Keep it Romantic

Posted on August 16, 2017 by MSAA

By Lauren Kovacs

I am, by no means, an expert on romance or dating. MS is more fact. It does not have bubble shaped hearts floating around. More of a mean Cupid thing.

I married a guy from my church. We met at 17 years old. I was not officially diagnosed until I was 21, but had symptoms at 16. I was the little blonde cheerleader and he was the big high school jock (different schools).

High school sweethearts. Let me barf, I know.

I did well early on. MS did not stop me. MS behaved for the most part the first 15 years. MS lived with US and not the other way around.

My husband knew the heat and fatigue were issues. I was active with our three sons and did Irish dance, clogging, and figure skating. I only stopped because of pregnancy. MS was locked up back then.

Fast forward. My youngest was in preschool and things began to change. I opened up to him and it was just too much. His active wife was starting her descent. The MS pit is dark for everyone.

Work and family life were a lot for him. Dumping my MS garbage on him was not working. I clamped up and bottled it. Not smart. There was only so much room in the bottle. It held evil MS air and not some wonderful magic genie.

Fast forward again. The youngest is 7 and the pressure in the bottle starts to leak. I can’t handle it. I knew I could not unleash on my husband. I really needed help. The talk therapist helped a lot.

Now, I can hardly walk. He knows I can no longer write, sew or paint. He and my sons know I need to be near a potty at all times. He sees me struggle. We don’t really play “what if.” We are mostly one day at a time.

I read books and took the marriage personality test. I had taken a similar test when we did our marriage classes. I knew I needed to dump on someone other than him.

He came to his acceptance of MS on his own terms, in his own time. Like most MSers, acceptance comes in time. I am so very blessed. Lots of MSer’s spouses bail. Pressure comes from all directions with MS. Many relationships require slow tweaking when MS is the 3rd wheel in a relationship.

Step into the other person’s shoes. What if you watched your spouse’s slow decline. It does take a very special person. MSers are special and they deserve a special person.

A disinterested third party is key to keeping the flame lit and keeping the wheels running smoothly.

The Not So Good Relationship

Posted on August 14, 2017 by Angel Blair

Keeping with the theme of relationships on this month’s blog inspired me to do a little Googling into different relationship topics and recent news to see what’s been trending lately. I actually found several pieces on toxic relationships and help in how to recognize these. Usually when people think about relationships the mind doesn’t tend to go towards the dark side necessarily, but the truth is there can be a lot of toxic parts to a relationship that some people don’t even notice sometimes. Often, people believe their relationships look like other’s relationships; everyone has their ups and downs and not-so-fluffy cloudlike days and this is normal. This is true, but when the relationship is in that darker side of the clouds more often than not, it’s something to address.

Psychology Today recently posted about how to recognize toxic people and relationships, and it’s not always easy. In a relationship, sometimes the people involved have blinders on in order to see what they want or need to see in the other person; it’s only natural. Everyone has flaws and no one is perfect, but there are some toxic traits that can’t and shouldn’t be overlooked. Things like selfishness, disrespect, and arrogance are all signs that point towards a potentially harmful toxic relationship. The post also mentions these other red flags as potential signs of a toxic bond:

Lying
Being unapologetic
Manipulative
Abusive
Narcissistic
Spiteful

Examining one’s relationship and trying to recognize red flags is not easy. It can be overwhelming and sometimes shocking to realize that the relationship is causing more harm than good and if it’s contributing to stress and negativity. Sometimes these bonds are ones that can’t be severed so easily either, especially if they’re with family and loved ones. This is why it’s so important to surround yourself with positive energy and loving relationships whenever possible, and taking a step back from the ones that aren’t is sometimes necessary. Reaching out to others for support, seeking therapy, taking time for self-care and self-love are actions that can help combat toxicity. Everyone deserves to be respected and to be in relationships that nurture love and support; anything else is unnecessary distress.

My MSAA Community – One Year Later

Posted on August 11, 2017 by MSAA

It has officially been one year since MSAA launched its online peer-to-peer forum, My MSAA Community! This virtual community (powered by HealthUnlocked) has allowed individuals living with MS and their care partners and families the opportunity to share their experiences, discuss a variety of topics, and support others in a friendly and safe environment. Community members are able to connect with other people affected by MS, contribute to ongoing conversations, or start their own conversation asking for advice or sharing their journey.

Here are just a few of the ongoing conversations being discussed on My MSAA Community:

Commemorate this milestone with us by contributing to these conversations or start your own by joining My MSAA Community!

