Relationship Changes: How an MS Diagnosis Can Change Relationships

By: Stacie Prada

The personal growth that can come after an MS diagnosis affects our relationships drastically. In facing our fears, the unpredictability of MS, and grieving the future we envisioned, our relationships can’t help but change. The experience reveals the dynamics that no longer support our mental and physical health or the future we now need. A friendship or marriage can blossom, or it can crumble from the magnitude and pace of change. And the outcome doesn’t dictate the value of the relationship, determine the efforts taken to maintain it, or judge each person’s character.

I may have been on a life path where my way of interacting would have evolved this way without an MS diagnosis, but I think the diagnosis definitely accelerated my need to take care of myself.

I don’t relate to people exactly the same anymore. I strive to notice when I’m contributing to a poor dynamic, own my words and actions, and distinguish between my issues and other people’s issues. It allows me to have some control over my life instead of unconsciously reacting to circumstances. It also reduces the stress that comes from feeling responsible for other people’s feelings and actions and trying to fix everything.

Some people saw this as rejection or abandonment. Others embraced it, and our interactions flourished. To me it felt like I was supporting them with new behaviors that weren’t at my expense and inviting them to join me.

I appreciate all of these relationships regardless of where they are today. These people are all a part of my life and history. I want to support them in their own life paths that are best for them whether our paths continue to cross or not.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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I Love Me

Valentine’s Day is only days away. While it may sometimes seem to be a bit over-commercialized, it has its merits. Valentine’s Day is a holiday that allows us to show those we truly care about how much we love and appreciate them. However, it can also be a difficult day to face if you aren’t in a place where you are okay with yourself.

So, here are some things to think about to help you take care of yourself.

• Put yourself first. This doesn’t mean you should be selfish and be “All about me all of the time”. It means you can’t help others if you don’t take care of yourself first. You need to be in a positive frame of mind and feeling good about yourself to have the best impact on your loved ones.

• Cut yourself some slack. Don’t be so hard on yourself. We’re all humans; we all make mistakes. You can dwell on the negatives for a little bit in order to try to learn from your mistakes. But, make sure you also dwell on the positives because I’m sure you’re making positive strides as well.

• Friendship is a two way street. Your friendship is a gift and you get to choose to whom you give it. If someone doesn’t appreciate it, then they don’t get to continue receiving your wonderful gift. If they do appreciate it, then they will return your gift in kind.

• You have a right to your feelings and your opinions. You shouldn’t let others make you feel bad because your feelings on a certain matter don’t match theirs. If you aren’t up for doing something every now and then, don’t be afraid to say “no”. Just try to do it in a way that doesn’t hurt other people’s feelings and they will be more understanding.

• No one can make you feel bad. Your emotions are yours. Things happen, to put it in a PG-rated way. You control your reaction to things or people. If you don’t let them affect you, they won’t affect you.

Happy Valentine’s Day!!

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Pamper Yourself

This month some people will find themselves celebrating Valentine’s Day, a holiday that celebrates love, warmth and thoughtfulness. The day isn’t made just for couples but for all who wish to rejoice in caring and kindness—whether it be with family, friends, or finding time to care for yourself. You can use Valentine’s Day as a reason to stop and consider what you can do just for you; with no schedule or agenda to follow, just an opportunity for a little ‘me’ time. Now this doesn’t necessarily mean that you have to break the bank spending money on material things to make yourself feel pampered. There is no gesture or act too small when it comes to caring for yourself. Approach it with the question ‘I have time to do something for myself, what would make me happy?’ You may find the list of possibilities longer than you thought and that you’re overdue for some much needed self-care.  In case you need a few more ideas, here are some ways you can pamper yourself, not only for this upcoming Valentine’s Day but throughout the whole year.

  • Devote an amount of time for your favorite hobby or activity that you don’t do very often
  • Check out that book, magazine, show or movie you’ve been interested in
  • Take a day off—from a daily routine/schedule or from work but don’t schedule any other commitments, unless they’re fun and for your own benefit; remember, this is ‘me’ time!
  • If you feel the urge to spend a little money, treat yourself to some flowers or a small trinket you’ve had your eye on
  • Make time to listen to music, or take a walk/ride. Sit outside or look out the window and take notice of things that you don’t usually take the time to see
  • Relax! I know this is a foreign concept for many but try to make the conscious effort to rest your body and mind. Let your shoulders relax, pay attention to your breathing and feel your body unwind (this isn’t always easy to do so it may take some practice, be patient with yourself)

What are some ways you pamper yourself?

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Thinking About Blogging?

The MS Conversations blog has been up and running for almost four years and will celebrate its anniversary this summer. Over the last few years the blog has grown and expanded to include many new and exciting guest bloggers from the MS community.

