The Financial Burden of MS

For several of our community members, financial stress is one of the greatest challenges of living with MS. In addition to budgeting for out-of-pocket medical costs and everyday living expenses, it can be time-consuming (and sometimes stressful) to manage medical bills, insurance claims, and paperwork. Recently, we shared

about living on a fixed income, and our MS community members responded by sharing their own experiences with the financial burden of MS.

Managing Unexpected or Underappreciated Costs

“The COLA index does not reflect the expenses that the elderly or disabled must cope with.”

“Living on a fixed income, there is no way I can afford the the meds that are recommended.”

“MRIs copay with my insurance is $700. Takes me months to pay it off!”

“I need an MRI and hope this time I can afford it. Couldn’t get one last year because of the cost”

“The bills (even with insurance and a fulltime job) are tough to keep up with…. never ending”

As described by many of our community members, living with MS is costly, even for those with various forms of private insurance and/or public benefits. In a 2017 ‘Cost of Care’ survey, 77% of MS community members said that paying for care and treatment caused financial strain for their families, and over 50% of patients skipped or ‘stretched’ their medication to avoid the cost of refilling their prescriptions.1 For many community members, the out-of-pocket costs of medications, tests, and procedures far outweigh your family’s income, especially when Cost-Of-Living Adjustments (COLAs) do not match increases in premiums. While your private insurance and/or public benefits may cover some costs, according to many MS patients, these unexpected or unappreciated costs can be challenging for you and your family to manage.

While the financial strains of MS are all too real, many of our community members have offered their own cost-saving tips for dealing with MS. While some community members recommend asking your healthcare provider about less expensive or generic medications, other suggest calling your provider’s office to see if they have any drug samples for your medications. Other patients recommend researching financial assistance programs or looking for drug coupons (often available on pharmaceutical company websites), or even ‘shopping around’ for the lowest costs for prescription drugs, tests, and procedures.1</sup

Overcoming Stigma

“I overheard a coworker saying openly, ‘All sick people are costing healthy people too much’.”

“It’s an absolute disgrace to work all your life and pay into Social Security and then have ignorant fools saying we don’t deserve it like we’re getting billions of dollars a month…One diagnosis can change your whole world, but they don’t think it can happen to them.”

“We are sick and cannot work!”

For many patients, one of the most difficult financial burdens of MS comes in the form of shame, stigma, or judgement from other people. As many of our community members know, public benefits, such asSupplemental Security Income (SSI) and Social Security Disability Insurance (SSDI), often fall short of the considerable costs of treating and managing a chronic condition. However, possibly due to the politics of government assistance programs, as well as a general lack of knowledge about MS, many of our community members have experienced ignorant remarks about the costs of public assistance programs, and even comments about what sick and/or disabled people do and do not “deserve”.

While it can be frustrating, angering, and downright hurtful to hear these stigmatizing remarks, only you and your family truly understand your financial situation, the challenges of MS, and what it’s like to rely on public benefits. While it’s unfair for anyone to discredit your symptoms and experiences, you may prefer to block-out these comments in favor of listening to the people who actually understand what you’re going through, such as family, friends, and fellow MS community members.

“Retirement”

“I was diagnosed in 2001 and worked up until 2013… I worked hard all of my life and loved every job that I had”

“Every day I wish I had the capacity to work”

“MS took my career and the ability to support myself… I worked hard to get an education and my career”
“I had to take early retirement due to my MS”

“Within one year of diagnosis, I was forced to quit my job. I couldn’t afford my medication because my insurance copay for it was too high and I have had severe reactions to other medications.”

For many people with MS, “retirement” has a different meaning than it does for the general population. As described by some of our community members, your MS symptoms forced you to work less or even stop working earlier than you had wanted or planned, leading to frustration, as well as financial strain. Along with the loss of income to cover your out-of-pocket medical expenses, many patients share that they miss being able to go to work and accomplish something every day, leading to emotional challenges, as well as financial ones.

If you are no longer able to work due to MS, it is important to apply for SSDI as soon as possible, given the process can take some time (see below). If you’re experiencing feelings of frustration or isolation> due to no longer working, you can also reach out to the MS community for additional help and support.