Someone Has to be Excited…

Posted on August 9, 2017 by Angel Blair

In talking about relationships this month on the blog it’s impossible not to think of the bonds I have with the people in my life and how impactful they are in shaping who I am, and in turn, what I am to others. Sometimes we don’t realize how much we’re touched and influenced by other people. But all it can take is just one conversation, one tiny fraction of an entire day to make an impression on someone else. I had an occasion recently that I wasn’t really feeling up to celebrating much. My husband on the other hand, was very happy and wanted to share his elation; he has a special knack for being positive and optimistic. His exact words were “someone has to be excited for you.” The sentiment didn’t resonate in that precise moment but afterwards it was all I could think about. That this man knew that I wasn’t able to feel joy in that particular moment but still wanted to mark the occasion and celebrate for me. That is a remarkable relationship trait.

There are going to be times when a day is gloomy, a mood is sour, or chaos arises. It’s a roll of the dice sometimes in how a day will play out — but what matters is who is there with you at the end of that day, being your cheerleader and light in the darkness. It’s difficult trying to be happy and positive 24/7, we’re only human; it’s part of our wiring to experience other moods and emotions. But if you have or can find that other person who can champion for you when you can’t for yourself, find gratitude in that because it’s a truly special trait. Being your own champion is of course ideal, but in those moments where this isn’t possible, having that piece in your relationship with someone else is truly significant.

Unfortunately many people experience toxic relationships that are one-sided and selfish where the other person wouldn’t think to imitate this selfless behavior. That is why self-love and self-respect are necessary in your pursuit of finding relationships that will help foster encouraging aspects and positively influence you. You deserve to be loved and supported and knowing this makes all the difference in what you want or are looking for in others. Being that hopeful light for someone else and having them be the same for you when needed signifies a healthy bond; and a relationship where one person can be excited for the other if and when they can’t be for themselves.

Relationship Questions I’ll Ask Now That I Live With A Chronic Illness

Posted on August 7, 2017 by MSAA

By Stacie Prada

Here’s the hard thing about relationships when you have a chronic illness. At any given time we’re at a certain place in how we feel about our lives and health, and we hope that those close to us can understand and be there with us. And it doesn’t always happen for our spouses, family members and friends when we need them. They aren’t always able to trust us and be dependable for us when we need them. They aren’t always able to promise or have the ability to be there for us for what we think may be in store for us.

These are good people that have been through tragedies and life hardships before. But sometimes something that isn’t temporary, isn’t going to get any better, and is most likely to get worse is beyond what they can handle.

We don’t sign up for being sick. They don’t either. The difference is they have a choice. And I’m grateful that it became clear before I desperately needed anyone that the relationship I was in wasn’t one that would support me in my probable decline.

I want to be wanted, not an obligation or sacrifice. I see other relationships where people get together after one of them has been diagnosed with MS. I’ve seen how they treat each other, and it’s shown me that it’s possible to have a relationship where hardship exists and it’s not perceived as a burden. The hard things that need to be done are treated as things people do because they love and respect each other.

I don’t want a caretaker. I want a partner. I want someone who will do things for me because they want to, not because they feel obligated. If someone isn’t up for it, the biggest gift they can give is to admit it and bow out.

I cringe when I see articles and comments describing friends, marriages and bodies as not “real.” My marriage was real. And it was good, really good for a while. We were strong and there for each other for a lot of excruciatingly hard times beyond our control. But dealing with what happens and staying around for what might likely come are different things.

For me I realized it wasn’t about whether someone would have me with my chronic illness, the question was whether I wanted them around for my future and helping me with my chronic illness. As I embark on a new relationship someday, I think the questions I’ll want to know the answer to are different and more specific than the first time I married. They extend beyond whether we want children and envision our futures and beliefs align. These are the questions I’ve compiled so far that for me capture relationship traits important for living well with MS:

Can you be gentle and respectful to me when my health inconveniences you?
Can you respect and appreciate me if it gets messy?
Do I like how you treat me when I’m sick or not doing well?
Do you continue to treat me as a partner when taking care of me?
Are you there for me when I need you? Are you accessible? Do you respond to my texts or calls in a timely manner?
Are you there for me because you don’t want to be the bad person or because you want to be with me?
Will you go to doctor appointments with me and share my experience?
Will you do things for me even if they don’t seem like a big deal to you but you know they’re important to me?
How resilient are you? How do you handle stress?
Will how I treat you be enough for you? Will you think being with me is worth the effort it takes?

These questions are reciprocal. Just because I know I have an incurable chronic illness, it doesn’t mean that my partner won’t need the same from me at some point. Nothing is certain, but hopefully building relationships that support unknown futures may be possible.

