Stress Management with Chronic Illness

Posted on April 26, 2021 by MSAA

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:

Deep breathing
Take a sip of cold water
Focus on listening to my surroundings
Recite lyrics to one of my favorite songs
Think about everything I am grateful for
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.

Relaxing Method: 4-7-8

Posted on April 21, 2021 by MSAA

By Doug Ankerman

Trying NOT to sound like an infomercial, snake oil, salad shooting pitchman BUUUUUT here’s the easiest, cheapest and most relaxing method to melt stress and ease pain while clearing your head.

No more warming oversized beanbags in a microwave.

No more soaking in the tub till you’re a giant prune.

And no more oily and expensive massage sessions.

Yes, this stress reliever is no mess. Can be done anywhere at YOUR convenience. And is absolutely free. You heard right…FREE!

What is this life-changing, stress-reducing procedure, you ask?

It’s breathing! Breathing to a count of 4-7-8, in particular.

What’s 4-7-8, you ask? (You ask a lot of questions!)

Well, 4-7-8, beside being my locker number in junior high, is a simple, deep breathing technique that helps restore energy, focus… and sanity in this cray-cray world.

Let’s break it down so you can learn to breathe the 4-7-8 way…

FOUR

Begin by inhaling through your nose to a slooooww count of four. One…. Two…. Three…. Four. Make it a deep, belly-expanding breath. Filling your lungs to max capacity with fresh air.

SEVEN

Next, hold that glorious breath for a seven count. One, two, three, four, five, six, seven.

EIGHT

Finally, exhale through your mouth as you slowly count to eight. Tighten your belly, squeezing out as much stale, old air as possible.

Repeat the compete cycle again. Inhaling through your nose to a slow count of four. Hold the fresh air for seven. Before slowly exhaling through your mouth for an eight count.

Do the 4-7-8 cycle several times as you focus on slowly inhaling, a relaxed hold, followed by a slow, controlled exhale through your mouth.

I like to breathe 4-7-8 when first waking up. Breathing fresh air deep into every cell gets your body ready to rise and shine. Likewise, a few 4-7-8’s before bedtime releases the day’s stress and preps your mind and body for a restful night’s snooze.

The 4-7-8 breathing technique can be done anytime! Anywhere! At your convenience! Whenever you feel stressed. At work. At home. Even at the in-laws!

Melt stress today…. with 4-7-8!

4-7-8 is yours, absolutely free, but I feel no shame in accepting credit or even a donation!

*Doug Ankerman writes silly stuff about MS and other blurbs on his humor blog at myoddsock.com.

Stress Management, Resilience Skills, Time to Shine

Posted on April 16, 2021 by MSAA

By Stacie Prada

Stress isn’t inherently bad, but it feels awful when it causes suffering. Stressful moments are usually only upsetting when my go-to skills aren’t cutting it to skip feelings of tension and anxiety. I’m feeling pushed to do more than I can do, I’m feeling pressured to respond more quickly than I’d like, or I’m interacting with someone who is using bullying tactics.

When something triggers stress in me, it feels more empowering to think of it as a chance to flex my resilience skills than to say I’m managing my stress. It subtly shifts my perspective from feeling like a victim needing to suppress my natural responses to being an active participant and even champion in the outcome. Managing stress may not have the same connotations for everyone, but to me it feels like a compromise.

If I think of stress as bad and my body saying I’m failing or bad at dealing with things, it sabotages my ability to get through the moment with self-control and grace. Instead, I’m aiming to notice stress as my body telling me it’s ready to really perform at peak level. It’s alert, energized and capable. It’s ready to shine.

My mantra this week is, “Breathe, focus, and shine.” I say it to myself as I leave home in the morning. I remind myself to take a moment, consider the situation, and choose the best path forward. I’ve been working to remember in stressful moments that I can slow down and behave deliberately. Respond instead of react. Remember I have options, and I am choosing my behavior. I’m not obligated to a specific reaction.

