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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Recovering from ‘Overdoing It’

Recently, one of our community experts wrote an article detailing how she recovers after a day of “overdoing it.”  Whether overdoing it means doing too much physical activity, traveling, or just pushing yourself past your limits to take a shower, so many of our community members could relate to this feeling.  Whether this occurs frequently or only occasionally, you are not alone!  So many people responded with what overdoing it means to them, how it frustrates them, and they you recover.  We received so many wonderful comments, we wanted to feature several to share with everyone!

The Overall Frustration of Overdoing It

“For me, overdoing it brings foot drop, a very bad mood, balance issues and trouble getting things into words. Oddly enough, reading books gets hard too……my mind just can’t seem to concentrate”

Overdoing it is rough and what might get you one day, might not be as bad on another day. You never really know until you’ve done it. And dealing with those who have no idea what it’s all about only adds to the problem”

“It stinks when ‘overdoing it’ consists of walking my child to the bus stop so she can get to school, coming home to make myself a bowl of cereal, and going all-out and brushing my teeth immediately after eating!”

Overdoing it can take on many forms and can be caused by completely varying triggers, causing much frustration and agony.

Attempting to Avoid Overdoing It

“I try to pace myself and not schedule too much for one day, but I also want to live as much as I can while I still can.”

“It is important to pace yourself which is why it’s important to put some breaks in between long days. But even doing that I’m still exhausted”

“I’m trying to make sure I eat healthy and pace myself, but it’s really difficult once I try. I’m still looking for a balance between work, classes and personal life”

Even the best laid plans and precautions can still lead to exhaustion later.  If this sounds like you, you are certainly not alone!

What to Do Once Exhaustion Sets In

“For me, the fatigue is the hardest hurdle because you can’t navigate around it. It must be recognized, respected, and my body rested. Always when it’s the last thing I WANT to do. Surrender. But meditation and focusing on releasing that anxiety from being forced to stop is an ongoing practice”

“I’ve been getting OT/PT and they made me keep a log of activity. I can do 1 to 2 activities a day. We practice taking breaks. Breathing between steps. Sitting before it’s too far. Laughing more”

“Try everything you can imagine to pull yourself through this maze. Exercise at home if you can’t get out. Don’t feel bad if you can’t accomplish tasks as you once did”

“Today I went in my room and took a nap. I explained that I had to. When I got up I apologized and told them I really had to take that nap”

“Sleep, shower, sleep, sleep, and sleep!”

Everyone handles their exhaustion after overdoing it differently.  Whether it’s distracting yourself with a good book or movie, getting some exercise, shifting your mindset, or just getting some good, old-fashioned rest, you know best what your body needs!

Let us know how you overcome the exhaustion after overdoing it.  Your advice may help someone else in the community who finds themselves struggling with this experience!

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Wellness Needs a Nap

By Lauren Kovacs

I can’t stress this enough.  Fatigue is a relentless beast. If we want to be as well as we can, sleeping helps.  From marathon naps to a wee kitty snooze, it is a must.  Some days more than one is needed.

Don’t resist the craving to sleep.  Cave in and watch the back of your eyelids. Mid-day naps work for me. Even my dog knows when it is my naptime.   In this sense resistance is not good.  Don’t fight sleep.

I sleep with the phone and I only answer it if it is my kids’ schools.  Most people, with two brain cells to rub together, know I am out of order during naptime.  I have “out of area” numbers blocked by my phone company and if something gets through, I turn it on and off to get it to stop ringing.

Blocking out light and sounds help me too. I have a hard time with glare and sleeping in sunglasses is uncomfortable.  I put something over my eyes. Eyelids are not enough and fabric blocks it out.

A few drops of lavender oil on my sheets can be relaxing.  I also have a hard time clearing my mind.  Boy Scouts, soccer, Taekwondo and many other scenes in life are doing the Tango in my brain all night.  I draw the curtain on that sleep-sucking dance by reading.  A few pages of fiction turn the pages of life.

Listen to your body.  It whispers wellness secrets.  If you are too hot, your body tells you.  If you need to sleep your body will tell you.  LISTEN.  If your body says it needs chocolate…  Listen to it!

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Symptoms that Effect Relationships – The Infestation of Fatigue

By Lauren Kovacs

Relationships can be with your spouse, sibling, friends, parents or any living thing really. Sadly, MS contaminates everyone and every thing. It is ever changing. There is usually one symptom that takes the cake.

For me, the winner is fatigue. I swear a cloud of sleepy juice stalks me. It lurks behind corners and lays on me like a wet blanket. It will mess with every relationship and can smother events.

I often have to skip functions because of fatigue. The way I deal with it does not always jive with a particular gathering. Routines with MS work well, but not every event works around your routine. MS is not always flexible. People are happy to let babies nap; however, full grown adults don’t seem to get that same level of understanding.

I take half my “awake” medicine in the morning, nap, and then take the other half. This usually helps, but caffeine gum and coffee are heavily leaned on too. Not the best options.

My spouse knows my routine. Most people very close to me know it. There are times when my routine can’t be followed. Boy Scouts, soccer games, and Taekwondo sometimes jump in the path of my routine. I bend MS, as much as I can, in those situations.

The biggest effect of this is guilt. I fight guilt over missing the Pinewood Derby because I had to be at Taekwondo in the morning. I have guilt because I had to miss a soccer game because I have to nap. My parents had to go instead. It is a ripple. Asking for help often rolls into guilt.

