Although each individual’s journey with MS can be incredibly varied, there is one common factor experienced by nearly all individuals with MS at some point throughout their journey with the condition: relapse. Relapses are all too common for individuals across varying types of MS, despite common misconceptions. Contrary to the names of the various types of MS, relapses can Continue reading
Most invitations sound great when they come, but for many with MS, it’s simply impossible to predict the way one might feel the day of the event. Symptoms can change, flare-ups can occur, and/or exhausting fatigue might set in. The desire to go may still strongly be there, but the physical strength and wellbeing are not. A response of “maybe I’ll be there” is often necessary for those living with MS, and sometimes, it’s the Continue reading
MS and some of its related symptoms, such as numbness, dizziness, weakness, loss of balance, tremors, and more, can lead to an increased risk in experiencing falls for those living with the condition. One of the MultipleSclerosis.net contributors, Devin, recently posted an article about his life with MS-related falls, and how he copes with these potentially frustrating or embarrassing situations. After this article was published, we received an incredible response from our community on their experiences with falling, and how they cope with this often-scary situation. Below are some of the amazing responses we received. Continue reading
For most people living with MS, summer does not bring feelings of excitement and joy. Rather, it’s a time of strategizing, planning and being careful to avoid the heat, which tends to worsen symptoms.
To start a conversation, we at MultipleSclerosis.net asked our Facebook page for tips and tricks to avoid summer’s worst. More than 500 community members reacted to the post, and 34 offered their strategies for staying cool and comfortable all summer long. Here’s what they had to say! Continue reading
Bladder dysfunction: often defined as urgency, leaking, frequent urination, and/or incontinence. Although bladder dysfunction affects 78-90% of people with MS, many patients experience feelings of shame, embarrassment, and frustration about their bladder-related symptoms.1 To better understand these challenging symptoms, we reached out to our MS community members to see how bladder dysfunction impacts their daily life, and what they do to control their symptoms. Continue reading
For some, saying the words, “I’m tired”, may indicate a lack of sleep, or perhaps the end of a long, exhausting day. However, for those living with MS, these two words can mean so much more. Fatigue is one of the most common, and one of the most life-altering, symptoms of MS. Of the many issues associated with MS, fatigue is one that can have the greatest impact on daily life and an individual’s ability to do the things they love. We recently published an article titled, “What I Really Mean When I Say, ‘I’m Tired’”, where our contributor, Calie Wyatt, compared MS fatigue to sinking in quick sand. Cali vividly describes her ‘biggest demon’ as her unrelenting tiredness, and how it brings her down every day. She also tells us how difficult it is to get others to understand what it means when she says she’s tired.
In response to this article, we asked our community members to help explain what their fatigue feels like to them, and the response was overwhelming. Continue on for some of the great responses we received.
Mental and physical exhaustion
Feelings of extreme mental and/or physical exhaustion are some of the most common descriptors of MS-related fatigue. Many of our community members shared how debilitating this experience can be each day.
“Living with fatigue is grueling. I have days where trying to form a thought, let alone a sentence, is nearly impossible”
“I try not to put myself into situations where I get fatigued, because it can be dangerous because I can’t think straight and get anxious”
“I am tired 24/7. It has become my new normal”
“It is a weight pulling you down! Mentally and physically”
“It feels like your body is shutting down and it’s too weak to hold you up”
“I try so hard to forget my fatigue & be active & fun, but it ALWAYS drags me down. My mind knows I’m fun, but my body just won’t let me. I must constantly fight my body & pick my battles to do the most important things”
“I would often say it is like I am being dragged to the ground which eventually swallows me up”
Others who aren’t living with multiple sclerosis, or who don’t have fatigue that comes from a chronic condition, may struggle to understand MS-related fatigue and the ways it limits activities. This lack of understanding can be incredibly frustrating. Not to mention the frustration that already comes with the fatigue on its own.
“Trying to explain this tired we have is almost an exercise in futility. The only ones who get it, are those who have experienced it! Nothing ticks me off like saying I’m tired and having someone say, ‘me too’. What I wouldn’t give to be their kind of tired!!”
“I am frustrated by my fatigue. For me, fatigue affects my ability to think straight as well as being tired. The hardest thing for people to understand is how much effort I put into NOT getting fatigued.”
“Sometimes I want to scream, if I wasn’t so fatigued! My fatigue and exhaustion consume me. I also have fatigue that alters my daily activities for many months at a time. Stress doesn’t help. A description I’ve often used to describe the fatigue is that I feel like my batteries have been depleted, removed, and I’m just running on empty. And I can’t find any way to recharge them, and there are no charged batteries to be found”
“The fatigue is dominated by frustration and some anger; compounded embarrassment”
“It is frustrating to try to explain to people that yes, I look tired but getting more sleep won’t fix it and is harder than it sounds!”
Physically cannot move, talk or breathe
MS-related fatigue can be so intense, that it may feel like quick sand physically pulling the body down. This feeling can impact a person’s ability to carry out basic functions, such as moving, breathing, or talking.