Journaling and writing about your life and experience with MS is a personal choice and is one that is often met with a bit of hesitancy. For some, opening up in a public forum or public space runs the chance of being faced with criticism or judgement; which can be a source of stress. However, journaling or blogging can also hold positive benefits, such as; creating a bond or connection to individuals you may have never had the opportunity to meet in person.

Several options are available to those who are interested in connecting to an online community; whether it is starting your own blog or joining as a contributor to a blog that you enjoy reading, there is an option to have your voice and story heard.

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Have an interest in guest blogging with MSAA? Contact Samantha at sschech@mymsaa.org to learn more. A writing sample will be required as well as a signed consent and release form. All guest blogger opportunities are un-paid, and volunteer based.

What would you like to see from the MS Conversations blog in the next year? Are there certain topics or themes that would be helpful? Please comment below or reach out to us with any suggestions.

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Finding Companionship in Some Furry Places

February being the “love” month, we thought it may be appropriate to kick-off the month talking about some of our favorite furry creatures! In the past we have discussed the benefits of pet relationships and the positive effects that these relationships can have on one’s health and wellbeing.

With the uncertainty of a disease such as MS, individuals may feel comforted knowing that an animal has had some level of training or certification to meet a specific need. But what do the different titles mean? And which might be the best for your situation?

A Therapy Animal is not defined by federal law and may (or may not) be loosely defined by state laws. The primary purpose of a therapy animal is to provide affection and comfort to individuals, mostly those that live in communities such as nursing homes, or hospitals and schools. Their owners are registered members of an Animal Therapy program, and bring the animals in to visit with clients.

A Service Animal is one that has been specifically trained to perform tasks for an individual with a disability. Different states have different regulations in terms of licensing or certification requirements for service animals. You can check with the office of the Attorney General in your state to discover how service animals are defined and licensed.

An Emotional Support Animal, or companion animal, is a person’s pet that has been prescribed by a licensed mental health professional. The animal is included as part of the treatment plan and is designed to bring comfort and minimize the negative symptoms of the person’s emotional/psychological challenges.

Emotional Support Animals, specifically dogs should be able to:

  • Walk beside you without straining against the leash
  • Sit on command
  • Come when called
  • Lie down on command
  • Show no aggression toward humans or other animals when unprovoked

For more information, or to register your pet as an Emotional Support Animal, visit the National Service Animal Registry website and complete the brief form and pay the registration fee.

By completing this process and certifying your pet as an Emotional Support Animal, you are protecting yourself in several situations. There are laws that protect individuals with service or emotional support animals, including housing and landlord/tenant laws.

While pets require a certain level of commitment and responsibility, this may not be appropriate for everyone’s situation. That doesn’t mean you can’t benefit from the love of an animal.

There are non-profits throughout the country that provide visiting pet services. PAWS for People™ is a non-profit committed to providing therapeutic visits to individuals within their service community who would benefit from interaction with a well-trained, loving pet. To find programs in your area, search “therapy animal” and your city.

Show your #PetLove and share your favorite #MSAAPets stories about you & your pet with us!

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For additional information, please visit the sites below:

NSAR- National Service Animal Registry: https://www.nsarco.com/; 866-737-3930

Paws for People: http://www.pawsforpeople.org/; 302-351-5622

Canines Companion for Independence: www.cci.org;1-800-572-BARK (2275)

Paws with a Cause: www.pawswithacause.org; 800-253-7297

Pet Partners: www.petpartners.org; 425-679-5500

Service Dogs for America: www.servicedogsforamerica.org; 701-685-2242

Service Dogs for Independence: www.servicedogsforindependence.com; 520-909-0531

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The Decision To Go

A friend of mine recently left for a Peace Corps assignment. Two years in Thailand. Not the tourist sector or the flashy areas you see in magazines but very rural areas that you may have never heard of or that ever get much attention. Her journey to finding the Peace Corps and ultimately the decision to go wasn’t easy. She went back and forth and more than once was tempted to say “No, it sounds good but not for me”. Ultimately after one delay and many long stretches of talking with her family and friends she made the decision to go. Listening to her talk about it made me stop to think of the decisions in life that we make. How we come to crossroads, opportunities or big decisions and have to decide left or right, to go or to stay.

There are plenty of times in our lives that we sit down with our trusty pen and paper, or notebook app what have you, to make the list of Pros and Cons that we ultimately hope will clearly spell out what we should do. But what happens when you’re in a dead heat? When the reasons to go equal the number of reasons to stay? When it means leaving familiar surroundings or being uncomfortable? When you aren’t really sure and the idea of just deciding is pretty daunting. If you’re my friend you take the leap of faith and hope that it works out. But many people (myself included at times) find this, making the decision, hard to do. This month we talked about goal setting and resolution keeping, about ways we can branch out and make changes. But change is difficult. It can be messy and complicated and downright scary. The decision to leave a job you’ve been at for a while or to take on a new challenge. To talk with our doctor about a possible prognosis or make changes to our lifestyle. All the changes, they start with a decision.Challenge-Quotes-57

The decisions we make and the paths we go down may be complicated and the path I chose may not look anything like yours. But deciding to go, to change, to work through the problem, to have that tough talk with your spouse or go to see the physician is worth the skipped beat your heart makes when you do it. To get over that first step…the decision… then to move into the next phase and see where it takes you.

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Challenges With Showering When You Have MS

MS has a profound impact on so many aspects of the lives of those living with this condition, both big and small. While the “big” stuff is talked about more frequently, like treatments, doctor appointments, etc, the “little” stuff is just as important. One of the contributors at MultipleSclerosis.net, Devin Garlit, recently wrote an article about the unexpected perils of showering with MS. The simple act of showering can really be taken for granted when you don’t think about all of the factors involved. Between slippery surfaces, temperature changes, and even needing the energy to stand up for an extended period of time, showering with MS is not simple, nor easy. Our community members really identified with Devin’s sentiments, and they even shared their own thoughts and experiences with us. Here’s what they had to say:

Balancing in the shower is a real challenge

  • I can’t close my eyes to wash and rinse my hair unless I’m hanging on for dear life! I close my eyes, I fall! I started showering at night so that all I have to do is get ready for bed. A morning shower will destroy my entire day.
  • Washing my hair scares me. I get so dizzy.
  • Thank God for the three grab in my shower. Closing my eyes and looking up makes me dizzy, so I have to hold on.
  • Thank goodness for shower chairs, grab bars, and hand held shower heads. Still taking showers can be exhausting. I miss my baths. I loved laying and just soaking in the tub.
  • Balancing is such a challenge. I’m not glad that anyone else goes through it but I’m glad to know I’m not just loosing my mind. I thought it was just me. Even looking up at my son’s drone flying around in the sky I must find something to hang on to.
  • I do the swaying thing and usually fall backwards. I’m thankful for a small shower as when I fall back I end up just leaning on the wall.

I make adjustments to cope with the struggles of showering

  • I too have resorted to every other day and shower the night before if I have plans the next day. We adapt and adjust. Thank you again. Blessings and positive vibes to you.
  • MS made me give up baths 10 years ago and had to give up showers 3 years ago. Sponge baths are all I can manage. MS is an evil thief.
  • I’ve had to start showering at night and I hate it! I’ve also scalded myself when my brain fog had me turning off the cold water before the hot, ouch!
  • I started using a shower stool about 2 years ago because it helps. It’s hard to stand long enough to shower.
  • ‪ I have learned to work with this by only showing in early evening in case it increases the fatigue. Important not to shower unless someone else is home – safety first.
  • I sponge bathe, and shower once a week. Showering takes so much out of me, the heat, the slipperiness, the drying off. If I need to do something the next day, I shower the day before, and sponge bathe the next morning to freshen up.
  • I’ve got an anti-slip mat & grab bars in our P-shaped shower-bath.

Showering can be painful

  • Sometimes the water hurts or feels like it’s burning hot and it really not. When I take a shower I need 2 hours after to rest then I can get ready. I so hate MS.
  • It’s amazing that the water from a shower can actually be painful – people who don’t have MS just don’t understand.
  • It is very hard to explain to people why showers cause me pain and make me so tired that I often cancel plans and need to lay down.
  • I have burned my skin from not being able to feel how hot the water gets. I definitely can’t stand to shave my legs anymore or I will end up outside the shower on the floor.

Showering is exhausting

  • It is so frustrating to have to rest after a shower. I do use a shower chair, and luckily we have sliding shower doors. Though not supportive, it helps to have something else to steady yourself with other than just a shower curtain. I used to love soaking in a hot bath, but I haven’t been able to do that in years. I still have a shower every day, but it’s a struggle some times.
  • It’s exhausting! I’m considering a shower chair, but it’s hard to accept that I might need that. Balance, brain, fatigue – it’s hard to believe this is my reality.
  • I have issues with getting very weak with showers and nearly passing out before I am done, barely making it to the bed to lay down sometimes. I take lukewarm showers too. I also have repeated steps as well.
  • The shower has been an issue for me ever since I had my first child. It’s so frustrating having to rest after taking a shower. I feel like I spend my whole day resting between every little thing. I would shower at night but I sweat so much in my sleep it’s pointless.
  • Showering is an Olympic event…all the hurdles are exhausting.

What about you? Is showering a challenge? Do you have any tips to make it easier? Please, share your thoughts with us in the comments!

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New Year – New You

I have to admit, I am a sucker for a New Year’s resolution. Maybe it’s the over-indulgences from the holiday season, or the thought that summer is quickly approaching. But I really enjoy the idea of a reset; or a chance for a redo. The key word there is “chance”; each individual has the power to elicit a change in their lives.

For me, January 1st is the first day of a new life. While we can look at each day as an opportunity for change, for some, the bigger picture provides a sense of ease in that the familiar world we are used to will not be transformed in one fell swoop.

Honor the journey that you have been through thus far, for it has created memories and life moments that can propel you through this new life. Respect the past for what is it, and allow yourself to move forward. The new life in front of you is not designed to change your past experiences, but to allow a place for growth.

This is your choice and your time to make a change that can possibly help with a challenge that is causing you to struggle. Perhaps this is the time to contact that specialist to talk about a troubling symptom, or reach out to a friend from the past which you’ve lost contact. The possibilities for change are endless, but committing to one is the first step.

“It’s a new dawn
It’s a new day
It’s a new life for me
And I’m feeling good”
– Leslie Bricusse

Allow this new year to be your chance for change! Comment below or write to us sharing your experience.

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Stick to YOUR OWN agenda

During this month’s blog posts we’ve had discussions relating to resolutions, changes, and goals for the new year ahead. While many people work hard to create their own plans and generate new goals to achieve, some individuals try to impose their own agenda onto others—with the expectation that the objectives they envisioned for that person will automatically be met.

Some of us are not complete strangers to this situation; especially if during your childhood or adolescent years you had parents or other figures hold you to complete certain tasks and require the execution of specific goals. This is usually not done in malice, but rather people wanting the best for others and for them to perform at their highest level of potential. However, for individuals experiencing an illness or disability, these anticipations can be overwhelming and burdensome at times, especially if they don’t match with their abilities and skillsets. Everyone is different and is capable of different things.

Even though it’s done with good intentions, others expectations can sometimes take over one’s own agenda completely, leaving their own goals and aspirations on the sidelines. It’s difficult trying to meet others’ goals for what you should or should not be accomplishing, and it can be downright exhausting trying to satisfy others in this manner. That’s why it’s important to stick to your own plans and agenda—to realize your abilities or limitations and to strive forward with this thoughtfully in mind. You can take others suggestions, if asked for, to take into consideration when you’re forming your objectives, but they should be your own and done on your own terms. It’s hard to please everyone, but if at the end of the day you are comfortable with the decisions you’ve made and the feats you’ve conquered, I’d say to chalk that up as a win!

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New Year’s Inspiration

If you are like me, every January you sit down and make a list of New Year’s resolutions. Whether it be deciding to find a new job or lose a few pounds, the turning of the calendar seems to inspire a lot of us to turn over a new leaf. But change isn’t always easy. It takes hard work and that work can be even harder if we don’t keep a positive outlook or put mental roadblocks in the way.

On another note, over the past few years, I have become obsessed with the show Shark Tank. My husband and I record and watch it religiously. At least once an episode, we turn to each other and say “Why didn’t we think of that?”. But, we don’t watch the show to feel bad about ourselves. We find the show inspirational because it is a great example to us and our children that hard work and perseverance still pay off.

So, I thought I would provide you with some inspirational quotes from the Sharks themselves that I found on the Internet to keep you going when the going gets tough.

Shark Tank Inspirational quotes

1. “Tough times never last; tough people always do.” – Robert Herjavec
2. “A goal without a timeline is just a dream.” – Robert Herjavec
3. “Dear optimist, pessimist, and realist–while you guys were busy arguing about the glass of wine, I drank it! Sincerely, the opportunist!” – Lori Greiner
4. “Nobody has a monopoly on good ideas.” – Kevin O’Leary
5. “Never give up what you believe.” – Daymond John
6. “The difference between successful people and others is how long they spend time feeling sorry for themselves.” – Barbara Corcoran
7. “Finding opportunity is a matter of believing it’s there.” – Barbara Corcoran
8. “I wouldn’t be where I am now if I didn’t fail… a lot. The good, the bad, it’s all part of the success equation” – Mark Cuban
9. “It comes down to finding something you love to do and then just being great at it.” – Mark Cuban
10. “You can always find a solution if you try hard enough.” – Lori Greiner
11. “Don’t you dare undermine the power of your own instinct.” – Barbara Corcoran
12. “All the best things that happened to me happened after I was rejected. I knew the power of getting past no.” – Barbara Corcoran

Wishing you health, happiness and success in 2016!

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