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Thriving in an able-bodied world

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Julie lived in a world that seemed to hum along at a pace she could never quite match. Her legs wobbled like a newborn foal’s, her eyes blurred the edges of everything she tried to see, and her hands trembled as if they were caught in a perpetual breeze. Her thoughts, too, sometimes slipped through her grasp, leaving her frustrated and quiet. But Julie had a spark — a stubborn, glowing ember of determination that refused to be snuffed out by the challenges she faced.

She lived in a small town where the sidewalks were uneven, the signs too small to read, and the people too busy to notice her struggle. Just getting around was a battlefield. The others around her raced ahead, their laughter echoing as Julie lagged behind, her cane tapping a slow rhythm against the concrete. Others sighed when she asked for help, and the information they gave her were a jumble of tiny, indecipherable lines. But Julie didn’t give up. She listened harder, memorizing what she couldn’t see, piecing together her day like a puzzle with missing edges.

At home, her family worried. They padded the sharp corners of their world, but they couldn’t pad the world outside. Julie saw their furrowed brows and heard their whispered fears. She hated being their burden. So, she taught herself tricks — little rebellions against her body’s betrayals. She’d count steps to navigate rooms, hum tunes to steady her shaking hands, and repeat words under her breath until they stuck in her foggy mind. It wasn’t perfect, but it was hers.

College was her dream, but the campus was a fortress of inaccessibility — lectures too fast, paths too narrow, doors too heavy. Julie didn’t flinch. She recorded classes, used a magnifying app on her phone, and leaned on a battered walker she’d nicknamed “Old Reliable.” She studied twice as long as her peers, her tremors smudging her notes, her vision blurring the screen. But she passed. Then she excelled.

She found allies in unexpected places. A friend, Mrs. Carter, noticed Julie squinting at books and quietly ordered large-print editions to give her. Another fiend, Sam, started walking with her to the store, carrying her bags without making a fuss. They didn’t pity her; they saw her. With their help, Julie clawed her way through to graduation. Her hands shook as she gripped her diploma, but her smile was steady.

Her work day was full of hurdles. The building was a maze of stairs, and the city buses didn’t wait for her halting gait. Workers stared or, worse, looked away. One day, the boss suggested she “just stay home” after she’d stumbled in the hall one too many times, spilling her paperwork. The words stung, but they also lit a fire. Julie decided she’d prove them wrong — not out of spite, but because she wanted to live as fiercely as anyone else.

The world didn’t bend for Julie, so she carved her own space in it. She started a blog — raw, funny, and unflinching — about living with disabilities in a world that wasn’t built for her. People listened. Her words spread, and soon she was speaking at events, her voice trembling but strong, her cane tapping a defiant beat. Companies called, asking her to consult on accessibility. She said yes, but only if they meant it — no half-measures, no pity projects.

Julie never stopped shaking, stumbling, or squinting. Her mind still wandered off mid-thought sometimes. But she turned every obstacle into a stepping stone. The able-bodied world didn’t make life easy for her, but Julie didn’t need it to. She made her own way — slow, messy, and magnificent. And in doing so, she didn’t just survive; she redefined what it meant to thrive.

I lost my brain

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Today I was jolted awake with the thought, “Oh, no…what day is it?” It was a sudden thought. One that I didn’t have time to fully process. My brain just couldn’t seem to work things out on its own. It was as if someone had poured sticky, gooey, hot molasses all over it. At least molasses would have been a valid excuse for the sluggishness I’m experiencing. Having an MS brain isn’t as easily explained.

On days like today when my brain just doesn’t seem to be able to process one single thought properly, I find myself working extra hard to make up for it. I pause while I’m talking to help as I’m searching for the right words to say, I take notes to help keep me on track, I even defer to others so they can finish what I’m trying to say. It’s amazing how extremely exhausting all that is. Thinking to think is hard work.

This morning, I can’t even do that much. This morning is an “I lost my brain” kind of morning.

I can only imagine the person who accidentally stumbles across this weird looking blob called my brain lying somewhere between the mailbox and the bathroom. It’s this strange looking creature full of scars and holes. None of which helps me out. They actually hinder everything I do.

Will they even know what they have found? I hope my brain returns soon because as of right now…all I can do is simply roll over and go back to bed.

I think my brain ran away because it was having to work too many hours and decided it needed a vacation. I wish it would have let me in on its plan though because I would have loved a vacation right about now. Anyone up for a trip to the caribbean?

Understanding my journey with Multiple Sclerosis

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I wear shoes most days. Although I still prefer my barefoot moments, but protecting my feet is way more important these days especially since I don’t have much feeling in them anymore.

Today, my everyday shoes are nice and clean, but that’s only because I don’t actually walk in them anymore. I just wear them as I wheel myself about in my powerchair. They keep me from stubbing my toes or banging my feet into the walls which happens quite often. I actually broke my big toe running into my work station in the garage where I keep all my tools. My hand was tired steering my chair and it seemed to have a mind of its own. Then… B A M.

When I was walking, my everyday shoes were a bit worn and scuffed. I had been many places with them on my feet. If they could talk they would tell of traveling around the world, going to the theatre, spending time with friends, out shopping and visiting beautiful landmarks. I felt unstoppable and on top of the world.

They would also tell of the day I went to the doctors office for tests because I was having a hard time walking, seeing and feeling parts of my face and body. That day was a day of tears, but not the good kind of tears. It was a day I wish I didn’t have to go through, but my shoes were with me and walked me down those sterile hallways at the hospital. They saw my pain and felt my discomfort as a diagnosis of multiple sclerosis was made. If only they could talk.

No one has ever walked in my shoes. I doubt they could fit in them even if they tried. I think my shoes are a little like Cinderella’s… you know, how out of everybody in the kingdom, no one had a foot her size or could fit into her lost shoe. It’s amazing how not even one person could wear her shoe. It was unique to her.

I’ve heard it said that you can’t know someone until you’ve walked a mile in their shoes. People like to throw out opinions of how I should live my life, but in actuality, they don’t know my journey. They haven’t lived my story. When you’ve lived my life only then can you judge me.

Don’t let someone judge your pain or your response to the difficulties in life while standing in their own shoes, not once putting them aside to walk in yours first. They can’t know your pain, sorrow, happiness, joy, depression, heartache, doubts, fears, and laughter. They can’ know your life if they aren’t walking in your shoes. Some people can’t handle the truth let alone tell it. Don’t judge me until you take a hard look in a mirror at yourself. Hopefully it doesn’t break. (Grin)

And besides I gave most of my shoes away when I discovered I could no longer wear them. My high heels… gone. Flip-flops… gone. Even my favorite tennis shoes… gone. All because I needed an AFO brace to help me walk on my own. That journey alone was heartbreaking.

We each have our own journey and our own shoes to wear. When you put your shoes on today, remember how far you’ve come and the miles you’ve been. Each scuff mark is a story of trying. Each smudge is a part of not giving up. Your journey isn’t over… it’s only just begun. So, let’s go forward Warriors.

“No” is not a bad word

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I woke up in tears yesterday. No reason. Nothing bad happened to me in the middle of the night. I didn’t wake up from a nightmare, my goldfish didn’t die and I wasn’t in a lot of unbearable pain. My emotions just went haywire all on their own. I hate when that happens. I take meds to help keep my emotions stabilized, but yesterday’s dose must have been a dud.

Multiple Sclerosis has this way of messing with a person’s emotions. Sometimes there’s a valid reason for the crazy mood swings we experience. Things like the fact that we are dealing with daily challenges and changes in life that sometimes become overwhelming and difficult to handle.

But there are actual times when our emotions get all out of whack for no reason other than the fact that the wiring in our brain is short circuiting and playing around with our emotions. That really happens. MS messes with my ability to walk, think, talk, see, and sometimes it seems to get bored doing all of that and decides to get its awful little hands on how I feel too. It seems nothing is off limits to this monster.

When a friend got to my house for her planned visit, I was sobbing into a sock. (Don’t judge. I didn’t have any tissue nearby so I used what I had. Besides, surprisingly enough socks actually work pretty good as tissues.) Just having her with me helped to calm my tears.

Sometimes someone assuring you that things are going to be okay really does help. Sometimes all we need is a hug, a kind word, a gentle touch, or a hand to hold. Although those things don’t change what’s happening in our life or restructure our brains, they comfort the heart.

I won’t lie to you, life with MS can be tough at times. I go through periods when I simply want to get away from it all…no distractions, no phone calls, no text messages, no people, no MS (now, that one I can’t seem to get away from), no anything. It’s at those times when I will curl up in my comfy overstuffed chair, turn my phone off and do absolutely nothing.

I know it seems impossible to be able to do nothing because even doing nothing is doing something, but somehow I manage to do it. Wait a minute, maybe I really am doing something when I think I’m doing nothing but since my brain scatters my thoughts I forget the something I was supposed to be doing which turns it into nothing. Now there’s a thought to ponder.

When I take the time to get away from the mess that is overtaking my life into a place of solitude, I come back better focused and my emotions calm down. Sometimes it’s takes just 5 minutes of being away to regroup my thoughts. Other times it’s more like 30 minutes, an hour or even a day. But that pause does something magical and helps me to tackle even the hardest of tasks.

I can remember the times when my workload would become intense at my job. The pressure, the stress…it would become overwhelming. When that happened, I would walk away from my desk and lock myself in a bathroom stall down the hall to just pause and breathe. That was the only place I knew I could truly be alone and get away from everyone and everything. Somehow time stood still for me in the bathroom.

I know that sounds weird to some people, but short breaks like that really help. We all need a place where we can get away from the craziness in life and be able to focus on things other than MS, medical bills and the to-do list that never seems to get done.

I sometimes went to my car at lunch time to be alone and would even take a nap to clear my mind. Don’t feel guilty stepping away to take a pause. Take the time you need even if that means telling someone “no.”

If I could reach through the screen to you, I’d hold your hand and remind you of how truly amazing you are. I’d listen to you talk about your struggles, your challenges, your fears, and remind you that no matter what you’re facing, you are strong enough… much stronger than you give yourself credit for. I’d cry with you, make you giggle and let you have my last cookie. (You know you’re special if I share my cookies with you.)

If today is a “cry in your oatmeal” kind of day… go ahead and cry. It’s okay to do that. Let it all out. Then dry your tears and remind yourself that you are a champion, a winner, a warrior. You may not feel like one, but you are and all warriors need a break. Sometimes just a little pause makes a world of difference.

Don’t stop trying to be the best that you can be regardless of MS or whatever else you may be facing. You are stronger than you think. I believe in you. Love yourself enough to set boundaries.

Life in Scleropolis

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In the heart of the bustling city of Scleropolis, where the sky often mirrored the spectrum of human emotions, lived a community of unique individuals, each bound by a common thread—multiple sclerosis. Here, the disease wasn’t a shadow lurking in the corners of life but a character in its narrative, shaping the city’s culture, architecture, and daily interactions.

Scleropolis was known for its adaptive architecture. Buildings featured ramps with gentle inclines, wide doorways, and floors covered in soft, durable materials to ease the journey of those with mobility challenges. The city center was a mosaic of vibrant colors, with public art installations that celebrated resilience and adaptability.

Our story follows three residents, each with their own tale intertwined with MS:

Mira, the artist, had her hands dance less freely with time, but her vision remained sharp. She pioneered a technique in painting, using eye-tracking technology to create breathtaking murals that adorned the city’s walls. Her latest piece, “The Dance of Nerves,” depicted the erratic yet beautiful patterns of nerve impulses, turning her personal battle into a public celebration of life’s unpredictability.

Leo, once a marathon runner, now navigated life with a cane but had found new purpose as the city’s chief urban planner. His firsthand experience with MS led him to design pathways and parks that not only catered to those with mobility aids but also encouraged community interaction. His project, “The Path of Unity,” was a trail that meandered through Scleropolis, where every bench was a communication hub, and every lamp post bore a plaque with stories of local heroes—many of whom had MS.

Elijah, the tech-guru, had turned his fatigue and cognitive challenges into motivation. He developed an app called “Sclero-Mate,” which not only helped manage medication schedules and symptoms but also connected users to support groups, local events, and even job opportunities tailored for those with fluctuating health conditions. His app became the lifeline for many, fostering a network of support where isolation once thrived.

In Scleropolis, every day was an unspoken festival of human spirit. The city held annual events like the “Walk and Roll,” where everyone, regardless of their mobility, participated in a parade through the city, showcasing inventions, art, and stories. Music filled the air, not just from the bands but from the city’s heartbeat, the collective resilience of its people.

One chilly morning, as the sun pierced through the fog, Mira, Leo, and Elijah met at the “Square of Beginnings,” where a new community center was to be unveiled. This center, a project they all contributed to, was designed to be a hub for creativity, health, and technology, embodying the ethos of Scleropolis.

As they stood there, watching the community gather, a sense of profound connection washed over them. Here, in Scleropolis, MS was not just about the struggles; it was about the stories, the adaptations, and the unyielding human spirit. The city was a testament to living not in spite of MS but with it, turning what many see as a limitation into a canvas of possibilities.

The narrative of Scleropolis was one of inspiration, reminding everyone that life, like the neurons in a human body, can find new pathways, new dances, and new songs to sing, even when the old ones fade.

A year of new beginnings

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There are resolutions we set all throughout the year: For a car or house payment to be made on time, for medications to be taken as prescribed, for being good to yourself… so many things. They are thought of more as commitments, but they are resolutions. When I looked it up in the dictionary, a resolutions is a promise to yourself to do or to not do something.

For me I work to make sure my bed is made every morning. It’s just something I have done since I was little and not making it kind of sets me on edge. I will make sure I do the work even when I’m feeling miserable. I also make sure I use my calendar to help me keep my finances in order, set schedules to make sure my nails get trimmed and my hair is cut, and also plan my house cleaning is small sections at a time. This way eventually everything gets cleaned no matter how immobile I become. It’s taken a lot of trial and error but eventually I have made a system that works for me.

Keeping a resolution involves several strategies to ensure you maintain motivation and commitment. If there is something you want to do better in 2025, here are some practical steps to help you get there.

1. Set Realistic Goals

Be Specific: Instead of “I want to lose weight,” say “I will lose 10 pounds in 3 months by exercising 3 times a week.”
Make it Attainable: Ensure your goals are within your capability to avoid discouragement.

2. Break It Down

Divide your resolution into smaller, manageable tasks. For example, if your resolution is to read more, set a goal to read 20 pages each night.

3. Plan and Schedule

Create a Timeline: Use a calendar or planner to schedule when you’ll work on your resolution.
Routine: Incorporate your new habit into your daily routine to make it a part of your life.

4. Track Your Progress

Use apps, journals, or visual charts to keep track of your progress. Seeing how far you’ve come can be motivating.

5. Accountability

Buddy System: Find a friend or family member with a similar goal or who can support you. Sharing your progress can increase commitment. Sometimes, telling others about your resolution can add an extra layer of accountability.

6. Reward Yourself

Set up small rewards for achieving milestones. These should be positive reinforcements like a movie night or a small treat, not counterproductive to your goal.

7. Be Flexible

Life happens, and sometimes you might slip. Don’t view this as a failure but as a part of the journey. Adjust your plan if necessary without giving up on the overall goal.

8. Understand Your Motivations

Keep reminding yourself why you set this resolution. Whether it’s for health, happiness, or personal growth, recalling your “why” can reignite your drive.

9. Learn from Setbacks

Instead of getting discouraged by setbacks, analyze what led to them and how you can avoid similar situations in the future.

10. Positive Reinforcement

Use positive affirmations or motivational quotes. Sometimes, a little self-talk can go a long way in keeping you on track.

11. Review and Adjust

Periodically review your progress. If something isn’t working, adjust your strategy rather than abandoning the resolution.

Remember, the key is consistency over perfection. Every day you stick to your resolution, even in small ways, counts towards building a new habit or achieving your goal. If you find yourself struggling, revisit your plan, and don’t hesitate to seek support from others. Happy New Year, and here’s to achieving your 2025 resolutions!

My body has limitations that aren’t negotiable

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Stating my reality is not an excuse. When I tell you I can’t do something or I’m in pain, it’s not an excuse. It’s not a matter of not being positive enough or not trying hard enough. It’s my reality. It’s the truth.

It’s important to understand that being realistic does NOT mean giving up on your dreams. If there is something you really passionately want to do, but it would be challenging, you still may be able to do it if you plan and prepare appropriately.

Consider each activity more by how much you want to do it, or what you are willing to lose or miss out on if you do it, rather than trying to do everything you used to do. You know your body’s limits, and what is or isn’t worth the fight.

Be conservative in your planning at first so you can learn what your limitations and capabilities really are. Be aware that they can change often but you do have every right to push your limits and try to do the things that are important to you. The key part is to figure out what that looks like for you. Sometimes what you think will be super easy can actually be some of the most difficult things you do.

I have gone from being the person who organizes events to someone who is unlikely to have the cognitive space to complete the plans and worse, may pull out at the last minute or even won’t be able to join in on the celebration. Sometimes I am not even strong enough to take a shower in order to make myself presentable. I typically manage a quick text, before sinking back into exhaustion. Holiday times are the worst experiences for me.

An observation I have made is that some of my friends and family have taken this personally and assume that my change in behavior is a reflection of my feelings for them, rather than a symptom of MS which can change from day to day.

I can be so quiet about my struggle that people around me can forget they I’m hurting. This doesn’t mean I’m not having difficulties, it simply means I don’t want to bother them and keep saying the same thing over and over again like a broken record. I just wish my struggle could be better understood by those around me and that my worth wasn’t defined by what I can or can’t do.

This kind of disconnect can cause loneliness to set in which is tough to get through. The magic of human connection, just being seen and heard through the MS struggle, can be a great relief to the loneliness. A real conversation with someone who has taken time to ask and then genuinely listen can be worth more than all the plans and parties combined.

Stay strong for who you are — a person deserving of love. You have so much to offer the world just by being your authentic self. Don’t let self-doubt hold you back from living a meaningful life and embracing moments of joy and connection with others.

I want you to know that you are not a burden. Don’t let those negative thoughts define you. Your challenges or limitations do not make you any less worthy or valuable. There are people who see your strength and resilience in the face of difficulties and are encouraged by it. Focus on surrounding yourself with people who appreciate you for who you are, imperfections and all. Be the reason they feel less like a burden and more like a blessing.

I want you to know there is light ahead, even in your darkest moments. You can get through this. Stay strong and keep your head held high. Happier days are coming!

Something bizarre happened to me

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Sometimes bizarre things happen with multiple sclerosis just because it exists. After all, we live with a strange, unpredictable disease that seems to have a mind of its own. At times I do things so strange that blaming it on MS isn’t even fair. Out of everything that has happened I blame my right hand for it all. My right hand is more of a paperweight than something of use anyway. Between tremors and weakness, it’s useless.

Some of the really strange things that happen need to be discussed more often so more people are aware of the challenges we face.  The strangest symptoms I’ve dealt with include:

  • Feeling as if an internal earthquake is taking place inside my body.
  • Experiencing ringing in my ears that sometimes is louder than a crowd at a ball game.
  • Feeling as if water is dripping on me when I’m no where near a faucet.
  • The unrelenting crushing feeling of the MS hug which is more like a tight girdle wrapped around the rib cage or a boa constrictor that won’t let go.
  • Feeling as if food is stuck in my throat when I haven’t eaten anything.
  • Involuntary movements of my body like me accidentally kicking the doctor.
  • Abnormal sensations on my skin such as burning, pins and needles, and even itching that nothing seems to be able to alleviate.
  • Feeling an electrical shock sensation through my arms and legs when I tilt my neck downward.
  • Feelings of dizziness and being off-balance which accompanies nausea.
  • Experiencing emotional incontinence which brings on uncontrollable laughter or tears.
  • Dealing with 3-D illusions like when an object is moving straight towards me but it appears to be swerving and shifting in its path.