“I’ve felt like I am too tired to even breathe”
“I say I feel like a melting ice cream cone”
“I would often say it is like I am being dragged to the ground which eventually swallows me up”
“There are days that I feel like I can’t move. My extremities feel as if they are made of lead and my head feels all fuzzy”
“I have days that I feel too “tired” to breathe, talk, move…. it’s gotten bad though, I know, when I just don’t feel like it’s worth trying to say anything. It just seems like the thought of talking is overwhelming…and I take constant big breaths because I don’t feel like I am getting enough air”
“I feel constantly tired and dealing with that heaviness and sinking in quick sand feeling. And don’t really care to have others understand anymore because they simply never will”
“I feel like gravity is 15X greater over my body right now”
“MS fatigue requires all my energy for blinking and breathing”
It’s quite clear that MS-related fatigue is not only debilitating and real, it’s also unique and unrelenting. Our community members did an excellent job trying to describe this frustrating experience, however, it’s hard to fully understand this phenomenon unless you are living with it every day. MS-related fatigue can be a constant struggle, and the words “I’m tired” often don’t even scratch the surface of what’s really going on. These two words can take on a whole new meaning for those struggling with MS-related fatigue.
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
“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.
“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.
- 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.
Recently, one of our community contributors, Nicole, wrote a thought-provoking, and emotionally charged piece titled, “Still Learning How to Live with MS.” The title of the article rings loud and true to her message within it. Nicole outlines a Sunday morning where she feels on top of the world. She feels an extra kick of energy, and a desire to take on the day. She adds more chores and errands to her to-do list than normal, and although she is questioned on this decision by her husband, she continues on with her grand plan. Throughout the day, Nicole feels great, but by early evening, she feels weariness set in. Although this is a common pattern for her at this time of day, this fatigue is heavier and consumes her more and more as the minutes tick by. She is so weary, she is unable to eat on her own, nor get fully ready for bed.
She reflects on this day and realizes that although she has been living with MS for almost 18 years, there are still days that get away from her and bring unexpected tribulations. She recognizes that, although she hates her MS, she still needs to respect its limitations and continue to learn from it. Especially when it comes to slowing things down, asking for help, and taking a break—despite what her short-term energy levels feel like. After this article was posted, comments poured in from across our community, and it became apparent that Nicole was far from being alone in her experience. Some of the sentiments shared by our community members are collected and shared below.
Always battling the fatigue
Many of our members weighed in on their constant battle with fatigue, and how although it is a constant, it can still be incredibly frustrating and knock them off of their feet (both literally and figuratively).
“I fight with myself every day. I expect myself to do more and be more than I can do or be. I never get my stuff done all the way. My fatigue is horrendous. Sometimes I get so tired, I just have to nap because I can’t do any more that day or moment and if I try to stay up, sleep overpowers me. I hate asking for help too or needing it. I feel helpless.”
“The least little thing wears me out. Tried to play with my great grandson who is 2 and a half, and it just about did me in. I was so exhausted and hurting so bad that I went to bed at 7:00pm.”
“You hit the ‘brick wall.’ Happens to me all the time. Need at least three days to recover completely.”
“It’s still difficult for others to understand what happens to me if I don’t rest…lots. The amount of energy that is needed to push myself through a day is exhausting. I explain that I can manage some things, but not all things. I have to keep reminding them of this spms that takes my strength and makes my life very different from theirs. Most do not understand the utter exhaustion.”
“So true and so hard to restrict what you do when you feel like you can do it, but pay hard for it later.”
“It’s hard being an “A” person in a “B” body.”
Constantly trying to take control when energy is high and forgetting limitations
So many of the comments shared with us revolved around trying to capitalize when energy bursts strike. Although this may be a rare occurrence, some of our members feel tempted to take full advantage of them, only to be back to extreme fatigue and pain later. Balancing energy and the desire to get things done with true physical limitations is a constant learning curve.
“Yes, it is hard to pace yourself. I have had MS formally since 1990. I try not to overdo it, but when I am feeling good, I forget and try to get everything done. We have to remember that we will pay for it later. Keep going and don’t give up!”
“Key word being ‘forget.’ Usually, I start each day with positive thoughts and energy. I can do anything until I can’t. Then I remember. Each day ends the same with fatigue and pain. And then, a new day is here to repeat itself. I do this ‘forget’ thing all the time. I need to pin a list of ‘don’ts’ on my shirt.”
“‘Sometimes I want to be like everybody else’ is what gets me in trouble every time. After 10 years you’d think I would know better, but sometimes it’s worth trying. It’s getting harder thought to push myself. I shut down quicker than I used to and just can’t do it some days no matter how much I want to.”
“Thanks for reminding me again to respect my limitations. I also forget. Your thoughts are timely because I was just saying how I’m tired of not doing much. I always want to do more and not plan so much for fear of exhausting my body to only suffer another exacerbation! My only advice to myself is to try to appreciate what I can do and find goodness in those accomplishments, as few as they may be sometimes. There is so much beauty in enjoying little things. I try to tell myself, when you slow down, you see more! Hang in there, and know you’re not alone.”
“As others, I can relate. I have learned to limit my chore or errand list and I now even literally write the word REST on my lists, so I don’t forget to take the time out. I think the still learning how to live with MS is an ongoing process for us.”
Do you feel as though you’re constantly learning from your MS? Whether it’s learning to battle fatigue, remembering and respecting limitations, or a completely different experience we didn’t mention, share with us if or how your relationship with MS is evolving.
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.
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.”
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!”
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!
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!
- Simmons, Jonathan. “MS Symptoms.” MultipleSclerosis.net, Health Union, multiplesclerosis.net/symptoms/. Accessed 16 Dec. 2017
- 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.
- 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.