Tag Archives: MultipleSclerosis.net

Community Views: A Magical MS Bag

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Life with multiple sclerosis (MS) requires lots of preparation and thought. There is much you need to successfully navigate each day.

We wondered what items, real or imaginary, help get you through a day. We asked community members on our Facebook page to tell us: “If you could create an everyday MS bag (think Mary Poppins pulling a lamp out of her purse kind of bag) that held everything you would need to be prepared for your day, what would be in it?”

You had some “practically perfect” responses!

Plenty of meds to help with flares and pain

Managing MS means keeping prescriptions and over-the-counter drugs with you. Flares and pain can arise at any time. You feel like a portable pharmacy.

  • “Pain killers.”
  • “Advil. Lots of Advil.”
  • “Medical marijuana.”

Tools to help you regulate your temperature

Temperature regulation can be challenging with MS. Many of you frequently overheat and sweat profusely. You would pull items to help you stay cool out of your magic carpetbag. While more of you need cooling items, some of you need items to keep you warm!

  • “Cooling pads.”
  • “My new cooling vest.”
  • “A portable cold shower and ice machine.”
  • “Air conditioning year-round. 2nd-floor condo facing southwest; year-round AC.”
  • “My neck fan.”
  • “Ice packs and cold drinking water!”
  • “A heater.”

Materials that explain MS to others

Often people in your life do not understand the nature of MS. It is wearying having to explain the disease over and over. Several of you wished for the ability never to explain this disease again.

  • “A huge stack of books explaining what MS is to hand people and tell them not ever to talk to me again unless they read the entire book.”
  • “Flyers of what MS is, so I don’t have to explain it anymore.”

Plenty of feel-good items

Comfort items were high on your list of things to pull out of your bag. These items help you feel supported navigating life with MS. Flares with MS are miserable. These items soothe both mind and body.

  • “Sweatpants, sweatshirt, my fuzzy socks, pillow, my softest blanket, Architectural Digest to look at pictures, a plant, my iPad, water, eye mask for sleeping, and my dogs.”
  • “Muscle relaxers, ice packs, pain meds, my teddy bear, phone and charger, and a good book if I can see. Oh, and some snacks!”
  • “Tennis shoes, Dr. Pepper, pain pills, room-temp water, sunglasses.”
  • “My iPad and a martini.”

A bit of magic

Many of you enjoyed using Mary Poppins’ magic in filling your MS bag! It is fun to dream big about what you could pull out of a bag when there are no rules. Your creativity and imagination are impressive!

  • “Fairy dust. For sprinkles of peace, joy, happiness, calm, and healing. And a couple million dollars.”
  • “Energy.”
  • “The cool breeze of the NE ocean in summer and the dry weather of the SW in winter.”
  • “A toilet.”
  • “A never-ending paycheck, so I could stop working and tend to my health issues.”
  • “I would pull out a cure for all of us.”

We appreciate all the responses you provided to this prompt! From the serious to the silly, we enjoyed hearing what you would pull out of a magical MS bag. Thank you all for participating and being part of the community.

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Community Views: How Changing My Diet Helped Me Feel Better

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Paying close attention to what you eat is important if you live with multiple sclerosis (MS). Although there is no special “MS diet,” the foods you eat can make a big difference in your overall health. Your diet may also affect your energy level and your bowel and bladder function.1

To learn more about how people with MS are working to improve their diet, we reached out to our Facebook community. We asked members, “Have you altered your diet? What has your experience been like?”

Keep in mind, of course, that everyone is different. There is no guarantee if you follow a particular diet, you will feel a certain way. These are just the experiences of 40 of our Facebook followers. Be sure to consult your doctor before making any major nutrition changes!

Sugar is out and fiber is in

A low-fat, high-fiber diet is important when you have MS. You should try to limit the amount of sugar and processed food you eat. And getting enough fluids is also important.1,2

“I hardly eat fried foods anymore. I bake or air fry now and I limit pasta dishes and rice. I cut out sugary soda pops. Lost weight and feel lighter. I try to take probiotics also. Helps with digestion. I eat lots of homemade soups and salad. My body likes that.”