Stress makes everything feel urgent, but that’s exactly when I need to set my own pace. When it’s a person testing my resilience skills, I need to listen more, ask a question, listen again. Slow the tempo of my dialogue and know that listening to a person who is mad doesn’t mean I’m disconnecting or agreeing with them. Let them experience their emotions without feeling obligated to join them on their roller coaster of frustration, anger, or abuse.

In everyday behavior, I can proactively live a life that nurtures my body and builds resilience for navigating stressful moments when they arise. Have fun, live with purpose and know I have value in this world. I can nourish my whole self with good nutrition, movement, self-reflection and connection with others. Network with colleagues, teammates, friends and mentors who can give perspective and suggestions. Connect with people who experience similar life stressors and can share their approach and successes.

I want to react to stress by pausing and asking myself this:
If I was the most skilled person in the world to deal with this, what would I do?

It doesn’t matter if I am the best person in the world to deal with it or not, because I am the one dealing with this. It might mean I just need to take a momentary breath to think it through. I might need to take a longer break and come back to it another time with a fresh mind. Maybe I should contact someone I know who could help me with it. I might literally be the worst person in the world to deal with this, but thinking about what the best person would do will help me figure it out. It can be my time to shine.

*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/

Stress Management

Posted on April 14, 2021 by MSAA

By Lauren Kovacs

We are surrounded by stress of all kinds. Each kind needs different management. But, don’t surrender to it. You gotta be like a ninja in your approach. Sneak up on it. Don’t stress about stress.

I try to fight each stressor individually. A custom fight. Each one gets something different. How special.

I do try different ways of dealing with each. Breathing through it can work. I admit, I get frustrating and start to cry. But, being raised by a military man, I learned to plow through frustrations. Identify it is stressing you out and find a solution. Crying can be a good release, but don’t stay too long.

Listening to music is a big help. I listen to my favorite tunes. Some power me up and others mellow me out. My boys hate my music, but it gets me through. I have a song I listened too before gymnastic meets. I was too legit to quit. Keep going.

Anger, for me, at something being hard has helped me. I often stress about getting shoes on. Shoe fights. I start sweating. I sing to myself. I am too legit to quit.

My mom recently entered a memory care home. I can’t stress about that so, I have some chocolate. One little piece helps me and I try and be positive too.

Stress is all around. It can be small like just brushing your hair without smacking yourself in the face. It can be big like a loved one saying something mean. Try different ways to squish that stress bug.

At times, the stress bug will quiet right away. Other times, it seems to have nine lives. Smoosh it each time with a different tactic. Just don’t give in. Something will quiet that bug. Two bits of chocolate or more might be needed.

I cling to hope that everything will be okay

Posted on March 24, 2021 by MSAA

By Penelope Conway

A ray of hope and sunshine on a cloudy day.

No one hates multiple sclerosis more than those of us living with it. When something happens that I can’t do anything about, I used to get frustrated and even angry. I hated not being in charge of my life, my brain and my body. MS gave me a wake up call on that kind of thinking.

My mental health was in danger of collapsing. Does that sound like I’m over-exaggerating things? Well, I’m not. Life was changing too fast and I was caught in a mental fog of weariness and disbelief.

The morning after my diagnosis I awakened and for a moment not just forgot what I had planned for the day, but who I was, what day it was, where I was and basically everything and anything about life. That was my morning wake up experience.

For a few minutes I sat in my bed and my mind was completely blank. Nothing, and I mean nothing, was there. It was a weird feeling. Most of the time that kind of thing happens when I’m startled awake from a deep sleep. It just takes my brain a bit longer to wake up than the rest of me.

I found it hard to explain to people what I needed and why that need existed when the person I was talking to couldn’t physically see the struggle I was facing. Opening your heart up like that can be a scary thing. After all, you are sharing a weakness and need with someone hoping they will handle it with care and support. That doesn’t always happen, but it’s important to try.

Because of MS, I have learned that sometimes in life we aren’t going to know what to do, and that’s okay. Sometimes, we aren’t going to know why things happen, how to fix them, or when or if they will get better. Sometimes, we are going to stumble our way through our day…many times literally. Sometimes we will find everything going well, then all of a sudden get slugged in the gut from out of nowhere with circumstances that change our day and life forever.

