A Year of Self-Care, Multiple Sclerosis and Covid Quarantine

Well, that was crazy. Here's to a more settling year - one of SELF-CARE.

Staying safe and sane are my two goals.

Covid and the quarantine brought out some interesting thoughts, actions and behavior over the past year. Some of it fun and new, some of it not so great.

I dabbled in cooking and sourdough, in painting and drawing, and in self exploration.

A few friends passed this year and tragedy struck many. My life was getting me down but I started flipping it around and finding some peace again.

These are just a few tips I'm using to get started on the right track this year.

1. Make a List - I made a covid bucket list and now I'm onto my next one. Of course I make lists for everything because my memory is not the best. But this was just a list of things I wanted to try during quarantine, like the painting and artistic side that doesn't get to share itself as much.

2. Create a Mantra - I created this one to help me through the coming year: "I see myself healthy and strong this year. I hear myself saying positive thoughts and words of encouragement to myself and others. I am open to using this time to learn new things and love myself with compassion."

3. Find Community - While it can't be done in person these days, community support is vital to our mental well-being. There are several options online for finding virtual friendship with others living with MS - you know, the ones who get us? I run a community on the Belong.life app, BelongMS, called Girl with MS. Click here for the app. I find this a safe place to be where we can ask a lot of questions and get answers from those living with MS. They also have a variety of channels to explore.

4. Set Boundaries - When a bunch of people are quarantined in one house, well, that can be a little annoying. Maybe a lot annoying. It's important to set boundaries and ask for help. They might include a "do not disturb" sign, or a limit on the amount of cooking and chores that need doing, asking for help and communicating can help with this trick. Set time aside for you and your health.

5. Connect with your Doctor - Make sure you are in connection with your doctor and adhering to vitamins and medicine. I found it very easy to slip into some bad habits about taking my supplements. I've kicked myself around and no more procrastinating! But when things were slipping I called my neuro and we spoke. I was experiencing extreme anxiety and he helped with some medicine and by listening. I needed those ears to hear me.

6. Be Kind and Patient - This is a message for us and for others. Let's cradle our hearts in our hands and love ourselves unending. Let's be kind to ourselves and patient. Let's take this energy into the world and create a positive aura around us. We can do this.

7. Social Media Neurologists - There are several top notch, international renown neurologists with youtube channels, facebook pages and podcasts, all of which have clinically researched information. Meaning they know their stuff and have the expertise to back it!

Here are some of my favorite folks to follow on Twitter:

1. Dr. Barry Singer - @drbarrysinger
Neurologist and Director of The MS Center for Innovations in Care in St. Louis, Missouri. Learn more at MS Living Well.

2. Dr. Brandon Beaber - @Brandon_Beaber
Neurologist and MS Specialist. Author of the book, “Resilience in the Face of Multiple Sclerosis”

3. Dr. Aaron Boster - @AaronBosterMD
The Boster Center for MS in Columbus, Ohio. Leading expert in MS who is always sharing awesome tips!
Dr. Boster helped me understand high-dose biotin in this interview and article posted on my blog. Click here for his YouTube Channel

4. Dr. Jaime Imitola - @DrJim4MS
Director of University of Connecticut Multiple Sclerosis and Neuroimmunology work for a cure integrating stem cells, genetic and immunity. Dr. Jaime has helped me with many of my Healthline articles. He knows his stuff!

Here's a podcast with me and Dr. Singer. I needed a reminder about cognition!

MS Living Well Podcast 9: Cognition and Multiple Sclerosis

Barry Singer MD, Director of The MS Center for Innovations in Care interviews:
Caroline Craven aka The Girl with MS is a certified life coach, writer and motivation speaker. Her writing focuses on articles in health journalism and highly rated blog. Her blog post topics range from personal experiences, research-based articles, recipes, life hacks and resources.

Click For Apple Podcasts

Click For MS Living Well Podcast

There is so much more we can do but this is a start. Take care of us. Healthy eating, exercising, mental stimulation, rest, asking for help, seeking medical advice, and finding support. These are all part of the self-care regime.

I’ve also been enjoying my Cubii! Remember that easy to use adaptive treadmill. Well, it’s one handy tool right now. Cubii has special classes you can take online:

Carrie'e Cardio
Cubii Pyramid with weights or water bottles workout
Cubii functional fitness with Anne
Get your water bottle or weights ready for a Cubii workout

Click here to join the facebook classes online!

Click here to learn more about Cubii.

Well, this is my game plan for 2021. Join me and let's do this!

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

Updated 2021

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

My journey with MS Parts 1, 2, 3 - Going Rogue in Guatemala

New Podcast!

Diagnosed in 2001, it’s been awhile. Remembering how it came about in Guatemala and what I went through reminds me of how far I have come.

Thank you Jessie Ace and @DISabledtoENabled for hosting me on their podcast. Jessie Ace is amazing and lives with MS. She’s a bright light in this world and I feel blessed to be a part of her program.

“Twenty years ago couldn’t walk or see unassisted. Today she is thriving and helping thousands of people with MS learn to thrive too. Her award-winning blog (Girl with MS) shares tips and tricks that she’s picked up as a certified life coach, motivational speaker, health journalist, and MS advocate. Years of studying alternative and holistic nutrition and lifestyle skills have given this Girl with MS a chance at life again.

ENabled warriors, please help me in welcoming to the show the amazing… “

Want to WIN a copy of Jessie’s best selling ENabled Warrior Symptom Tracker?

Jessie’s book is called the ENabled Warrior Symptom Tracker Book. The book helps people with chronic illnesses to manage and track their symptoms, allows them to instantly spot triggers, and allows for accurate notes to be recorded and given to doctors.

It contains:

Monthly Calendars
Appointment Diaries
Menstrual Tracker
Exercise
Goal setting
Daily sheets for positivity and growth
Food and hydration diaries
Medication/supplement tracker
Treatment tracker
Medical quick notes for easy reference in appointments
And a 1 and 3 month graphs to record information on for your doctors.

There is also a bundle included with the book too which includes an ebook on how to remember everything, cheatsheets for how to get more time in your day, bookmarks to allow you to mark the pages, 'I AM' positive statement cards, in-depth symptom, and pain tracker sheets and extra graph sheets for easy use.

Enter the giveaway by going to www.mybookgiveaway.com to enter your details in Facebook messenger (lookout for a link that will pop up!)

Or if you’re impatient (like me) and want yours now, Claim your discounted book from www.enabledwarriors.org/st

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* B O O K C L U B *
This week's book:

Lance Armstrong - It's not about the bike.
Get your copy here: https://amzn.to/3k69GHb

Stay #ENabled and #takeTHATms!

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!