The day my world tilted

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I once was able to do things others could do without any problems. I would hike through the woods just to clear my head when I needed a break from a busy life. I was able to juggle work plans, family life and weekend adventures without a second thought.

Then came the day my world tilted. It started small: a numbness in my face and hands that wouldn’t wake up, double vision that turned reading into a guessing game, and fatigue so heavy it felt like wearing a lead suit. Doctors confirmed what I feared — multiple sclerosis. The diagnosis hit like a storm, washing away the “normal” life I knew.

The early battles were brutal. Relapses came without warning. One day, I couldn’t walk without a cane; the next day, MS stole my strength to hold a coffee cup steady. Mornings became wars against an uncooperative body — legs that refused to cooperate, a brain fog that turned simple math into rocket science, and exhaustion that made even laughter feel impossible.

There were nights when tears soaked the pillow, when the question “Why me?” echoed unanswered. Friends drifted, work accommodations felt like defeat, and the mirror showed a stranger fighting to recognize my own reflection.

But I refused to let MS write the entire story. Small victories showed up. The first big win came quietly: discovering adaptation was one of the first. When life became too exhausting full-time, I pivoted to online writing about life with MS. The keyboard became a weapon of hope. Posting online honestly about the bad days, the ugly fatigue, and the frustrations helped me to come to terms with what was happening. But it always ended with one truth: “I’m still here, still fighting, still finding joy.”

I was giving people permission to rest without guilt or laugh because my story was a bit comical at times. Physical battles turned into creative ones.

When walking was no longer possible, I found adaptive cycling. With a recumbent bike I could quietly ride in the quiet of my home and it kept my muscles moving.

When my hands trembled too much for detailed art work, I switched to digital work using photoshop which helped against the gray days that showed up. Every finished piece of art was a banner: MS may limit me, but it doesn’t erase creativity.

Emotional victories stacked up too. I learned to say “no” without apology, to ask for help without shame, and to celebrate tiny wins like getting dressed without needing a nap afterward. MS taught me humility, patience, and the fierce value of real friends who stayed through the hard seasons. It revealed inner strength I never knew existed, the kind forged in fire and unbreakable.

Today I can stand with the help of technology using a sit to stand machine and it gives me great hope, not because the disease is gone, it’s still here unpredictable as ever, but because I’m proving life with MS isn’t about waiting for the storm to pass; it’s about learning to dance in the rain, even when the steps are uneven.

Most people don’t realize the battles continue. Some days are still heavy, still unfair. But the victories? They’re real, they’re accumulating, and they’re proof that courage isn’t the absence of fear or struggle. It’s showing up to fight another round, finding light in the cracks, and refusing to let MS define the whole story.

If you’re in the thick of your own MS battles right now, know this: every morning you open your eyes and keep going is a victory. Every time you adapt, rest, advocate, connect, or simply smile through tears… you win. You’re not just surviving, you’re rewriting what strength looks like.

You’ve got this. One day, one step, one breath at a time.

 

I’m needing help for the annual website costs of Positive Living With MS. The journey that led me here was anything but ordinary. Diagnosed with Primary Progressive MS in 2013, I often felt like a lone ship adrift in an ocean without landmarks or guides. But then came you—the readers who reached out through messages and comments. Your voices were the lifeline we clung to when waves of fatigue threatened to pull me under. 🚣‍♀️

And so began my quest: to share not just my personal battles with MS but also the victories, however small they might seem in the grand scheme of things. I write about days that start early and end late, filled with the monotony of pills and doctor’s appointments, punctuated by moments of sheer joy as we find laughter within our limitations. 😄

That’s why today, I stand before you—the generous souls who have made these pages their solace from pain—asking a simple favor: to keep the light on. Whether it’s $5 or $50, every bit counts towards keeping our beacon of positivity shining brightly and helping me answer the calls for support that come in at all hours. 💌

Your donation isn’t just money; it’s an investment—an assurance that those who need a word of encouragement won’t be left searching when darkness threatens to creep back into their rooms. And honestly, knowing you are out there rooting for us makes the fight worthwhile each morning I wake up with MS. 🌞

So let’s keep turning these pages together. Let’s continue laughing through tears and finding reasons in our own stories to believe that hope can be a daily visitor even when life gives more than its fair share of challenges. 🙏

With heartfelt gratitude, I thank you from the depths of my soul for considering this plea for help. Your support is not just financial; it’s a promise kept—a commitment to continue being there in moments of joy as much as we have been during heartaches. 💖

P.S: If what I’ve shared resonates with you, won’t you please share this story? Let’s bring more light into the lives of those navigating through dark times—just one click could make all the difference in our community’s journey to positive living! 🙏💛 #KeepTheLightOn

Show your support by going to this link

 

Thrive at Home This Holiday Season with MS

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Have you ever had this happen… a friend calls you up to invite you over for a get together. You would love to go but the challenge of a long drive, late hours, and lack of accessibility makes the decision for you. You politely decline but inside feel miserable because you realize how limiting your life has become.

There are times when having a disability is a great thing because you have an excuse to decline an invitation to a party you have no interest in going to or a reason to not help a friend move the furniture in their house. But it’s sad when you can’t join in on something you really want to be a part of.

Life changes with multiple sclerosis… which sucks. You find yourself making decisions based on how difficult it is to climb the stairs rather than on whether you have to pick up a gift and a platter of food on the way. The depression that weights on you can be hard to deal with and even overwhelming at times. It’s not an easy thing to come to terms with.

At this time of year it can become extra hard because you see people going out enjoying the holidays, spending time together shopping… doing all the able-bodied things people do that you are no longer capable of doing. It seems the winter months have this way of ushering in a sadness along with the cold and the snow. I’ve felt it myself at times. It can become overwhelming if you allow your thoughts to rule the day and slip into the “why me” places.

I know it’s hard, but try and find something good in the chaos. When you have to stay home, choose to have your own party in your PJ’s. Even if it’s a party all by yourself, have it anyway. Don’t let the fact that you can’t go somewhere get you down.

I have a party box filled with puzzles, colored pencils, coloring books, games, legos…all those creative things I played with as a kid. I pull it out and have fun. Strangely, it’s quite therapeutic and helps me to pass the time without turning the evening into a pity party. I like my PJ parties so much better.

So the next time you have to decline a friends invite, put on some festive PJ’s, make some hot cocoa and pull out your party box. I’ve grown to love these solo PJ parties. My box saved me from many a pity-party spirals, and now I’m off to mold a Play-Doh alien with googly eyes and spiky hair. Try it — Add scented candles, a favorite playlist, or a journal to doodle in. What’s in your party box? Share below or tag me on X — I can’t wait to hear!

Multiple Sclerosis flipped my life upside down

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Over the years, there have been things that have tried to steal my smile. I have dealt with things that no one should have to face and still be standing to tell about it, but here I am… smiling. I tell you that because I want you to understand that we all have a dysfunctional, messed up, broken past. No one has the perfect life. We all have a past, we all have hurts, we all have dirty laundry, add to that a diagnosis of multiple sclerosis and I’d say my life has been pretty messed up.

Many times we are so focused on the big things happening that we often miss the little ones that really make a difference, yet it’s those little ones that make up our days and truly make our lives go around. I think sometimes we get so busy looking for the perfect place to live, the perfect job, the perfect spouse, the perfect kids, the perfect health, that we often forget what really makes our lives enjoyable. It isn’t the big perfect anything. What brings smiles to our faces are the little things that get us through our days and most importantly, through the hard times.

Sometimes it’s just a phone call from a friend or a person holding the door open for you at a restaurant. Sometimes it’s having a child hand you a fist full of weeds or being able to put freshly washed sheets on the bed. Sometimes it’s quiet times in the morning or noisy times at dinner. Sometimes it’s things you can’t even explain because it’s just a feeling you get deep inside.

It seems the big things are what flip our world upside down and it’s the little things that turn it right side up again. Without the little things, I think the world will end as we know it. It’s the little things that hold everything together.

Take time today to enjoy the small moments that bring you joy, and just so you don’t forget about them, take time to write them down. This way you will have a forever memory of those special moments. Fill the pages of a blank book, a notebook, a memory book, a computer text document or what I like to call a gratitude journal, with your happy thoughts; those things that made your day extra special or brought a smile to your face.

This way, when you are having a terrible upside-down day, you can read through those memories and find a smile to set things right again. Trust me… it helps. When I pull mine out and begin to read, without fail, I find myself smiling and sometimes even laughing. Those smiles and laughs, those memories… they happen because of the little things.

Make the most of your day today, live in the moment, and never forget the little things that get you through the darkest of times.

When did society stop caring for the sick?

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My biggest pet peeve is people who say one thing and then either do the exact opposite or nothing at all and prove themself to be untrustworthy. I’m finding it harder and harder to believe people will do what they say they will do…unless they are getting a paycheck in return (and even then they are not always trustworthy).

It’s sad really. As my health declines, my circle of friends have decreased with it. It seems that happens to everyone I talk to when it comes to living with a chronic illness. It’s easy to commit to helping someone for a month or two, but anything longer than that you become a burden to them and they find other things to take up their time.

When did society stop caring for the sick? It’s easy for someone to post a status online saying how much they care about others or share a cute picture of cats as well as ones of a beautiful flower garden to say they care, but to actually get their hands dirty and physically do something is waining. You just don’t see that happening much anymore.

People seem to want the recognition by the masses. They want the press coverage and plaques of achievement hanging on their wall to show off their accomplishments and prove that they care for others. I’m just sitting here at home needing my trash taken out and can offer a hug in return. Not much. But a hug will last much longer than any 15 minutes of fame. After all, a hug is eternal.

I am pretty good at faking being okay for a few hours if someone were to stop by to visit or I needed to go to the store. Make-up and hairspray does wonders. But come live with me for just a day and you will see how tough life with MS actually is.

Don’t just assume because I’m silent, that I’m okay. Most of the time I get tired of always asking people for help and getting excuses in return. That’s why I simply quit asking. Sure, you can fault me for that. I should be more persistent in voicing my needs. But the flip side to that is when I am persistent, I get a defensive response that basically becomes an “I’m sorry I can’t help you today, I’m busy” reply.

My advice: Hang onto those that have proven their word time and time again. Shower them with thanks and gratitude as often as you can so they know that their work and help is needed, valued and appreciated. Get creative and come up with a back-up plan for all the other people that disappoint you.

You might think you aren’t hurting enough. That there are people worse off than you and have been through more struggles. You may even think your story isn’t significant enough when you compare it to others and then the thought comes to your mind that people will think you are just seeking attention.

There is no measurement for pain, hurt and loneliness. No matter where you are in your story or what it looks like, it means something. Your pain is important because it’s yours. Your story can help other people continue their stories as well. Yes, all pain is different but there are things that we all share when the darkness comes and we feel hopeless.

At times you may even find yourself in a place where your thoughts fight back at you more viciously than they ever did before. Where you think and feel too much and just want to be numb to it all and left alone. 

I want you to know that you are valued.
You are important.
You exist.
You breathe.
You love.
You fight.
You hurt.
You feel.
And because of everything, because you are here in this world, you matter.

Never let other people’s actions keep you from knowing how amazingly incredible you really are. You truly are an beautiful person and not a burden. You may be living with an incurable, unrelenting, horrible disease, but you are AWESOME!

Oh, it can’t be that bad

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These past few months for me have been terribly difficult. I think I have experienced every emotion imaginable. I have cried more than usual, lost my temper for seemingly stupid and even unknown reasons, and become more withdrawn than I ever thought possible simply because my body and brain won’t cooperate.

I can literally feel the changes happening in my life, so much so that if I allow my thoughts to linger on my increasing weakness and struggles, it scares the crap out of me. (That’s just me being honest.)

It’s hard to talk with people about those fears and the crazy emotions I deal with mainly because, 9 times out of 10, I am met with “Oh, it can’t be that bad” or “You just need to think more positively.” I find it to be exhausting trying to explain progressive MS to people who aren’t willing to actually listen.

Here are a few things I wish more people would try harder to understand about life with multiple sclerosis:

1. There is no cure

No matter what you read online or hear people say, there’s nothing that has been proven to eradicate the disease from a person’s body aside from a miracle. There are symptom management techniques through supplements and diet and medications that work to slow the progression down, but that’s not a cure.

2. My symptoms are unpredictable

One minute I may be doing well managing the pain, weakness, sluggish thought processes, and vision difficulties. The next minute I may need to climb into bed and be unable to move for hours. I am not being lazy. I’m taking the rest my body needs in order to function. You have to remember, it’s fighting every second of every day just to survive.

3. Things will get worse

I know you think that’s not being positive enough, but no amount of not talking about the truth will help others (or even myself) come to terms with my reality. MS is progressive. That means that as time passes, symptoms will build and my life will become more difficult. I need to prepare for the possibilities of tough times so I’m not caught off guard when they happen. Help me to not allow my difficulties to be the only thing I focus on, but allow me the space needed to face the truth.

4. I need help

Just because I don’t ask for help every time I do something doesn’t mean I don’t need it. From my perspective, I see the burden I have become on others and know that in the future it will be an even greater need. I also know that I can’t give back like I could in times past. Those thoughts weight heavy on me at times. Regardless, never stop asking if you can help. Just the asking makes each day better because it shows me you care.

5. Please invite me

I know I am limited in the places I can go because I have to ensure accessibility and that it’s not too late or I’m not too tired, but please don’t decide for me if I can join you for a time out of the house. You may hear no more times than yes, but I feel included when you ask.

6. Little things matter

I know it may sound silly, but a text asking how I’m doing or just to say “thinking of you” makes any day brighter. So does picking up the mail, dropping off a meal, doing a load of laundry, taking out the trash or just sitting for a chat. Those things matter more than you will ever know.

7. Don’t get offended

I have a brain that can’t keep information in order. If I don’t remember a special date, have trouble putting words together into coherent sentences or I’m not engaged in a conversation, don’t hold it against me. Most of the time it’s difficult to keep things organized in my head. Even with lots of notes and reminders I confuse things.

Living with a urostomy and MS

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I’ve been having trouble functioning due to the kidney stones I am dealing with. The one I passed last month was over 19mm in size. That’s a monster. As you know I had my bladder surgically removed due to the bladder issues I was having with my suprapubic catheter (SPC). With multiple sclerosis most people do well using a SPC but I now have a stoma that helps me to empty my urine. It’s called a urostomy.

It gives me control of my makeshift bladder which is a urine pouch that I attach to my stoma at my stomach area. I empty it myself when it gets full just as you empty your bladder throughout the day when you go to the bathroom. And at night I can attach a larger night bag so I don’t disrupt my sleep needing to empty it.

Thankfully the pouch fits inside my jeans or whatever clothing I may be wearing so people don’t even know it’s there. My kidney’s are still functioning just routing my urine to an external pouch that I change about every 3-4 days.

I didn’t know my kidney’s could pass stones via my stoma like the monster I did pass. But at the moment my recent CT scam shows that I have a stone that is blocking urine from passing in my right kidney. Because of it my kidney is inflamed which isn’t good. I see my urologist on the 10th. I was hoping he could see me sooner.

But in the meantime I’m taking pain pills to help curb the pain. I’m exhausted just writing this. I also have a temperature that I recently got under control. It’s now 102° but manageable with antibiotics and Tylenol.

I’m thankful that I had my bladder removed, it has been a great help to me in dealing with wetting myself as I did before. The only problem I have now is when my pouch has a leak from where it attaches to me, which doesn’t happen often.

I don’t have to time my bladder to my life like I did daily before. I have an empty water bottle in my van if I need to unexpectedly empty my bladder which really helps. Just if you ride with me and see that it’s full, know that it’s not a Mountain Dew. (grin)

I also have a birthday coming up and hope anyone that can help me to cover the cost of my new powerchair will help. If everyone gave $20 that would help out tremendously. Thank you so much for your help.

____________________

Fundraiser for Penelope’s New Powerchair

Give at GoFundMe
Give at Positive Living w/MS

I can’t get any air

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I almost choked on my own saliva Monday. It was a scary experience. I was sitting on the couch listening to some music and just swallowed. Nothing unusual. Just a simple swallow, but it turned out to be a truly terrible moment.

When I swallowed it seemed to go down the wrong way then I couldn’t get my throat muscles to cooperate. I was unable to catch my breath in the process. A few minutes went by as I struggled to breathe. I leaned forward, raise my arms hoping it would help, tried to massage my throat even turned my small fan on sitting beside my seat but my throat was spasming and nothing seemed to work in resolving the issue. I felt like I was chocking.

By the time I was able to catch my breath I had tears streaming down my face and I was weakly coughing in an attempt to clear my throat. My throat was still spasming. I felt hopeless. I was unable to speak for at least 30 minutes. All I could do was pray, cry and hope for a clear airway to stay.

Those are the times I truly dread and most people don’t even talk about them. I have yet to find a solution aside from making sure I’m sitting up, not reclining. Reclining seems to make it worse. I’m thankful those times don’t happen often but they do happen enough to warrant concern.

I want you to know that you aren’t alone in the struggle. Of course there are countless other struggles we face on a daily basis but all can be overcome with a little bit of patience and hard work. Don’t lose heart when they happen.

Today I’m breathing better and believing for a good day ahead. Believing the same for you too. It’s going to be a good day!

I wake up each morning ready for a nap

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I can remember a time in my life when I would stay awake for days just because I could. I pulled all-nighters at least twice a week for no real reason using the time to spend with friends, hang out at Steak ‘n Shake (the only restaurant in town open all night), and watch reruns of Doctor Who. Life was simple then.

I think sleep is paying me back now for all those hours we missed together. I find myself waking up in the morning ready to take a nap, and then when I do nap, I’m ready for another nap as soon as I get up from that one. It’s a weird and crazy cycle…sleeping to sleep.

As a kid I was always told we needed at least 8 hours of productive sleep. Lately, I’m lucky to get 8 hours productive awake time. I have been known to fall asleep in some of the oddest places too: at the dinner table as my head slowly drops into my plate of food (I haven’t done that in a while though), at the bookstore as I’m chillin’ in my chair skimming through a book, and even on the toilet just doing…well, you know.

My eyes will get heavy and I find myself thinking, “I just need to shut my eyes for a second.” But as soon as they shut I am instantly transported to another world. It’s a wonderful world, a place where multiple sclerosis doesn’t exist and anything can happen. I have been known to fly and have even tiptoed throughout the tulips and danced with leprechauns. One day I actually discovered I could dance better than Michael Jackson. Crazy, huh? Especially since I can’t even walk.

The only strange thing is that I can’t stay in that place for long. That’s why my life has become a continual daily life of nap, nap, nap with no sleep, sleep, sleep. I’ve been visiting there quite a bit lately; this land of nap. Maybe you have too.

And don’t feel bad if you are experiencing the opposite and can’t fall asleep no matter how hard you try. That can be just as miserable, but in a different way. Wow, a life with MS is as unpredictable as the weather. Sleep, no sleep…Ugh!

Just remember to be good to yourself through it all. Yes, you are that important.

I think my bed is calling to me. I can actually hear it humming my favorite song…Zzzzzzz. Me and sleep, sleep and me, we have become the best of friends.

MS takes the simple out of life

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Most people don’t have to think about the things they are doing in life like answering the door when an unexpected visitor arrives until something like multiple sclerosis comes along and messes with our ability to do those things. Sure, we have to juggle things around in order to fit the sudden changes into our day and most of the time those shifts are not so simple to make. It’s that way with just about everything I do.

I’ve never been a big fan of running errands. Who would have thought the mundane chores of grocery shopping, going to the bank or the post office, and even picking up lunch could be so daunting. For me, in order to run errands, the timing has to be planned perfectly to ensure I have the energy for the remainder of my day. Not planning can end in disaster…meaning, can end in me vegging on the couch for hours just to regain enough strength to help me cope with the rest of my day. Some errands can set me back days…not just hours.

I have to think about doing things more than people should. For example, take the act of walking. That may seem like a strange thing to have to think about, but when I stand up to try and walk, I have to make sure I have the proper supports around me to keep from falling down. Then I have to concentrate on each step, movement, leg shift and foot lift. It takes GREAT effort and tremendous thought to do something as simple as walking and sometimes I don’t have the strength to do it. My muscles turn to jello and won’t allow it.

If I need something in the kitchen, I can’t just jump up and get it. If I drop something on the floor, many times that item will remain where it landed until I have the strength to reach down and pick it up. By the way, that can mean it will remain on the floor for days. If someone comes to the front door, it takes so much energy to transfer to my wheelchair and make my way to the door only to find out it’s a solicitor wanting me to try their restaurant take-out service, that’s why most of the time I just don’t answer it.

When MS comes into our lives, the things most people take for granted become something we are grateful to still be able to do. We know that one day everything will change, the unexpected will happen, life will shift and what’s simple will no longer be simple. No amount of planning prepares someone mentally for those kinds of changes.

If you find yourself frustrated because you need to fill up your gas tank on your way to work today or because you need to pick up some cheese for tomorrow’s spaghetti dinner, stop and remind yourself that you are still able to do those things…and be grateful for the little things no matter the inconvenience.

Don’t take anything you are still able to do for granted. Those things may take extra time to work through or you may have to get creative in the way you do them, but you will have accomplished something greater than great when you do complete it. You will have done something some people are no longer able to do.

Don’t give up, don’t give in and keep going while you can. That’s what makes you an MS Warrior. Plan B, C, D, and sometimes even Z, ZZ, and ZZZ have become a part of my everyday life and I’m okay with that. I will keep trying, keep going, and shift with the changes until I no longer can.

An open letter – from someone living with MS

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To whom it may concern:

There is an entire world filled with people who don’t understand multiple sclerosis. I know since you don’t live with the disease yourself it is hard to comprehend, but I hope what I have to say will help open your eyes and heart to what life is really like for me…hopefully giving you insight and understanding into the life of someone living with MS.

First off, I would like to say that multiple sclerosis is real, it hurts, it is full of challenges and struggles, and if you haven’t figured it out yet, it is invisible to a majority of the population since the destruction takes place inside the body. The effects are seen in other ways as I walk, talk and go through my day with disabling symptoms, but if you were able to see inside my body, you wouldn’t judge me so quickly. My insides are a wreck and filled with chaos.

Sure, I wear a smile much of the time, but that doesn’t mean the disease isn’t there. It just means I’m doing a pretty good job at covering it up. You see the mask I wear, but let me explain what happens day in and day out. I get angry, fearful, weepy and scared. Lingering in the back of my mind is the fact that one day my future will be drastically different than it is today. You see, MS is progressive. That means that although today I may be moving around okay, tomorrow I may not. It may take a year or 20 years, but my life is changing every day.

Please know that it hurts when you so casually decide you know what’s best for me. MS has affected every part of my life, but that doesn’t mean it’s made me incapable of making decisions. Don’t exclude me from things just because you think I wouldn’t want to be a part or because you think it would be too hard for me to do. Let me make that decision. It hurts more to be left out than to give a response of “no thank you” to an invitation. I would much rather be given the option. Please don’t stop inviting me or including me even if you get a lot of “No” replies.

Another thing that really hurts is when you tell me you know how I feel. Really? You understand the fatigue that never goes away, the numbness in my body, the pain, the bladder problems, the vision struggles? I have major damage in my brain and spine causing continued chaos throughout my body, and you want to try and compare your flu symptoms to my MS? Please don’t do that. Unless you are living with MS yourself, don’t even try and tell me you know how I feel. Support me, help me, console me if that’s needed, but don’t make the assumption that you get it.

Then there’s the problem I have of you always trying to fix me as if I’m broken. I’m not broken. I’m simply living with a chronic incurable disease. That means it’s not going away unless a cure is found…and no, there isn’t a cure yet. All those supposed cures you read about online, they aren’t cures. They are either symptom management techniques, wishful thinking, or money making schemes. Nothing has been found to completely remove MS from someone’s life. Nothing aside from a miracle! So your great Aunt Sue’s cousin’s friend who was cured using a combination of bumble bees, tin foil and baking soda…I’m not interested in the recipe. Accept me for who I am. I’m thankful you care, but your remedies cause me more weariness than help.

Something else I’d like to say…for some reason you have this need to ask me if I’m feeling better every time you see me. As I’ve said before, MS is progressive so that question truly has no answer. If I express a concern that I am having due to MS or talk about a new symptoms I am facing, responding by saying “get over it” doesn’t help in any way.

I’ve always thought that to be a strange response. Get over what? Get over the pain? Get over the fear? Get over a chronic illness? What exactly am I to be getting over? How am I to get over something that I’m living with on a daily and minute-by-minute basis. It’s easy for people to come along and say “get over it” when they aren’t experiencing my challenges, but a person doesn’t just get over multiple sclerosis…they live with it.

Instead of always asking me if I’m feeling better, treat me like everyone else. There are more things to talk about in life than my having MS. I don’t want that to be the center of conversation every time we meet. I am more than my MS. I am still me and would much rather talk about gardening, traveling, architecture or the next movie coming out. Don’t ignore my struggle, but don’t make it a continual focus either.

Please know that I have my bad days and at times terrible, horrible really awful days. Getting out doesn’t make them better either. In actuality, going out has the potential of making them worse. Me doing more will not make my MS symptoms less. Yes, exercise is important, but it has to be done carefully.

That old saying “no pain, no gain” will not work for me. If I get to the point of pain, I have pushed too far and my body is going to rebel for days, if not weeks. I have to do everything carefully and with great planning. Sometimes my bad days happen within minutes of a good moment. That’s just how rebellious my body can be. So please don’t tell me I need to get out more or I just need to lose weight to feel better. That’s not the cause of my struggle and it is not the answer to my pain.

So, the next time you decide you want to judge me for my bad days, bad moods or even my bad responses to your insensitivity, keep these things in mind…

I am the same person I was before my MS diagnosis. I am intelligent, caring, full of fun, loving, ready to laugh at any given moment, and a great friend. I also have the potential to be angry, moody, and frustrated. All still part of who I am. I would like nothing more than for MS to be cured, but as of today that reality doesn’t exist. Please don’t look at my disability as if that’s all that I am. I am still me…MS and all. The only difference is that I need a lot more love, support, care and understanding. I would much rather have someone fighting alongside me than against me.

Signed,
An MS Warrior
(Penelope Conway, Positive Living with MS)

P.S. Please share this with your friends, family, co-workers, and neighbors. Multiple sclerosis awareness is needed all around the world.