Sometimes life just is. As I say many times a day…it is what it is. I could allow everything in life from MS physical challenges, unbearable pain, financial difficulties, and emotional stress wear me down to the point of collapse or I could hang on when I’m at my weakest and cling to the hope that everything will to be okay and remind myself that my life is full of meaning and purpose.

When you’re in the middle of something awful, it’s hard to believe that things will work out. It’s hard to even believe that you will make it to tomorrow with the weight you are carrying and the dark clouds that are looming, but I can assure you, you are going to make it.

Think back on everything you have been through in life. Some of the difficult times seemed impossible to endure and had you sinking in despair. You have been hit with some awful moments. Things that even the bravest and strongest of people would collapse under, but you made it.

You are not alone with your MS struggles. No one living with MS has an instruction booklet on how MS is going to affect people or something that shows them what they should do with each new challenge or symptom they experience. MS didn’t come nicely packaged in pretty wrapping paper and tied together with ribbons and bows. If it did I would give it back…with a wedgie.

When you start to feel lost along your journey, try not to hide yourself away. Step out from the fears and keep walking the road laid out in front of you. Even though MS may be difficult at the moment, I know you can do this. I know you are going to make it.

Divide your day up into small segments and celebrate each one that you complete. Did you wake up today? Check! That’s your first victory to make note of.

You will find by celebrating each moment, that your day is filled with many more victories than defeats. Then when your day is over, you will know that you fought great battles, and although bruised and limping…you made it!

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2013. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

Feelings and Flash Mobs: Mental Wellness Looks Messy

Posted on March 19, 2021 by MSAA

By Stacie Prada

Life is not a straight line. Grief, coping, adjusting and recovery don’t follow straight lines from feeling bad to better. They’re more of a spaghetti diagram of past merged with present, conflicting emotions colliding without logic, and highs and lows mixed together as conditions change, time progresses and we adjust.

I can feel sadness, loss, fear, anxiety, love, connection, hope, strength and contentment in a single day. Usually I do. Often, I feel a combination of them all at once, and I think it’s normal for me.

I’ve learned flash mobs make me cry. Every time. They can be upbeat, fun and joyful, and still tears stream. I love the combination of surprise, music, choreography, people coming together and people dispersing as quickly as they started. They make me happy. They also trigger overwhelm for the connection, surprise and happiness they elicit.

I can analyze flash mobs for why I can’t keep my emotions level while watching them, and I can accept I don’t need to fix it. For me it’s a great example of how combinations of feelings can simultaneously occur when they aren’t usually related.

Remembering that feelings can be randomly triggered and illogical helps ease the desire to find the cause, the solution and validation. If I assume every feeling is valid yet temporary, I’m less likely to obsess over them. They can surprise me, consume me and evaporate as powerfully and fleetingly as a flash mob.

Certainly, if I’m suffering, I want to shorten the timeframe of feeling bad. If suffering persists, I want to have help. I know I’m susceptible to depression given my multiple sclerosis, and I watch for it. If I know not every feeling has a logical reason or need for fixing, fleeting emotions are less worrisome.

When feelings persist, having a well-rounded support team is crucial for my mental health and living well with MS. This team includes:

Primary care provider who tends to my overall health
Neurologist who monitors my MS progression, symptoms and mental health
Counselor to call if things seem too much for me to conquer solo
Friends and family who will listen and help me assess my condition
MS Self-Help Group where I can share and learn from people who have MS

Not everyone has access to health care, and I encourage anyone who needs help to contact MSAA to see if there are services and support that might help. If you have a different condition and don’t have a care provider, search “mental health services near me.” Local health departments often have a web page with a list of resources.

To contact MSAA, call their helpline at (800) 532-7667 to speak with one of their trained staff members, or email them at msquestions@mymsaa.org.

Mental Health and Wellness

Posted on March 12, 2021 by MSAA

By Chernise Joseph

I’ll be real with you, for this month’s topic I struggled to come up with something that felt at least a little optimistic, but then I realized my best response is just to be honest.

