Parts of Life That Look Different After MS

Physical weakness, fatigue, impaired ability to remember information. MS certainly can take a toll on what day-to-day life looks like. For many living with MS, you now have a greater appreciation for what life looked like before the diagnosis.

Because it’s very common to miss aspects of life that fell victim to the disease, we wanted to start a conversation about the topic. On the MultipleSclerosis.net Facebook page, we asked you to share what you miss most.

Here’s what you had to say. Continue reading

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My MS Number: We Became Experts at Adapting to Change Before We Knew We Had MS

By Stacie Prada

I’ve started thinking it should be the standard to have our time with multiple sclerosis described with two numbers. It would be similar to blood pressure readings where two numbers have meaning on their own but give a fuller picture of a person’s health when described together. Our time living with MS could be described as the number of years since we were diagnosed over the number of years we estimate we’ve been living with MS.

My MS Number: Adapting with Multiple SclerosisFor me, I was diagnosed Continue reading

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The Value of Doing Nothing: Same Thing, Different Feel

By Stacie Prada

It’s interesting to me that the same task can feel stressful sometimes and relaxing others. It really shows that it’s not about what I’m doing, rather it’s how I feel when I’m anticipating or doing it. It’s how I judge the task in the moment.

Needing to cook dinner after a long workday may feel like one more burdensome thing that needs to be done, while spending hours in the kitchen baking or creating a new dish on a weekend might be a therapeutic activity resembling meditation for the focus and relaxation I feel.

The same can be true for Continue reading

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Become a Creature of Habit

By Doug Ankerman

April’s theme of “Staying Organized” draws a collective “yeah right, when pigs fly” from most.

Adding your multiple sclerosis to the mix makes it even more overwhelming.

So, I say let’s break it down into something smaller. Something attainable. And simply become a “creature of habit.”

By that I mean make it a habit of putting your stuff in the same place every day.

Form a new habit - always put your wallet in the same placeHere on the counter is where Continue reading

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Getting Organized and Staying Organized: It’s a Lifesaver When Living with a Chronic Illness

By Stacie Prada

I love being organized. I love containers and labels. I love having my finances organized and being able to find paperwork when needed. It brings me a sense of peace to plan things, be prepared and know what to expect. When everything has a place and is put away, it brings me joy. Living with a chronic illness like multiple sclerosis can be the exact opposite of that. It’s unpredictable, it disrupts plans, it can be invisible, and often it doesn’t have a logical reason behind the symptoms it brings. It can be manageable, but it’s not curable. Unlike my belongings, it can’t be fixed and controlled.

I know not everyone Continue reading

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How I Find Laughter in the Face of MS

By Alene Brennan

Incurable. Degenerative. Chronic. The weight of the words is heavy. The reality of living with them is even heavier. We can easily sink into the quicksand of worries and struggles or… we can find acceptance in this beast of a disease and sprinkle in a heavy dose of laughter.

Laughter is Medicine

We hear it often that laughter is the best medicine, but what actually happens when we laugh? And is laughter strong enough to take on MS? Continue reading

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Sneaky Alternatives

By Lauren Kovacs

Alternative approaches to MS are pretty personal. Many of us will try just about anything to add to our medication routine. Short of crazy stuff like putting fried eggs on my eyes or sleeping with spiders, I am guilty of trying lots of alternatives.

Some things might help some. I heard massage is great, but it turns me into a sleepy blob. Too relaxed? As if I don’t already fight the fatigue monster 24/7, massages rubs me into a sloth. Not for me. Continue reading

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What Does “I’m Tired” Mean to You?


For some, saying the words, “I’m tired”, may indicate a lack of sleep, or perhaps the end of a long, exhausting day. However, for those living with MS, these two words can mean so much more. Fatigue is one of the most common, and one of the most life-altering, symptoms of MS. Of the many issues associated with MS, fatigue is one that can have the greatest impact on daily life and an individual’s ability to do the things they love. We recently published an article titled, “What I Really Mean When I Say, ‘I’m Tired’”, where our contributor, Calie Wyatt, compared MS fatigue to sinking in quick sand. Cali vividly describes her ‘biggest demon’ as her unrelenting tiredness, and how it brings her down every day. She also tells us how difficult it is to get others to understand what it means when she says she’s tired.

In response to this article, we asked our community members to help explain what their fatigue feels like to them, and the response was overwhelming. Continue on for some of the great responses we received.

Mental and physical exhaustion

Feelings of extreme mental and/or physical exhaustion are some of the most common descriptors of MS-related fatigue. Many of our community members shared how debilitating this experience can be each day.

“Living with fatigue is grueling. I have days where trying to form a thought, let alone a sentence, is nearly impossible”
“I try not to put myself into situations where I get fatigued, because it can be dangerous because I can’t think straight and get anxious”
“I am tired 24/7. It has become my new normal”
“It is a weight pulling you down! Mentally and physically”
“It feels like your body is shutting down and it’s too weak to hold you up”
“I try so hard to forget my fatigue & be active & fun, but it ALWAYS drags me down. My mind knows I’m fun, but my body just won’t let me. I must constantly fight my body & pick my battles to do the most important things”
“I would often say it is like I am being dragged to the ground which eventually swallows me up”

Frustrating

Others who aren’t living with multiple sclerosis, or who don’t have fatigue that comes from a chronic condition, may struggle to understand MS-related fatigue and the ways it limits activities. This lack of understanding can be incredibly frustrating. Not to mention the frustration that already comes with the fatigue on its own.

“Trying to explain this tired we have is almost an exercise in futility. The only ones who get it, are those who have experienced it! Nothing ticks me off like saying I’m tired and having someone say, ‘me too’. What I wouldn’t give to be their kind of tired!!”
“I am frustrated by my fatigue. For me, fatigue affects my ability to think straight as well as being tired. The hardest thing for people to understand is how much effort I put into NOT getting fatigued.”
“Sometimes I want to scream, if I wasn’t so fatigued! My fatigue and exhaustion consume me. I also have fatigue that alters my daily activities for many months at a time. Stress doesn’t help. A description I’ve often used to describe the fatigue is that I feel like my batteries have been depleted, removed, and I’m just running on empty. And I can’t find any way to recharge them, and there are no charged batteries to be found”
“The fatigue is dominated by frustration and some anger; compounded embarrassment”
“It is frustrating to try to explain to people that yes, I look tired but getting more sleep won’t fix it and is harder than it sounds!”

Physically cannot move, talk or breathe

MS-related fatigue can be so intense, that it may feel like quick sand physically pulling the body down. This feeling can impact a person’s ability to carry out basic functions, such as moving, breathing, or talking.

“I’ve felt like I am too tired to even breathe”
“I say I feel like a melting ice cream cone”
“I would often say it is like I am being dragged to the ground which eventually swallows me up”
“There are days that I feel like I can’t move. My extremities feel as if they are made of lead and my head feels all fuzzy”
“I have days that I feel too “tired” to breathe, talk, move…. it’s gotten bad though, I know, when I just don’t feel like it’s worth trying to say anything. It just seems like the thought of talking is overwhelming…and I take constant big breaths because I don’t feel like I am getting enough air”
“I feel constantly tired and dealing with that heaviness and sinking in quick sand feeling. And don’t really care to have others understand anymore because they simply never will”
“I feel like gravity is 15X greater over my body right now”
“MS fatigue requires all my energy for blinking and breathing”

It’s quite clear that MS-related fatigue is not only debilitating and real, it’s also unique and unrelenting. Our community members did an excellent job trying to describe this frustrating experience, however, it’s hard to fully understand this phenomenon unless you are living with it every day. MS-related fatigue can be a constant struggle, and the words “I’m tired” often don’t even scratch the surface of what’s really going on. These two words can take on a whole new meaning for those struggling with MS-related fatigue.