Getting Disability Benefits

“I’ve been waiting 3 years for my disability… it’s been 2 years waiting for my court date”

“SS ROUTINELY denies ALL 1st time requests – you have to hire a lawyer.”

“A confirmed diagnosis of MS should be enough [to get SSDI]”

“It took me two years to get my SSI disability benefit… I had a lawyer, but it still takes a super long time…. I was in front of a judge just to argue to get my own money”

For some of our community members, one of the biggest financial challenges of MS has been applying for Social Security disability benefits. Typically, applying and being approved for SSDI or SSI requires gathering and organizing all of your medical records, as well as coordinating with your healthcare provider so that he/she can sign-off on your request. After applying for SSDI or SSI, several community members initially received a denial, requiring them to start an appeals process. If you need to appeal a SSDI/SSI denial, many of our community members recommend hiring a lawyer or advocate to guide you on the appeals process, which usually includes a court hearing to plead your case. While your lawyer or advocate will charge a fee, many do not send a bill until after your appeal is granted. According to some of our community members, you can also contact your senator or congressperson to (hopefully!) speed up the appeals process.
For people living with MS, financial burdens can come in all shapes and sizes. While some of you are dealing with unexpected or underappreciated costs, others are facing the need to stop working, or the ignorance of others who stigmatize public benefits. If you’re experiencing financial difficulties related to MS, we encourage you to contact the MS community for help and support, and share your story today.

Works Cited

  1. Editorial Team. “Show Me (more than) the Money! Results from the Cost of Care Survey.” MultipleSclerosis.net, Health Union, 30 Jan. 2017, multiplesclerosis.net/infographic/cost-of-care-survey-results/. Accessed 29 Mar. 2018.
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Progressive Talk

By Doug Ankerman

The word “progressive” brings to mind images of broad, dynamic thinking.

Progressive is fresh.  Progressive is modern.  Progressive is revolutionary in every aspect.

Progressive was NOT me in any way, shape or form.

Just look at me as a kid.  Absolutely nothing progressive.  Big ears.  Big head.  Eddie Munster hair.  Shy.  Backward.  Sucked my thumb till I was eight-years-old.

My progressive aversion continued well into adulthood till finally being tagged “Secondary-Progressive” years into my MS journey.

It was the first-time I had been “progressive” at anything.

Though my new-found classification never bothered me because I figured I had had Progressive MS since day one.  I never experienced the ups and downs of Relapsing-Remitting.  It’s always been a gradual downhill slide.  Like the most boring roller coaster ride ever.  Like a driveway tilted just enough to let the rain run to the curb.

Having the label “Progressive MS” was no biggie to me because it is just that – a label.  Someone’s opinion.  A moniker.  A mark.  My hope is you feel the same way.

Whether your MS is RR (Relapsing-Remitting), SP (Secondary-Progressive), PP (Primary-Progressive) or CP (Chronic Progressive), it doesn’t matter.  MS doesn’t define you.  MS doesn’t limit you.  So don’t let it change you.

After twenty-two years I have come to accept my progressive MS…it’s my not-so progressive sense of fashion that continues to embarrass my wife in public…

But I LOVE my cargo shorts, honey!

All this progressive talk reminds me today, March 28th, is the first-ever Progressive MS Day, a day raising awareness for those living with the most debilitating forms of the disease.  You can help spread the word in your social media by using the official hashtag: #ProgressiveMSDay.

Join me as I give #ProgressiveMSDay a well-deserved sitting ovation.

Keep moving my friend.

*Doug writes about MS and other stuff on his humor blog at myoddsock.com, Facebook.com/myoddsock & on Twitter @myoddsock.

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Healthy Living with Primary-Progressive MS

It’s hard to believe we are headed into the last week of MS Awareness Month.  This week we will be focusing on Healthy Living with Primary-Progressive MS.  I know sometimes you may feel overwhelmed and discouraged by the lack of medical advances for PPMS patients.  Please know that according to MSAA’s website, MS research and medications have been making leaps and bounds over the past few years.  While scientists may need several years to accomplish such large goals, today’s approved drugs for MS are effective in slowing down disease activity for individuals with relapsing forms of the disease. This has been a dramatic step toward a cure.  Plus, with studies now being directed to PPMS as well, researchers believe it will only be a matter of time before individuals with PPMS may also have access to several effective disease-modifying treatments.  One medication — Ocrevus™ (ocrelizumab) — has been approved by the U.S. Food and Drug Administration (FDA) for the treatment of PPMS as well as for relapsing forms of MS.  Ocrevus was made available to MS patients starting in 2017.  MSAA’s website has several articles about this new medication and we recommend you talking to your doctor to see if this medication could work for you.

