Author Archives: MultipleSclerosis.net

What do you want people to know about MS?

Posted on by
3

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“It’s out of my control.”

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

Share Button

Spring Cleaning with MS

Posted on by
Reply

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

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

When It’s Time to Clean                                                                     

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

Ongoing Energy Savers

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

Sort the Clutter   

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

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

Ask for Help

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

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

Share Button

Recovering from ‘Overdoing It’

Posted on by
3

Recently, one of our community experts wrote an article detailing how she recovers after a day of “overdoing it.”  Whether overdoing it means doing too much physical activity, traveling, or just pushing yourself past your limits to take a shower, so many of our community members could relate to this feeling.  Whether this occurs frequently or only occasionally, you are not alone!  So many people responded with what overdoing it means to them, how it frustrates them, and they you recover.  We received so many wonderful comments, we wanted to feature several to share with everyone!

The Overall Frustration of Overdoing It

“For me, overdoing it brings foot drop, a very bad mood, balance issues and trouble getting things into words. Oddly enough, reading books gets hard too……my mind just can’t seem to concentrate”

Overdoing it is rough and what might get you one day, might not be as bad on another day. You never really know until you’ve done it. And dealing with those who have no idea what it’s all about only adds to the problem”

“It stinks when ‘overdoing it’ consists of walking my child to the bus stop so she can get to school, coming home to make myself a bowl of cereal, and going all-out and brushing my teeth immediately after eating!”

Overdoing it can take on many forms and can be caused by completely varying triggers, causing much frustration and agony.

Attempting to Avoid Overdoing It

“I try to pace myself and not schedule too much for one day, but I also want to live as much as I can while I still can.”

“It is important to pace yourself which is why it’s important to put some breaks in between long days. But even doing that I’m still exhausted”

“I’m trying to make sure I eat healthy and pace myself, but it’s really difficult once I try. I’m still looking for a balance between work, classes and personal life”

Even the best laid plans and precautions can still lead to exhaustion later.  If this sounds like you, you are certainly not alone!

What to Do Once Exhaustion Sets In

“For me, the fatigue is the hardest hurdle because you can’t navigate around it. It must be recognized, respected, and my body rested. Always when it’s the last thing I WANT to do. Surrender. But meditation and focusing on releasing that anxiety from being forced to stop is an ongoing practice”

“I’ve been getting OT/PT and they made me keep a log of activity. I can do 1 to 2 activities a day. We practice taking breaks. Breathing between steps. Sitting before it’s too far. Laughing more”

“Try everything you can imagine to pull yourself through this maze. Exercise at home if you can’t get out. Don’t feel bad if you can’t accomplish tasks as you once did”

“Today I went in my room and took a nap. I explained that I had to. When I got up I apologized and told them I really had to take that nap”

“Sleep, shower, sleep, sleep, and sleep!”

Everyone handles their exhaustion after overdoing it differently.  Whether it’s distracting yourself with a good book or movie, getting some exercise, shifting your mindset, or just getting some good, old-fashioned rest, you know best what your body needs!

Let us know how you overcome the exhaustion after overdoing it.  Your advice may help someone else in the community who finds themselves struggling with this experience!

Share Button

Loneliness, Being Alone, and MS

Posted on by
4

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

Enlisting the Support of Animal Companions

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

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

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

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

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

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

Finding Hobbies that Soothe the Soul

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

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

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

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

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

Adjusting Your Outlook

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

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

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

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

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

Share Button

Has Your MS Caused You to Embrace the Hermit-Life?

Posted on by
2

“I make plans, I cancel plans, all in the name of MS.”

“Friends just don’t understand, I’d rather just stay home.”  

MS can be overwhelming in so many ways that most others can’t understand or relate to.  Many individuals with MS find it can be exhausting and tiring to get out and socialize.  The constant forgoing of plans, canceling on activities that you may have looked forward to for weeks because of a flare-up, or the feelings of exhaustion and frustration that come along with your daily MS battles may push you more and more towards a hermit-like life. We recently shared an article with our community from our advocate, Laura, called Has MS Made You a Hermit? The response from our community members was amazing. Here are some highlights from what they said.

