the Belong app is downloaded and you have registered (click here for app), then you can scroll down and see the different support groups.  Mine is circled below and is the Girl with MS.  Join me!  




The Girl with MS Channel is all about Self-Care.  We’ll talk about different ways to take care of ourselves, ways to find ourselves and ways to support each other.  



Because if I don't take care of myself, this is how I end up feeling:  

  

But when I do take those extra steps, those extra little measures to take care of myself like medical visits, and extra caution,



I can have days like this: 



I’m looking forward to “seeing” you on Belong and having a channel to talk directly with all of my MS friends out there.  If you already have Belong App, then look me up and let’s chat!   


MS is a challenge but together we’re stronger.  Together we can support ourselves with questions, answers, encouragement and laughter.  Together we can BELONG!    


And together we can say #takeTHATms! 



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

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!   

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Cannabis Awareness, Pain Management & Multiple Sclerosis

 “The light whispering down the hall is enough to encourage a restless night.  Breaking sleep to use the restroom, my mind wanders, can comfort return long enough to fall back to sleep or will this be yet another endless battle of little rest and much tossing?” 

———  Journal entry, April 1, 2022.  

 

 

What does a pain-free life mean to those living with chronic illnesses like multiple sclerosis (MS)?  Or to anyone who suffers needlessly in pain while the body and mind try to figure out how to find peace? 




Chronic pain causes anxiety, loss of sleep and depression if not more.  It can decrease mental focus and moods may be altered as the pain and inflammation creep and ravage the body from within.  

 

The first response from doctors and health care professionals is often NSAIDS (ibuprofen, etc) and narcotics such as oxycodone and norco.  But maybe there are other options.  

 

The opioid problem is world known: too many easy-to-acquire drugs that can cause addiction and death. And do they really take the pain away?  

 

One option gaining steam in research and use is cannabis, specifically the CBD derived from a cannabis plant.  CBD is not mind altering such as its counter point THC.  





Click here to learn more about marijuana, hemp, THC and CBD.

 

I sat down and chatted with Todd Vanderah, PhD., of the University of Arizona Health Sciences. 

 

Vanderah has researched cannabinoids for more than two decades.  He says, “It’s unfortunate that the whole general population of cannabinoids fall under the biases idea people have about medical and recreational marijuana, because you can’t lump it all together.  Nature has made a lot of useful plants, from aspirin to chemotherapeutic to antibiotics, and there are things in cannabis that could be medicinally beneficial.”  

 

Read more About Vanderah and the Smoke around Cannabis: click here

 

Vanderah is a member of the UArizona Health Sciences Comprehensive Pain and Addiction Center.  

 

Much of his work has involved the endo-cannabinoid system within our bodies and how it interacts with the body, with pain and with cannabinoids taken internally.  

 

“Everybody has an inner cannabinoid system,” explained Vanderah.  “We produce higher levels of cannabinoids than endorphins,” and further explains that it is “a lipid type structure found throughout body.”   

 

Vanderah’s quest is to see how the cannabinoid system  is affected by pain – directly interacting with nerves conducting pain signal.  

 

“Cannabis works on inflammation by decreasing inflammatory mediators that promote pain.  It has an affect on the anxiety caused by pain. And it provides a reward pathway so that people say, ‘I feel ok’”.  


“The reward factor is when the euphoric feeling overrides the pain.  Cannabinoids provide this reward factor but not to extent as opioids.   When you feel the euphoric part you don’t feel the pain.”  


“There is a reward component so possibly there could be some addiction,” says Vanderah.   

 

He further explained.  What’s unique within the endogenous cannabinoids, are the differences in the ability to be produced.  There are genetic differences and sexual differences.  These differences were found in a small study on Migraine patients. 

 

Click here for Cannabis and Migraine Study.

 

There is much to learn about cannabis from sleeping issues, inflammation and pain.  Different types of cannabinoids work on different people.  It’s as snowflake as MS.  

 

Vanderah’s work focuses work on the cannabinoid, CB2, which tends to be on the immune cells, throughout the body and within brain and nervous system. 

 

The yin and yang of pain in body

 

Simply put:  Prostaglandins cause pain. Lipids cause inflammation.  Interestingly, these are very similar to endogenous cannabinoids in the body, which is another lipid system that limits the pain.   One causes pain, one eases pain, all in our own bodies. 

 

Vanderah said there is much to learn about CB2 receptors and the inner cannabinoid system.  Some people may lack CB2 receptors.  Or their bodies may have adjusted and changed over time.  Possibly the body produces less as one gets older Do people lack the CB2 receptors?  

 

People living with MS

 

It would be nice to know what happens to the cannabinoid system in people living with MS.  


“[MS] is hard to study,” explained Vanderah, “Cannabinoids are illegal on the federal level.  There could be more money spent and we would know more.”

 

I found the following quite interesting.  If a drug has an approved FDA medical use, then it is considered a schedule 2.  THC, is schedule 2 but CBD is schedule 1 as there had not been an FDA approved drug using it.  But this will change as a drug has been approved using CBD.  

 

The Senate approved to spend more money in research on medical cannabis.  We need to know what it does long term, short term and side affects.  People need to know the risk to benefit ratio so they can make formative judgements on their own.  

 

I am  so glad that the federal government is supporting research to learn more! 



 

“Did you know there are over 500 chemicals in one marijuana plant?  Imagine what can we learn,” Vanderah shared.  He is looking forward to bringing in more researchers to continue this work.  We all are!  

 

It regulates many things – The endogenous cannabinoid system.   I like to say, “It gets things in balance.”  

 

“Opioids can cause more pain in a way,” explained Vanderah.  “If we shut down all the pain, the body is still trying to tell us something.”  In my laymen’s term, the body needs to express it’s pain so as we shut it down it may produce more pain.  But the natural reaction of the inner cannabinoid system would not create more pain. 

 

If cannabinoids are present they act as an anti-inflammatory and reduce pain.  They can also decrease bone wasting as found in osteoporosis.   This is great to know!   

 

BUT We need more research! 


Research is a challenge.  


CBD is not federally legal.  Creating an MS model for preclinical trial is difficult.   

 

So, I think it’s time for us to start a go fund me for research in CBD and MS!    Watch this spot.  There is so much more information that I may be adding to this post.  


But it’s 4:20 on 4:20 so I’m off to post this blog and celebrate life! 


Thank you UA Health Sciences for all you are doing to help us live better!   


What’s the difference between Delta 9 THC and Delta 8 THC?  


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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



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Living with MS since 2001. "Make it Positive" and #takeTHATms!

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