Outside of medical advances, it’s also a good idea to develop healthy habits to combat MS.  Taking care of your overall health can improve your quality of life.

Here are some basic tips for a happier and healthier lifestyle:

  • Choose a diet rich in nutrients and vitamins.
  • Get regular exercise to help strengthen muscles.
  • Practice gentle exercise programs like tai chi and yoga to help with balance & flexibility.
  • Join a support group
  • Talk to family and friends about what you may be going through
  • Stay positive

Additionally, some people find that massage and mediation help to relieve stress and anxiety.  Assistive devices that can help you maintain your independence and freedom are important too.

Also, it is important to stay current on new developments in the MS community.  It is recommended that you educate yourself and join organizations that can provide you with information about PPMS and MS medical advances. One such organization is the Progressive MS Alliance, http://www.progressivemsalliance.org/

Finally, please join MSAA and Steven Bromley, MD for a live “Ask Me Anything” event exploring Primary-Progressive MS on Tuesday, March 27, 2018 from 6:00 – 7:00 pm Eastern. This online event will be hosted on MSAA’s Facebook page so please follow @MSassociation on Facebook and log in for the AMA on March 27, 2018 at 6:00 pm Eastern.

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Brain Preservation and Cognition Ask Me Anything – A Recap

This past Monday night, MSAA held its second Ask Me Anything session of MS Awareness Month 2018!  Focusing on the topic of Brain Preservation and Cognition, MS Experts Rohit Bakshi, MD, FAAN and Jack Burks, MD spent one hour answering more than 20 questions from our Facebook followers.

Some of the most popular questions from the AMA with Dr. Bakshi and Dr. Burks include:

  • Can cognitive loss be remedied or regained?
  • Does the loss of cognition have anything to do with the loss of social etiquette?
  • Is it possible after a diagnosis of MS to have no further physical symptoms or relapse of MS for a period of 5 years, but to suffer significant cognitive losses during that 5 year period?

Find the answers to these questions and many more on MSAA’s Facebook page.

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Cognitive Issues and MS

It has been said across the internet that “we only use 10% of our brain.” If you’ve ever walked into a room only to forget why you were there, you might agree. Generally speaking, most scientists now seem to agree that we use every part of our brain, but we may only use 10% of total brain function at one time. Brain function, cognition, and the way we process information is still one of the biggest mysteries of the human body that scientists are actively trying to unravel and understand.

One of those mysteries that scientists and researchers are trying to better understand, is how brain function and cognition are affected by chronic diseases like multiple sclerosis. Approximately half of all individuals with MS experience some kind of cognitive issues as a result of their disease. Most often, these cognitive issues affect:

  • Memory
  • Decision-making
  • Attention span
  • Speed-of-information processing

It can be difficult to measure the impact of cognitive issues, as there is no way to establish a baseline for everyone. Researchers are still looking into the best ways to evaluate cognitive deficits for individuals with MS, since MS can affect each person in different ways. Depending on where lesions are in a person’s brain, can affect the type and severity of the cognitive issues they are experiencing.

While there are not currently any medications or disease-modifying therapies that target cognitive function, there are strategies available for people experiencing cognitive issues. From brain games, to Cognitive Behavioral Therapy, to extensive note-taking, each strategy is designed for specific brain functions affected by MS.

To learn more about these options and for more information about cognitive issues, take a look at our cover story from the Winter/Spring 2015 edition of The Motivator, Cognitive Issues with MS: Research, Strategies, and Support.

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The Brain, The Brain… The Center of The Chain

I think it’s over here… or upstairs… or in the trunk… wait, did I donate that??