“I tend to push people away that want to help, forgetting this is new territory for them too.”

“Regarding help and independence, it’s annoying because OFTEN people want to help me when I DON’T want help, and don’t want to help me when I DO want/need help”

It’s challenging going places and dealing with people who insist on “helping”.  Sometimes, when you go out, others feel the need to constantly try and “help”, when, in actuality, you are capable of doing things on your own.  It just may take a bit longer than others, which is totally okay!  However, it can get taxing to continually try to explain this to others.

“I feel this way a lot, but sites like this keep me going and help me realize I’m not alone.”

“Thank you for speaking out with this piece. Once again, so relieved I’m not the only one.”

Social Media can also be emotionally exhausting on anyone, yet even more draining for those with a chronic condition.  It’s tiring for those that are researching facts and cures and deciphering between lies, truths and half truths.  Social Media can trigger many emotions when reading others comments and situations, and can cause a lot of confusion and frustration.  Conversely though, social media sites and communities like ours can often provide a safe social haven where you can get the social exchange you might occasionally want, without having to leave your home or expend a lot of energy!

“For me, it’s been easier to not go out and talk to people. Fatigue, cognitive problems and the fact that I really don’t enjoy social events that I would have had fun at before…”

“Been easier to hang out with my dog since she doesn’t ask questions.”

“I love my friends and family, but fatigue says I love my bed a tad more. And with Netflix, popcorn, and wine, I can’t say it’s not time well spent…”

At times, going out socially can cause apprehension and overwhelming feelings, as some attempt to go out for a fun social evening, yet try so hard to avoid negative conversations and situations.  It really can set you back and take a toll.  Sometimes you may just want a rest from all the exhaustion that these situations bring.  Especially if you feel like just getting through each day is a chore!

It is completely understandable if you just want or need to to stay in and stay to yourself to avoid the grueling challenges out there.  You know the balance you need, and what your body can and can’t handle.  It’s completely okay to say that a hermit’s life is the life for you when you need to!

Share Button

Some Things People Wish They Knew When Diagnosed with MS

Posted on by
3

This past month, we published an article by one of our advocates, Devin Garlit, that centered around things he wished he had known about how his MS would progress upon diagnosis many years ago.  In response, many of our community members affirmed not having expected many of the obstacles they have had to face since diagnosis, including cognitive and mood issues, the complex trial-and-error nature of MS treatments, the unpredictability of MS progression, as well as social and medical support, additional stress, and the need for sufficient financial planning.  We wanted to share what they had to say. MS can affect everyone very differently, so not all of these themes may resonate with you, but it seems many individuals in our community have converged around a few key issues.

Friends and Family Support

“The hardest thing for me to explain to friends and acquaintances is my (often) sudden need to stop engaging and seeking a place for “quiet time” in order to regain control of my thoughts and executive function. Sometimes I have to just blurt out, ‘I can’t think right now’”

“If I am overtired or overheated, my brain turns to mush. I need my husband around when I attempt new activities that require exerting energy in public. He watches over me carefully and can tell when I will need help. So, I don’t attempt challenges like bus trips or museums, or traveling to new places unless he (or some other understanding relative) is with me”

Cognitive Fog and Stress

“From one person in a STEM career to another, cognitive issues are definitely the most scary for me, and my most persistent symptom (well, and fatigue … but the cognitive fog is almost like an extension of fatigue), and are probably responsible for my recent job “re-assignment” that has left me devastated beyond words”

“Stress has always been present in life, it is just how you deal with it that is important and that is something I am working on. Maybe looking for a counselor or someone who I can talk to for some tips”

“Wow can I relate, especially to the cognitive issues. I wasn’t prepared for that”

The Unpredictability of Medical Support

“My first brain doc was diagnosed with MS herself and had to retire. Reading this was like reading a biography of my life with MS. About to switch health insurance and consequently, will be starting over with a new neurologist. This will be my 4th brain doc”

