Hop to it, but a nap might be better

By Lauren Kovacs

Hop away from the old and hop to the new. It is always a good time to star anew, fresh air and new life. Leave to cold dead winter behind. Shed it like an old snake skin.

I know easier said than done. I face the “why bother” monster too. Spring feels magical. Embrace that magic. Before the suffocating, still summer heat, and bugs, enjoy the clean breeze and light air.

New beginnings don’t care where you plop them, but springtime seems to be good. Try a bit of exercise. Maybe some easy, gentle yoga? Maybe a few sit-ups. Maybe a pet is your new or perhaps something else. Organizing something to better suit your needs. Be open to anything being a new beginning.

A new hair cut is a refreshing way to mark a new beginning, even if it is crushed by fatigue. I think making plans is just as good as doing them. Trying is worthy for us. Daily unplanned obstacles are thrown at us, like an over filled water balloon.

I plan on getting some pink streaks in my hair this summer. If I can get it done, great. If not, no loss. I avoid appointments because I never know what MS will do. I am far from spontaneous and I hyper-plan. With MS, appointments often are commitments I avoid. MS requires flexibility. I am more set in stone, a “yes sir” kind of girl. MS is at odds with being raised a Navy brat.

So, plan your new beginning, but be flexible enough to change plans. MS is like chocolate in summer. Some days it melts on your hand and other days you have bad tremors and it melts in your hair. True story. Plan, but be flexible.

I like to see flexibility as plan B. Flexibility and spontaneity cause me anxiety. New beginnings are more like goals. I think any new good habit is a new beginning really. Self improvement is great. Self care is a great new beginning too. 

Fresh flowers, for example, on my kitchen counter, all the time, was a new beginning for me. My allergies don’t really like it, but too bad. I enjoy fresh flowers, as my morning greeting. I just have tissues handy. New beginnings should be good. They may require a contingency or a strategy.

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MS with Arm Weakness and Spasms

For many people in the MultipleSclerosis.net community, Anita Williams’ article was a game-changer. Williams wrote openly and honestly about how this diagnosis affects her arms

This is something that is not often talked about in the community. But it seems it should be. This article stirred the community, leading folks to realize they are not alone in facing this symptom.

To dive deeper into what this issue looks like for community members, we reached out on the MultipleSclerosis.net Facebook page. We asked, “Foot drop is a commonly discussed MS symptom, but what about arm drop?”

More than 400 people commented. Here is what was shared:

Understanding of the issue

An overwhelming number of folks with MS shared that they have arm spasms and lack of functioning in one or both arms. Many did not realize that other people with MS deal with this same problem. Several thought their arm problems were due to their physical jobs and not a result of MS. There is comfort in people knowing that they are not alone and in finding out the real cause.

“I completely understand this kind of pain and, before reading this article, felt I was alone. It is comforting to know that I am not.”

“For the longest time, I thought I knew no one with arm problems like mine.”

“I thought it was just me who dealt with trouble in my arm.”

Dropping things constantly

For many community members, this shows up as dropping things at unexpected times. Many with MS cannot trust themselves to hold anything – coffee, keys, or even a baby. Some have adjusted by buying things that can withstand being dropped, like protective cases for cell phones.

“I hate dropping things.”

“I have been using plastic dishes for a very long time. I drop things more and more.”

“I will never have a phone without an Otter box and insurance on it thanks to this.”

Dealing with limited functionality, especially when arms are overhead

This issue can affect someone with MS by making it difficult to raise their arms overhead for more than a few moments. This can make it a challenge to blow-dry hair or put away groceries. Some community members do chores in short bursts with lots of breaks so their arms do not get tired.

“I cannot raise my arm all the way up.”

“I get where my fingers get stuck and I cannot move them. It actually hurts I have to pry them apart with my other hand.”

“If I hold my arms up, they start feeling weak.”

Having the problem only on one side

Many who deal with these symptoms find that only 1 arm is affected. The good news is that this leaves 1 arm with full function. But this also means learning how to work with 1 reliable arm. Some learn to use their non-dominant arm, which takes some getting used to.

“I have learned to do most stuff left handed, except writing.”

