The “Common” Cold

It’s that time of year again. Everywhere you turn, it seems like someone is sniffing, sneezing, or coughing. For most people, cold season is a nuisance, but for people with MS, cold season can be debilitating, and even lead to health complications.

Cold viruses often impact people with MS differently than the rest of the population, making cold prevention and recovery very important. This month, many in our MS community shared their experiences with the common cold and we thought you might relate as well. Do any of these sound familiar to you?

Symptoms & Recovery Time

“The past two winters, I have caught my daughter’s cold and I get hit HARD to the point I have to go to emergency and get booked into the hospital.”

“Like having life sucked out of you”

“Whenever the rest of my family gets a cold or virus, it passes within a week. When I catch it (and I almost always catch it) it lasts for weeks, PLUS I get pseudoexacerbations on top of it. No fun.”

It takes me 3 times as long to get over a cold than it does anyone else. So frustrating!”

“When I get a cold now, it lasts 2-3 weeks”

According to our MS community, the “common cold” is anything but common. While most people recover from a cold in seven to ten days1, for MS patients, it can take much longer. According to many of our community members, cold symptoms are also more intense for people with MS, often making underlying MS symptoms more noticeable.

In addition to typical cold symptoms (such as fever, cough, congestion, body aches, and headaches1), cold viruses can also lead to MS pseudoexacerbations, which usually last less than 24 hours and may mirror the symptoms of a full-blown MS relapse. Because a fever can trigger a pseudoexacerbation2, you may want to ask your healthcare provider if over-the-counter fever reducers (such as acetaminophen or ibuprofen) are safe for you.

When You’re Surrounded by Sick People…

“Every time my parents get sick then I will catch it…I just wish they would learn about MS.”

“Unfortunately for us, even the hospital and doctor office can be risky.”

“People just don’t understand, no matter how much you explain it to them.”

I try to stay away from sick people.”

“Do NOT expose yourself to sick people. If they don’t get it, tough. Please protect yourself.”

MS is understood to be an autoimmune disorder.3 In terms of immune health, many community members have shared that MS has made them more susceptible to colds, as well as other illness. According to many of you, being around sick people almost guarantees that you catch whatever’s going around, making doctor’s offices, public transit, and even the workplace risky during cold and flu season.

For many community members, it can be difficult to avoid the cold germs, especially without accusations that you’re being “rude” or “overdramatic” when asking sick people to keep their distance. However, if you’re managing MS, your health is the priority. To stay healthy during cold season, many community members recommend avoiding sick friends, family, and strangers all together, and talking to people about how MS affects your immune system.

Cold Complications

“Sinus and ear infection, felt like I had the flu. Going on day 8. Ugh.”

“I have a cold and 2 infections right now. It can’t ever just be one thing.”

“Ear infections”

In addition to experiencing more intense cold symptoms, a longer recovery time, and increased susceptibility to the cold virus, individuals with MS are also more susceptible to infections.4 Common colds can spread to the ears, chest, and sinuses,5 leading many MS patients to experience other complications as a result of a cold, such as ear infections and sinus infections. Because MS can make it harder to fight infections, be sure to talk to your doctor if you think you’ve developed an infection, or if you experience a pseudoexacerbation lasting more than 24 hours.

Staying Healthy… or Recovering

“NO double dipping, sharing drinks, utensils, and most definitely, the cook must NOT lick the spoon the put it back…Even if your family and friends are not showing symptoms, they could have picked up something.”

“Wash your hands all day, all night, and eat tons of veggies. I drink a blender full, and it really helps. Take good care.”

“Wash your hands, don’t kiss anyone (except your honey), tons of veggies, exercise as tolerated, and get LOTS of sleep.”

As we move into cold and flu season, many of our community members have suggestions for staying healthy and cold-free, such as good handwashing, maintaining a healthy diet, and getting enough sleep. If you do develop cold symptoms, consider these tips for fighting a cold. To prevent the flu, you should also talk to your healthcare provider about getting a flu shot, especially if you are exposed to family members and co-workers who may carry the flu virus.