“Yes the doctor part is true and so is the stress. I just recently changed neurologists and will probably change again next year”

“The part about the doctors is so true! You must advocate for yourself. I was seeing a neurologist that had me coming in every month! It was getting ridiculous and he didn’t seem to care how I was doing just that I was on [the same medication]”

“I was not very well informed by my neurologist when I was diagnosed. He told me to google MS and do my own research about it—that was the biggest mistake. I scared the crap out of myself”

Although MS can affect everyone differently, it is very apparent that no matter where are person is in his or her battle, there are some common things people don’t expect.  Please keep sharing your stories and personal journeys with us.  By sharing our experiences, we may be able to paint a clearer picture of what life may be like for those who are just beginning on their battle.

Share Button

What YOU Wish People Knew About MS-Fatigue

Posted on by
1

21665

MS-related fatigue is not “regular” fatigue, but it’s hard to help people who don’t have MS understand what this type of fatigue is really like. We recently shared an article by one of our community experts outlining some things others may not know about having MS-related fatigue.  So many of our community members shared their feelings with us, so we wanted to capture some of their thoughts on what they wish others understood. Here’s what they had to say.

Wishing Others Would Simply Understand

“I know I work, and by the time I get off, my body doesn’t want to move, much less think. I can be somewhere and be just as lost because of the fatigue. I feel your pain that if you don’t have MS you don’t understand”

“Thank you so many times over. I started crying reading this. I have tried so many times to explain the difference between being tired and fatigue, I feel to no avail. My fiancé tries to understand but gets so frustrated with me when all I want to do is sleep”

“I have had this issue since my diagnosis, and like you said, when I say I am tired, people tend to go straight to their own tiredness and talk straight over me if I want to explain”

Cognitive Fog Troubles

“I am one of those who still work, but the stress of the job causes brain fog and cognitive issues and mental exhaustion. It’s not that I can’t do my job, it just takes me longer”

“More and more it’s not just physical fatigue, but a mental fatigue as well. My once very capable brain slows down to a point that the simplest math task or organization plan has to be figured over and over again until I’m annoyed and frustrated with myself”

“Spot on! I often find my brain sending me messages to give up. I can compare it to the feeling of sprinting until you can’t sprint any longer. Your brain tells you to stop, give up. The same is true for me with MS. My brain is telling me to give up”

Frustrations, Life Changes, and Never Giving Up Hope

“I always get the, ‘you’re just getting older.’ Hello!! I’m 34, how’s that old? Isn’t that like the prime of your life? People run marathons well into their 50’s!”

“On day after working, my then 10-year old son asked me to play a board game, I replied, ‘I’m too tired.’ He shot back, ‘mom you’re always too tired.’ That broke my heart”

“I can feel great, go out to dinner, order my food, and by the time it gets served, I’m so fatigued I don’t feel like picking up my fork to eat”

“You have the fatigue, but you still try to do things. It takes twice as long, since you drop things or are off balance. This leads to frustration, then anxiety, and full-blown stress. And your mind keeps playing the tune, ‘I wish I could feel good for just one single day.’ And to top it all off, it’s a beautiful day and you just want to enjoy it. The day in the life of a person living with MS”

“Remember that MS is not what defines us. We can still have a good life if we remain positive and keep trying. We CAN NOT let it get us down. We are all better than that. And for me, I try to remember that I am not in this alone, and sometimes that helps me get through the day… In between naps!”

Thanks to our community for your awesome responses. Keep sharing with us, and with each other, how you handle MS-related fatigue, and what you wish others knew about your struggles!

Share Button

When someone asks, “So, What Do You Do?”

Posted on by
1

We recently published an article by one of our community experts on how a simple small talk question can take on an entirely different meaning when battling a chronic condition.  Life with MS can make it extremely difficult, if not impossible, to continue working fulltime, often leading to career changes, unemployment, or life at home on disability.  This can make answering the common question, “So, what do you do?” incredibly challenging.  Invisible symptoms, seemingly good days, and the difficulty in trying to get others to understand your struggle can make your answer to this hard to put into words.  So many of our community members shared their own experiences with us after reading Devin’s article, and created some really great discussion.  We wanted to share some of the stories and responses we received!

Ways to Answer the Dreaded Question

“I am old enough now that I often just reply, ‘I’m retired.’ Then people look at me like I must have made lots of money and was lucky enough to retire early”

“I do facilitate workshops for those of us living with chronic conditions so that is an answer I sometimes give. I still hate the question though”

“Accept it. You are a fulltime caregiver…for yourself”

“So true, I feel like I’m always trying to justify myself to people! People see me and say, you look fine, you could work, but they don’t realize to be at that social gathering, I had to rest all week!”

How Life Without Work Has Impacted the Community

“I was an RN, and my role was to give comfort not get comfort from others. When I had to leave my last job, my world ended as I had always known it. I miss my used-to-be life”

“I couldn’t agree more. I’ve been on disability for almost 2 years now, and I hate every day of it. When I dreamed of not working, I didn’t dream of not being able to do anything else. I thought it would be fun! This is not fun. Feeling useless is horrible”

“I miss working! It is nice to be with other people. It allowed me to forget my MS for a little while until the fatigue would set in!”

Finding the Positive in the Struggle

“My family and friends want me to make ME the priority. This whole situation is rocking my world!”

“I was an electrical engineer. I spent a fortune on good education and then MS strikes. If there is any good in all this, it is that MS makes for a great friend filter. The friends that stick by you through the MS journey have been vetted and are truly friends”

“Couldn’t have said it better. Right now going through second round of disability approval! Never in my wildest dreams would I have thought I can’t work. Everyday is different, just don’t know how you are going to feel. One day, can’t get out of bed, next day feel like you could conquer the world. We just have to stay positive and hope we can take whatever comes our way!”

Regardless of how you answer this question, it was very clear to see from the community comments that you are not alone.  Even those who didn’t share their own experience often responded with a resounding, “SO TRUE!” or “This hit the nail on the head for me!”  Responses like these remind us why it is so important to be a part of our online community and support one another on this no-doubt challenging journey.

Let us know how you handle this question, or others like it, that can take on a whole new meaning when living with MS!

Share Button

Do You Live Life in an MS “Bubble”?

Posted on by
3

We recently shared an article with our MS community about living life in an MS ‘Bubble’.  So many of our community members expressed feeling similarly to the author, Ashley, and feeling like they retreat to a mental hideaway when stress and depression of MS becomes too much to handle.  Their responses were amazing, and we wanted to share some of them!

Preferring the “Bubble” to the Outside World

“The bubble is challenging sometimes, but it’s also safe. There are just some days where challenging myself isn’t worth the risk of falling, dropping things, etc. Trust me to know my limitations. I’m not lazy. I haven’t given up”

“Thank you for giving the perfect title to the place where most of us escape to from time to time as needed.  People may not understand why we retreat to our “bubbles” but they are a safe place for us no explanation needed”

“I also live a lot of my time in a bubble…I sit with my back to everything, and play 1 level of 1 game for hours on my laptop. I tell my husband and son that I need to zone out for awhile and thankfully, they understand”

“I mentally prepare.  No appointments, tell hubby having a recharge day, not doing anything.  Sit, drink tea, watch lots of TV and/or read”

“Being trapped so much is why I’m on social media so much…I miss getting out, but I also really appreciate these online acquaintanceships”

Hiding in Your Bubble Instead of Engaging with Others

“This is just me.  I definitely shut myself away in a bubble—90% of it was my illness, 10% was that I just found it hard to be around people. It’s hard to listen to everyone’s great lives when your own is crumbling around you”

“This is so true. I’m supposed to be meeting friends for lunch tomorrow, but my fatigue levels are terrible just now.  I don’t want to cancel and I don’t want to let people down, but I also don’t want to fall asleep.  It would just be easier to stay at home in my protective bubble”

“Sometimes people can be so cruel it makes me want to run home and stay there. I’m very comfortable by myself now”

Enjoying the Ability to Avoid Responsibilities and Daily Tasks

“Really! It can be challenging just thinking about moving or turning over in bed!”