“Clean eating. No artificial or inflammatory foods/ingredients. No gluten/dairy. So far, so good.”

Staying at the right weight makes sense

People who live with MS should try to maintain a healthy weight, recommends the National Multiple Sclerosis Society. Obesity may increase the risk of other health conditions that can worsen a person’s MS.2

“I lost 10 pounds by eating less meat and more vegetables.”

“I know there’s a lot of negativity towards Keto but that’s what worked for me. I lost over 60 pounds in the course of 2 years (walking daily as well) and I had very low inflammation. I got off of it for about 2 years and am starting again because I felt so much better on it. I also did organic and grass-fed meats and eggs.”

Pass up the meat and try a nut butter

People with MS should focus on lean sources of protein and healthy fats. Experts recommend limiting intake of animal-based fats. This means cutting back on butter, whole milk, and meat, but it does not mean a ban on delicious foods.3

Try out some different kinds of fish. And include some nut-based fat sources like olive oil, avocado oil, and peanut or almond butter in your meal plan. They are a rich source of healthful omega-3s.3

“No salt, dairy, beef, processed food or processed sugars.”

“I have eliminated dairy and 90 percent gluten. Those made the biggest difference in how I felt overall. I have generally stayed away from processed foods. A family member ranches, so we get amazing meat through them, but we don’t eat a lot of meat anymore.”

Eat a rainbow of fruits and vegetables

Experts recommend that people with MS increase their intake of fruits and vegetables.2,3

“I am limiting processed foods and processed carbs and my focus is on 3 to 5 servings of fruit and vegetables each day, and 2 should preferably be dark leafy vegetables. I eat blackberries, blueberries, strawberries, pistachios, and broccoli daily.”

“Vibrant fruits and veggies – as much color as I can get on my plate!”

“I eat a lot more fresh fruit and vegetables and more food that has no preservatives, is not fried, and is low in sodium and sugar. While I’m not 100 percent with this, I DEFINITELY feel a difference with the way I eat.”

Thank you to everyone who shared information about their experiences with multiple sclerosis and making changes in the diet. We appreciate your honesty and willingness to share.

References:

1. Diet and Nutrition. National Multiple Sclerosis Society. Available at https://www.nationalmssociety.org/Living-Well-With-MS/Diet-Exercise-Healthy-Behaviors/Diet-Nutrition?Accessed 8/2/2021.
2.Wellness for People with MS: What do we know about diet, exercise and mood and what do we still need to learn? National Multiple Sclerosis Society. Available at https://nmsscdn.azureedge.net/NationalMSSociety/media/MSNationalFiles/Brochures/WellnessMSSocietyforPeoplewMS.pdf. Accessed 8/2/2021.
3. Is there a multiple sclerosis diet? The Mayo Clinic. Available at https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/expert-answers/multiple-sclerosis-diet/faq-20057953. Accessed 8/2/2021.

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How Painsomnia Affects Sleep and Where in the Body It Shows Up

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MS painsomnia

After a long and possibly pain-filled day, what anyone with MS wants is to fall asleep. But sleep is often difficult to achieve. For many people, the pain of MS either gets worse at night or fails to quiet down, keeping them awake.

This is called painsomnia. To find out more about how it shows up for folks in the community, we reached out on the MultipleSclerosis.net Facebook page and asked: “Have you ever experienced painsomnia (the inability to sleep or rest because your body is in pain)?”

More than 400 community members shared. Here is what they said about how and where painsomnia affects them.

Every night

The most common response to our question was that people deal with painsomnia every night. It is an ongoing problem that makes bedtime a dreaded event – and the stress of that can make falling asleep even more difficult.

“Every night I feel pain in my feet. I do not know if it is neuropathy. But it feels like if I move my foot, it would break off. Why does it happen when I lie down to rest? All my joint pain intensifies. I feel numbness, too. Most nights it is 2:00 or 3:00 AM before I can go to sleep.”

“Yes. Every day for the last 2 years. It is oppressive and miserable!”

