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

Posted with Blogsy

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

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MS Diet - Try this food, not that food.

One of the first things everyone asks me these days is if I follow a certain diet, or avoid certain foods. The answer is a resounding YES. I'd love to say that eating anything and everything is OK but it's not. Just recently my diet changed, for the worse, and after six months my MS, along with everything else in my body, went absolutely haywire.

Not every MS patient should follow the same diet. Everyone is different, just as their illness. Recommend instead the trial and error method. Remove a variety of food, one at a time, and see if it affects your MS.

Some of the foods that cause major problems include:

Processed foods (too many additive, hidden wheat and sodium)
Gluten
Carbohydrates in general
Dairy (don't include me in this group. You do not want to be around me if you remove my cheese. I get downright nasty).
Red meat
Other meat
Fried food
High sodium

Remove them for a good couple of months to truly feel a difference. Three - six months is good.

Some folks respond well after going vegan or gluten free. Some do better with a paleo type plan. Try different things and feel how your body responds. Make adjustments and learn from your trials.

Major triggers for me are gluten and carbohydrates. For example last year, my diet went from about 10% simple carbs to more like 50% simple carbs, letting myself eat anything and everything that looked good. For the first couple of months my body kept up, and my body stayed slim and fit. Lean and mean. THEN, it's as if someone turned off the metabolism. Ready for winter was this girl with an additional 15 pounds. Actually 20 pounds but already lost 5. UGH and geez. Nothing fits. Haven't had this problem in 15 years. The ONLY change made was allowing the gluten and carbs to take over my diet. The meat consumption was down and grain consumption increased. Portion sizes increases. Eating is if readying for a marathon, without the matching calorie burning activity. Time to make a change!

Reining in the cravings meant changing habits back to where they were last year. 10% simple carbs. That means no six-packs of beer every weekend. No bottles of wine with french bread and home made cheese. Well, OK, we can have all of these as long as it's in moderation. Key word here - moderation.

Just bringing this awareness to the forefront has allowed me to make many healthy changes. The weight is coming off and the MS seems to be subsiding a bit. This extra weight caused the MS to flare up bad, so looking forward to being the lean, mean fighting machine this girl was for the past 15 years.

Every person is different and so are their diet needs. But I do believe strongly that clean, natural eating is the way to go. Buying local, at farmers markets and learning to cook are two ways to increase one's appreciation for good quality food. And we are what we eat. Eat like crap, look like crap. Eat like a healthy girl, look like a healthy girl.

Time to do this!

#takethatMS

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

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!

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

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!