Works Cited

  1. Mayo Clinic. “Common Cold.” Mayo Clinic, www.mayoclinic.org/diseases-conditions/common-cold/ symptoms-causes/syc-20351605. Accessed 27 Nov. 2017.
  2. Editorial Team. “Is It an MS Relapse or a Pseudoexacerbation?” MultipleSclerosis.net, Health Union, 6 Mar. 2017, multiplesclerosis.net/living-with-ms/relapse-or-pseudoexacerbation/. Accessed 27 Nov. 2017.
  3. Health Union. “What Is MS?” MultipleSclerosis.Net, Health Union, multiplesclerosis.net/what-is-ms/. Accessed 27 Nov. 2017.
  4. Montgomery, S., et al. “Hospital Admission Due to Infections in Multiple Sclerosis Patients.” European Journal of Neurology, vol. 20, no. 8, Aug. 2013, pp. 1153-60, dos:10.1111/ene.12130. Accessed 27 Nov. 2017.
  5. NHS. “Common Cold: Complications.” National Health Service, NHS, www.nhs.uk/conditions/common-cold/complications/. Accessed 27 Nov. 2017.
Share

Getting a Spinal Tap When You Have MS

Spinal taps, also called lumbar punctures, are important diagnostic tools, not only for MS, but for a multitude of neurological conditions. A spinal tap can help uncover valuable information about your nervous system. We at MultipleSclerosis.net recently posted an article by our very own Devin Garlit’s called “The Joy of getting a Spinal Tap,” in which Devin discusses his spinal tap experience during his MS diagnostic journey. It was a hit! So many of our community members responded and shared their spinal tap experiences as well so we’ve compiled some of those stories to share with you!

The Numbers

In the article, Devin describes his experience with his second spinal tap. Some people may escape the spinal tap altogether, while others may have multiple lumbar punctures throughout their lives. Many of you weighed in on the varying number of spinal taps you have endured.

“My first and hopefully final spinal tap was horrible…”
“I have had 4.”
“Had one and will never ever get another one!”
“I have had 3 and will never have another.”

The Test Itself

Some of our members described the process in terms of the test itself, and described it as fairly simple and easy. Understandably, others found it to be quite the opposite. Whether you felt your spinal tap was a walk in the park or complete misery, your experience will be unique to you. No matter how you fell about the test, your experiences are completely normal.

“Mine was a piece of cake!”
“I had a very good experience. The procedure was over in seconds and I had to lay completely still for the next hour. My wife drove me home and I spent most of the next 24 hours as vertical as possible, drinking plenty of water. I suffered no ill effects.”
“My spinal tap was the worst thing I’ve ever gone through.”
“I barely felt the needle!”
“Worst experience ever. I cried the entire time.”
“Mine was easy- peasy!”
“Worst experience of my life, hands down.”
“I was lucky. I never felt a thing. No headache either.”

The Headaches

One other interesting thing Devin shared with us about his experience was how important it can be to listen to your doctor, lay down, and avoid activity afterwards. Severe headaches after the test, often referred to as spinal headaches, can occur. The spinal headache he described was an experience so many of you shared. Some of our community members even had to have a blood patch to relieve spinal headaches afterwards.

“I was nauseated and hit with the most painful headache of my life…So my advice with spinal taps is to listen to the doctor and rest up afterwards.”
“I was told to lay as completely flat as possible the whole day. And the headaches were like a caffeine headache, so soda was kept handy.”
“I had my spinal tap on a Friday and had to live with the headache until Monday when they could do the blood patch.”
“I had a spinal headache after mine as well. I had to get a blood patch. Thankfully the patch relief was instant, but wow that is a pain you never forget.”
“I had massive headaches for days.”
“By the time I had my third lumbar puncture, I learned to demand the magic words of BLOOD PATCH immediately following the procedure.”
“My spinal tap resulted in an absolutely massive headache that I couldn’t even lift my head up (and I rested as I was in hospital). I later had to have a blood patch & the headache disappeared immediately thank goodness!”

How about you? What have your experiences been like? We’d love to hear your stories! Although spinal taps are not always a pleasant experience, they can be quite helpful when it comes to learning more about your MS. Sharing your tips and experiences on how to get through this exam can help provide relief for other members during their future tests!

Share

Everyone Has a Unique Diagnosis Story

Everyone living with MS has been diagnosed at different stages in their lives and each has a unique story and experience. We wanted to know more from our community members, so we asked a simple question: “At what age were you diagnosed with MS?” Not only did several hundred community members respond, but we heard bits and pieces of so many different diagnosis stories. Here’s what some of our community members told us.

