Mom's Story

A discussion about Mom's Story and MS…


From: WebMD, David Spero, RN

Fatigue is more than feeling tired after a long day.  It’s an ongoing feeling of exhaustion that often does not go away even after a nap.  Fatigue is one of the most common and most disabling symptoms of MS. 

I can testify to the disabling part.  I’ve had weeks when I could barely get out of bed. Others agree. One user of our Facebook page commented, “I have just slept for 3 days with only 1- to 2-hour gaps. So fatigued it’s not funny. Can’t even eat without it draining my energy.”

Causes of MS Fatigue

MS fatigue has many causes.  Inflammation from the immune system’s attack on nerves is one. Nervous system struggling to adjust to myelin damage is another.  MS-related sleep problems or muscle weakness, urinary problems, pain, anxiety, and depression can all cause fatigue.

Fatigue often varies with our environment and behavior. When I get too warm, I can’t even sit up at my desk. After eating a big meal, I just want to fall asleep. If I overdo activities, I might pay for it with hours or days of fatigue.  I can avoid all these attacks by avoiding the triggering behaviors.

How Fatigue Affects Our Lives

MS is often called an invisible illness, and fatigue is the least visible part.  Family or friends might want us to do something, and all we can say is, “I’m not up to it.” They might think we’re making excuses, or they might stop asking, even though at other times we’re good to go.

For years, I noticed that I would get tired after eating, to the point of needing a nap. Then I found out about thermogenesis, the way the body heats up after eating.  I’m one of the many MS patients whose symptoms are worse when I’m warm, so thermogenesis can knock me out. Now I eat smaller meals and don’t have that problem. Protein raises body temperature more than other foods, so I never eat much protein at one time.

Warm air temperatures also exhaust me, like many people with MS.  I stay out of the sun on warm days and carry a little fan with me if I have to go out.  I make sure to stay hydrated, because bad things happen to me if I get warm or dehydrated. I might fall and not be able to get up.

It took me years to figure out that mental fatigue can be as dangerous as physical. I notice that when I’m warm or tired, I’m prone to misjudgments and stupid mistakes. I might try to reach something on a high shelf or trip over a shoe on the floor, things I would never do when not tired.  I might think I can carry something heavy, maybe something I could carry at my best but shouldn’t try when fatigued.  I’ve learned never to make important life decisions while fatigued.

Like most people with MS, I have good days and bad days.  On a good day, there’s a strong temptation to do all the things I couldn’t do on bad days, to live a month of life in a day.  When I do that, I pay with days or weeks of fatigue.  Sometimes we can accept that trade-off for a special occasion, but in general it’s important to keep some energy in reserve.

Physical therapists say it’s crucial to keep moving our bodies. Keeping still all day can add to fatigue.  Sometimes it’s hard to move, but you should try to find some way to exercise lightly.  Stretching and strengthening exercise make it easier for me to move.

There are medications for fatigue that work for many patients. The easiest one is caffeine. A cup of coffee or tea might pick you up. Green tea works for me. I hear from patients that prescription medicines such as Provigil can be great boosters.

At Least It Doesn’t Hurt

The good thing about fatigue is that we can be comfortable with it, as long as we have a good place to sleep.  It doesn’t hurt. Fatigue can be terribly depressing, though, keeping us from doing things we really want to do or need to do. Don’t be afraid to seek help from your doctor or a therapist or to take medicines for depression or anxiety if your MS is taking you there.

Don’t forget to breathe and to relax, meditate, or pray. Tension and stress can wear us out, and being at peace is the least tiring way to live.  For almost everyone, fatigue eventually goes away. For me, as long as I keep cool, it no longer bothers me, and I’m very thankful for that.

What’s New in MS Research

The Multiple Sclerosis Association of America (MSAA) is pleased to present its latest edition of “What’s New in MS Research.” This series of online articles is published periodically and features important information on topics ranging from highlights of major international MS conferences and updates on trials with experimental disease-modifying therapies, to new findings on the development of the disease, symptom management, and quality-of-life issues.

