Part of living with multiple sclerosis (MS) is dealing with flares. A flare, also called a relapse, is when MS symptoms recur or worsen.1 The change in symptoms lasts for at least 24 hours, but often much longer.1 Flares throw a wrench into daily life and plans. They are challenging to manage. Curious about how you handle flares, we recently posed this prompt to our MultipleSclerosis.net Facebook community: “You feel a flare coming on. What is the first thing you do?”
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There are things we are reminded to do on a regular basis.
Replace batteries in smoke alarm
Floss
Rotate tires
Some are to be done seasonally, others annually.
Change furnace filter
Swap baking soda in fridge
Have eye exam
And yet, others are on an “as needed” basis.
Cut toe nails
Vacuum inside car
Shave back
But what I ask is… “Why wait to make a change or a new beginning?”
Why wait till a new season? Till the new year? The next month? Or, even Monday?
Do it now. This moment. There’s nothing stopping you. Do something right now to improve your being. It doesn’t have to be huge. Drink water instead of soda. Eat a piece of fruit. Stretch your weary legs. Take a deep breath. Dance to music. Make a silly face.
My point is, don’t wait to begin anew. Certainly, our nemesis multiple sclerosis doesn’t wait around. It doesn’t wait for the following day, week or month to wreak havoc. Heck no, that bad boy changes constantly. So we must be willing to change with it.
A fresh start, or a new beginning can happen anytime YOU want it to. There is no need to put it off till the flip of a calendar. You can make a change right now. This very instant.
Replace car’s air filter
Have an MRI
Clean dryer vent
Okay, okay, I understand the importance of replacing batteries in one’s smoke alarm—but don’t put a timeline on improving yourself.
Get started right now. That other stuff can wait.
*When not shaving his back, Doug writes goofy stuff about MS and other topics on his humor blog at myoddsock.com
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.
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.
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.
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.
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.
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:
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.
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…
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.
Next, hold that glorious breath for a seven count. One, two, three, four, five, six, seven.
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 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.
Living with MS can be super stressful, especially when you’re living in the middle of a pandemic. Now is the best time to start practicing stress management techniques to help you overcome stressful moments. Here are a few ideas for stress management that can help you get through tough times.
· Exercise
Keeping your body as active as possible on a regular basis is a great way to balance your nervous system and flush out those inconvenient stress hormones.
· Eat a balanced diet
Well-nourished bodies manage stressful moments better. Eat more fruits and vegetables, avoid processed foods and sugar, and drink plenty of water.
· Connect with friends and family
Although most of us are seeing our friends and family online or on a virtual basis, it still helps to release stress hormones by seeing their faces and hearing their voices. Even when it is through a screen.
· Have some “Me” time
If you have a hobby or something you love to do, schedule some time to do whatever it is that you love to do. Whether it is reading, writing, napping, or watching tv, makes sure you spend some time doing what makes you feel happy and relaxed.
· Get a good night’s rest
Sleep is extremely important. Getting a good night’s rest can set your day up for success just as much as a poor night’s rest can start your day off on the wrong foot. Getting between seven and eight hours of sleep can actually improve your ability to manage stress.
· Talk to a mental health professional
If you are feeling overwhelmed by stress and are struggling to effectively cope and mange life’s stressful moments, it’s important to seek professional help.
Your health and life are absolutely worth it.
If there is any doubt that multiple sclerosis (MS) is one of the most misunderstood diagnoses, then all one has to do is be a fly on the wall when someone with MS shares that they are living with the condition.
To find out more about all the ridiculous things people say when they learn someone has MS, we reached out to followers of our Facebook page. We asked community members to tell us: “What is the silliest, funniest, or most face palm-ish response you have heard when you told someone you have MS?”
Responses from more than 300 community members poured in. Here are some of their answers.
Doctors are not sure what causes MS. They believe it is triggered by a combination of factors, such as genetics, an abnormal immune response, and environmental factors. Still, that has not stopped some people from blaming MS on someone’s lifestyle, dietary choices, or even negative thoughts. Many in the MS community have been accused of living their lives in a way that made them responsible for getting MS, which is not the case at all.
“My sister once told me that it was my own fault that I have MS. That I should have taken better care of myself.”
“I had one girl tell me it was because I watched the news and ‘took that negativity into my body.’ All I have to do to be cured is change the channel?”
“When I was first diagnosed, the on-call neurologist at the ER said it was my fault because I was not taking vitamins as I should be after gastric sleeve surgery.”
“Do you think you did something to cause it?”
Curiously, community members shared that people have told them they were too young or too old to have MS. Most typically, the diagnosis shows up between the ages of 20 and 40, but that does not mean it cannot show up sooner – or later. MS does not discriminate based on age.
“I was in the hospital after just being diagnosed when my aunt said to me ‘You are too old to be diagnosed with MS. Uncle Ronnie was diagnosed at a younger age. You do not have MS.’ I was 44. She still refuses to acknowledge I have MS.”
“You are awfully young to have that.”
So many people shared that strangers are more than eager to comment on their diets, even if they do not know the person well. Diet does not cause MS, nor can diet cure it.
“A ketogenic diet will cure MS and Hashimoto’s! I have Hashimoto’s too.”
“You should change your diet. This from someone who has no clue what I eat.”
“Have you tried cutting out those artificial sweeteners from your diet?”
“You just need to cut out sugar!”
Yes, there are medicines that can bring relief from symptoms and slow the progression of MS, but there are no cures. A few community members shared that people have suggested some rather unusual “cures” for MS.
“Years ago, my friend’s boyfriend asked me why I could not just have the lesions on my brain and spine removed to fix the problem?”
“They said they had it too, but their MS was cured. I said there was no cure. She said she was cured because her ‘myelins’ were adjusted.”
Thank you to everyone who offered answers. It is our hope that people who read this better understand what it is like to have MS thanks to your willingness to share your experiences.