Diagnosis at any age

Many of our members reported completely varying ages of diagnosis, including the following responses:

“At 24 I was diagnosed… now it’s 10 years and 4 kids later.”

“I was 29 years old, started with numbness & tingling in left foot… within a couple of days both legs were numb & tingling.  After a month & a bunch of tests I was told it was MS.”

“They told me in my 20’s it might be MS, I didn’t get a diagnosis until I was 50.”

“I was diagnosed at 43 in Jan 2014.”

“For me it was two years ago at the age of 55 years old.”

“I was diagnosed at the age of 60 in 2015.

“I was 41, but had symptoms a few years prior.”

“The official diagnosis came when I was 21

“I was diagnosed at 52 years old.”

There is not often a direct path to diagnosis

Many of our community members have found that confirming their MS diagnosis was not a simple nor a fast process. A large portion of our community members experienced symptoms for months, years, or even decades before getting an actual diagnosis.

“I was 23, but I had undiagnosed left sided weakness and heat intolerance since about 14

“For me it was at the age of 29, but I started showing symptoms since the age of 15. I was hospitalized for weeks because of numbness on my left side from head to toe. They ran the gamut of tests they had back then and had no idea…

“I was 38 but took 8 years to get the diagnosis!

“I was diagnosed at 43 years old, but I had been experiencing symptoms for at least 15 years. It almost came as a relief, because at least now I knew.”

“Diagnosed at 54, with weird symptoms for over 2 decades.”

“Symptoms at 26, diagnosed at 52.

“Probable diagnosis at 28 … definite at 33”

“My first symptoms at 45, final diagnosis at 48, after misdiagnosing and treating sinus area pain”

Incorrect diagnoses

Diagnosing MS can be a challenging process; early symptoms can often be suggestive of several other conditions. Not only did many of of our community members report having a long journey to diagnosis, but also, having stops along the way where they were misdiagnosed, or treated for something different.

“Diagnosed at 56….it took many years as it’s a disease that masks others…they thought it was Lupus for many years”

“I was 34 but misdiagnosed for 10 years”

“I was 33 years old, but was misdiagnose with Epstein-Barr for seven years”

“I was 29 but I had been misdiagnosed with hemiplegic migraines for year before”

 “At 31… Was told it was a brain tumor…

“I was diagnosed at 19 but had symptoms my whole life doctors thought I had a stroke or diabetes or just bad migraines”

Regardless of age, the road to diagnosis may not be a direct or simple one. An MS diagnosis can come at any time in life, and can change everything.  Whether you’re diagnosed at 15, 55, or 95, we’re here for you! We hope you’ll continue to share your diagnosis experiences with the MultipleSclerosis.net community.

Share

Coping with Toxic People in Your Life

Toxic people are completely exhausting and harmful to be around. Not only this, but they can also have a negative impact on your health.  Dealing with such individuals on a daily basis is unfavorable for anyone’s health, but it can be even more damaging if you are battling a chronic condition like MS.  As most of our community members realize, living with MS can make life difficult and can require a great amount support from those around you. When one’s support system becomes anything but supportive, it can have a damaging impact on your well-being.  We at MultipleSclerosis.net recently posted an article about the presence of toxic people in life and how to deal with them, and received an overwhelming community response. We had such a large response, that we wanted to capture some of those experiences, advice, and stories and share them with you!

Identifying toxic people and their behavior is important

There may be individuals that shrug off your condition as unimportant or unreal. They can’t even begin to understand what you are going through. These types of people can be dismissive and compare whatever you are going through to their situation. Identifying and avoiding these people (if possible!) is key.

“I have one person very close to me that just doesn’t get it, actually refuses to believe that I have MS.”

“Dealing with this is not fun; my so called friends don’t like to talk about it or hear about what I am going through.”

“I can’t work and my ‘friends’ call me lazy.”

“I hate it when my family members say, ‘You don’t look sick.’”

“My Mom tells me when I’m having a bad day to, ‘just stop thinking about it…If you don’t think about it, it will just go away.’”

“Comment made to me by an insensitive friend ‘Everyone has their burden’…..”

“I get it all the time, I mention I am tired … they are just as tired.  I mention my forgetfulness; they are just as bad. I mention my pain and theirs is worse.” 