Lapses in memory or just general forgetfulness can happen to anyone and doesn’t have to be directly related to any one issue or associated with any diagnosis in particular. In the world of MS though, Cognition Issues, or what is sometimes referred to as Cog Fog can be a significant concern. Cognition and overall Brain Health is a complicated beast especially within the MS community. Here are some general info and tips about helping to improve cognition and overall brain function and how to build in a defense against the Cog Fog.

The Brain, The Brain…. The Center of the Chain (yes, that’s a Babysitters Club reference)

  • While many factors may impact Cognition some big ones to keep in mind are Nutrition, Sleep and Stress
  • Nurtirion
    • A healthy diet (while there is not an MS specific diet, read balanced diet here) can help support brain function and health. Giving the body important nutrients it needs to use in cell building and repair
    • Vitamin E, Omega-3 Fatty Acids and other anti-inflammatory foods have been found to impact brain function in a positive aspect
  • Sleep
    • Sleep can be hard to come by but getting proper rest may trigger your glymphatic system which essentially helps flush your central nervous system (in part your brain) of buildup and toxins
    • Sleep allows your body to heal and repair cells that can help you get a fresh start on the next day
  • Stress
    • Stress is a big one as it can trigger an increase in the activity of your sympathetic nervous system and cause inflammation which can lead to issues associated with not only your cognitive system but also your immune system
    • Decreasing stress levels (easier said than done I know) can aid your body in being in a good spot defensively for illness as well as loss of attention and focus

Now none of that may be new news to you, but it’s good to be reminded that Nutrition, Sleep and Stress all play a part in our overall health and especially as it relates to brain health. So, what can you do to combat or alleviate some of the problems brought on by Cog Fog. We’ve heard some great tips from clients that they use and wanted to share

  • Notes, notes and more notes: when you think of or hear important information write it down on a post-it and put them up in a spot in your home that you pass by very often such as a hallway, bathroom or near the front door
  • Calendars are your friend: A large wall calendar can be purchased or if you want to be creative, drawn/painted/sketched onto a wall and similar to the notes put appointments, important dates and other information into it so you have it on hand
  • You are getting very sleepy: There are a lot of theories on how much sleep you should get, generally speaking we hear that 8 hours is optimal. But in addition to this try working on a sleep cycle. Sleep cycles last approximately 90 mins and there are 5 stages that you go thru during that time. It takes on average someone 15 mins to fall asleep. So try and schedule your sleep to include not only the 90mins in each cycle but also the 15mins at the start (its an average, I know it may not work for everyone in exactly that amount of time) and set alarms to wake up at what would be the end of a sleep cycle. You’ll definitely feel the difference
  • Meal planning: Seems like the whole world is on a meal plan or diet kick these days. But meal planning can be helpful when you are not only trying to have healthy meals but also when you are attempting to be intentional about implementing things like Vitamin E and Omega 3 fatty acids. Mark out a plan for your weekly meals (yes you can deviate to occasionally allow for that cheeseburger or pizza) and be intentional about incorporating healthy aspects into your diet

There are lots of other great tips to include, these are just some that we wanted to share and hope are helpful to you. Definitely share with us some of your tips and takes on helping with Brain Health. We’d love to hear them!

To continue the conversation about MS relapses during MS Awareness Month, MSAA will be hosting a live Ask Me Anything” event with Rohit Bakshi, MD, today, March 19, 2018 from 6:00 – 7:00 pm Eastern on MSAA’s Facebook page. And throughout the week, MSAA will be hosting free in-person events across the country.  Find an education event near you by visiting our Calendar of Events page.

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Relapse Management Ask Me Anything – A Recap

On Monday night, MSAA held its first Ask Me Anything session of MS Awareness Month 2018!  Focusing on the topic of Relapse Management, MS Expert Annette Okai, MD spent one hour answering more than 25 questions from our My MSAA Community members.

Some of the most popular questions from the AMA with Dr. Okai include:

  • “How do you differentiate relapse from progression or what I call symptoms creep?”
  • “Is there a disadvantage to waiting out the symptoms, and not initiating steroids?”
  • “How long does a relapse typically last?”