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Always Adjusting to Life with MS

Recently, one of our community contributors, Nicole, wrote a thought-provoking, and emotionally charged piece titled, “Still Learning How to Live with MS.” The title of the article rings loud and true to her message within it. Nicole outlines a Sunday morning where she feels on top of the world. She feels an extra kick of energy, and a desire to take on the day. She adds more chores and errands to her to-do list than normal, and although she is questioned on this decision by her husband, she continues on with her grand plan. Throughout the day, Nicole feels great, but by early evening, she feels weariness set in. Although this is a common pattern for her at this time of day, this fatigue is heavier and consumes her more and more as the minutes tick by. She is so weary, she is unable to eat on her own, nor get fully ready for bed.

She reflects on this day and realizes that although she has been living with MS for almost 18 years, there are still days that get away from her and bring unexpected tribulations. She recognizes that, although she hates her MS, she still needs to respect its limitations and continue to learn from it. Especially when it comes to slowing things down, asking for help, and taking a break—despite what her short-term energy levels feel like. After this article was posted, comments poured in from across our community, and it became apparent that Nicole was far from being alone in her experience. Some of the sentiments shared by our community members are collected and shared below.

Always battling the fatigue

Many of our members weighed in on their constant battle with fatigue, and how although it is a constant, it can still be incredibly frustrating and knock them off of their feet (both literally and figuratively).

“I fight with myself every day. I expect myself to do more and be more than I can do or be. I never get my stuff done all the way. My fatigue is horrendous. Sometimes I get so tired, I just have to nap because I can’t do any more that day or moment and if I try to stay up, sleep overpowers me. I hate asking for help too or needing it. I feel helpless.”

“The least little thing wears me out. Tried to play with my great grandson who is 2 and a half, and it just about did me in. I was so exhausted and hurting so bad that I went to bed at 7:00pm.”

“You hit the ‘brick wall.’ Happens to me all the time. Need at least three days to recover completely.”

“It’s still difficult for others to understand what happens to me if I don’t rest…lots. The amount of energy that is needed to push myself through a day is exhausting. I explain that I can manage some things, but not all things. I have to keep reminding them of this spms that takes my strength and makes my life very different from theirs. Most do not understand the utter exhaustion.”

“So true and so hard to restrict what you do when you feel like you can do it, but pay hard for it later.”

“It’s hard being an “A” person in a “B” body.”

Constantly trying to take control when energy is high and forgetting limitations

So many of the comments shared with us revolved around trying to capitalize when energy bursts strike. Although this may be a rare occurrence, some of our members feel tempted to take full advantage of them, only to be back to extreme fatigue and pain later. Balancing energy and the desire to get things done with true physical limitations is a constant learning curve.

“Yes, it is hard to pace yourself. I have had MS formally since 1990. I try not to overdo it, but when I am feeling good, I forget and try to get everything done. We have to remember that we will pay for it later. Keep going and don’t give up!”

“Key word being ‘forget.’ Usually, I start each day with positive thoughts and energy. I can do anything until I can’t. Then I remember. Each day ends the same with fatigue and pain. And then, a new day is here to repeat itself. I do this ‘forget’ thing all the time. I need to pin a list of ‘don’ts’ on my shirt.”

“‘Sometimes I want to be like everybody else’ is what gets me in trouble every time. After 10 years you’d think I would know better, but sometimes it’s worth trying. It’s getting harder thought to push myself. I shut down quicker than I used to and just can’t do it some days no matter how much I want to.”

“Thanks for reminding me again to respect my limitations. I also forget. Your thoughts are timely because I was just saying how I’m tired of not doing much. I always want to do more and not plan so much for fear of exhausting my body to only suffer another exacerbation! My only advice to myself is to try to appreciate what I can do and find goodness in those accomplishments, as few as they may be sometimes. There is so much beauty in enjoying little things. I try to tell myself, when you slow down, you see more! Hang in there, and know you’re not alone.”

“As others, I can relate. I have learned to limit my chore or errand list and I now even literally write the word REST on my lists, so I don’t forget to take the time out. I think the still learning how to live with MS is an ongoing process for us.”

Do you feel as though you’re constantly learning from your MS? Whether it’s learning to battle fatigue, remembering and respecting limitations, or a completely different experience we didn’t mention, share with us if or how your relationship with MS is evolving.

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Physical Wellness with Aquatic Exercise

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

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

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

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

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

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

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

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