“I hate when people say, ‘I get tired, too.’”

Toxic people don’t take the time to understand

Toxic people make you feel like a burden, and are generally unsupportive. These negative feelings are expressed not only verbally, but with actions as well.  These types of people don’t take the time to learn or understand what you are going through. If possible, it can be an incredibly healthy decision to avoid these individuals who don’t take the time to learn about what you’re going through, or who make you feel like you are too much effort to be around.

My Mom met a woman with MS and said ‘she seemed ok and active…You need to be more like that.’”

“It’s so not worth saying anything to anyone because they just don’t care enough to learn about MS.”

“Somebody told me once to ‘pull myself together.’”

“They just don’t get it or even try to get it!

“My husband has MS. His adult children refuse to see or understand how disabling his MS is. It is very frustrating”

We all know someone that is potentially toxic, and they can bring you down and affect your health and well-being.  How we learn to live with these people is up to us.  If at all possible, try to surround yourself with positive, supportive people who are better for your health and well-being. These individuals can make any day seem brighter and remind you that you are not alone in this. If you’re still searching for individuals like this in your life, or just want to expand on the network you have, our community is always open to new members, stories, tips, and ideas! We’re always here for you!

Share

Where’d that Bruise Come From?

If the walls and the furniture would stop moving I wouldn’t have any bruises

Do these words sound familiar: “Woah, how’d I do that?” or “When did I cut myself?” If so, you are certainly not alone. We recently shared an article about mysterious bruises that started quite the discussion amongst the community. With over 160 comments, it quickly became clear that unknown bruises, cuts, burns etc are a regular occurrence among many MSers, but how and why these happen is where it gets really interesting. Here’s what our community members told us!

That’s What Caused it?

While many of the bruises, cuts, bumps, scrapes, burns show up as if from nowhere, others have a very clear cause. Though sometimes it takes a while to realize what that cause is!

  • It took me a while to realize my bruises were from hitting my elbows on doorways to catch my balance when I was carrying the laundry basket.
  • I finally figured out my shin bruises were from those small carts at the grocery store. There’s a little bar across the bottom that hits my shins!
  • I’ll often notice a new scratch on my hands or legs and realize, a day later, it was from my cats
  • I can’t tell you how many times I’ve burned my hands cooking dinner and not realize it until I see the blister
  • We used to have a trailer hitch on our SUV. Weekly I unknowingly walked into to ball on the hitch while loading groceries. It took me MONTHS to figure out where the perfect blue circles on my knee were coming from.
  • What bothers me most is hitting my head as I get into the car. Like I’ve never gotten into a car before.
  • I thought I was in a secret fight club in my sleep lol. I wake up with random bruises all the time!
  • I used to wonder where a new bruise came from now I know! I’m so unsteady on my feet I bang into stuff all the time. It’s so common I don’t remember every bump!

Why Does This Keep Happening?

There are so many factors that could contribute to the increased bruising and wounds with MS.

I just fall more often now

  • Spasticity, muscle weakness and loss of balance are common with MS, and can cause serious gait problems and other mobility issues, such as “foot drop” or “toe drag”
  • And you may also be familiar with dizziness, or even vertigo, as part of the MS experience. Feeling as though the room or ground is spinning can certainly make one prone to falling

Half my body is numb

  • As many of you have probably experienced, numbness on body parts, or entire halves of the body, is one of the most common symptoms experienced by MSers. This is caused by damaged nerves inhibiting the transmission of sensations from the body’s surface to the brain.
  • And of course, when you don’t feel a bump or burn, it’s even more confusing to see a bruise!

My body is more prone to bruising and bleeding now

  • Some medications and that treat MS and other dietary supplements can also cause the skin to thin or lower the blood’s ability to clot, leading to an increase in bruising or bleeding
  • Additionally, there are other comorbidities, such as low blood platelet count or anemia, that can cause clotting issues and bruising

Ultimately, if you’ve ever had a friend ask you “What happened to your arm” or you’ve woken up in the morning to find your legs covered in fresh bruises without a clue, you are not alone!

Share

That Ringing in My Ears….