“This is so right!  People just don’t get how hard it is to do the simplest things.  Like shower, get dressed, and go out.  The first to get done.  Maybe pj’s go back on and stay home is more like it”

“Thank you for saying it!  Get so sick of people saying that going out will be ‘good for me’.  NO it won’t!  It will exhaust me and make me feel ill for days, sometimes weeks!”

“Hermits unite!  Lol!  People with NO energy don’t wanna move…let alone GO somewhere…”

“It’s just easier to stay at home than to get dressed which tires me out more than I can say”

“It’s just easier…I don’t even want to go on vacation”

Not everyone reported feeling safe and comfortable in their bubble, however.  Some of our community members said they even try to fight the bubble as much as possible, and stay engaged and active.  Let us know how you view or use your personal MS bubble, and how it affects your daily battle!

Share Button

I Better Do It Now Before I Can’t—Community Thoughts!

Posted on by
Reply

Recently, one of our community experts wrote an article about the struggle to find a balance between taking advantage of fleeting, “good” days with MS, and potentially overworking your body to the point of putting yourself out of commission even longer.  We received an outpouring of responses from you in the community, ranging from “OMG! Me too!” to personal stories of finding your own balancing point.  Here are some the things our community had to say:

Feeling the Pressure of the Balancing Act

“Oh boy this is the story of my life!! I get that one morning that I feel good (not great) and I am on a mission. By the afternoon, I am starting to pay for it. Factor in the heat or cold, then it is a whole new story!”

“I do the same darn thing…will I ever learn? Those few and far between good days are so great and we can’t help but to take advantage of them. It’s like drinking too much and being surprised we have a hangover. But jeez, we pay for doing something not that fun, like vacuuming!”

“I have a ridiculously difficult time with my “time-to-stop” meter; I seem to operate in an all or nothing mode…if I can remember what “all” entailed in the first place!”

“Perfect timing for me to read this, “so true to my life” article. I’m having one of my “good” days and trying to accomplish as much as I can while I can. Funny how our minds can whirl with so much activity, but our bodies don’t cooperate”

Trying to Take Things in Moderation

“This describes me for sure. I feel so good about myself on those “good” days because I get so much done, but as we well know, another “good” day is always followed by “bad” days. So if things get done, fine. If they don’t get done, well that is fine too. This is one of those things you just have to accept when living with MS”

“I’ve had to train myself to “make hay while the sun shines” and (try) to accept that sometimes good enough is…good enough. I still struggle with overextending myself though”

“This is so true. You feel good and get started with one thing that turns into more as you go and always over do it. I want to do things like I used too, then the monster inside me kicks my butt down for days! We all do what we can on our good days”

“Depends on what I do—but one strenuous day I am out of commission at least the next day. Try to do what I can and after more than 20+ years with this beast, I have finally learned to listen to my body and stop most times when it gets to be too much”

Managing the Unpredictability of Life with MS

“Hardest thing for me is to figure out exactly how much I can do each day and not lose my tomorrow. One day I can accomplish a lot, but another day those tasks will put me down for a day or two. Thankful for my good days, but I HATE the inconsistencies of MS”

“I get so happy and excited when I feel quasi-normal. I try and do as much as I can. I do this constantly, then end up unable to move for a couple of days. Just when I feel I am understanding a rhythm to this truly wacky disease, it throws me for a loop. The learning curve is a slippery slope”

We were so overwhelmed by your great responses, and it’s clear that you are not alone in your battle to manage taking advantage of rare good days, while still taking care of yourself to prevent further setbacks.  Let us know how you manage this balance, or tell us about any of your experiences!

 

Share Button