Journaling as Therapy for Multiple Sclerosis

By: Meagan Freeman 

Unfortunately, things do not always work out the way we want them to. Marriages end, friendships change, and illness sometimes make our decisions for us. I often find myself worrying about the future, and thoughts invade my mind during stressful moments. Will I ever have the chance to swim on a beach in the Mediterranean? Will I see Europe the way I have always wanted? Will my children be embarrassed to be in public with me with my assistive devices? Boy, my thoughts can sure get dark at times, and anxiety can take hold and pull me out of reality very quickly if I allow it to.

Writing can be the most therapeutic experience.

No matter what challenge I am coping with, I find that if I sit down and pour those feelings onto paper, I am refreshed and renewed. It is much like traditional therapy with a counselor, except the paper is your therapist. The words are your medication, and the process of putting your thoughts and emotions into words is your cure.

I am a rather shy person, and some would say I am quiet and private. I have a few extremely close friends and family, but I keep my circle small. The interesting thing is, when I sit down to write I have no trouble communicating and expressing my feelings. Words are my favorite form of expression. Whereas spoken words leave your mouth and cannot return, written words can be erased, changed, and edited after you have reviewed them.

When coping with a chronic illness like MS, expression of feelings is incredibly important. It is so easy to feel alone and without friends who understand. Journaling and writing are great options for those who feel uncomfortable talking. “People who journal find a higher sense of self-awareness and are able to reduce anxiety and gain a sense of empowerment. Many people who struggle with deep emotional conflicts or traumas are unable to express their feelings in a verbal or physical way. Journaling allows a person the freedom of expression without fear of retaliation, frustration, or humiliation.” (http://www.goodtherapy.org/journal-therapy.html#)

My journaling experience has evolved into my blog, and eventually became my recently published book. My hope is that my writing will continue to help me express the feelings I have about each challenge with MS, parenting, and life in general. In addition, I may have the opportunity to continue to heal others through this writing.

In my practice as Family Nurse Practitioner, I encouraged my patients to journal when traditional therapy was not appealing to them. Some of my patients used writing as an adjunct to traditional therapy, and found it extremely beneficial. From the feedback I received from my patients, my suspicions about the therapeutic effects of writing were confirmed. I would encourage anyone coping with illness, trauma, death, or simply life stress to try jotting down a few ideas onto paper. The following are excellent resources for journaling as therapy:

http://www.goodtherapy.org/journal-therapy.html

http://www.psychologytoday.com/blog/arts-and-health/201311/top-ten-art-therapy-visual-journaling-prompts

 

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

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Mindfulness and Meditation for Multiple Sclerosis

“Meditation can help us embrace our worries, our fear, our anger; and that is very healing. We let our own natural capacity of healing do the work.” -Thich Nhat Hanh

Studies have continued to show how creating a mindfulness or meditation practice can assist those in reducing fatigue, depression, and anxiety associated with living with a chronic illness. Although the study outcomes are positive, individuals are still wary about starting a practice of their own, with fear that they do not know how to start. Starting a meditation or mindfulness practice can be made easier if you create a space in your home specifically for meditation, and commit to a practice schedule.

Creating a Meditation Space
We define the rooms in our home based on their activities. In the dining room, we nourish our bodies and prepare meals for the family. In the living room, we entertain guests or watch television. Defining a space in the home based on relaxation and mediation is important. You have a desk to pay bills, why not have an area to meditate. By designing a space for meditation you are mentally preparing yourself for the task.

You do not need an entire room to meditate, a corner of a room would suffice as long as this is a dedicated space that would not be cluttered or interrupted by others in the household. Decorate your space with images that bring you warmth and peace. Some choose to light candles or incense to promote this sense. The comfort of your space is important as you may be sitting for a long period of time. Pillows and blankets are often used to create a more comfortable sitting environment.

Practice
There are no rights and wrongs to a meditation practice as long as you achieve the desired outcome. Whether this meditation time is to relieve stress or become more in tuned to your body, you should be able to measure the outcome and notice a change. Start by slowly closing your eyes and focusing on your breath. Breathe slowly and deeply, noticing how each breath moves through your body. Don’t force your breathing, breathe as natural as possible; in through the nose and out through your mouth. Let your thoughts flow through you. Calming the mind is often the most challenging part of meditation, but becomes easier the more you practice. Acknowledge the thoughts as they pass through your mind and bring your focus back to your breathing.

Guided meditations can be found online, on CD’s, or even podcasts. Working through a guided meditation may be helpful to a beginner while trying to hone in and create their meditation practice. Remember, there is no right and wrong to this. It may be difficult at first, but that does not mean that you “aren’t doing it right”. Stick with it, start slowly, and keep track of your progress.

Have you developed a meditation practice in your home? How did you define your space?

References:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3882962/
http://www.webmd.com/multiple-sclerosis/news/20100927/mindfulness-meditation-vs-multiple-sclerosis
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3463050/

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Positive Surroundings

I recently saw a quote that said “Negativity may knock at your door, but that doesn’t mean you have to let it in.” This really resonated because there are times in life that negativity does try to seep in and corrupt happiness and positive feelings. It emits toxicity and wants to take control over everything – and sometimes it’s hard not to feed into it and become consumed by it, especially when it presents with life circumstances that are unexpected and unwelcome.

It’s inevitable that at some point throughout life everyone experiences difficult times that unfortunately they have no control over. Things happen, obstacles or illnesses that we can’t foresee, but it’s important to know the aspects of your life that you do have control over. The people and influences that you choose to make a part of your life can be positive ones – you can make the choice to surround yourself with positive reinforcement and encouragement by choosing who you want to be a part of your inner support network. Are there times that we can’t control who are a part of our day to day lives? Of course. But sometimes you can control the frequency or duration of these interactions with others – even though sometimes this may be more difficult to accomplish. Let’s say if it’s family or friends that emit negativity, it can be more challenging to control and limit these exchanges because of the nature of the relationship. However, if there are moments that their negativity is all consuming and blocks out all that can be uplifting and positive, you can respectfully remove yourself from the situation.

One way to decrease negative energy is to purposely and consciously surround yourself with positive energy. Doing things you enjoy, communicating with others who make you feel supported and inspired and letting yourself experience good moments are ways to increase affirmation and optimism. When you have the chance to remove yourself from a negative encounter, be sure to book end it with a positive one, so that way at the end of the day, light conquers all.

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Life with MS: My 5 Ways to Stay Happy, Lollipops and All

By: Jeri Burtchell

Let’s face it, even days that start out all “sunshine and lollipops” sometimes wind up with you getting sunburned and the lollipop stuck in your hair. You can’t prepare for the negative things that happen in life and those with MS know what I mean when I say we have our fair share of them.

Whether it’s awakening to an unruly new symptom, or spilling all your medicine on the floor when the top finally gives, you know what I’m talking about. Some days it seems like Murphy’s is the law of the kingdom.

jeri blogBut what can you do? Well if you sense an impending bad mood brought on by circumstances beyond your control, I say put yourself in time out…on the beach…in a hammock. And don’t come back until your attitude is better. If that were possible we’d all be heading for the white sands and drinks with umbrellas.

Okay so that advice was just wishful thinking and not exactly helpful, so I’ll make it up to you before I ruin your day and risk your wrath. Here are five sure-fire ways to happy-up your day.*

  1. Laugh at it. When circumstances threaten to punch a hole in your life raft, hang on. Take a step back (provided it was a symbolic life raft we’re talking about) and look at the big picture. Surely there has to be something funny about this that you’re really going to laugh at later. Granted sometimes it’s years later, but you’ll laugh. Try to recognize it now.
  2. Take a nap. Seriously. Sometimes it seems like everything is going wrong, and maybe it is. But it could just be that fatigue has made life temporarily insurmountable. Just rest a while and sleep on it. Most of the time, for me anyhow, I will awaken feeling like I’ve got a fresh start (and even thinking it’s morning again when it’s actually 3 in the afternoon).
  3. Hug a pet. Unless it was your awkward doberman who knocked the pill bottle out of your hands to begin with, our pets have a way of making it all better. A furry snuggle can drain the negativity and stress from your body and has even been proven to lower blood pressure.
  4. Get back to nature. No pets to hug? Next time you trip over a laundry pile or discover the leftovers were out all night, try finding a quiet spot outside to commune with nature and reflect on something that redirects your mind and brings you happiness. A little sunshine (with proper sunscreen) does wonders for elevating your mood. And bird songs don’t hurt either.
  5. Phone a friend. Make sure you have that one go-to friend on speed dial. Someone whose voice brings you joy even if they’re reciting the alphabet. You know the person. But DON’T talk about your problems–that’s not the point! Distract yourself by asking them how things are going. Then really listen. By focusing outward you stop dwelling on your own negatives and before long you will be happy again.

You probably think much of this is silly nonsense, but just trust me. Give it a try. Life’s too short to stay down in the dumps and you really do have the power to create your own positivity. We might not be able to choose what life throws at us, but we don’t have to keep going around with lollipops stuck in our hair either.

*Your mileage may vary. Batteries not included. Some assembly required. 🙂

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

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CANNONBALLLLL!!!

Cajun Cannonballs - FB 2Swim for MS participant Joshua Piro and the Cajun Cannonballs have done a fundraiser every Fourth of July to raise awareness of MS and funds for MSAA’s programs and services. This year, MSAA invites you to join the fun and get cannonballing this holiday weekend in support of the MS community. So grab your friends and family and Cannonball for MS! Submit your pictures by using #SwimForMS on social media and you could win some cool Swim for MS gear. Please visit SwimForMS.org/Support to register today.

Even if you’re not a fan of the water, there is still a way you can get involved and help improve lives today with MSAA. We’re looking for enthusiastic, passionate people like you to join our Street Squad!  Street Squad members work to spread the word about the Swim for MS fundraiser and raise awareness for MS.

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The MS Hug – Our community shares their experiences

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MS is associated with a whole host of common symptoms, like numbness and tingling, vision problems, weakness, cognitive deficits, among many others. But then there are symptoms that are less “text book,” and therefore not as well defined. One such symptom is the MS Hug. Cathy Chester, one of the contributors and patient advocates who writes regularly for MultipleSclerosis.net, wrote a wonderful article describing the MS hug, including her own personal experience with this frustrating symptom. It turns out that many of our community members also deal with the MS Hug on a regular basis, and many of them shared their thoughts with us in response to Cathy’s article. Here’s what our community had to say:

I didn’t know what an MS Hug was the first time I had one

  • I’ve had it happen a few times. The first time I went to the emergency room because I thought I was having a heart attack.
  • I had one LONG before I was diagnosed, after the birth of my child. I only recently read about it and realized what it actually was!
  • I have had two – one before I was diagnosed. I took an ambulance ride I thought I was having a heart attack. I then had one about a month ago. It hurt so badly it felt like my lungs were being squeezed.
  • I had my first MS attack when I was 12 weeks pregnant I thought I was having a heart attack couldn’t even lift my left arm up.
  • I’ve experienced the MS hug 3 times in 3 years. It’s a scary feeling. I felt like my entire body was in a vice. I don’t ever want to experience one again, not sure what brought it on. I thought I was having a heart attack, but thankfully that wasn’t the case.
  • I can’t believe this. I just recently, as in yesterday, started having this “hug” pain and wasn’t sure if I pulled a muscle or if it was another wonderful MS “thing” that I was experiencing…thank goodness I came across this.

I find ways to cope with an MS Hug

  • I do adaptive yoga for MS (Yoga Moves MS). They have taught us a banana stretch lying flat on our backs. I do this every day. I use to have the hugs several times a day, but now maybe once a month if at all.
  • I can feel it coming on, so I just have to relax and ride it out! It can take 48 hours or more.

I really struggle with MS Hugs

  • These are the worst ever hugs; I wish that they would never happen to us.
  • I get a quarter hug – just the front on one side – usually the left. That’s enough for me. I don’t like it at all!
  • It’s more like the MS python!
  • It’s the worse hug in the world. I don’t want another at all.
  • I get them sometimes, I think it’s like a big snake wrapping itself around me and squeezing tight! It isn’t very pleasant at all!
  • When I get over-tired, I get squeezed.
  • They are horrible – it’s painful and hard to breathe. Those are the kind of hugs I can do without!!!
  • I had one recently during a relapse…no fun!
  • I take Flexeril almost daily and it still hurts. I also was glad to come across this very thing a couple weeks ago too!
  • It isn’t fun at all, since you never know when it’s going to hit.
  • Hugs are supposed to be nice. This is more like a vice.
  • I call it the death grip because it felt like a boa constrictor was squeezing me for almost 3 days.

People who don’t have MS don’t understand what it’s like

  • I stopped telling anybody about the hugs and any other issues or pain. Nobody understands unless they have experienced it. My husband says, “just work through it!!” For everything. Really?
  • My husband doesn’t get it. When I am going through a 24 hour fatigue he says I get tired to I just don’t sleep like you do I just deal with it. Ugh! It’s just not worth an argument

Even my doctors don’t know what an MS hug is

  • The first MS hug I’ve ever had I thought it was a heart attack. The hospital checked me out and I was fine. My Neurologist said that it was a MS hug, like I would know this. The doctor at the hospital did not know this. Go figure.
  • My doctors don’t even know what it is, like usual with my symptoms they say its not related.
  • Had one of these 5 years ago and I was rushed to hospital with a suspected heart attack, as the medical staff had never heard of an MS Hug!

How about you? Have you ever had an MS Hug? What have you done to find relief? Share with us in the comments!

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Never an Easy Season with MS

By: Matt Cavallo

I was really excited. My allergies were horrible and I was feeling absolutely miserable. Why does this excite me you ask? When I feel horrible, I get inspired to write and was going to write a piece on allergies and MS as a follow-up to last year’s, Is There a Relationship between MS, Allergies and Histamine blog.

Then, this happened to my local weather in Arizona:

matt blog

Out here in Arizona, we say that three straight days over 100 degrees kills all the pollen. I don’t know if this is true or not, but my allergies certainly haven’t been bothering me since it got into the 100’s at about Friday of last week.

But guess what? The heat has been killing me!

Luckily, I got a Kool-Max cooling vest, similar to those in the MSAA’s Cooling Program. Now, even in the dog-days of summer, I can still participate in activities or chores and not feel trapped inside by the summer heat.

This got me to thinking, is there ever a perfect season to have MS? We all know that the summer heat, no matter where you live, is not good for MS. The symptoms of heat exposure can cause a pseudoexacerbation, or brief episode of neurological symptoms not classified as a relapse. These pseudoexacerbations can come and go all summer long as the heat and humidity persist.

However, during the cold dark of winter, us MSers yearn for a hot summer day. The low light of winter is not generally considered good for people with a Vitamin D deficiency, as most of us living with MS may experience. Winter also presents trip hazards with ice and snowy conditions, so those of us more prone to falls have a harder time getting outdoors and staying active during the winter.

Fall presents many of the same trip hazards. As soon as the leaves turn colors, they drop to the ground and become slippery to walk on. Fall also has dramatic temperature fluctuations where it can be summer hot one day and then brutally cold the next. This is where cold and flu season start to come into play along with the pseudoexacerbation possibility from those really gorgeous summer-like fall days.

That leaves spring as the only possibility for an easy season living with MS, am I right? Wrong. Spring is the reason I started writing this blog. It was nice this year, but the pollen kept me from enjoying it. I could not differentiate from an MS day or a sick-with-allergy day. The inability to breathe really caused excess fatigue rendering me unable to discern the difference between allergies and MS symptoms.

The truth is there is no easy season when you live with multiple sclerosis. However, each day is what you make of it. Don’t let the changing seasons stop you from living your life, rather adapt with the seasons and plan accordingly. Wear sunscreen, stay cool and don’t let MS stop you from having the best summer ever!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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How Cool Are You?

Summer is fast approaching, so now is a perfect time to remind everyone about MSAA’s Cooling Program.

As the heat starts to build, so do requests for this free MSAA service, so please place your order now before the summer rush. Please know that there is a five-year wait period to reorder any cooling products if you have already received items through the MSAA Cooling Program.

You can download the MSAA Cooling Program application or call MSAA at (800) 532-7667, ext. 130 to request an application by mail. Have a cool and fun summer!


Not eligible to apply for MSAA’s Cooling Program? The following Stay Cool Tips can be used to help fight the heat:

  • Portable or personal fans are an inexpensive and quick way to cool the body. The fan helps to circulate the hot air and move it away from the body.
    • Try putting a cool rag in front of the fan to circulate the cold condensation from the rag.
  • Be mindful of clothing choices. Wear lightweight and loose clothing that allow for air circulation.
    • Embrace light colors. Dark colors absorb light and heat, light colors reflect light.
  • Search for indoor activities in local shopping malls or stores where air conditioning is always free.
    • Window shopping at the mall or a mid-day matinee at the movie theatre is a great way to take advantage of the often cool air provided at these locations.
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Summer Planning and Travel Resources: An MSAA Blog Re-cap

As planning begins for summer vacations or trips, many are left searching or wondering what resources may be available to help with planning. MSAA guest bloggers Matt Cavallo and Jeri Burtchell have written over the years to provide some helpful tips for the travelling MS community.

In Air Travel Tips for the MS Community; Matt, a seasoned traveler, provides his Five Steps to Stress-Free Air Travel for People Living with MS. Matt writes, “Travel is stressful for everyone. Airports are big, busy and fast-paced. Security lines can be long and the thought of standing, unpacking, and repacking at TSA is enough to unravel even the most seasoned traveler”.

Often times the smaller details are those which are overlooked when planning a trip. Those small details such as the size of your carry-on, or the snacks packed in your bag can often make or break a trip. In Jeri’s Summer Travel Tips for Flying with MS Part 1 and Part 2, she identifies some of those smaller details that should be thought of ahead of time in order for smooth sailing….or flying in that matter.

We often learn through the experiences of others. Please share your flying or travel tips in the comments below.

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Summertime Memories

The summer season usually conjures up warm memories for me (sorry, no pun intended!) of times when things were simpler being young and summer was the best time of year. Growing up, my family used to gather at my aunt and uncle’s house for get-togethers and special occasions, especially during the summer months because their house was attached to a private elementary school where there was a lot of open area. They acted as caretakers to the school grounds so we had access to two different playgrounds equipped with slides, swing sets and jungle gym activities and a large tot-lot for playing basketball and volleyball. We often had family barbecues there and were so excited when the 4th of July holiday was celebrated because we could watch the fireworks right from their porch. These are some of my best memories I hold from my childhood – playing outside with relatives and being with family and thinking the summer should never end.

As we grow older our memories stay with us – as special pieces of time you’ve stored for yourself to take out and reminisce over whenever you’re feeling sentimental, or just want to recall something good. There are certain triggers that can activate these memories – songs, movies, places, things. For me, my summer memories are triggered by the smell of flowers and grass, barbecue grilling – and the charcoal kind, not the fancier gas grill devices seen all over the place nowadays. Rice Krispy treats – my grandmother used to make the best treats for summer occasions. And mosquito bites – I know this one is a bit strange, but those little buggers would eat us alive playing outside during the summer!

The point is, no matter what the memory is or its trigger, these precious fragments of time that represent moments throughout our lives are something to treasure and hold onto with care. They allow us to go back to times we remember fondly and that gives us hope that the memories could possibly be recreated again someday.

What’s your favorite summertime memory?

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