“Every. Damn. Night. My legs and feet hurt the most. This last year or so, I have started waking up with 1 or both of my legs numb from my hips to my toes. My hands go numb every night too. Bedtime sucks.”

Only some nights

For others, painsomnia only happens on some nights. Some people explained that it can actually be more of a challenge to tackle this problem if you do not already have a routine or treatment in place.

“Some nights more than others!”

“Yes! Just last night. It does not happen often.”

Cannot stay asleep

Many people in the MS community shared that while they can fall asleep, this pain wakes them up in the middle of the night. After they are awake, the pain makes it so they cannot get back to sleep.

“I sleep for very little time, and I am awake by 5 am every day.”

“Yes, all the time. I have been up since 2:30 AM from pain, along with the MS hug this morning.”

“Yes, I cannot stay asleep, which just adds on to the MS fatigue.”

Mostly in the limbs

The overwhelming majority of people who responded said that they feel the pain in their limbs – the arms, legs, hands, wrists, and feet. The pain can show up as a burning feeling, numbness, or even spasms.

“Arms, hands, and spasms in my legs. Usually 2 to 3 hours after lying down.”

“Burning pain in my right hand/wrist/arm/shoulder.”

“Yes, mostly from leg cramps and bad back pains, but also it just hurts all over.”

“Mine is numbness and tingling in my arm.”

“Usually in my one heel, but recently it has started in my hands.”

“My legs and feet hurt the most. My hands go numb every night, too.”

Shows up as pain where lesions are

The second most common response was that the pain appears where lesions are. MS lesions often show up as scarring around the central nervous system, including the spinal cord. It makes sense that people with MS can feel that burning and tingling pain in the neck or back.

“I feel it in the top of my neck, where I have a large lesion.”

“Yes. Back pain where my lesion is. I cannot stand it.”

Did not know it had a name

We cannot heal what we do not recognize. Many respondents did not know that there was a name for sleep issues due to the pain of MS. Sharing our experiences helps others know they are not alone. Realizing painsomnia exists is often the first step toward reclaiming a good night’s sleep.

“Just about every night, but I did not have a clue it had an official name.”

“Yep, and now I have a name for it.”

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Running the Household while Living with MS

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Facing fatigue daily or almost daily is a lot for anyone to get through, and it’s frequently cited as the most frustrating symptom for people living with MS. It’s especially challenging when anyone with MS also has to keep a house clean, get food on the table, run errands or do the same work they did before receiving the diagnosis.

And yet, you all keep going. We asked the Facebook community at MultipleSclerosis.net which household chores are Continue reading →

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The Frustration of FWV (Fumbling Word Vomit)

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FWV - a frustrated woman trying to articulate words that are locked inside her head.

It does have a name. That maddening feeling of being stuck, unable to express what’s on your mind. In the Multiple Sclerosis community, it’s now called fumbling word vomit.

In her piece, Ashley Ringstaff details what many of you have experienced—that inability to find the right words in the moment. It’s yet another piece of MS that’s hard to live with.

We posted Ringstaff’s piece in the MultipleSclerosis.net Facebook page, and more than 100 of you commented, venting along with Ringstaff and sharing solution as well.

Here’s what you had to say. Continue reading →

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Living with the MS Itch

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Uncontrollable. Insatiable. Seemingly brought on for no reason.

The scratching that can accompany an MS diagnosis is one of the most frustrating symptoms to deal with. It’s a neuropathic itch — that is, caused by messed up nerves signals from the brain, which makes the itching sensation impossible to stop. No amount of scratching lessens its intensity.

To learn more about how you cope with this symptom, we reached out on the MultipleSclerosis.net Facebook page, asking, “Have you ever had that uncontrollable itch that feels like bugs crawling all over you?”

More than 300 of you reacted, and more than 70 of you weighed in. Here’s what you had to say.

“I have bruised myself by scratching.”

Because the itching is a signal switched on by the brain, there’s little you can do physically to change what’s happening. But the desire to act is relentless. Several of you mentioned that you can’t help but continue scratching, even when it leads to bleeding or bruises.

“OMG yes, and it’s insane! Sometimes I am positive that a spider is crawling on me and there isn’t. I have bruised myself by scratching.”

“Always, it’s horrible. It won’t stop being itchy till I scratch the hell out of it, then I end up with sores and scratch marks.”

“Yes, for me it started about six years before I was diagnosed with MS.”

For many of you, the itching came on long before you even knew you had MS. For others of you, you didn’t know that the itching was related to MS until you read the Facebook post on MultipleSclerosis.net. Until you have the MS diagnosis and the understanding that this itching is related to the diagnosis, it can seem mysterious — which is more frustrating than anything else. Too often, we can’t even begin to treat that which we can’t categorize and name.

“Yes, three years before I actually had the initial onset of my disease. It was absolutely horrible. Now I get itching on the palms of my hands and fingers. It’s really annoying more than anything.”

“Yes, but I didn’t realize it had anything to do with my MS!”

“Just as you are going to sleep is when it hits hard.”

Although the onset of symptoms can appear random, it can be triggered by stress. For many people, stress worsens after the workday, as that is when the mind no longer has tasks to focus on, and instead, can start spinning with worry. Thus, bedtime can be one of the most challenging times of day as we lie in bed with nothing but our thoughts.

“OMG, I have been having this the past couple days. Feel like my skin is crawling. More so in the evening.”

“Yes, and it’s like fire ants! Just as you are going to sleep is when it hits hard.”

“Yes, very frequently especially at night along with a feeling of electric shock on nerves on my right side.”

“This is the only symptom that seems to be better when I’m taking my Neurontin.”

Several anti-epileptic drugs, including Neurontin, aka Gabapentin, and Lacosamide, aka Vimpat, were developed to treat seizures caused by shingles, but have also been found to provide relief to the nerve-related problem of the MS itching. Several of you named these drugs, citing that they alleviate much of the itching. If this sounds like a solution that might work for you, start with your regular doctor or ask about seeing a neurologist.

“Honestly, this is the only symptom that seems to be better when I’m taking my Neurontin… The random creepy-crawling feeling and the pins-and-needles feeling, which is nice. I used to feel like something was crawling across my face and biting me.”

“Your MS specialist should be able to help you. If it’s something that is out of control, a drug such as Gabapentin can help. Some topical routes can help soothe but because it’s neurological, just know this is coming from the brain. Cool clothing and lowering your stress can help. If needed, talk to your neurologist.”

“I take Vimpat, a seizure med, to control it—because otherwise, I will scratch till I bleed and bruise.”

“My doctor gives me a prescription itch cream.”

For others, a simpler solution may work. Anti-itch creams are easier to get and might be a good choice for a first step in solving the problem. Beyond creams, there are alternative therapies available as well.

“This happens all the time. I used to take pills to stop the itching, but Medicare quit covering them. So now my doctor gives me a prescription itch cream and it helps!”

“I go for light treatment. It works!”

We want to say thank you to everyone who shared their stories and solutions on the MultipleSclerosis.net Facebook page. Check out the comic that inspired these responses here.

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What People with MS Wish Others Could See

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The invisible disease. The silent struggle. Unlike other diseases, Multiple Sclerosis can largely present only internally, mainly as pain and fatigue. This, in turn, creates an entirely new kind of pain—the pain of being alone in suffering. When others don’t know what is wrong, or can’t fully understand what it is like to live with MS day in and day out, most living with the diagnosis often forgo speaking up, and instead, learn to cope quietly.

But you don’t need to be quiet here. Continue reading →

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Do You Have Irritability with MS?

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Living with MS comes with many challenges, both physically and emotionally. These life changes and demands can often lead to irritability, which happens to be one of the most common experiences that can come along with MS. Mood swings and irritability can be brought on by the physical pain and the overall toll MS is taking on the body. The stress and emotional adjustment of living with MS, as well as the treatments and medications prescribed, can all add to this exasperated and agitated state.

We recently published an article from one of our contributors, Calie Wyatt, who compared herself to the character of the Abominable Snowman from the classic movie Rudolf (the red-nosed reindeer). The character was continuously enraged and ill-tempered to those around him, but little did the others know, he was actually suffering from a horrible tooth ache, which led him to being so irritable. It was an interesting analogy to how Calie’s MS pain and fatigue would cause her to lash out at her family and friends. We received such incredible feedback from our community members about this article that we thought we would share some of their responses with you.

Pain

Sometimes irritability and belligerence are a direct reflection of the physical impairment and pain of MS on the body.

“Sometimes I feel the crankiness stems from trying to push past the pain, and live up to the expectations of others.”
“I’m not even aware of my physical misery until I become horrid and crabby…”
“It’s so frustrating having pain all the time. I have been having problems controlling my emotions.”

Fatigue

No matter what you’re dealing with, we all can get ill-tempered and irritable when we are tired or uncomfortable. However, this experience can be made worse when dealing with a chronic condition like MS.

“I get extra crabby when I am tired, and I am tired ALL the time.”
“I used to be a morning person, now it takes so much energy to get going and stay going. I try not to be grumpy, but I can’t help it.”
“I don’t have the energy for life.”
“As far as the exhaustion and fatigue are concerned, I’ve noticed its worse on days when my pain level is high because I feel my mind and body are constantly trying to cope with it and tolerate the pain.”
“I pay close attention to how tired I allow myself to become…I have total meltdowns if I push myself too far. The MIND AND THE BODY JUST SHUT DOWN. When I say I AM TIRED this means I’m DONE… I go lay down – sometimes just a short break and sometimes for the rest of the day if that’s what my body and mind needs.”
“I can relate, I am tired and irritable and can be short and snappy with people.”

Isolation and Anxiety and Depression

Living life with a chronic condition may lead an individual to stay at home more than ever before. This, along with anxiety and depression can contribute to irritability.

“Understanding that the source of our emotions may be depression can help us show ourselves grace.”
“I think my isolation makes it even worse when I do go out, and anxiety jumps into the mix.”
“While I usually never get grumpy, I do get very distant and quiet when I have a lot of pain.”
“This condition has made me a hermit!”

Personality Change

The day-to-day struggles and stress of living with MS can easily lead to moodiness and irritability that can provoke entire personality changes.

“This condition can flat out change your personality in ways that are directly opposite of who you are. I’ll make a rude comment and later wonder: what the heck is my problem?”
“I lashed out at a stranger at the market just a few days ago. I’m not normally like that.”
“I’ve been embarrassed about my behavior but finally forgave myself when I accepted that I did the best that I could at the time.”
“I’m so emotional, I can’t keep my thoughts at bay…they spew out of me so often that I annoy myself. I’m so tired! “
“I’m not the same person, I’m nasty I think. I snap a lot.”

Irritability can strike anyone at any time, and pain, fatigue and depression can all be contributing factors. However, for those living with a chronic condition like MS, irritability can come from all of these factors and so much more. When possible, try to identify what may have triggered your irritable state. If you’re able, pay attention to those things or situations that can lead you to being tense and uneasy, so you, and your friends, family, or healthcare team can try to help resolve them. If you experience any MS-related irritability, let us know how you navigate through, or if there’s anything we’ve missed!

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Managing Sensory Overload

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Sensory Overload is a fairly common symptom of Multiple Sclerosis, and occurs when a person experiences overstimulation from the environment. For people with MS, Sensory Overload can sometimes make it difficult to socialize, travel, shop, and drive. This month, we asked our community members at MultipleSclerosis.net about their experiences with Sensory Overload, and how they manage this strange symptom. Have any of these strategies worked for you?

What is the relationship between Sensory Overload and MS?

Cognitive dysfunction is a common symptom of MS. Along with changes to memory, attention, problem solving, and judgement, Sensory Overload is a type of cognitive dysfunction.1

What causes Sensory Overload?