We recently asked our MS community about tinnitus, also known as “ringing in the ears”. Although ear-related issues are less common than other MS symptoms, many of described how the sounds of tinnitus impact their lives. Our community members pointed out several triggers for tinnitus symptoms, including stress, fatigue, loud noises, sickness, and sudden noises. If you experience tinnitus, there are ways to manage this often-treatable symptom, and know that you are not the only person with that annoying ringing in your ears!

Here are several ways that tinnitus has been described:

“I have at least 3 or more sounds at the same time”

“Mine is a high-pitched ringing like a security system in a mall”

“Sounds like a pulse, throbbing noise!”

“Loud hissing & screeching”

Buzzing, squealing, ringing, hissing, and screeching. Although many people describe their tinnitus as a high-pitched whine, tinnitus affects different people in different ways. For some of our community members, a pulsing, throbbing sound is common (this is known as pulsatile tinnitus), while others experience crickets chirping, buzzing, and screeching. Tinnitus also occurs at different volumes and intensities. While some people report a mild ‘background noise’, others explain how tinnitus sounds are so loud that their hearing is affected. Recently, experts have linked hearing and other auditory problems to nerve damage from MS, so if you experience hearing changes, you may want to talk to a doctor.

Our community members also noted:

“It makes me feel like I’m gonna go crazy”

“Noise noise noise! Affects your sanity!”

Regardless of what your tinnitus sounds like, recurring noise, especially coming from inside your body, can be annoying. When describing tinnitus, many of you shared how these internal noises make you feel ‘crazy’, ‘frustrated’, or ‘irritated’. Just like a baby screaming or fire alarm blaring, the symptoms of tinnitus can be difficult to ignore. Although many of our community members shared how tinnitus can be stressful, many of you also talked about ways to manage or drown out the tinnitus sounds…

“I use a sound machine at night and keep my fans on”

“I always put the TV or radio on for background noise”

“A little ‘white noise’ helps”

“Get cleared by an ENT first, rule out any other issues, then try some vestibular exercises”

“My neurologist sent me to an otolaryngologist who was well versed in MS. She gave me good advice”

Especially for individuals affected by MS, it’s important to get enough sleep. Our community members shared a variety of sleep-related strategies for tinnitus, including background noise (such as a fan, TV, or radio), a white noise machine, or even going to an ENT or other medical provider for treatment. For many people, tinnitus symptoms can be treated by getting the ears flushed by a doctor, changing medications, or sometimes chiropractic adjustments. Although tinnitus symptoms can be frustrating, consider trying one of these strategies to manage your symptoms, and reach out to your MS community for other ways to feel better!

“My neurologist told me that MS rarely affects the hearing”

“My neuro doesn’t believe that tinnitus is a symptom of MS”

“I think [my tinnitus is] MS related, regardless of what my neurologist says”

When describing their tinnitus symptoms, many community members shared stories of doctors and neurologists saying, “That’s not related to MS”. Although hearing impairment is a less common symptom of MS, more recent evidence shows that MS can definitely impact your ears, including tinnitus, sensitivity to noise, difficulty hearing, problems with language/auditory comprehension, and vertigo. Overall, MS symptoms are different from person to person, and many of you have doctors who agree that MS can cause tinnitus. However, even if your doctor has doubts about the association between MS and hearing-related symptoms, know that you are not alone, and consider talking to an auditory specialist or ENT who focuses on MS patients.

“Thanks for mentioning this little-known symptom”

“I have had ringing in my ears for a long time”

“Not *that* rare!”

“I’m surprised it’s rare. I’ve had it ever since my first attack in ’69”

“Wondered about this for sooooo many years”

Although medical experts often consider tinnitus a “rare symptom of MS”, for many of you, there is nothing ‘rare’ about it! When we first posted about tinnitus, many were surprised to hear that other people with MS has this symptom. As we learn more about MS together, we hope you will continue to share your experiences about the lesser known impacts of this condition, and hope you can find ways to manage your symptoms that work best for you!

Share

What do you want people to know about MS?

Living with a chronic condition like MS can be very difficult and frustrating.  Explaining to others what it’s like to endure life with MS can be even more frustrating.  Our community members have shared with us what they wish others knew and understood about MS.

