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

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

Updated 2025

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



Posted by Caroline Craven 4 comments:
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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




SHARE your experience:

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Because together we’ve got this!

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


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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!

 


Posted by Caroline Craven 2 comments:
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10 Ways You Can Prepare To Age Well With MS

By guest writer, Anita Fernandes.

Everyone has to make lifestyle changes as they age but for people with multiple sclerosis, this will mean a lot more adaptations and adjustments.
​MS often causes “accelerated aging” where you need the kind of care given to people in their 70s while you are still in your 50s. Preparing to age well with MS will help you anticipate and overcome the challenges you will face so that you have a healthier and happier life. 
1. Create a daily routine 
Everyone should have a regular daily routine but when you have MS, your schedule is your best friend. Pushing yourself even slightly can cause fatigue so your daily schedule should focus on conserving energy. For instance, you can use a bath bench when showering so that you don’t get tired. Your morning routine is the most important as this will ensure that you are not too tired and have a better chance of having a good day. A regular routine also lowers your stress levels and improve your mood. Studies show that a positive mood is associated with decreased fatigue. 

Caroline @thegirlwithMs on one of her walks.
2. Learn to adapt 
One of the toughest things about living with MS is accepting that you have limitations. Most people see this as a loss of freedom and so they make choices that have a negative impacton their health. For instance, if heat aggravates your symptoms, you will have to say good bye to your weekly warm soaks. Instead, you can treat yourself to a massage which would be as relaxing and will help relax your muscles. Adaptability skills are very important as progression will bring with it new symptoms. 

3. Never skip your follow-ups 
You may have a lot of reasons to skip your medical appointment – you’re having trouble walking, you don’t have anyone to drive you to your appointment or you are just plain frustrated and fed up. Skipping your follow-ups will have a negative impact on your health and MS symptoms so this is one of those times when you need to force yourself to move. Contact your city office and find out if they offer free ride services for people with disabilities. 

4. Prepare for Progression
Hope for the best, prepare for the worst – clichĂ© but true. One of the best ways to prepare for aging with MS is to prepare for progression. It’s never too early to start researching accessible housing, assisted living and adaptive driving. Today, there areplenty of resources for information on aging with MS – everything from home care, transportation, in-home services, home modification and general legal services.

5. Learn to prioritize 
Living with MS requires you to focus on managing your symptoms and you might sacrifice activities that are “not essential” but improve your quality of life. Your health is a priority but hobbies and activities of interest are also important for your mental, emotional and physical well-being. Determine your priorities and then decide which tasks can be delegated to family, friends or helpers. Schedule your day so that you can perform important activities when your energy levels are highest. 

Caroline and Tim visiting the “Wall” at Reagan Library. Do what you can, when you can!

6. Start a health and wellness program early on
Health and wellness programs for people living with MS help people improve their mental and physical health. You can choose from a wide variety of adaptive exercise such as dance, aquatics and yoga. MS Focus offers several free classes or partial or full funding for gyms and wellness centers if required. Health and wellness programs help to reduce the stress and frustration with your limitations and instead appreciate all the things your body can do. 

7. Seek and Accept Help
People with MS are often embarrassed to ask for help and don’t want to impose on others. This is a huge mistake as it can severely impact your health and quality of life. Seek help and assistance as this will completely change your lifestyle and improve your mobility and freedom and allow you to enjoy a wider range of activities. 

8. Give back 
Living with MS requires help and assistance from family and friends. This can make you frustrated and guilty as you start to feel like a burden on your loved ones. Figure out ways in which you can help them as well as give back to your community. This will help you deal with negative thoughts and emotions and improve your self-worth. 

9. Work with a psychiatrist or psychologist
MS is associated with various psychiatric comorbidities including depression and anxiety. MS and mood disorders can cause a vicious cycle where MS leads to psychiatric comorbidities and these disorders have a negative neurologic impact. Working with these mental health professionals will help you learn new coping techniques to ensure good quality of life as you age.  

10. Keep a Positive Attitude
Living with MS means dealing with pain and frustration on a daily basis. Keeping a positive attitude when you have MS can be quite the challenge, especially on bad days. However, it is important that you don’t give in to negative emotions as this can lead to mental health issues. Your positive attitude will go a long way in helping you age well with MS. 
Simple steps like a regular diet, sleep and exercise schedule will help to alleviate your MS symptoms. When living with MS, it is important to work towards overall health and wellness as this will let you lead a more comfortable and happier life. 


That moment when I got to say hi to the beautiful and talented Jennifer Tilly.


Thank you @Everydayhealth for providing this wonderful article by guest writer, Anita Fernandes.  


Author Bio -Anita Fernandes has been writing extensively on health and wellness for over a decade. She has expertise in nutrition, fitness, public health, and weight loss and has contributed content to a variety of leading digital health publishers. Anita has a unique perspective on healthy living and lifestyle, as she has battled and overcome eating disorders and obesity. She shares her experiences in an effort to help others overcome the physical and mental health problems that can sometimes seem insurmountable. 
Posted by Caroline Craven 8 comments:
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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 exacerbations from mismanagement I must remember this tailing wind of emotions that have entwined me. 

Ask Caroline! Join me at Belong.MS - Certified Life Coach and Living with MS since 2001

Ask Caroline! Join me at Belong.MS - Certified Life Coach and Living with MS since 2001 
Click on image above to Download the App for A Safe and Confidential MS Community
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Living with MS since 2001. "Make it Positive" and #takeTHATms!

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