According to our MS community members, noise, crowds, strong smells, bright lights, and other types of sensations can trigger Sensory Overload. For some patients, Sensory Overload is related to myloconous, an involuntary muscle reaction that makes many patients highly sensitive to noise.2  People affected by anxiety, Sensory Processing Disorders, Autism Spectrum Disorders, and Post Traumatic Stress Disorder may also experience Sensory Overload.3

What happens when a person has Sensory Overload?

Sensory Overload can cause intense stress and confusion, and can make it difficult to think clearly, make decisions, or focus. Many MS community members experience Sensory Overload in crowded environments, such as shopping malls, grocery stores, or airports.

Community Feedback: Sensory Overload Triggers

“My friends and family love to go to Vegas. I HATE CASINOS! The noise is TOO much!!!”

“It even happens at home with the TV on.”

“Sunlight doesn’t bother me, but bright indoor light does.”

“I get so irritable with the daylight/brightness.”

“Sounds and activity and people just overwhelm me and fatigue me faster than anything!”

According to our MultipleSclerosis.net community, Sensory Overload can occur in many environments. Some patients experience Sensory Overload while traveling (such as a noisy airport), while others have trouble with bright lights, TV sounds, and radio noise. For many of you, Sensory Overload is triggered by talking: Noisy kids, people talking too loudly, multiple conversations in the same room, or people talking over one another can all lead to Sensory Overload. Keep reading for some ideas for managing these triggers!

Community Feedback: Avoid Overstimulation

“I avoid crowds or big social gatherings.”

“Noisy places, crowded places – I just have to leave.”

“I have pretty much become a homebody…I just can’t deal with all the auditory and visual noise.”

To prevent Sensory Overload brought on by crowds and loud conversations, some of our community members choose to avoid these situations all together. Especially during a relapse, you may feel like you need to stay home or spend some time alone- and that’s okay! If you feel better at home and want to avoid Sensory Overload triggers, you can always connect with friends and family through social media or the internet, or talk to your MS peers through our community pages.

Community Feedback: Limit Stress

“If I want to go to a party, I have to take a nap, wake up, drink coffee and take an Advil on the way out the door”

“Multiple conversations going on in the same room does the same thing to me.”

“Disneyland was bad…My brain gets so confused and it’s a battle to stay calm…It’s hard for me to travel to very loud busy places. Even airports can be undoing.”

To limit Sensory Overload, some community members still participate in social events, but leave when they start to feel over-stimulated. Some patients also try to avoid situations that they know will be too noisy, like by choosing a more quiet restaurant over a crowded one. If you have trouble with Sensory Overload when traveling, you may choose to visit less busy, more relaxing destinations, and if the airport is too stimulating, you could travel by car or train instead.

Community Feedback: Limit Noise

“I get overwhelmed even from the radio, grandkids when they’re being noisy, if someone talks too fast, too loud or too long….”

“I feel bad telling others they are too loud, but sometimes it hurts listens to them”

Many of our community members experience Sensory Overload when they are surrounded by excess talking or noise. If loud conversations make you feel overstimulated, consider meeting up with friends and family in quieter settings (such as at home, rather than in a cafe), or spending time with people 1-on-1. If you have friends or family members who are just too noisy, consider talking to them about Sensory Overload. While saying “You’re talking too loudly” might feel awkward, saying “Every noise feels 10 times louder to a person with MS, so I need us to be really quiet” might help people understand!

Works Cited:

  1. Simmons, Jonathan. “MS Symptoms.” MultipleSclerosis.net, Health Union, multiplesclerosis.net/symptoms/. Accessed 16 Dec. 2017
  2. G, Matt Allen. “Myoclonus – Why am I So Easily Startled by Sound?” MultipleSclerosis.net, Health Union, 19 Nov. 2015, multiplesclerosis.net/living-with-ms/myoclonus-why-am-i-so-easily-startled-by-sound/. Accessed 16 Dec. 2017.
  3. McGlensey, Melissa. “21 People Describe What Sensory Overload Feels Like.” The Mighty, 11 Feb. 2016, themighty.com/2016/02/people-explain-what-sensory-overload-feels-like/. Accessed 16 Dec. 2017.
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Loneliness, Being Alone, and MS

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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!

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