Mental health is a tricky thing to discuss. For one, everyone’s story with both mental health and multiple sclerosis is different. There are some of us that are lucky enough not to struggle much with either, but the older I get, the more I realize those sorts of people are rarer than I realized. All my life, I’ve heard how “everybody’s going through something,” and my response was almost always “but they aren’t going through what I’m going through!” as if that somehow validated how I felt despite never actually feeling any better.

Here’s the thing with mental health: just like multiple sclerosis, it’s an invisible ailment in many people and that, to me, is the most unfair part of struggling with either because I’ve noticed the empathy factor from others in the world drastically lowers when you’re able to smile and–to them anyway–you “look okay.” Side note: I’m definitely including myself in that critique, especially pre-MS.

Three weeks ago, Texas did everything it could to put my mental health to the test. Yes, the entire state of Texas decided to perform some sort of survival exercise to see if we’re all prepared for the apocalypse, apparently. In southeast Texas where I live, the temperature rarely drops beneath 30 during our coldest days in winter. We’ll get some snow flurries here and there, but otherwise “moderate” would be a generous descriptor for the 3 months of winter we get each year. However, February decided to deliver a one-two (three, four, five…) punch and not only give us single digit days, but also complete it with snow and ice. I like to think of Dante’s icy layer of hell when I describe what happened that week to people because I had no idea cold could be so awful.

I’ll set the scene: I’m caring for my ailing mother, the temperature is steadily dropping outside, and all at once, the power goes out. It’s around 11AM on Monday at this point and we’re hearing reports from family members that their electricity is out, too, and they’re at least an hour away in Houston. It wasn’t a local thing, it was everywhere. Immediately, panic sets in. The snow has started to fall outside, and the temperature has as well, though we were thankfully still in the double digits. I call a close friend for help because already I’m beginning to see cars collide outside from the icy layers forming on the street. We’re Texan, y’all. We barely know how to drive in the rain.

My mom and I decide that calling an ambulance for her would be the best plan. She’s medically fragile and we knew the hospital would at least have power and nurses who could care for her. The medics arrive and I had to beg them to ignore COVID procedures and allow me to ride with her to the hospital. They agree and let me sit up front. While they’re loading her into the back, I overhear on their radio that all ambulances would be grounded at 5PM. At least in the town where I reside, we were going to be on our own through the night… I think it hit me right then that this wasn’t just a sit around and have hot cocoa situation.

The hospital wasn’t as nice as the paramedics and I couldn’t stay despite the winter storm. Luckily, I have a group of nice friends with big trucks who took a break from delivering firewood to come and pick me up. By then, the snow had started to fall harder than I’ve ever seen before, and we were ice skating through the city trying to figure out a game plan. We drove through town and saw dozens of people dressed up in snow gear roaming the streets in search of warmth just like we were. The power was out permanently it seemed and none of us had planned for that. I think back on it now and forgive myself because there wasn’t a right answer to the situation despite knowing, logically, that a little snowstorm shouldn’t have felt like the apocalypse.

The next few days are a blur for me. We huddled around a friend’s fireplace and ate what we could find while the power and water were down, charging our phones either in the car or in the brief moments when the lights would come back on. It was chaos for everyone, but I think the lesson I got from it was how our mental health can either suffer or improve dependent on how we choose to look at things, not the other way around. That week from hell, its new moniker if I do say so myself, was awful and I won’t try to sugarcoat it. I was lucky to be safe and warm, but I was also fortunate to be surrounded by people with positive attitudes and optimistic outlooks despite how bleak things got.

It was during that week that I experienced the importance of being present again. With the world quite literally frozen over, there wasn’t anything else to do but sit and just be. I got a chance to not think of anything and just sit and cuddle my cat (who had taken up residence in my friend’s bathroom) and wait for life to return to some semblance of how it was, if not changed because of the people who helped me during one of the hardest times of my life.

*Born in the heat of Texas, Chernise Joseph is an avid writer with perpetual writer’s block. She was diagnosed with MS in 2016 and has been on the ride of a lifetime ever since. Read more from Chernise on her blog millennialwithms.com.