*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/

Relationships are…

Posted on August 4, 2017 by MSAA

Dear No One,

Relationships are tough. I mean, I know I’m stating the absolute obvious to you when I say that, but just hear me out. We too often think of relationships in terms of just those we date or are romantically attached to. But relationships are more than that. We have relationships with our family members, our friends – hey even total strangers we strike up a conversation with on a train platform. And they all can be taxing and draining, hard to navigate and at times annoying. They can be stressful and expensive and not just in terms of money but in emotional investment and mental space. If I’m being honest, people can be the worst. I mean really, look around and you’ll find plenty of examples of reasons why we should not like people. Just look at what they do to each other and you aren’t immune if you know someone. People can hurt the people we know just as much if not more than the people we don’t. You see what I mean, relationships… they’re totally insane!

But then things happen like the other day when it was raining and I stopped at a light and I was annoyed by the day and by the rain and by just everything and I caught out of the passenger window a woman walk up to someone on a bus stop and offer for them to share their umbrella. Just out of the blue walked and stood near them and the person, startled by the sudden end to rain pouring onto their head looked up and then over and with a look of bewilderment cracked a nervous smile and tilted their head. And the woman smiled and the light turned green. Or when I went for a hike not far from my house yesterday evening and saw a dad picking his teary kid up off the unsteady hiking path. Just lift them up into his arms and as sure as the grass is green and the river moving told them that everything was going to be alright, they just took a little stumble. Things sometimes happen like the police officer who is called to a house to investigate a possible concern and ends up comforting a little boy who’s all alone or a teacher who has struggled to get a new student to be respectful and listen, gets an email from a foster mom saying thank you and that she’s seen a big difference at home even if there hasn’t been a big difference in class.

Relationships are tough. They’re messy and difficult. They’re taxing and at times confusing. They take a lot of energy and effort and thought. You spend time worrying if what you said was too much or too little, if you are being too intrusive or too standoffish. You rack your brain with what if they don’t understand or don’t laugh or don’t come back. And all of those are possibilities that we face and can leave little pieces of us chipped off. But being in relationships also make us richer, fuller and more colorful. They make us smile and laugh and become more caring. They make us understand and see things differently and open up. They’re tough, don’t get me wrong, but they’re also worth it. They’re worth saying Hi to the person you meet at the airport and worth smiling and asking how they are doing of the cashier at the grocery store. They’re worth reaching out to people we’ve been thinking about and worth letting those in who we’d otherwise keep at arms length. They’re worth replying to the community post someone started about feeling alone and worth getting into even if it doesn’t end the way you’d hoped. Relationships are worth it and I guess since they are…maybe people aren’t so bad after all.

Affectionately,

August 2017 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

Posted on August 2, 2017 by John MSAA

MSAA is very proud to present our 2017-18 Art Showcase – celebrating the work of artists affected by multiple sclerosis (MS).

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

Rhena Hall – Little Rock, AR
Summer Sunshine Rose

About the Artist:
“I was diagnosed with multiple sclerosis in December 1981.

I have been struggling with dizziness and complete exhaustion for an hour, then I recover for maybe 30 minutes then tiredness starts in again. This is a lifelong struggle and I will not accept defeat. Medicine is now making my goal possible. Had to retire at 37 years and have been in a wheelchair briefly, crutches, now cane. Exercise daily…classic stretch. Too busy to give in to MS.”
Read more

Caregiver Wellness

Posted on July 31, 2017 by Angel Blair

Caregivers are some of the most important people in the world. They dedicate themselves to caring for someone else with their time, commitment, sacrifice, and compassion. Being a caregiver to someone else means they don’t always have the time to care for themselves. But everyone’s wellness and care are important, especially for those who need to be there for another person. Caregiving is an enormous task that can stretch people thin and make it difficult to carry out or even think about one’s own wellness. It’s no one’s fault – there is only so much time in the day and when the majority of that time is focused on someone else’s care, a caregiver’s own wellness and physical well-being are often just put on the back burner. The same is true of parenting/family roles and helping professions; others needs are simply put first, without question or expectation.

Caregiving doesn’t necessarily mean that person has to do everything themselves either. Knowing when and how to ask for help is a great strength, and for caregivers there are resources that can help. Oftentimes these resources are geared towards those caring for someone elderly, but it’s these same types of contacts that can help those caring for disabled individuals too. Communication is vital in the caregiver role; being able to talk about what is needed or what’s currently going on is essential to maintaining balance and stability. One key element to caregiver support is respite; a period of rest and relief for those carrying out this role. It’s also a significant piece to wellness – taking a break to focus on one’s own needs and having the peace of mind to know that the person they care for is safe in that moment too. It’s not a selfish act by any means; it’s a necessity of life. You have to take care of yourself in order to be able to take care of someone else. Selflessness is an admirable quality but self-care is equally important.

Image result for caregiver

Where’d that Bruise Come From?