I have also noticed a strange phenomenon since having MS. I don’t have a clue if it’s actually related to MS in any way as I’ve never heard it talked about, but I thought I would mention it so others who are dealing with the same things don’t think they are going crazy.

When I get something as simple as a pimple on my face (it’s not just for teenagers, you know), it will take a few months to fully heal instead of days as in times past. I’ve noticed the same thing happens with cuts too. I cut my finger in the kitchen and after a month it has healed aside for a slightly puffiness. I’m just glad my hand is numb and I can’t feel any pain that is going on inside. It’s healing at its own slow pace. Bizarrely slow, I have to say.

It could be due to some of the medications I take. I take things for muscle spasms, pain, dizziness, help with sleeping, and temors. A daily cocktail along with a slew of supplements and vitamins. It’s crazy because before MS I didn’t even take aspirin or cold medicine, now I have a rainbow collection of pills that would put a package of Skittles to shame.

When I was first diagnosed with MS I was taking a med called Rebif. I had to give myself inter-muscular shots 3 times a week, similar to those taking Copaxone. Those shots would bruise me so bad that over time I looked like I was being abused. I would have bruises on my thighs, arms and belly and they would take forever to heal. But the med would end up making me feel worse than MS actually did. I was medicating myself for the side effects of the medication. Such a vicious cycle that I’m glad ended when I stopped taking it. I would rather let MS progress naturally than feel miserable trying to medicate for a hopeful slower progression of MS.

Keeping a healthy diet helps to manage some issues, but it won’t rid the body of everything MS. I’m truly overjoyed for those that are able to fully manage MS by the things they eat and the supplements they take, but it’s important for people to understand that not everybody has such great results. Each of us is unique with our own cellular makeup and our own responses to diet and medications.

If you face slow wound healing, know that you aren’t alone. I’m sitting here with a puffy finger and a pimple on my chin to prove it happens.

It’s necessary for a person on a journey with MS to be able to recognize why coping with their illness is difficult. Knowing how crazy MS can be can help ease the burden, even if only for a little while. You got this.

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 know what it’s like to be chronically tired

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At the end of an exhausting day yesterday, I collapsed into my bed and tried to sleep. You know, that thing where you curl up, close your eyes, snore and drool? Unfortunately, it didn’t work out for me last night.

I spent the entire time awake through the yawns. I even tried counting sheep but they were no help. I think they actually went to sleep without me because at some point in the night I ran out of sheep to count. Now, here I am still awake at 5:30 AM watching the sun come up and wondering how I’m going to get through my already exhausting day.

Just so you know…

  • I know what it’s like to lie down in the bed at the end of the day only to watch the clock as the minutes tick by with each passing hour.
  • I know about those moments you ‘re about to drift off to sleep when your brain suddenly gets this weird burst of energy and decides to wake up and ponder everything ponderable.
  • I know the feeling of frustration and discouragement when MS seems to be winning the battle with sleep as muscle spasms, tremors and pain relentlessly pulse through your body.
  • I know what it’s like to not be able to sleep even with medications and supplements promoted to help you sleep.
  • I know what it’s like to drag yourself out of bed in the morning so exhausted, and with your muscles so tight, that you can’t move gracefully…or even at all.
  • I know how it feels to stumble into the kitchen to start your day when your entire body feels like you woke up with a hangover times ten.
  • I know how hard it is to put a smile on your face when you at greeted by a cheery “good morning” from your spouse, child or hungry dog.
  • I know what it’s like to think to yourself day in and day out, “If only I could sleep through the night, life would be so much better.”

I know what it’s like to be chronically tired.

I can’t promise you that you will ever feel completely rested when you get out of bed each morning even if you’ve slept through the night, but I can promise you that you will make it through your exhausting day… eventually, minute by minute, step by step.

Hang in there today. You’re doing great, even if you are too tired to see it. Living with multiple sclerosis is truly exhausting but you will make it through your day. Even though you don’t believe it, you will be stronger for it.

Welcome the day and hang in there moving little by little until you’re able to push through the pain, tremors, muscle weakness and even the negative thoughts that have a tendency to show up out of nowhere. It’s going to be a good day. Cheer up. I just know it.