“Happens with my right hand and arm. Most of my issues are on my right, dominant, side. I cannot keep track of how many cups of coffee I have spilled because it is ingrained into my brain to use my right hand.”

We want to say thank you to everyone who shared for this story. Thank you for being a part of this community and showing so much support for one another.

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Stress Management with Chronic Illness

By Moyna John

It was November 2019, and my life was extremely challenging. I was struggling to find a balance between working and parenting my two-year-old toddler. I questioned myself at every turn. Being a first-time mother, I was very unsure of myself. Plus, I was still experiencing a case of post-partum depression. I was not handling all the stress well. Weeks later, I woke up with blurred vision in my right eye – this was the beginning of my symptoms. By the end of December 2019, I was diagnosed with multiple sclerosis (MS). I am sure that my high stress levels led to my initial MS symptoms.

Stress is something that everyone experiences. But managing a chronic illness can add even more. Unchecked stress can lead to various physical and mental symptoms. Some of these symptoms are chest pain, anxiety, headaches, depression, high blood pressure, and panic attacks. Stress management can provide healthier methods to cope with stress. Here are some stress management tips that I use.

Take care of your body.

You only get one body in this life; it’s essential to take care of it. Your body will give you signs when you are overly stressed. There are many different ways you can take care of yourself. Exercise is a great way to relax your mind and body—the endorphins from exercise can relieve stress and pain. I bought an exercise bike for my home. I try my best to exercise at least 30 minutes a day. Also, a well-balanced diet is another way to take care of yourself. Since my diagnosis of MS, I switched to a gluten-free diet. I have found that this diet has helped reduce my symptoms. Before making any changes, consult with your doctor first.

Relax your muscles.

I have noticed that my body gets taut when I am stressed. During overly stressed moments, I experience muscle spasms. One way I keep my muscles loose is through massages. COVID has prevented me from going to a spa to receive a massage. I purchased a massage gun, and it is a game-changer. It can be painful sometimes because of the intensity of the massage gun. Another quick way to relax your muscles is taking a hot shower/bath.

Grounding techniques.

According to Dr. Sarah Allen, “Grounding means to bring your focus to what is happening to you physically, either in your body or in your surroundings, instead of being trapped by the thoughts in your mind that are causing you to feel anxious.” My therapist recommended trying grounding techniques when I feel stressed or anxious. I have found these techniques to be very helpful for calming myself down. Here are the following techniques I do:

  1. Deep breathing
  2. Take a sip of cold water
  3. Focus on listening to my surroundings
  4. Recite lyrics to one of my favorite songs 
  5. Think about everything I am grateful for
  6. Countdown backward from ten

Finding a hobby.

A hobby is an excellent way to occupy your mind. Find something that interests you or keeps your hands busy. My hobby is coloring; I have found a color by numbers app for my phone. Also, I purchased a paint by numbers kit that comes with an easel, paint, paintbrushes, and canvas. I think these kits are great because you get everything all in one; something to occupy the mind and hands and beautiful pictures that look lovely once completed. 

Life is full of stressors, and chronic illness can only make it more challenging. Stress management strategies can help reduce stress-related symptoms and maintain a quality of life. Be mindful of taking care of your body through exercise and a well-balanced diet. Grounding techniques can be helpful for self-calming. Plus, finding a hobby can occupy your mind and keep you relaxed. Overall, stress can be detrimental to someone with a chronic illness. Remember to keep your health a priority! 

*Moyna John is a multiple sclerosis advocate and freelance blogger. She is passionate about adding representation within the MS community, creating space for Black MS warriors, and empowering modern women to live a purposeful lifestyle outside of chronic illness. Visit her website or follow Moyna on Instagram.

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Good Confidants Can Handle the Tough Stuff

By Stacie Prada

Our relationships affect our health, and our health affects our relationships. Our health and our relationships evolve over time as each person ages and life chapters change. These are simple and obvious facts, but I find them to be something I need to remind myself periodically.

Living with a chronic and progressive illness like Multiple Sclerosis complicates the issues to tackle and the dynamics to navigate relationships.  As my body changes, my focus always shifts inward.  Is this symptom new and temporary, or is it a small indication of worse things to come? What do I need to do differently now, and what might it signal for my future?