Posted on July 28, 2017 by MultipleSclerosis.net

If the walls and the furniture would stop moving I wouldn’t have any bruises

Do these words sound familiar: “Woah, how’d I do that?” or “When did I cut myself?” If so, you are certainly not alone. We recently shared an article about mysterious bruises that started quite the discussion amongst the community. With over 160 comments, it quickly became clear that unknown bruises, cuts, burns etc are a regular occurrence among many MSers, but how and why these happen is where it gets really interesting. Here’s what our community members told us!

That’s What Caused it?

While many of the bruises, cuts, bumps, scrapes, burns show up as if from nowhere, others have a very clear cause. Though sometimes it takes a while to realize what that cause is!

It took me a while to realize my bruises were from hitting my elbows on doorways to catch my balance when I was carrying the laundry basket.
I finally figured out my shin bruises were from those small carts at the grocery store. There’s a little bar across the bottom that hits my shins!
I’ll often notice a new scratch on my hands or legs and realize, a day later, it was from my cats
I can’t tell you how many times I’ve burned my hands cooking dinner and not realize it until I see the blister
We used to have a trailer hitch on our SUV. Weekly I unknowingly walked into to ball on the hitch while loading groceries. It took me MONTHS to figure out where the perfect blue circles on my knee were coming from.
What bothers me most is hitting my head as I get into the car. Like I’ve never gotten into a car before.
I thought I was in a secret fight club in my sleep lol. I wake up with random bruises all the time!
I used to wonder where a new bruise came from now I know! I’m so unsteady on my feet I bang into stuff all the time. It’s so common I don’t remember every bump!

Why Does This Keep Happening?

There are so many factors that could contribute to the increased bruising and wounds with MS.

I just fall more often now

Spasticity, muscle weakness and loss of balance are common with MS, and can cause serious gait problems and other mobility issues, such as “foot drop” or “toe drag”
And you may also be familiar with dizziness, or even vertigo, as part of the MS experience. Feeling as though the room or ground is spinning can certainly make one prone to falling

Half my body is numb

As many of you have probably experienced, numbness on body parts, or entire halves of the body, is one of the most common symptoms experienced by MSers. This is caused by damaged nerves inhibiting the transmission of sensations from the body’s surface to the brain.
And of course, when you don’t feel a bump or burn, it’s even more confusing to see a bruise!

My body is more prone to bruising and bleeding now

Some medications and that treat MS and other dietary supplements can also cause the skin to thin or lower the blood’s ability to clot, leading to an increase in bruising or bleeding
Additionally, there are other comorbidities, such as low blood platelet count or anemia, that can cause clotting issues and bruising

Ultimately, if you’ve ever had a friend ask you “What happened to your arm” or you’ve woken up in the morning to find your legs covered in fresh bruises without a clue, you are not alone!

Physical Wellness with Aquatic Exercise

Posted on July 26, 2017 by MSAA

In the past couple of weeks, we have been looking at strategies for finding the best wellness plan for each person, whether it is watching for signs of depression, or making time for physical wellness in the weekly routine.

When it comes to finding a physical wellness routine, it can be difficult to find just the right exercises for individuals with multiple sclerosis who experience heat sensitivity, balance issues, mobility concerns, and other symptoms.

One easy way to combat these concerns, while still getting in a little physical activity is to look into the benefits of aquatic exercise. Research that has been conducted suggests that aquatic exercise is effective for improving mobility function, cardiovascular endurance, fatigue level, muscle strength and flexibility/range of motion in individuals with MS.

The best part about aquatic exercise is that it is easily adaptable to each swimmer’s experience level and physical ability. Swimmers who are more comfortable in the water can aim for a higher-level aerobic workout, or they can opt for a slower workout by moving around a pool, with the water providing slight resistance.

If you are looking to incorporate aquatic exercise into your physical wellness routine, keep these tips in mind:

Always be sure to consult your physician or healthcare team before taking up a new exercise routine.
Locate a pool or facility that works best for your lifestyle. If you need help finding a facility that meets your needs, feel free to check out MSAA’s My MS Resource Locator ® or you can call our toll-free Helpline at (800) 532-7667, ext. 154.
Set realistic goals for yourself in the pool. Perhaps you are hoping to improve your balance, or simply strengthen your leg muscles. Communicate this to your healthcare team and your instructors (if applicable) to help you develop a plan to achieve these goals.
As with any exercise routine or aerobics class, communicate with the instructors and trainers about your concerns or questions. You will feel more comfortable in the pool and be better set to reach your goals.
Lastly, have fun! Physical exercise can feel like a chore sometimes, but the more fun you have exercising, the more motivated you are to keep doing it.

Learn more about the benefits of aquatic exercise for individuals with MS by visiting MSAA’s Online Aquatic Center.

FOLLOW MSAA ON: