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GoFundMe Support for Positive Living with MS

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I am Penelope Conway, the founder and writer of Positive Living with MS and I am raising money to cover the yearly costs for my website at GoFundMe.

I was diagnosed with multiple sclerosis in 2013 and went about looking for information about MS, the drugs used to help, and healthcare in general. Some of the things I learned were great, some not so much, but all of it beneficial.

One thing that truly annoyed me was when I would visit support groups at that time I always left feeling worse than when I had arrived. Most groups were just woe-is-me sessions and left me with an icky heaviness inside. So my remedy was to never go back to them.

Can’t people talk about MS and still laugh and enjoy themselves without all the woe-is-me attitudes? I found few resources for positive encouragement at that time. A place to laugh, to cry, to share, to just feel normal in the midst of a life of chaos. That’s when I decided to start something myself, thus the birth of Positive Living with MS.

I don’t make any money posting things online I just gain great new connections with people all around the world. One of my most popular posts is MS Facts. Beware… there’s humor in there to talk about all the symptoms we deal with. My video is also a favorite which I plan to do more of this coming year.

I try to post on my blog once a week to talk about my own experiences with MS, and post daily on social media to facebook and X. I’m glad to be able to share my journey with everyone.

I use whatever reach I have to talk about multiple sclerosis: the good, the bad and the ugly. Some with humor, some with tears, but all with a matter-of-fact straight talk. I don’t sugar coat things to make others feel comfortable about the topic I’m discussing. I just tell it like it is from my perspective.

I no longer work due to the progression of MS in my body. I have trouble cognitively as well as with uncontrollable tremors and weakness.

I only have my social security benefits to cover my living costs and squeeze out all I can to pay for the website. Thank you in advance for your support.

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I always say MS is a disease that keeps on taking

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Have you ever wondered if someone else has the same outlook as you regarding multiple sclerosis and all the troubles it brings to your life? Does someone think the same thoughts as you? Or maybe you look at your life and decide you’re all alone in your opinions about life with MS. Voicing a thought that’s contrary to popular opinion can be funny at its best, or terrifying and nerve-wracking at its worst. But having an unpopular opinion that goes against the status quo may not be as uncommon as you think. You just may be the only one brave enough to say it.

Many people don’t like talking about how much a person’s life changes when a diagnosis of MS comes along or how much their life is actually spinning out of control. It’s hard facing the MS monster at every waking moment. Just because people aren’t talking about it or choose to hide their struggle, doesn’t mean it’s not real.

Suicide rates among those living with MS are twice as high as those of the general population. The reason? Because our symptoms continually progress (meaning they keep getting worse) making life increasingly more difficult. We face things like numb body parts, fatigue, dizziness, vision loss, pain, emotional changes, decreased mobility, and a lack of understanding from others. We lose jobs, friendships, financial stability and independence. There are countless challenges in every day life, and as time passes they seem to only worsen.

It’s kind of like watching a grape slowly withering on the vine even though it’s given plenty of water, sunshine and care. We experience changes in our body and feel them with such intensity that it’s hard to even put our disease progression into words. We can actually feel the numbness, pain and difficulties creeping up our legs, arms and entire body to where one day it may just be our big toe that we can’t feel and the next it’s our entire leg.

Coping with something that continues to progress over time brings on feelings of hopelessness, stress, despair, and a host of other mixed up emotions. All we want is to fit in, get our life back, and live that carefree life that MS stole from us. I always say MS is the disease that keeps on taking.

Who wouldn’t get depressed knowing that their body was destructing from the inside, out? Sometimes it’s easy to face the struggle, but many days it’s a battle between sanity and trying to hold onto our dreams. It’s when those dreams begin to fade and all we have left is the pain and confusion, that’s when the tears begin to flow and depression rears its ugly head.

You see our smiles, hear our laughter and admire our strength, but in actuality we know those things are only hiding the pain… both the emotional and physical pain.