Of the many symptoms that trouble those with MS, one of the most common that is misunderstood is fatigue.  MS-related fatigue is hard to understand, yet it is so important for family, friends and caregivers to comprehend.  All of us have experienced fatigue at one point or another, but MS-related fatigue is like no other.  MS fatigue is significantly different than fatigue experienced by those without MS and it is important to recognize the differences.

“MS related fatigue is not the same as being tired.”
“MS fatigue is not caused by losing out on sleep.”
“MS is exhausting and can cause extreme fatigue and horrific pain.”

MS fatigue is present no matter what. The simplest of tasks become incredibly difficult, and it takes so much energy to do things that others take for granted.

“Simple tasks like taking a drink or going to the bathroom are unbelievable difficult.”
“No amount of sleep or rest will help my fatigue.”
“It’s not like you are too exhausted to do something, it’s that you are too exhausted to do anything.”
“I’m not lazy, I just hurt and need to rest.”

Although fatigue is one of those invisible symptoms, it can significantly interfere with a person’s ability to function at home and work.  Our community members dealing with MS want others to know that fatigue is a real issue and it affects their daily life immensely.  MS-related fatigue can cause cognitive impairment, clumsiness, and poor balance.

“Fatigue is something I encounter at some point every day of my life.”
“My fatigue occurs on a daily basis.”
“Fatigue can come on suddenly, which means I have to cancel plans on short notice.”
“My fatigue comes on easily and suddenly and can worsen as the day progresses.”

Our community members shared with us that along with their fatigue, comes stress, anxiety and depression. The frustration can bring on anger and impatience.  It is so important for family and friends to understand where this is coming from.

“Pain makes tolerance hard.”
“I get so frustrated with myself and I get angry with others.”
“I have less patience for people and things.”
“I never used to be short on patience, but in recent years, my fuse has gotten very short.”
“At times, my anger can rise more quickly and there are fewer filters.”
“I snap at everyone but don’t mean to.”

Our community members also wanted others to know the true “invisibility” of MS.

“I may look fine on the outside, but I feel terrible on the inside.”
“MS makes you appear normal on the outside, but wreaks havoc on the inside.”
“Others can’t necessarily see our limits, as we see and feel them.”

It is also important for our family, friends and caregivers to know that MS is a constant battle.

“It’s on my mind always, even when I feel well.”
“MS is something you think about every day.”
“It’s unbelievably hard to live with-mentally, physically and emotionally.”
“This is not something I chose.”

Finally, our MS community members wanted others know that life is not easy and every day can be a different challenge!

“It’s a roller coaster…you have ups and you have downs, twists and turns, except it’s never fun.”
“No two people progress the same.”
“It can knock you off your feet at any time.”

One common theme that came up frequently from our community, and stands on it’s own as a constant reminder:

“It’s out of my control.”

 Educating the people in your life, though often challenging, can help you receive the empathy and understanding you so deserve.

Share

Spring Cleaning with MS

Spring has sprung, which means the weather is warmer, the flowers are blooming, and of course, spring cleaning and organizing is upon us!  We’re sure everyone would agree that spring cleaning can be a tiring activity.  However, for individuals with chronic conditions, especially those with accompanying fatigue like MS, this can be even more of an arduous task. Cleaning and organizing can be exhausting, and physical clutter can create mental clutter and even anxiety.

But our writers here at MultipleSclerosis.net get it. They understand the struggle and have written multiple articles around the topic of managing household chores and cleaning. So, we’ve created a compilation of the tips and strategies they shared to make it a bit easier to take on the spring cleaning frenzy.

When It’s Time to Clean                                                                     

  • Do a little at a time: To save energy, try to do a little cleaning at a time.  Pace yourself, you don’t need to do it all at once!  If you have limited mobility, try to plan ahead.  For example, if you pass through a room that needs cleaning, bring a swifter with you so you can clean as you go if possible!
  • Use a lightweight vacuum: Maneuverability can be much easier with less weight to move around. Even investing in a steam cleaner could be a solution, as they are easy to use and can cut down on labor.
  • Use long handled scrub brushes: These long-handled toilet brushes are advantageous when cleaning showers, tubs, and other household areas. They provide minimal bending and twisting and can save wear and tear on your knees.
  • Place a hanging rack over or near your dryer: This will help make it easier to hang items you may want to air dry.

Ongoing Energy Savers

  • Sit while you cook: If there’s space, keep a stool or high chair in the kitchen so you can sit down while cooking or prepping food
  • Save the steps: If you have steps in your house, leave items that need to go upstairs at the bottom of the steps, and at the end of the day make one trip. (Bring a bag if needed!)
  • Invest in a “grabber”: These can be very helpful, especially in the kitchen to reach or pick up things.  They can also be used to replace light bulbs that are hard to reach!
  • Work on clutter management: Staying organized is difficult for everyone. Taking a quick 15 minutes a day to tackle clutter can prevent long-term stress and help you from getting overwhelmed.

Sort the Clutter   

When going through clutter or miscellaneous items, try managing it with five categories:

  • Trash – Items that are damaged or can no longer be used/sold or donated.
  • Good homes – These items may go to a good home for someone else to enjoy or use.
  • For sale – These items may have some value and could be sold.
  • Storage items – These may be functional items that are not used on a regular basis.
  • Keep – These are functional items used regularly or items with sentimental value.

Ask for Help

Cleaning and decluttering is a process that takes time and maintenance, and it’s never a bad idea to seek help if needed! As always, you know your body best and what it needs, as well as when you should or shouldn’t push yourself.

Although often daunting, have a clean environment and reducing clutter may have a more positive impact on your life and journey with MS than expected!

Share

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!

Share

Loneliness, Being Alone, and MS

One of the MultipleSclerosis.net contributors, Cathy Chester, recently published an article about MS and the feelings of loneliness—and how they are different from just feeling alone.  Cathy’s words really resonated with our community members, and we received a lot of amazing feedback about how other people deal with feelings of loneliness and MS. Here’s what they had to say:

Enlisting the Support of Animal Companions

“My constant companions, my dogs, the best friends you could have. I am glad I have my dogs, they are far more loyal than any human being I’ve met in decades”

“I’m thinking of getting another dog. I had dogs all my life, I don’t have any dogs now, and I think they will be able to benefit me. Hopefully, this will add to curing my loneliness”

“I work, read, watch TV and spend time with my dog. He is almost 10 and he is the reason I fight for what I do have”

“The only thing that really helps is my dog. He’s older, so not as active. He gives me the strength to continue in this world. He makes the days better. I don’t go many places without him”

“I don’t mind being alone at home, in my own space with my cat”

So many of you talked about leaning on a furry companion when you’re feeling down.  Pets can provide many benefits when living with a chronic condition, so long as you consider the means required to take on a full-time furry friend!

Finding Hobbies that Soothe the Soul

“I keep my mind occupied with my hobbies. I love TV and movies. I love reading for hours and hours at a time”

“I can still see enough to read my kindle, I have TV, and although not a fan of daytime TV, I have lots of DVDs. It could be worse, I know. So you just keep plugging along as best as possible”

“I can relate, some days are rough, but I try to sew a little every morning, which was something I enjoyed when I was young”

“Playing games on my tablet keeps my mind occupied most of the time”

While not all of our favorite hobbies are possible all of the time, many of you reported finding new hobbies or amending old ones to fit your new lifestyle.  TV, puzzles, sewing, low-impact exercises like yoga or stretching, or even just watching funny YouTube videos can provide a distraction and pick-me-up when you need it the most.

Adjusting Your Outlook

“I truly believe that God expects me to do something that might help others cope. We did not have a support group, so I started one in my area and I am very active in our MS Walk each year”

“I do what my body allows me. I used to be very active, now I take my happiness from what I can do. I have a lot of naps now. I don’t stress over things, it’s no good for me”

“I still try to push myself to do everything I can as often as I can. I have found that a lot of times when I sit and plan out every step involved in going out, which we have to do within reason, I can become overwhelmed and staying home seems safer. However, if I take proper precautions and don’t overthink it, most of the time I end up feeling so much better that I went. It takes a lot of effort, but usually pays off”

While we can often feel like MS is an insurmountable journey, there are many of you who have shared small mental shifts that have led you to positive outcomes.  A full mindset revolution may not always be possible, or even beneficial all the time, but sometimes, slowly embracing change, even when everything seems bleak, could be a step in a new, and positive, direction.

No matter how you combat your loneliness, just remember, you are not alone.  Our community is always here for suggestions, or even just an ear to listen when you need. Please continue to share your experiences with MS-related loneliness with us, we love hearing from you!

Share