This latest edition of “What’s New in MS Research” features trial results from recent studies as well as updates on a variety of MS-related issues. Topics include:

  • Positive results for the investigational treatment ublituximab
  • The importance of identifying anxiety and depression in early MS
  • Intriguing results with cannabis for bladder symptoms with MS
  • Assistive devices that show the greatest strides
  • And many other vital topics

Please read MSAA’s latest edition of “What’s New in MS Research.” We hope you find these updates to be both informative and encouraging, providing help and hope to the entire MS community.

For additional information on the latest advancements in MS research, please also see MSAA’s archived educational webinar What’s New in MS Research: A Look Into the Future of Multiple Sclerosis Treatment — July 2021 featuring neurologist Barry Singer, MD.

MS Slide Show

Interesting Slide-show from WebMD –

Does Having MS Mean You Identify As Disabled?

By Tamara K Sellman

In early April, I attended a virtual writers’ conference, immediately drawn to a group of workshops that prioritized the voices, ideas, and practices of writers with some sort of disability.

For instance, I attended a poetry panel discussing disfluent writers. The panelists focused on the challenges of writers with speech disabilities (dystonia, stuttering, dysarthria) caused by any number of conditions (cerebral palsy, deafness, neurological disorders).

Does having MS mean you’re disabled?

Overall, these were wonderful workshops, perhaps the best of the entire conference. But in each case, a question was posed that left me wondering: As a person with MS, do I identify as disabled? The short answer? No.

This left me feeling a little out of place in the workshops, like a voyeur instead of a student. Which is weird. I left behind a healthcare career I loved because of MS. The circadian disruption of overnight shiftwork put me on a collision course with relapse that just wasn’t worth the risk.

Yet, I don’t feel like I qualify as disabled. To me, disabled means certain limitations prevent me from performing (forgive the healthcare jargon) “activities of daily living.”

Assessing my disability

After all, I can:

walk (even if sometimes it’s a crooked path)

talk (even if my words aren’t always forthcoming or I trip over them with a strange and unexpected slur)

maintain basic hygiene (even if I might need a nap after)

feed myself (even if annoyingly powerful stretches of hiccups make it hard to eat)

cook (even if I occasionally forget the pan on the stove until it’s too late and I have to start over)

read (even if weird MS fatigue blurs my 20/20 vision or wires cross, making comprehension temporarily impossible)

do basic math (even if cognitive fog obscures my focus and I need my smartphone’s calculator for the simplest computations)

Does that make me disabled? I guess it depends upon who you ask.

What does disabled mean?

The ordinary healthy person may consider a person disabled if they’re impaired in some obvious way. To them, a person in a wheelchair is disabled, but a person with cognitive fog isn’t. (Allow me to acknowledge the very active people in wheelchairs I know who cringe at the term disabled).

However, the ADA National Network defines disabled in strokes both broad and context-specific. You’re regarded as disabled if you’re:

impaired but it doesn’t substantially limit your activities

impaired and it does substantially limit your activities only as a result of the attitudes of others toward you

not impaired, but treated like you are

Meanwhile, your neurologist may use the Expanded Disability Status Scale (EDSS) to gauge your disability status. My EDSS score is 3.0 (or mild to moderate disability). I still don’t identify as disabled.

What does disability mean?

Aside from the negative social connotations attached to it, the term disability is a practical measure, less medical and more legal. In its formal application, disability implies an objectively measurable status of ability. It’s used to identify financial needs and justify financial support for those whose impairments prevent them from earning a living or paying for healthcare services or living expenses.

By this definition, I’m definitely not disabled. While I left a job voluntarily because of MS, I pivoted to a sustainable working arrangement and I’m not the household breadwinner.

Disability as a legal status is rather complex. The ADA’s definition of disability differs from the definition needed to apply for Social Security Disability benefits in ways that only a good lawyer can parse out. (The National MS Society can help you decide if you need to hire an attorney or advocate if need be).

I wonder if this is why I don’t identify as disabled. I don’t draw disability benefits, nor do I qualify for them in either scenario.

Disabled, disability – do these words even matter?

On a more existential level, I feel like I’m not disabled even if the ADA and EDSS say I am. I still conduct my days mostly unimpeded by occasional MS-related setbacks. I understand and recognize this privilege. And the last thing I want to do is co-opt the reality, resources, or support for those more clearly impacted by MS.

Yet the unpredictability of MS is not lost on me. Odds are, half of us with relapsing-remitting MS will develop secondary progressive disease within 10 years. Ninety percent of us will transition to SPMS within 25 years. With that transition comes a progressive accumulation of “legal” and “medical” disability. I’m in year 8, post-diagnosis. Might my 3.0 EDSS score suddenly jump to 6.0? Who knows? If that happens, and I can no longer work or afford my living expenses or healthcare bills, then these words, accurate or not, will matter, indeed.

On the Horizon: The Future of MS Treatments

By Benjamin Segal, MD, as told to Kara Mayer Robinson

We’ve come a long way in treating MS — it’s been one of the biggest success stories in medicine. Over the last 20 years, there has been a revolution in drugs that change the course of the disease, particularly relapsing-remitting multiple sclerosis (RRMS).

Back when I was in training, we had no drugs that altered the prognosis of MS or prevented attacks. The only thing we had were steroids. We gave them to people during serious attacks to speed recovery. But we had nothing to lower someone’s chances of developing the disease. We also couldn’t stop future attacks, put off disability, or make it less serious.

Now there are more than 15 FDA-approved drugs that do just that. They include shots you can give yourself, pills, and intravenous infusions. But they differ in how effective they are and the side effects they have. And we don’t have a way to predict which patient will respond best to which drug.

The goal of MS specialists now is what we call “no disease activity.” This means no relapses, no new lesions, and no ongoing development of disability. For many patients, we can achieve that, especially those with RRMS.

There have also been changes in how we look at secondary progressive multiple sclerosis (SPMS). In the last several years, three drugs have been approved for both RRMS and SPMS. Before that, there were no drugs approved for SPMS, except one very potent chemotherapy that we don’t use anymore.

We now have evidence that early treatment, and particularly treatment with certain drugs, may delay the conversion of RRMS to SPMS. In some cases, patients don’t have gradual decline over the course of decades.

What’s on the Horizon

Many new therapies are being studied to advance MS treatment even more. Two important areas of study are how to promote repair in MS and how to treat progressive MS.

Remyelination and Repair

In people with MS, myelin is destroyed, which causes a lot of symptoms. Researchers are looking at different strategies to help the body form new myelin, the protective coating around nerves.

Some clinical trials target molecules that normally suppress the growth of myelin. Researchers are now looking at a protective or pro-regenerative part of the immune system that we can manipulate to protect damaged neurons and stimulate new fiber growth.

My group at the Ohio State University just published a paper about our discovery of an immune cell that rescues damaged nerve cells from dying. It also stimulates nerve fiber regrowth. It may not only stop further damage of the central nervous system, but it may also reverse damage and restore function.

Treating Secondary Progressive MS

We’ve made progress with SPMS medication, but there’s more to be done.

Data suggests three drugs recently approved for SPMS are somewhat effective in a subset of younger people who still have new inflammatory lesions. But they’re unlikely to help those who are further along with the disease. So the quest is to find treatments for those people.

A few pills being tested in trials show promise. One of them suppresses the immune cells that are normally found in the brain and spinal cord. It stops the body from activating them. In a recent phase II trial, it slowed the progress of disability in people with inactive, progressive MS.

Finding the Right Treatment for Each Person

Right now, we can’t predict which patient will respond best to which drug. But there are a lot of ongoing studies that predict which drug will be the most effective in a given individual.

Researchers are also looking for biomarkers to develop blood tests that may tell us if someone’s more likely to respond to one drug versus another.

Vitamin D, Antioxidants, and Gut Microbiome

Some studies show that very low levels of vitamin D raise your chances of developing MS. Now there are studies to see if boosting vitamin D levels with extra supplements may tamp down new attacks or new lesions for people who already have it.

There are also studies that look at the gut microbiome and if you can manage MS better by changing the bacteria in your gut.

It’s not conclusive yet, but researchers are looking at whether certain antioxidants may alter treatment or management of MS. One is called lipoic acid. A few studies suggest it may slow the loss of brain tissue in people with MS. There will likely be future studies that look at lipoic acid and other antioxidants in greater detail.

New Ways to Manage Symptoms

One of the most common and hard-to-manage symptoms of MS is fatigue. There are studies on pills and cognitive rehabilitation therapy to treat it. There’s also a lot of research into improved prosthetics and robotics to help patients with MS to function better.

Early, Aggressive Treatment

Now that we have highly potent drugs to treat MS, there’s a debate about whether it’s better to start early treatment with aggressive drugs or to start with lower-potency drugs and then step up (escalate) to more potent ones.

A recent study suggests that people treated with higher-potency drugs from the start are less likely to transition to SPMS years down the line. New studies that compare aggressive early treatment to escalation therapy may help us know more.

The Outlook

Right now, many of my patients with MS are living full lives. I’ve seen people who’ve been relapse-free for 2 decades with no new lesions. No one would know that they had MS.

This is a completely different situation from when I was a resident in training. Then, most people we saw went on to need assistance devices and had to stop working.

A cure is very difficult to predict. We’re more likely to find treatments that help relapsing-remitting disease and maybe completely stop the progress of the disease. A cure may take a little longer.

MS: Strangest Symptoms From Head to Toe

Extreme fatigue, clumsiness, weird prickly sensations, sluggish thinking, wonky vision — these are classic and common first symptoms of multiple sclerosis, or MS. But the expected stops here. Damage to the central nervous system, aka your brain and spinal cord, is what causes these symptoms. That’s a wide range of functions that affect many different people. So it can show up in some strange and varied ways. Watch this slide show (1 / 15).

Top 7 benefits of having pets in our MS life

There is more to it than just the snuggles. Having pets in our lives has a wide range of benefits. They help us cope, lift us from feelings of loneliness and depression, and get us outside for a bit of sunshine and exercise.

1. Pets keep us company.

Living with a companion animal can help ease feelings of isolation. Having a buddy by your side can make such a big difference in minimizing the feelings of loneliness. Even if the conversation is only one way…

2. Pets can help us fight depression

Taking care of pets (walking them, grooming them, petting them, playing with them) takes you out of yourself and helps you feel better. Our pets’ love is unconditional so, good day or bad, they have a lot to give us. Well, that is unless your name is Hans who, when he doesn’t get the treats he persistently begs for in the morning, may not be spreading the love quite as far.

3. Pets give us a sense of support and pleasure

Our life with MS should focus more on the good parts, not the un-fun stuff, right? Having pets makes us feel good. They’re cute and they’re sweet and they’re funny and they’re snuggly. All good stuff that makes living with MS a bit more bearable.

4. Pets get us outside when we might not otherwise

When we walk Spot, we sometimes meet others along the way, stopping for conversation, watching dogs do the funny things they do. It’s a great social outlet. Plus, there’s the added benefit of soaking some of that sun vitamin!

5. Pets calm us and relieve our anxiety

This is a big one for me as I am slightly neurotic. Hans is chill so he keeps me chill, not an easy feat. Om.

6. Pets help us minimize stress

This is huge for us, as stress is often the culprit when our symptoms flare up.

7. Pets help us improve our physical fitness

After all, exercise is important for MSers and, taking your dog for short walks or tossing their favorite toy in the backyard, helps keep us moving. This includes basic stretching. I can’t tell you how many times Hans watches us at home, with keen interest and curiosity, as we stretch or do some yoga. Eventually, he gets right on the floor with us to do a bit of stretching himself. Kitty Yoga. Hilarious!

7 Lifestyle Changes to Help Slow MS Progression

MS is a lifelong disease. Your symptoms may gradually get worse as it progresses and parts of the brain and spinal cord get damaged. But a few simple lifestyle changes can help you stay mobile and have a good quality of life for a long time.

Stick With Your Treatment

There are more than a dozen medicines that doctors recommend to prevent relapses and slow MS. These treatments can help you feel better, but only if you take them.

Treatment Timeline

The goal with MS treatment is to prevent more trouble, says Randall Trudell, MD, an expert on this neurological disease. He says there are many effective medications from pills to infusions to help prevent relapses.

It can be hard to think about taking medications for many years to come. But the sooner you get on the right medicine routine and the longer you stick with it, the better you’ll control your disease.

Some people stop taking their medicine because they don’t think that it helps them or they have side effects. Talk to your doctor if that happens. They may be able to adjust your dose, switch you to a new drug, or help you manage any side effects you do have.

If you’ve stopped treatment because you can’t afford your medicine, check with the MS Society or the company that makes the drug. They may be able to help you cover the cost.

It’s also important to manage any other health problems you have. Heart disease, diabetes, lung disease, and depression can all make your MS progress more quickly. See your primary care doctor or a specialist to get diagnosed and treated.


Years ago, doctors warned people with MS to avoid exercise because they thought it could make the disease worse. Today they know that the opposite is true.

Exercise strengthens the muscles that help you walk. It also eases fatigue, boosts mood, and improves quality of life in people with MS. There’s even some evidence that strength training might help slow MS damage in the brain.

An exercise program for MS includes 150 minutes of “aerobics” each week. These are activities that get your heart pumping, like walking or swimming. Work out at your own pace and level. Also stretch for at least 10 minutes each day to release tight muscles.

Use weights or resistance bands twice a week to strengthen your muscles. A physical therapist can show you how to do each exercise correctly to prevent injury.

Eat a Healthy Diet

A balanced diet is important for your health in general, but especially when you have a long-term disease like MS. Research shows that people with MS who eat a lot of fruits, vegetables, and whole grains have less disability and fewer symptoms like depression and fatigue than those who eat less of these healthy foods.

Limit processed foods and animal fats like red meat and butter. Get your fats from healthier sources such as fish, nuts, avocados, and olive oil.

Vitamin D

People who have higher levels of vitamin D in their blood are at lower risk of getting MS. Research is underway to see if there’s a link between vitamin D levels and curbing your relapses. 

You can get your daily vitamin D from foods like fatty fish and fortified milk. Your body also makes its own stores of this vitamin when your skin is in sunlight. A blood test can show whether you’re low in vitamin D. If so, a supplement will help boost your levels to where they need to be.

Get Restful Sleep

A lack of sleep may not make your MS progress, but it can certainly make you feel worse. It’s hard to fall asleep and stay asleep all night when you’re in pain, you feel depressed, or you have to get up to use the bathroom many times. Steroids and other medicines you take to control MS can also keep you awake.

Ask your doctor whether any of your MS medicines could be affecting your sleep. Treat pain and other symptoms that are getting in the way of a restful night’s sleep. Try to relax and let go of stress before bed with a warm bath, calming music, or a good book.

Don’t Smoke

Yet another reason not to smoke is that it can make your MS get worse, more quickly. Smoking also raises your chances of getting heart and lung diseases, which speed up MS progression.

It’s not easy to quit, especially if you’ve smoked for many years. But when you do kick the habit, you’ll start to see health benefits right away. Make a plan to quit, get support from your doctor and friends, and have medicines and other tools on hand to lessen the urge to smoke when it hits.

Get Vaccinated

Infections like the flu can make your MS relapse and your symptoms flare up. Get your flu vaccine each fall to avoid getting sick. If you take a disease-modifying drug for MS, don’t get the FluMist nasal spray because it’s a live vaccine. Since your immune system — the body’s defense against germs — is weaker from MS, the flu shot, which contains a dead form of the virus, is safer for you.

Ask your doctor whether you’re up to date on all the other vaccines you need to stay healthy.

From: WebMD

New advice for people with MS

Advice for people with MS

Current evidence shows that simply having MS does not make you more likely to develop COVID-19 or to become severely ill or die from the infection than the general population. However, the following groups of people with MS are more susceptible to having a severe case of COVID-19:

  • People with progressive MS
  • People with MS over the age of 60
  • Men with MS
  • Black people with MS and possibly South Asian people with MS
  • People with higher levels of disability (for example, an EDSS score of 6 or above, which relates to needing to use a walking stick)
  • People with MS and obesity, diabetes or diseases of the heart or lungs
  • People taking certain disease modifying therapies for their MS (see below)

All people with MS are advised to follow World Health Organization guidelines for reducing the risk of infection with COVID-19. People in the higher risk groups should pay particular attention to these measures. We recommend to:

  • Practice social distancing by keeping at least 1.5 metres* distance between yourself and others, to reduce your risk of infection when they cough, sneeze or speak. This is particularly important when indoors but applies to being outdoors as well.
  • Make wearing a mask a normal part of being around other people and ensure that you are using it correctly by following these instructions.
  • Avoid going to crowded places, especially indoors. Where this is not possible, ensure to wear a mask and practise social distancing.
  • Wash your hands frequently with soap and water or an alcohol-based hand rub (70% alcohol content is considered most effective).
  • Avoid touching your eyes, nose and mouth unless your hands are clean.
  • When coughing and sneezing, cover your mouth and nose with a flexed elbow or tissue.
  • Clean and disinfect surfaces frequently especially those which are regularly touched.
  • Talk to your healthcare provider about optimal care plans, through video consultations or in-person visits where needed. Visits to health clinics and hospitals should not be avoided if they are recommended based on your current health needs.
  • Stay active and try to take part in activities that will enhance your mental health and well-being. Physical exercise and social activities that can take place outside and with social distancing are encouraged.
  • Get the seasonal flu vaccination where it is available and encourage your family to do the same.

Caregivers and family members who live with, or regularly visit, a person with MS in one of the higher risk groups should also follow these recommendations to reduce the chance of bringing COVID-19 infection into the home.

* (National and international guidelines on physical distancing vary between at least 1 metre and 2 metres. People should consider their national guidance and be aware that these are minimum distances, longer being better.)

Advice regarding disease modifying therapies for MS

Many disease modifying therapies (DMTs) for MS work by suppressing or modifying the immune system. Some MS medications might increase the likelihood of developing complications from COVID-19 but this risk needs to be balanced with the risks of stopping or delaying treatment.

We recommend that people with MS currently taking DMTs continue with their treatment, unless advised to stop by their treating clinician.

People who develop symptoms of COVID-19 or test positive for the infection should discuss their MS therapies with their MS care provider or another healthcare professional who is familiar with their care.

Before starting on any new DMT or changing an existing DMT, people with MS should discuss with their healthcare professional which therapy is the best choice for their individual circumstances. This decision should consider the following information:

  • MS disease course and activity
  • The risks and benefits normally associated with different treatment options
  • Additional risks related to COVID-19, such as:
    • The presence of other factors for a more severe case of COVID-19, such as older age, obesity, pre-existing lung or cardiovascular disease, progressive MS, higher risk race/ethnicity etc, as listed above
    • The current and anticipated future COVID-19 risk in the local area
    • Risk of exposure to COVID-19 due to lifestyle, for example whether they are able to self-isolate or are working in a high-risk environment
    • Emerging evidence on the potential interaction between some treatments and COVID-19 severity

Evidence on the impact of DMTs on COVID-19 severity

Interferons and glatiramer acetate are unlikely to impact negatively on COVID-19 severity. There is some preliminary evidence that interferons may reduce the need for hospitalisation due to COVID-19.

The evidence available suggests that people with MS taking dimethyl fumarate, teriflunomide, fingolimod, siponimod and natalizumab do not have an increased risk of more severe COVID-19 symptoms.

There is some evidence that therapies that target CD20 – ocrelizumab and rituximab – may be linked to an increased chance of having a more severe form of COVID-19. However, these therapies should still be considered as an option for treating MS during the pandemic. People with MS who are taking them (or ofatumumab and ublituximab that work in the same way) should be particularly vigilant regarding the advice above to reduce their risk of infection.

More data on the use of alemtuzumab and cladribine during the COVID-19 pandemic are required to make any assessment of their safety. People with MS who are currently taking these therapies and are living in a community with a COVID-19 outbreak should discuss their current lymphocyte counts with their healthcare professional. (Lymphocytes are a type of white blood cell that helps protect the body from infection). If their counts are considered to be low they should isolate as much as possible to reduce their risk. Recommendations on delaying second or further doses of alemtuzumab, cladribine, ocrelizumab and rituximab due to the COVID-19 outbreak differ between countries. People who take these medications and are due for the next dose should consult their healthcare professional about the risks and benefits of postponing treatment. People are strongly encouraged not to stop treatment without the advice of their clinician

Am I Lazy or Is MS Actually to Blame?