How to Spot a Fake Disabled Person

Posted on March 5, 2021 by MSAA

By Scott Cremeans

If you are reading this post to find out the clues I can teach you so you can spot that faker, then read on. You saw a person park in the handicap space and walk inside unassisted, so you want to call them out. You might have observed an individual use a wheelchair one day and a cane a few days later, and you want to bust them. Well, the truth is: LEAVE THEM ALONE!

But unfortunately, sometimes, they are attacked by a self-entitled morality vigilante that assaults them verbally or worse. I have heard of these onslaughts to be demeaning notes left on a windshield or a vicious verbal violation that left my friend in tears for hours. This abuse was after she felt exceptionally jubilant because her illness had her bedridden the previous four days, and she was finally walking.

Just because you see a person using a wheelchair one day and a cane, the next only shows that disabilities change. The pain level or physical abilities could be high one day and drop like a rock the next day. When you see that person park in the handicap spot and walk in the building with no mobility aid, they could have a heart condition. These invisible symptoms can be as numerous and varied as fish in a lake, meaning: LEAVE THEM ALONE!

The truth is I have heard whispers of a widespread scam of people faking disabilities, and it is simply not true. I heard one person say they let these fakers know they are seen so the real disabled can park there. I then asked him what an individual with a disability looks like, and without giving him a chance to respond, I stopped him. I explained he might have good intentions, but in fact, he is probably about to ruin someone’s day. A person with a disability cannot be spotted in a crowd like a guy wearing a fluorescent ball cap. Some people with disabilities stand out because of a medical device like a walker, wheelchair, or oxygen mask. However, many have unseeable disabilities that need your support not your condemnation and criticism.

The ignorance of society and the way entitled people can treat others simply makes me sad. To all those who do not have enough in their lives, making them want to criticize others, I say STOP! Live your life to the fullest and let others do the same because what you think you see is not what you actually see. If your life is that empty, find a hobby and spend every bit of your time controlling every aspect of the said hobby. Most importantly, since you know nothing about strangers’ lives, allow them the peace to live their lives as well. Everyone should make this a topic of conversation with friends and family as the truth needs to be shared.

You may think you know, but you have no idea.

Read more of my MS mishaps by visiting www.myramblings.blog

Our Relationship? It’s Complicated

Posted on February 24, 2021 by MSAA

By Doug Ankerman

Relationships come in all forms. Personal. Family. Professional. Casual. The list runs as long as your arm.

Each relationship, different in its own way. And each, as unique as the next.

We try our darndest to be careful with words and actions not to lead, disrupt or inflame. Care must be exercised to keep a relationship in its particular form — as crossovers can mean trouble.

Add multiple sclerosis into the fray and judgements can be blurred. Thoughts jumbled. Feelings fuzzed.

That is why I am thankful for two very special relationships in my life.

One, with a local auto parts store. And the other, the neighborhood plumber’s supply.

There, we experience connections on a higher plain. A shared silence of understanding.

Not being handy, nor mechanical, I am mummified to explain what I need or am attempting to do.

Mostly, I shuffle into their establishment with a pathetic look on my face.

A blank stare of incompetence.

From my pocket, I produce a worn-out part, some gadget-gizmo. I don’t know its name or purpose. I simply put it on their dirty counter and let them go to work.

Not a word is exchanged as they see the desperation in my eyes. They will gather up everything I need. Then carefully explain how to complete my back-handed attempt at the project.

Of course, having MS, their words fly over my head like Blue Angels at an air show.

(They are seeing my dumb face pictured above, remember?)

So, they simplify their explanation. Even drawing me a crude diagram on the back of the receipt.

Satisfied, I shuffle back to my car and home again with new-found confidence.

Balsa-wood bravado. Paper-thin capability. But it’s all good.

What we have is special indeed. A relationship that’s…yeah, it’s complicated.

*Doug writes about multiple sclerosis and other stuff on his humor blog at myoddsock.com

Good Confidants Can Handle the Tough Stuff

Posted on February 17, 2021 by MSAA

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.

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