These are important questions to consider.  Identifying symptoms, possible treatments and available resources are crucial for navigating the physical aspects of chronic and progressive diseases like MS.

In these times, I try to stay logical and pragmatic.  I try not to overreact. I try to work through my fears and frustrations in a healthy way that doesn’t impact anyone else.  They don’t ask me to keep it to myself, but it’s my natural preference.  Unfortunately, the agitation and worry usually seep out, and those close to me sense it.

Stacie Prada relationships on her blog post Sharing the Tough Stuff

It takes a lot of self-awareness and acceptance to disclose when my body isn’t working well. Usually, I’m still trying to get a handle on what it is and whether it’s significant or not. I’m still trying to analyze and monitor the changes.  I often am not yet ready to share, because I’m hoping things might improve and there might not be anything to share.  This means those close to me experience the consequences of my changing health before I even realize I’m stressed and irritable.

My confidants have excellent skills for showing curiosity and support while not pressuring me.  Sometimes unknowingly, they help me manage my feelings, my fears and my frustrations.  They hear me, believe me, don’t compete with me, and share themselves with me. I see their grace when I deflect or shut down an inquiry.  These are the people to keep close, because they’re willing and able to help me.  When I see them hesitate or gently back off, it’s my signal that I should share what’s bothering me.

Yet, I still hold back.  While it’s silly to think saying things out loud will make them worse, it’s exactly how I feel.  If I share that my legs hurt more and my coordination is worse, it means my fears of becoming disabled are warranted.  It means I’m becoming disabled.

I’m seeing disability with MS can be a slow, gradual and very invisible transition.  It appears to me that I will be greatly affected by my disease before anyone sees me with a mobility aid.

I’m going through this life with MS, and the people close to me are going through this life with MS with me. Some made my life harder, and I’m fortunate to no longer rely on them.  Others have proven to be healthy and respectful, and they are my cherished relationships.  They check in, they ask how I’m doing, and they back off when they see I’m not up for saying more.  It’s not until I open up and share the invisible changes I’m experiencing that they can really go through this with me in a way that helps me cope.

Having a body slowly and progressively deteriorate is an isolating feeling.  It takes effort to explain and not complain.  I get sick of living with MS, and I get sick of being tired of it. I want to be low maintenance and easygoing, but this disease is one that requires constant coddling and accommodations for my body’s needs. It takes a lot of time and effort to do the physical tasks that are needed to manage my MS symptoms, and it takes tremendous effort to challenge the negative thoughts that come from having a chronic illness.

I haven’t found the secret to skipping the irritable phase.  I’ll notice I’m grouchy, and I try to override the temptation to lash out. Sometimes I do well. I keep my mouth shut and go for a walk or do yoga.  Sometimes I reveal my bad mood in my tone or curt responses. It’s moments like these when I don’t feel like I’m being as nice as I’d like that I hope to avoid or get through quickly.  Often the best I can do is give myself a timeout and tell those around me that it’s not them.  My goal is to be able to feel pain without lashing out and seek connection to help get me through the feelings of uncertainty and frustration.

Once when I was going through an especially difficult time, a friend wrote in the sympathy card, “We’re hurting with you.”  It hit the right nerve, and tears along with a sob came quickly.  I was feeling very alone, and having someone succinctly address it allowed for a cathartic feeling of connection.  I know the antidote to feeling powerless and alone is sharing with those close to me. It doesn’t fix my problems, but it lightens the emotional load I’m carrying.

If I can be truthful and forthcoming with the people who have my back, and if I can be a source of support for their challenges, I think we’ll all fare well.  The best relationships can handle the tough stuff.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  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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Learning About Hope

By Stacie Prada

Learning about hope gives me hope. Hope, faith, endurance, resilience, conviction and belief, they all contribute to my level of hopefulness.  They help me feel like I can make it through hard times.  The conditions I’m enduring will subside, or I’ll figure out a way for it not to hurt as much.

Hope

I’m learning that people with hope do better physically.  I’m realizing that it’s not a feel-good thing or coincidence that at my neurologist appointment, the questionnaire asks me how many times in the last month I’ve felt hopeless. You may be familiar with this question. It reads: “During the last 30 days, about how often did you feel hopeless?  Choose among the answers: All of the time, Most of the time, Some of the time, A little of the time or None of the time.”