If you are having a wonderful day, please don’t criticize someone who isn’t. Enjoy your day and share your sunshine with others. If you’re feeling defeated and frightened of the future, reach out to people for help, and if they won’t listen to your pain, questions and doubts, don’t be too ashamed to talk with a counselor or psychologist. There’s nothing wrong with needing help with your inner struggle. We all have them. It’s just sometimes easier to face the pain with someone else’s help than trying to do it all alone.

Don’t give in to this relentless disease. We are all here for you, standing with you, reaching out in our own kind of way to help. We may not be perfect, life may be a mess, but you are loved, cherished, needed and oh so wonderful.

Life may not have turned out the way you expected, but you have a story to share that can help countless of people cope with the unplanned and unexpected. Talk about what’s going on. Help others see that the struggle is real. It’s time to let go of holding on so tightly to a life that once was. Let go and come dance with me.
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If you know someone who’s depressed, please resolve never to ask them why. Depression isn’t a straightforward response to a bad situation; depression just is, like the weather. Try to understand the blackness, lethargy, hopelessness, and loneliness they’re going through. Be there for them when they come through the other side. It’s hard to be a friend to someone who’s depressed, but it is one of the kindest, noblest, and best things you will ever do. ― Stephen Fry

Once diagnosed with MS, you find out who your real friends are

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Life was good before multiple sclerosis. I had great friends. We would spend time together on the weekends going out to eat or bowling, and in the summer we would always plan hiking trips through the mountains. When MS became a part of the picture, those nights out and trips dwindled. It got to where I wasn’t even being invited to dinner anymore, they would just go without me. It made me downright mad to be excluded like that. I wanted to scream at them saying, “I have MS, I didn’t die.”

Amazingly, you discover who your real friends are once a challenge arises. They will either stand by you and hold you up or they will walk away dropping you like a hot potato. If they choose to walk away, let them. You don’t need anyone pulling you down. MS is doing a good enough job of that already.

For those friends wanting to understand a little more about how life changes for a person with MS, I’ve listed a few things here. Maybe they will help you to understand MS and help you to be a better friend in the process.

1. Sleep is important to us.

We need to go to bed early. When I say need, I mean NEED, and when I say early, I mean EARLY! Our bodies wear out faster because they are working harder to do just about everything. The simple act of walking across a room exerts twice the energy of a healthy person doing the same thing, if not more. We have to think to walk. It doesn’t come naturally like it does for you. Every step includes a thought process about how to pick up the foot and where to put it back down. Now, add to that all the other things you do in a day. Many times we will be in the bed before the sun goes down, which means we may not be able to have a night out with the gang or stay up to watch a late night movie on the couch. When we do sleep, the time is sporadic which makes us even more exhausted the next day. Sleeping through the night without bathroom breaks and being awaked by pain is a rarity. So, if we say we’re tired, we are “I haven’t slept in days and every muscle, bone and cell in my body aches” tired.

2. Schedules are planned around treatment and sleep.

No longer are we able to plan ahead for a special event. Our meds and sleep patterns changed that the moment MS became a part of our life. If we are out enjoying the night and have to leave early, don’t get mad or think we are being unsocial for being the first person to slip out unnoticed. When our bodies are screaming at us in pain, and our exhaustion has hit an all time high, we would rather be at home in the comfort of our PJs so we can hibernate on our own couch. This way, if we have a moment when things get too intense and we shed a tear or two, we don’t have to explain what’s wrong for the hundredth time. Just know that if we ever say “no” or have to cancel last minute plans, it’s not because we don’t want to be a part of what’s going on or because we are mad at you. Our bodies just won’t let us join in.

3. “Just come over and sit” is not as easy as it sounds.

For one, we have to get ourselves dressed and make ourselves presentable which exerts energy. Then we have to drive through traffic to get to your house which can be dangerous, especially if we have trouble with vision, numbness in our legs, dizziness or fatigue. So, although coming and just sitting at your house sounds simple, it’s not. It becomes even more difficult when we have to leave and drive back home, because by that time we are so tired that driving can be scary and unsafe. It would be so much easier if you were to come to us. And not a loud party kind of come over either. There is a time and place for that, but most of the time we just want to know you care. Having a cup of coffee or tea for an hour or bringing lunch over would be welcomed and help brighten our day.

4. Simple things suddenly become difficult.

Laundry, cleaning, cooking, washing the car, vacuuming, making the bed, going to the store: they all sounds like simple things, right? But they’re not. All of a sudden we find ourselves struggling just to make the bed in the morning. What normally would take 10 minutes becomes 45 minutes. Our energy gets used up fast and our muscles weaken quick. All those things normal people do, we struggle with. We look around the house and want to cry because we have had to neglect things we normally would take care of. You know what would be the greatest thing of all? For you to volunteer to come and help us tackle the laundry or the scrubbing of the toilet.

5. We get tired of explaining the same thing over and over.

We understand that you don’t get it and that much of our pain you can’t see. We realize you can forget from time to time that we are hurting and suffering on the inside. But please, as a friend who wants to be a part of our lives, take the time to read up on MS so you can be informed. Be our biggest supporter: the person that stands up for us and fights for us when others point and stare or are saying stupid things and being rude. Hold our hand through the bad days and help us find our smile when we lose it.

6. Don’t judge us for our choice of treatment.

We are the ones living with MS and, surprisingly enough, we have researched more in depth about MS than most people because again, we are the ones living with it. We would like nothing more than to one day wake up and hear that MS is cured. Until then, we have decisions to make about a treatment plan. Those decisions are ours to make, not yours. Please don’t judge our decisions. Treatments are a trial and error kind of thing. They won’t cure us. They just delay the progression. Let us try what we feel is right for us, and if it doesn’t work, help us to make the next big decision for treatment. Leave the judgements and finger pointing elsewhere. We don’t need condemnation or criticism. We need support and care.

When it comes to friendships, we need them, we want them, we long for them, but we won’t be able to be the friend you have known in the past and we need you to be okay with that. MS has caused our lives to change. We would love it if you would help us through that change by changing with us. We know it’s not easy. Boy, do we know it’s not easy. But know that living with MS isn’t easy either.

True friends are a rare thing for the chronically ill. It takes guts to stand with us. Thanks for having the guts to stay.

How to Cope When Everything Keeps Changing

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I always say that living with multiple sclerosis changes normal (whatever that actually is) and everyone around me is finally getting a taste at having to find their new normal in the midst of the crazy world we live in. If someone could find normal for me and let me know where and what it is, I’d like to know so I wouldn’t have to spend so much time searching for it.

One great thing about the changes I have had to make is I get an opportunity to evaluate life a bit more closely and get rid of the toxic people and unnecessary things that were making life harder… without the added guilt. I know my life has gotten less complicated because of it and I like that.

Someone asked me, “How can you be positive surrounded by the mess happening in the world today?” Being a positive person while living with multiple sclerosis sounds like an impossibility. Is it even possible? Some would say it can’t be done. They would say that MS is so full of uncertainties, pain and complications that there is no way to face it with a positive attitude. But it can be done and is being done by thousands of people every day.

How can anyone keep a positive attitude while facing such hard times happening all around? Staying positive is not about hiding from the reality of what you are going through by trying to cover up the struggle in an attempt to keep the world from knowing it exists. MS exists. Hard times are real. Tears happen. No amount of covering it up is going to make it go away or lessen its troubles.

Being positive means that even though you are in the middle of the storm of all storms in life, you get out of bed in order to face a new day. Even when the pain has you doubled over in tears, you keep going. Even when your brain is foggy and your words are muddled, you give of yourself. Even when your life has spun out of control, you fight because you simply refuse to be defeated.

You are a fighter. Do you go through your day constantly complaining or do you try to find a small ray of light in the trial…a smile in the struggle? You can do this! You are doing this. I am so proud of you.

It’s alright to have negative thoughts when your path bends the wrong way or the unexpected happens. Don’t beat yourself up when negative feelings, thoughts, or words creep into your life. You haven’t done anything wrong. That’s just a part of being human. It’s okay to cry, to be afraid and get frustrated.

The challenge is to not let those negative things pull you down and hold you back from moving forward. Allow yourself to be real, to feel, cry, struggle and fight, yet still hang on to hope that today will be better than yesterday. Hope shows up when you need it the most. Hang onto hope. You got this.

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I have come to accept the feeling of not knowing where I am going. And I have trained myself to love it. Because it is only when we are suspended in mid-air with no landing in sight, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings. You may not know where you’re going, but you know that so long as you spread your wings, the winds will carry you.
― C. JoyBell C.

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I can honestly say I’m thankful for MS

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You cannot bargain with multiple sclerosis. No amount of self examination will alleviate the pain and destruction it is causing in your body. I tried at first and wound up feeling more defeated than victorious. I had to move past all the quick fixes people tried to push my way. I even tried some but there was no benefit or relief.

Is taking supplements helpful? Are good clean diets helpful? Is there a medication that will reverse everything taking place? Does anyone really have a remedy that works without fail? The answer to all of those questions is NO! They may make you feel better about yourself or even some of your symptoms may lessen and your body will fell healhier, but none actually heal you.

There is nothing to do about an MS life other than living it as happily, healthily and comfortably as you can. Make sensible choices in how to modify your home and even your life. Do your research and take the medications you believe will help you. After all that’s your choice, not your doctors. I have fired a couple of doctors over the years because they refused to actually listen to my needs. A doctor is there for you, not you for them. You are not their project, pin cushion or a patient to practice on.

Once you have moved past the diagnosis stage you eventually get to the point where you just don’t give a crap what other people think about you or your new normal. Are you physically disabled? Do you move slower than in times past? Do you have trouble with cognition making even day to day tasks troublesome? Do you have trouble breathing or even swallowing? Ugh… so many troublesome issues happening day to day.

Once I moved past the trauma taking place I looked back at life and what I have learned from everything I had experienced….

I can honestly say that I’m thankful for MS. Yes, that sounds crazy but it’s true. I’ve grown as a person. I’ve developed muscles I didn’t know I had. I can handle additional challenges in a way that I never could have done before. I’ve gotten closer to the person I really am and it has forced me examine my own values in a way few events ever have. All of that to me is a gift.

That’s my life with MS… all the nuts, bolts and springs of it.

My never-ending multiple sclerosis struggle

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I’m not going to lie and tell you that life is wonderful at the moment or pretend to have all the answers. The truth is, life is hard and for those of us living with a chronic illness it seems harder than it does for others because our struggle is never-ending and always changing.

Each morning I wake up exhausted but thankful that a new day is here filled with its countless possibilities. Throughout the day I face challenges that at times can become overwhelming, painful, and sometimes more difficult than I had ever imagined. Multiple sclerosis challenges can cause a lot of trouble and bring about a battle that I don’t always have the strength to fight. But somehow I gather enough strength to come up swinging. I refuse to let the struggle win.

Just yesterday I fell yet again transferring to my powerchair. You’d think I would have found a way to avoid it but I never do. I tend to go from point A to point L, M, N, O, P before I find point B. But even in my roundabout way, I get there. With my new bruises, wounded pride and 2 large cups of coffee I was able to get through the day. I made it… or so I thought.

It was right before bed that I discovered a leak in my urostomy pouching bag used for my makeshift bladder so I had to clean myself up and  put on a new pouch. Just doing that took the remaining strength I had left. My hands weren’t working well for me. Between tremors and weakness my hands were making the change difficult.

I barely had enough strength to climb into bed. When I finally got to bed for the night I paused to reflect on my day and without fail I realized that I made it through another day with MS. Maybe bruised and a bit wounded, but I made it through. As I closed my eyes I did so with gratitude and with a heart filled with thanks that I made it through another day.

After all that I remembered that a new day is coming. What will that new day hold? Will it be a good day, a terrible day, or will I even have enough strength to get through it? Will I cry? Will I laugh? I just don’t know. All I know is a new day is coming.

I know an MS life can be hard, but through the struggle I want you to remember this…

When things get bad, no matter how hard they become, know that even on your darkest, cloudiest day, the sun is still shining from behind the clouds. It hasn’t fallen out of the sky. It hasn’t run away or been turned off. It’s still there and although the storm clouds can become daunting and terrifying as they hide the sun from view, they will eventually shift and you will find those beautiful rays of light peeking out once again.

Don’t let your struggle steal your happiness. Stay strong and find new ways to persevere. Remember those moments when you pushed through the pain and managed to wade through the darkness? Those are your strongest days. You would have never experienced such strength if you hadn’t been pushed so hard to find a way to survive.

And that’s what you are…a survivor!

You are not alone in this journey with MS. Brighter days will come. I can guarantee you that.

Oh, look…I think I just saw a little bit of sunlight peeking through the clouds. It’s a new day filled with new possibilities. You are going to make it!

I’m not broken, a burden or an inconvenience

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In today’s world, we are constantly being made to believe that something is wrong with us because we have multiple sclerosis. Those of us using walking aids, wheelchairs and braces for some reason are seen as broken and a burden. We move much too slow, drop things way too easily and need help way too often with even the simplest of tasks for most people to bear. And those with MS who don’t need visible help…the bathroom issues, pain, emotional moments, and memory difficulties are viewed in the same way: as an inconvenience for others.

I can remember when I first started using a cane. I tried to hide it from people. I really did. I would wait until the last moment possible to get my cane in hand in order to walk across the parking lot of the grocery store. I would try to keep it as close to my right leg as possible thinking it would make it less noticeable. It didn’t, but I tried anyway.

The walker was much harder to hide. I felt like I was pushing around a truck with caution signs and flashing lights. “Look at me, here I come! Beep, beep, beep.”

The responses it invoked in people was not always comfortable to handle either. As soon as someone saw me with a walker, the questions began…too many questions, and ones that required exhausting explanations. I wasn’t ashamed of MS, I was simply tired of the constant “What’s wrong with you?” questions met with “I know what you need to do to make MS go away” responses.

Sometimes for me, the easiest response was lying and saying “It’s a football injury.” That was always met with a smile and a nod…even though I’m a girl. What? Sports injuries are more readily acceptable than a chronic illness?

Now that I use a wheelchair, it’s a bit harder to hide my walking difficulties but I’ve also gotten better at handling people’s stares, questions and comments. It still gets to me at times, but I’m okay with most people’s responses. I’ve come to understand that the negative and insensitive comments made by people simply show who they are as a person and has nothing to do with me.

One of the most important things I have learned is that multiple sclerosis has not left me broken. Cracked? Maybe…but I think I was cracked way before MS came along. If anything, it has opened my eyes to seeing the real me and to seeing how broken this world really is.

Yes, it takes me longer to do just about everything from checking the mail, to sweeping the floor, to getting out of bed. But even though I may not be fast at doing things, I can still get to where I’m going. It may take some creativity and some extra help, but I make it every time.

Ultimately, it would be wonderful to live in a world where disabilities took a back seat to who we are as a person. That day will probably never come, but regardless of what the world thinks, I want you to know that you are not broken or a burden.

You are a beautifully patched together work of art covered in scars yet filled with amazing resilience and strength. Your scars display an amazing roadmap of courage. You are not MS, a cane, a wheelchair, or even an emotional mess. You are incredibly you! You are important, needed, and wonderful just the way that you are…and don’t you ever forget it.


“Why Not You?

  • Today, many will awaken with a fresh sense of inspiration. Why not you?
  • Today, many will open their eyes to the beauty that surrounds them. Why not you?
  • Today, many will choose to leave the ghost of yesterday behind and seize the immeasurable power of today. Why not you?
  • Today, many will break through the barriers of the past by looking at the blessings of the present. Why not you?
  • Today, for many the burden of self doubt and insecurity will be lifted by the security and confidence of empowerment. Why not you?
  • Today, many will rise above their believed limitations and make contact with their powerful innate strength. Why not you?
  • Today, many will choose to live in such a manner that they will be a positive role model for their children. Why not you?
  • Today, many will choose to free themselves from the personal imprisonment of their bad habits. Why not you?
  • Today, many will choose to live free of conditions and rules governing their own happiness. Why not you?
  • Today, many will find abundance in simplicity. Why not you?
  • Today, many will be confronted by difficult moral choices and they will choose to do what is right instead of what is beneficial. Why not you?
  • Today, many will decide to no longer sit back with a victim mentality, but to take charge of their lives and make positive changes. Why not you?
  • Today, many will take the action necessary to make a difference. Why not you?
  • Today, many will make the commitment to be a better mother, father, son, daughter, student, teacher, worker, boss, brother, sister, & so much more. Why not you?

Today is a new day!

Many will seize this day.
Many will live it to the fullest.
Why not you?”

― Steve Maraboli

MS altered my life but it doesn’t define it

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I think all of us long for the day when multiple sclerosis no longer exists. When we wake up in the morning to find that not only is there a cure which has eradicated MS from the planet, but one that has reversed the damage already affecting hundreds of thousands of people worldwide.

I woke up this morning and sad to say, today wasn’t that day. So what do I do? Do I get angry because of the struggle? Do I allow depression to overtake me? Do I resent the fact that life is so very different than I ever planned for it to be? Or, do I choose to recognize that life will have problems no matter what I’m facing or where I’m at and that it’s necessary to find some good in the day if I am going to get through it. Can that even be done?

It’s not easy living with a chronic progressive illness as you already know. Days can be so unpredictable and the limitations we experience can become overwhelming and heartbreaking. No amount of ignoring it, hiding it, or pretending it isn’t there is going to make it all go away.

I can tell you that as a fact because I took a shower this morning but struggled to gather up enough strength just to dry myself off. At least I remembered to rinse all the shampoo out of my hair before getting out. But since I have gotten dressed I’ve been dragging just to get myself going. Why do I do that to myself? I know that showers are one of my enemies that I need to be cautious of because it increases the weakness throughout my body for at least an hour afterwards. Telling me to ignore my weakness or even to pretend it doesn’t exist at a time like that is preposterous. I need a nap not a judgement from a heartless uncaring individual.

The most important thing I could ever tell you in life is that you are much more than your weaknesses and strengths. You are so much more than MS. Don’t let it define you.

  1. Try to express gratitude for the simple things: a warm shower, buttered toast and the smell of rain. Practicing gratitude helps focus awareness on what is going well.
  2. Recognize anxiety triggers. An upcoming MRI scan or doctor’s appointment, even walking into a medical office may bring up feelings of dread. Sometimes just recognizing anxiety can help dissipate some of the nervous energy.
  3. If you don’t quite have your pre-MS stamina, find a new way to experience what you love. Do you enjoy gardening? Try floral arranging. If golfing brings you pleasure, don’t throw in towel if you can’t complete 18 holes; set up a putting green in the living room.
  4. Stay engaged in life activities. Don’t delay living life to the fullest and planning for more. Make vacation plans or enroll in a community art class.
  5. Get physical. If there is a universal remedy for any type of illness it’s “keep moving.” The body is made for movement; without it, muscles shrink and weakness sets in. Ask your healthcare provider for a referral to physical therapy to jump start your physical improvement program.
  6. Connect with others who are thriving in spite of an MS diagnosis. What are their coping strategies? Healthy support groups can be a place of refuge where your feelings can be validated by other people sharing a similar life experience.
  7. Have tough conversations. Talking about the future can be hard. Sometimes just getting the conversation going is a tough problem to overcome. But if you’re talking with your close circle of family and friends, that’s a great start.

There are times when we need to put on a brave face even when we don’t feel very brave. To recognize our worth, beyond our accomplishments and bank account balances. To look MS in the face and say “I’m not afraid of you and will not be defeated along my journey into the unknown with a chronic progressive illness.”

It’s important to embrace yourself as you are without the need for constant comparisons. Remember, it’s okay to take your guard down once in a while. Everyone needs a moment to be themselves, away from the judgements of the world and from those that don’t want to navigate around our limitations. A place to be authentic.

Authenticity is about being true to who you are. It’s about embracing your strengths, accepting your weaknesses, and living in alignment with your values. As Oscar Wilde famously said, “Be yourself; everyone else is already taken.” This quote sums up the essence of authenticity. It reminds me that our authenticity truly defines us.

As we navigate through life, let’s strive not only to understand the struggles that we face but also to appreciate the unique individual that we are. I challenge you to shift your thoughts to focus on what you do have rather than what you don’t. I think you’ll be surprised at the strength that rises up in you.

Real life with multiple sclerosis

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As a kid people would ask me, “what do you want to be when you grow up?” My answer would change often, but I would mostly respond with Teacher, Scientist, Minister or Musician. Never once did I even think of saying I want to be a disabled person living with a chronic illness. That was never even a thought.

But now, after multiple sclerosis has come around, life is different. I’m no longer the invincible, untouchable kid I once was. I grew up and life became real.

You may see pictures of me smiling, but the truth is my nights are also spent crying. That’s right, MS isn’t the smiling face you see in those brochures or the victorious athlete crossing the finish line in those advertisements. It’s everyday people like you and me facing weakness, cognitive difficulties, bladder problems, tremors and numb body parts.

  • I want the truth about MS to be seen by the world.
  • I want to hear about people with MS that are facing hell, yet making it.
  • I want to see the daily struggle MSers experience.
  • I want to know about the problems, the large and the small.
  • I want to meet the courageous, the brave, the unstoppable, the true warriors.
  • I want to hear how lives are being lived in spite of a horrible disease.
  • I want the world to know about the sleepless nights MSers face.
  • I want to hear about the embarrassing moments that are endured.
  • I want to know of the emotional chaos MSers go through every single day.

That’s real life with MS.

The world doesn’t need any more brochures covered in rainbows and smiles. Sure, we smile and enjoy life in spite of our disease, but there is a lot hidden behind our smiles that the world needs to know about.

To the advertisers, the drug companies, and the TV producers: Don’t cover up our struggle. We’ve been through too much, come through hell too many times, to have our battle scars hidden away just to make a few people more comfortable with the effects of MS. We aren’t comfortable so they shouldn’t be either.

To the doctors and nurses: remember that MS isn’t easy. That the things you say, the way you help, the care you give really does matter. That just a simple “I’m here to help you any way I can” matters. That listening to our tear filled emotional breakdown really does help. That even though you may feel helpless in coming up with a solution to ease our pain in the short time you see us, we face those same fears and feelings every moment of every day. Please be patient with us, your patients. Sometimes you are the only ones we talk to about what we are going through.

In a perfect world, MS wouldn’t exist. There would be no pain, fears, difficulties or struggles. But we live in a world filled with brokenness. It’s okay to cry, fall apart and actually feel afraid. That’s part of being human. That’s a part of living.

You are a warrior that may be weary in the fight, but even on your worst days you are still fighting. Never doubt, even for a minute, that you are special. You are amazingly special and incredibly important. Hold your head high today. You got this!

Dare to Be
When a new day begins, dare to smile gratefully.
When there is darkness, dare to be the first to shine a light.
When there is injustice, dare to be the first to condemn it.
When something seems difficult, dare to do it anyway.
When life seems to beat you down, dare to fight back.
When there seems to be no hope, dare to find some.
When you’re feeling tired, dare to keep going.
When times are tough, dare to be tougher.
When love hurts you, dare to love again.
When someone is hurting, dare to help them heal.
When another is lost, dare to help them find the way.
When a friend falls, dare to be the first to extend a hand.
When you cross paths with another, dare to make them smile.
When you feel great, dare to help someone else feel great too.
When the day has ended, dare to feel as you’ve done your best.
Dare to be the best you can –
At all times, Dare to be!
― Steve Maraboli

Creating a balanced MS Life

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I’ve always heard that balance in life is essential. I have a feeling the person who originally penned that thought didn’t have multiple sclerosis. I can no more balance my body on a flat surface than my life on a daily basis. I can’t even balance my check book due to the financial strain of living with a chronic illness. A balanced life with MS sounds more like an oxymoron than a reality.

How do you balance a life that is constantly changing and where the unexpected is more expected than the chance of rain in today’s weather forecast? Each day with MS is an irregular experience filled with obstacles and booby traps. How do you balance a life like that?

I gave up trying to plan my day in advance. Before MS, I was an organized, planned individual with my day planner in hand everywhere I went and a memory like an elephant. I remembered birthdays, holidays, anniversaries, and special occasions. I could remember anything I read, heard or saw. I even earned the nickname “Human Google” and was the go-to person when someone had a question.

Now, I have a hard time remembering what day it is, what I did yesterday and what the name of the main characters are in ‘Friends’. I burn pizza in the oven, lose my way driving to the grocery store and forget to wash the shampoo out of my hair while I’m in the shower. You have no idea how many times I have gotten out of the shower, dried myself off, then realized my hair was still sudsy. Even my no-fail plans to remember things don’t help me remember. I lose post-it notes, forget to set alarms and can’t comprehend my own text messages to myself.

It would be wonderful to know what a day will be like: to plan and be able to keep those plans, to go to parties without leaving early, to spend time with friends without falling asleep on them, to spring clean the house without regretting it later, or even to wash and detail the car without dropping the wash rag every few minutes.

Even though I have trouble doing some of the simplest of things in life, I try to do them anyway…and that’s what counts. I try to do as much as I can when I can and leave the rest to tomorrow.

Because of MS, I have learned that balance has nothing to do with ensuring equal time with work, fun, and family. It’s not about pleasing others or how much I can get done in a day. It’s about going with the flow and doing those things that are important to my wellness. Sometimes that means I spend the day focused on my own needs instead of work, family or fun. Sometimes that means I can mix it all up. But the important thing is to never give up when the unexpected happens.

It’s okay to end your day differently than you expected, leaving things still to be done. Don’t get frustrated because your house needs to be vacuumed and you don’t have the energy to do it at the moment. I don’t know of anyone with an un-vacuumed house that has stopped the world from existing thus ending civilization as we know it. Your day will go on and the vacuuming can wait for another day. The same goes for laundry.

Choose the important things in life to be your focus rather than the things of little importance. I’ve learned that many of the things that I thought were important really weren’t. Use your time wisely and know that YOU are what’s important, not what you can or cannot do.

And never forget, even the greatest gymnast in the world falls off the balance beam from time to time so don’t stress out when your emotions get the best of you and you become overwhelmed with everything happening around you. Just take a deep breath, get back up and keep trying. Don’t hold onto the stress that comes with all the daily unexpected moments. Instead, hold onto the smiles you find in the moment and keep going. You got this!