By Matt Allen G · October 15, 2020

Most people living with multiple sclerosis have probably experienced the feeling that others think they are lazy. Or maybe they have flat out been accused! At the very least, I’m sure everyone has encountered at least one other person with MS who has shared this experience. It can be painful to feel like you’re being looked at as a human sloth due to your inability to “keep up” because if you have MS, you can’t help it. MS commonly causes people to not be able to do the things they once could. But lately, I’ve been catching myself wondering if I really am lazy.

Are people with MS lazy?

Why do people think we are lazy? Well, in my opinion, this is an easy question to answer. People tend to believe what they see. I think it’s human nature. With that in mind, what do we know about symptoms such as fatigue, spasticity, pain, or vertigo? They’re invisible. You can’t see them, which means the people around you only get to see you “lying around doing nothing.” They see the ‘what’ but not the ‘why.’

Making assumptions based on appearances

Since people usually accept the easiest explanation as the most likely explanation, you can see why they would jump to the conclusion that you’re just being lazy. I find this really frustrating, but I do understand it. I’m sure I’ve made similar assumptions based on appearances even when I know that you can’t judge a book by its cover. That’s just how our brains work. It’s up to us to catch ourselves in moments like this and seek the entire picture before reaching a conclusion.

Explaining that I’m not lazy

This all leads to one of the most challenging and irritating parts of everyday life with MS: trying to explain to people that there is something there, even though they can’t see it. It’s unfortunate, but this is a burden that falls on us – the ones living with this illness. It can be really hard to explain something that we ourselves don’t entirely understand. But I guess it’s just another responsibility that came with MS. Having to teach others around us about a disease we are often still learning about ourselves. Sometimes we succeed, but a lot of the time we don’t. That is one more thing in life with MS that we don’t have much control over.

But what if it’s not MS?

Despite everything I know, and despite the fact that I would tell anyone else saying what I’m about to say that they are wrong, I have caught myself wondering…am I? Am I lazy, or is it really just my MS? The thought comes from a small part of my brain, but it actually raises many questions for me. Questions like, “Why do I feel lazy?” “What am I doing to make myself feel lazy?” and “What can I do to stop feeling this guilt?”

Why couldn’t I get more done?

I’ve literally been having a hard time falling asleep at night because this question has really been weighing on me lately. I lie there thinking about everything I accomplished for the day and wondering why I couldn’t do more. Why I didn’t exercise. Contemplating how I might be able to get more done tomorrow. Listening to my inner-monologue debate, whether it’s a matter of how or if I can achieve more. Because maybe it really is just me? Perhaps I really am just lazy?

What I know and feel don’t always match

This is just one example of how MS can cause conflicting thoughts and emotions. I know I’m not lazy. I hate it when I’m not busy. I hate feeling like I wasted another day. I could never live a life of idle luxury without losing my mind. I know about and have felt the benefits of exercise, especially when I compare it to how I feel when I don’t.

At the same time, I often feel like I can’t keep up with my responsibilities in life. Sometimes I feel like the world is asking way too much of me, sometimes. So, at times I feel like I am lazy and subconsciously using my MS as an excuse. This all leads to the heavy feeling of guilt that’s been keeping me up at night. What I know and what I feel about my MS don’t always match.

Trying to make sense of how I feel

Turning back to my bedtime reflecting on the day and trying to make sense of the mess of thoughts and feelings I’ve been living with, the answer seems obvious. I’m currently not doing as much as I did even just six months ago. I’m not going on my morning walks, I’m not leaving the house to run errands, and I’m not exercising the way I should be. It would be easy to blame this on the pandemic, but that’s an excuse that can quickly be debunked with ease. The only blame I can actually attribute to that excuse is how it “shook up” my routine.

Getting back over the hump

Just because things are different and maybe even a little more complicated doesn’t mean they are impossible. I know I can still do most of those things – I’m specifically referring to exercise – even if they aren’t as easy or comfortable. But because I’m not? I’ve found myself back at the bottom of the hill you have to overcome to feel the positive benefits of exercise. I think if I can get back over that “hump,” I’ll start feeling less lazy and more productive because getting the amount of work and healthcare chores I’ve gotten done lately doesn’t seem to be helping.

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