Some internet research has shown me that this question is from the Kessler Psychological Distress Scale.  It is a measure of exactly that, distress.  People who are hopeful live with less distress.  It doesn’t mean their lives are less challenging or easier.  Actually, they’ve learned that life conditions don’t have a correlation to how hopeful a person is.  People with similar challenges can have vastly different levels of hope, and even the same person can have different levels of hope at different times in their life.  I’ve learned it takes effort to be hopeful, but our circumstances don’t dictate our well-being.

There are things we can do if we’re feeling hopeless.  Hope and motivation do well with ongoing support and inspiration, and often they involve other people. Tell someone you trust, talk to a counselor, reach out, and lose any guilt or shame for needing help.  Answer the question honestly when the doctor’s questionnaire asks you.

We’re all going to have different things touch our souls and give us hope. Just looking for things that make me hopeful leads me to find reasons to be hopeful.  Being clear about what is possible and what is probable narrows my focus for where to direct my attention productively.

I’m excessively aware that I can’t control most of things in life.  I can‘t control what others do, I can’t control the pace of scientific advancements, and I can’t control my body’s multiple sclerosis advancement.

I can’t unilaterally fix the world’s injustices, but I can contribute a little in every interaction I have.

I can’t prevent MS progression and disability in my body, but I can live in a way that gives me the best odds of doing as well as possible.

I can’t speed up medical advancements, but I can stay informed, participate in studies and contribute to causes that are doing that work.

Acknowledging the many areas where I lack control and the few where I can contribute eases my stress level.  It lessens the degree of responsibility to a manageable level where I feel like I can do something that matters. That gives me hope.

*Stacie Prada was diagnosed with RRMS in 2008 just shy of 38 years old.  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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Staying Connected This Holiday Season

By Alene Brennan

The holiday season is often filled with traditions that we look forward to all year long.

There are two moments that I look forward to most each year. Thanksgiving dinner with my extended family where we gather to enjoy good food and laughter together. It’s all about the relationships.

I also love the candlelit Christmas Eve church service that provides such a special feeling inside. Being surrounded with everyone in their holiday attire, the lit Christmas tree and hearing the Christmas hymns, is powerful.

Knowing the holidays have a much different feel this year due to the pandemic, Continue reading

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Jump?

By Lauren Kovacs

I know this is tough. We don’t want to be a burden by trying to connect. I have to remind   myself to let my MS do the talking. We might be having a bad day and we might sound drunk. We might be beyond exhausted or having pain. Connecting with non-MSers can be hard.

You have to take care of you. I often “hit the wall” so to speak and just Continue reading

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Learning About Anxiety

By Stacie Prada

I get anxious, but I never considered I might have anxiety. I’ve heard people talk about how it feels to have panic attacks, and I know I haven’t experienced one. I thought of anxiety as something constant and debilitating. I do yoga, I laugh, I’m active, and I’m productive.  Having a diagnosis of anxiety doesn’t fit in with how I view myself.

But when I research anxiety, I realize that what may not be paralyzing for me could still fall perfectly under the anxiety umbrella.

Anxiety

Grinding teeth, nausea, headaches, problems sleeping Continue reading

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Zephyr

By Chernise Joseph (Zivvy)

Anxiety. I’m full of that right now.

It’s pretty common, but it still feels like something you’d see in a horror movie: it sneaks up on you, there’s some loud, dramatic cue of music, and then suddenly whatever else you’re doing feels irrelevant because now you have to run from It.

Tonight, I sat outside with my friends and watched the tree canopies above us get caught up in the wind. It’s a cool, breezy night Continue reading

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Take the Time to Feed Your Creative Self

By Maria Sammartino

Art has always been a part of my life and who I am. Growing up we didn’t have the luxury of “just watching TV.” My grandparents were both artists and made sure when we were with them, we either had a pen, crayon, paint, knitting needles, or crochet hook in our hands. Thankfully for us, they made sure our hands were always busy and we were creating something.

My grandmother was Continue reading

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