Find Dr. Okai’s answers to these questions and many more on the community at: healthunlocked.com/mymsaa

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Relapse Management

By Stacie Prada

Managing MS relapses can mean different things to different people, and success varies immensely depending on how long you’ve had multiple sclerosis, the symptoms you experience, your level of physical ability, your disease course, and your expectations. When I think of managing relapses, I think of treating, avoiding and learning from them in order to slow disease progression and reduce the justifiable fear that comes each time one occurs.

  • We can treat relapses to try to shorten the duration.
  • We can try to avoid relapses with lifestyle and medication. This is an idealistic goal and may be possible, but it places a lot of blame or praise on the person with MS. It’s a pass-fail test that doesn’t necessarily correlate with how well a person manages their health.
  • We can learn from relapses each time we have one to better understand how our body works.
  • We can work to manage the fear that comes with relapses and disease progression. This part holds a lot of mystery and is sometimes the most difficult part.

When I was first diagnosed, I had no idea at any given moment if I was having a relapse or not. My scans made it clear I’d likely had MS for over a decade before diagnosis, and I’d had no idea I even had a health issue.  My symptoms were just my life, and I had no comparison.  It was scary and felt unpredictable.  I didn’t know if there was anything I could to do reduce them, if I was doing things that made it worse, or if at any moment I was in the midst of a relapse.

Managing relapses at that time meant figuring out when I was having one and trying to stop it once it started.  It took learning about MS symptoms and paying attention to how I felt.  I compared how I felt to my MRI scans and neurologist’s assessment in order to know whether or not I was having an MS exacerbation.  Steroid treatment was done to try to stop relapses. Because my biggest symptom was fatigue and I had no way to objectively measure it, I lived in a fairly constant state of fear and self-doubt.  What got me through was a belief that I would get through this phase and learn what I needed to know to live with MS. I didn’t know how, but I trusted it would happen eventually.

At six years past diagnosis, I experienced an MS milestone. I achieved a point of confidence where I felt like I could finally tell if I was having an exacerbation or not.  I knew how terrible I felt when I was having a relapse, and I knew how well I could feel when I wasn’t.  I’d learned my body enough to know which symptoms were normal for me.  I could distinguish between when the intensity and duration was likely due to existing damage from previous relapses and when it was likely new active MS activity.

I attribute this MS milestone to constant monitoring and self-assessment.  After a relapse, I would consider what helped and what was hard about it.   I’d speculate on what would have made it easier and how I can prepare for the next relapse. I’d think about how it felt, and I’d try to match up that feeling to my test results.  When I felt poorly but wasn’t having a relapse, I’d use that information to learn what is normal for me.  Knowing that helped me increase confidence and lessen my fears.

There’s so much to learn about MS, relapses and how your unique body behaves that has no prepared reference manual or shortcut around education and effort.  It’s a moving target since our bodies are aging and old damage can cause new symptoms. There is no one proven or best way to manage health to avoid relapses.  Monitoring your health, learning all you can, and trying things to see what works helps build self-confidence.  Understanding how MS affects a body in general and yours specifically helps reduce the fear of the unknown. Reducing fear can make every aspect of living with MS more bearable.

People with MS do not have complete control over whether or not they have a relapse.  If someday there is a determined cause, cure and 100% effective management regimen, then that might be possible.  Until then, the only ways I think relapses can be managed are to tackle them when they happen, to reflect on them after they happen to try to find any patterns or contributors that you might be able to control, incorporate what helps, avoid what doesn’t, and to try to make the fear manageable when they do happen.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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The Confusing World of MS Relapses

MS relapses continue to be one of the most notorious conundrums within the MS space and community today, which is one reason why the MSAA has made MS Relapse Management one of the MS Awareness Month activities this March. Many individuals living with MS question their symptoms and if they relate to relapses or not on a daily basis, no matter how long they’ve been diagnosed, because this issue remains a head-scratcher to those affected. This occurs because MS relapses can be difficult to diagnose, they’re unique to each person (like many other factors with MS), and they can sometimes be pseudoexacerbations and different from a “true” relapse. Several issues can influence whether or not a true relapse is occurring, these include other illnesses or infection, heat, stress, fever, and exercise. So how do you determine what is a relapse vs. a pseudoexacerbation vs. something else? This is a question that concerns many from day to day.