I have to rest and miss some things and rely on my spouse, parents, or whoever. I deal with this balancing act all the time. I try not to tip the scale. Guilt and pride are always battling.

The guilt of asking for help and the pride of doing it myself tip back and forth constantly. People get mad because you didn’t ask for help, but the guilt of being a burden is often worse.

We carry heavy and complex weights to the scale. You have to try and balance that scale.  Do the best you can. Others often do not see this part of MS. Getting those scales to balance can cause fatigue. Take a deep breath, do what you can, and have some chocolate.

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Has Your MS Caused You to Embrace the Hermit-Life?

“I make plans, I cancel plans, all in the name of MS.”

“Friends just don’t understand, I’d rather just stay home.”  

MS can be overwhelming in so many ways that most others can’t understand or relate to.  Many individuals with MS find it can be exhausting and tiring to get out and socialize.  The constant forgoing of plans, canceling on activities that you may have looked forward to for weeks because of a flare-up, or the feelings of exhaustion and frustration that come along with your daily MS battles may push you more and more towards a hermit-like life. We recently shared an article with our community from our advocate, Laura, called Has MS Made You a Hermit? The response from our community members was amazing. Here are some highlights from what they said.

“I tend to push people away that want to help, forgetting this is new territory for them too.”

“Regarding help and independence, it’s annoying because OFTEN people want to help me when I DON’T want help, and don’t want to help me when I DO want/need help”

It’s challenging going places and dealing with people who insist on “helping”.  Sometimes, when you go out, others feel the need to constantly try and “help”, when, in actuality, you are capable of doing things on your own.  It just may take a bit longer than others, which is totally okay!  However, it can get taxing to continually try to explain this to others.

“I feel this way a lot, but sites like this keep me going and help me realize I’m not alone.”

“Thank you for speaking out with this piece. Once again, so relieved I’m not the only one.”

Social Media can also be emotionally exhausting on anyone, yet even more draining for those with a chronic condition.  It’s tiring for those that are researching facts and cures and deciphering between lies, truths and half truths.  Social Media can trigger many emotions when reading others comments and situations, and can cause a lot of confusion and frustration.  Conversely though, social media sites and communities like ours can often provide a safe social haven where you can get the social exchange you might occasionally want, without having to leave your home or expend a lot of energy!

“For me, it’s been easier to not go out and talk to people. Fatigue, cognitive problems and the fact that I really don’t enjoy social events that I would have had fun at before…”

“Been easier to hang out with my dog since she doesn’t ask questions.”

“I love my friends and family, but fatigue says I love my bed a tad more. And with Netflix, popcorn, and wine, I can’t say it’s not time well spent…”

At times, going out socially can cause apprehension and overwhelming feelings, as some attempt to go out for a fun social evening, yet try so hard to avoid negative conversations and situations.  It really can set you back and take a toll.  Sometimes you may just want a rest from all the exhaustion that these situations bring.  Especially if you feel like just getting through each day is a chore!

It is completely understandable if you just want or need to to stay in and stay to yourself to avoid the grueling challenges out there.  You know the balance you need, and what your body can and can’t handle.  It’s completely okay to say that a hermit’s life is the life for you when you need to!

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The Ponds of Socialization

By Lauren Kovacs

Being with family and relationships are like skating on thin ice. Caution and preparation for these are something we need to do, especially near the stress of the holidays. Using some information can help us skate safely onto the pond of socialization. Having MS requires more of everything.

Like anything, we cannot “wing-it.” We cannot fly by the seat of our pants. The biggest thing to remember is to stay calm. Know your limits. Our speed is slow or “No.”

This is where knowing where the thin spots are will help.  I like to know people’s personalities ahead of time, if I can. Going to family events or parties may take some personality planning. I like to know who respects the limits of my MS. Know your audience, so to speak.

Know the thin spots and stay clear. Know what situations and who is safe. This will reduce stress. Pick events that keep stress and fatigue to a minimum.

Some people you may have to physically stay away from. Other situations or people you may have to emotionally stay away from. MS is tough enough without someone commenting how his or her sister-in-law’s cousin’s friend ate something and is fine.

Attending work related parties is part of PR for my husband’s job. I always use my chair.  It cuts down on fatigue so, I can stay a bit longer.  I am social, but in the evenings I am exhausted and the MS “misbehaves” more. My speech is garbled so, I mostly listen.  Sounding drunk at a work party is not wise. I try and eat before I go too.

Eating is very difficult for me. I can more easily refuse food, if I am not famished too. For me, it makes the gluten gods happy. I can be polite and have one or two bite size hors d’oeuvres. I don’t like to wear food in public so, I stay away from that thin ice.

If you are going to an unfamiliar place, take note of bathroom locations the minute you get there. Wear easy off clothes. When I gotta go, I gotta go now. I find thigh-high tights are easier than regular tights or hose. They are a bit drafty, but it is better than dealing with hose when now means now.

Know your limits. Don’t over party because the recovery time is not worth it. Try to stick to any diet restrictions. I mostly eat gluten free, but I allow a cookie or something. Balance for me is key. With a bit a planning, I can have that delicious gluten filled cupcake and be social. Be mindful of your limits and needs. A straw is a must and I carry an extra one in my purse. Most of all, try to enjoy the season.

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