Limit time outdoors folks. Being unsocial is part of MS for many. I would rather not be a wet noodle. Even if you are an extrovert, say “no” to the soggy social butterfly. I would rather be perky than soggy. Butterflies can’t fly with wet wings and MS can drench them. Be social inside. Air conditioning is our friend. Stay cool and they will come, so to speak.
Drink slushees and smoothies. I find sipping semi frozen drinks help me, if I can get through the brain freeze. When available, ice cream is my BFF. Ice being the main word for me. Wear ice and consume it.
Cool feet housed in sandals, a cold drink, air conditioning and various cooling items are my shields in the war on summer heat.
I also picked up a trick from my aunt years ago for fashion purposes. Now, I use it for MS. Swim trunks make great shorts, with the mesh cut out. They can get wet, thus a glorious moment of reprieve. Bonus, they dry fast and allow for multiple cooling opportunities.
I used cooling wrist wraps, when I rode horses for therapy. I need new ones, however. Their farm smell was offensive at my last theme park visit.
While the kids rode some puke inducing roller coaster, I waited in the shade. Many folks didn’t embrace the earthy smell my wrist wraps were omitting. So yeah I need new ones.
Cool is cool. We are not going to gain brownie points. I often pay for trying to be outside. Stay where it is cool. I personally have days of paybacks just for letting my butterfly be social. If I get hot, then paybacks are longer.
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.
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/
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.
For this year’s MS Awareness Month campaign, MSAA provided a number of digital resources focusing on Improving Mental Health and Wellness. This campaign featured webinars, a podcast episode, and insights from MS experts covering topics, such as:
Purpose in Life (PIL) – This research area focuses on the interactions between mind and body in powerful ways. PIL has been shown to significantly support the central nervous system, cardiovascular health, and even the immune system. Explore the concept and learn how to develop and foster your own Purpose in Life in the archived webinar, “Finding Purpose in Life.”
Depression and Anxiety in MS – Depression is a common and often overlooked symptom of MS, while anxiety is perhaps the most taxing and under-treated psychological effect of living with multiple sclerosis. Discover helpful strategies to manage these significant mental health issues in the archived webinar, “Managing Depression and Anxiety in MS.”
Care Partnering – Learn about the often overlooked physical and emotional needs of care partners and how to avoid care partner burnout in the podcast episode, “Caring for the Care Partner.”
Wellness Strategies – Find helpful strategies to better manage four key areas that impact mental and emotional health – sleep, staying connected, diet and exercise, and self-care – on My MSAA Community.
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.
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.
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/
After 2020, my hope bucket has changed. Simple is the way to go. Smaller goals and a smaller court or field.
Waking up to sunshine is a cause for hope. Sunshine gives me hope of the smile of a new day. No matter how cold it might be, sunshine gives me hope to move and helps me begin my day. Even if my to do list is crushed by MS fatigue, I had hope.
I am not blind to the struggles of MS. I have times when Continue reading →
You better change your attitude, mister, or I will change it for you. I remember occasionally hearing that as a kid, and I wondered how anyone could change someone else’s disposition. I thought it, but I was smart enough never to ask the question, which would have been bad for my health. I always tried to have a great attitude no matter the situation as a young guy, and meditating in Mother Nature helped tremendously. I now try to stay positive and hope that a smile or kind word I give is just what someone needs to change their day.
There are a lot of negative aspects that come with a medical diagnosis like multiple sclerosis. At any step of the way, any disease can weigh heavily on your body Continue reading →
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 →