For a relapse to be considered there has to be certain signs and evidence pointing to it without other factors involved like those mentioned above. Symptoms may present as a worsening or recurrence of existing symptoms and/or new symptoms and need to be present for at least 24-48 hours. This is hard for individuals to distinguish sometimes, especially if it’s a symptom they’ve had before but maybe not recently, if they’re not sure that it’s an actual symptom issue, or if it’s a symptom related to MS at all. Another question that comes up often is how long do relapse symptoms last? The length of time can vary from days to months, again making it hard to know the exact ins and outs of relapses and all they entail. These are the type of great, valid questions to ask the doctor when and if the opportunity presents itself because it’s something many face and are unsure about.

Talking to others living with MS can also help to validate some of these questions and concerns too, to gain feedback and perspective from those dealing with the same types of issues. My MSAA Community, MSAA’s online peer support forum where those affected by MS connect with their peers, is one platform that can be used for this outreach. Additional information about MS relapse management can also be found through the MSAA’s online MS Relapse Resource Center and MS Relapse Toolkit publication.

To continue the conversation about MS relapses during MS Awareness Month, MSAA will be hosting a live Ask Me Anything” event with Annette Okai, MD, today, March 12, 2018 from 6:00 – 7:00 pm Eastern on My MSAA Community. And on Tuesday, March 13, 2018 from 8:00 – 9:00 pm Eastern the MSAA will be hosting a free Live Webinar “Helpful Tools for MS Relapse Management”  featuring Elizabeth Crabtree-Hartman, MD. Be sure to join in!

 

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MS Awareness

By Lauren Kovacs

Guess what? Awareness goes both ways.

Yet another thing that MS folks deal with is awareness. You have to be aware of your own limits and make others aware, too. Who doesn’t want people to see MS? Sadly, awareness has to be spoon fed to others. Little bits. The taste is bitter so, go slow.

If you overdo the information, glazed eyeballs are the result. Some choking may also happen. Strained MS information spit back at us is the last thing we need. Like feeding a baby strained peas, take it slow. Be patient. Little bites.

I see MS awareness as conjoined twins when it comes to others. I give others the scientific/medical side and I always couple it with a simple explanation. MS is not easy for anyone to understand. Analogies help when explaining a symptom to others.

Yes, there are times I lied and said it was from my college cheerleading days. I tell them it was a neck injury from falling off a pyramid. What? I was, in fact, a college cheerleader and I did fall off a pyramid. Not a total lie. Plus it is way more glamorous and interesting. The people I have told this to were usually repairmen that I will never see again.

Lying is wrong, I know. Everyone likes a bit of drama though. I now say it is MS and let them digest it and ask questions, if they want. Boring. Most people need time to digest MS information. Awareness is part of that digestion. Frustration at others not grasping or understanding it is the greased pig of MS.

Heat and fatigue plague most of us. I never keep that to myself. This is when you get to play detective too. If you think the person can take a bigger bite, share. If not, back off a bit. You have to kind of see what the person can handle.

Know your own limits too. We are all super heroes, but even super heroes have limits. The Flash can only run so fast, for example. Super heroes know their limits and have enough humility to know when to stop.

It has gotten easier, as my MS shows now. People know I can’t regulate my temperature.  The ice wraps and frozen drinks give it away. Maybe me looking like a wet dishrag was a clue. I make the drowned rat style look good.

Explaining neurological fatigue is not easy. We don’t really have chronic fatigue, but it is chronic. It never goes away and sleep doesn’t mean energy, ever. It helps that my sons and husband see when I begin to wilt. Around others I say it politely and do what I got to do. I exit the stage and if people boo and hiss, I let them. Take care of YOU. Self-awareness is important too.

Awareness is tough, but be aware that you are the one dealing with MS on a personal level. Fatigue and heat ruin YOUR fun. We are the ones who deal with what happens when we get too tired and/or hot.

Years ago, I once got too hot and lost vision in both eyes for about 30 minutes. My life stopped. Fear tore me apart. No one else knew and life didn’t stop for them. It was a very long 30 minutes for me.

We have roadblocks and we have to find a way around them. Even if people had known, would it have made my eyesight come back faster?  If I had avoided getting hot, my sight would have been fine. Learn to be on top of your own awareness.  Awareness goes both ways.

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