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We are in a war against our bodies – this is multiple sclerosis

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There is something about having things left undone that sets me on edge. I don’t know why, I guess that’s just how I’m wired. Because the temperature outside is dropping I needed to make sure the air in my van tires were properly set. The cold weather always decreases the pressure so air needs to be added. Like most people, I have a portable air pump so I don’t have to go to a gas station or a car mechanic to pump them up. The temperature dropped to below freezing last night so I had to make sure everything was going to be okay in the coming days.

I was glad I checked them out. I spent about 20 minutes adding air to each tire. I checked my riding mower tires too while I was at it, so all my tires are good to go now. I won’t know it my van tires are properly filled until I go down the road. The sensors in the van will let me know if the air is still too low. Hopefully I filled them up without needing a bit more air.

There are a few more jobs I need to do around the house in the coming days. My to-do list has become filled with an unending list of must-do items. I try my best to tackle my list, but lately it has gotten bigger than I can manage. I’m going to have to get some help if I don’t want the coming winter to overtake me.

Dealing with all the things I need to do around the house doesn’t put MS on hold. When multiple sclerosis stepped into my life years ago and it made a jumbled up mess of my bodies makeup. My internal wiring has been a crazy tangled up mess since then. So the mess outside of my body makes an added mess to my insides as well. Either I’m battling a myline munching monster or it’s life itself complicating everything around me.

It feels as if I’m living in a virtual Trouble board game merged with Operation… My Pop-O-Matic die roller is broken and I have been sent back to start more times than warranted. My Operation doctor is still working to determine which nerves have been cut. Is it the train of thought nerve? The vision nerve? The speech nerve? The funny bone nerve? No one knows.

MS short circuits my bodies ability to properly function and creates chaos where there isn’t any chaos to begin with. Nothing ever seems to go as I want it to. My body seems to have a mind of its own and has adventures without me. I tell it to walk and it rolls around on the floor. I tell it to run and it sits down laughing at me. I tell it to sleep and it throws a temper tantrum. It just doesn’t seem to listen to anything I say. It’s worse than a rebellious teenager.

We are in a war, you and I. A war, not just against a broken pop-o-matic die roller or a faulty operation doctor. We are in a war against our bodies… if there is such a thing. There are so many things I used to be able to do that seem huge today and nearly impossible. Everything from laundry to running the dishwasher, from sorting mail to grocery shopping, from driving through traffic to maneuvering through crowds, they all seem extra hard, nearly impossible, and bigger than life.

You know what I have learned in this messy life we have? I have learned that it’s okay to have an unfinished to-do list. It’s okay to let the dishes sit alone in the dishwasher. It’s okay to not clean out the car, to slow down when I’m in a hurry, to enjoy a moment of quiet with just myself. Each minute is a gift we are given. We get to choose how we use them.

Take more care in how you use your minutes. They are precious and shouldn’t be wasted with worries and frustrations. If that means things don’t get done… oh well.

Use your minutes with care. Do something you love, something just for you, something that will give you a chance to simply enjoy the day. You are amazing and deserve some time just for you.

Don’t let multiple sclerosis hold you back

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I started a new home improvement project. My garage door needs new weatherstripping across the top and sides of the door. I researched the products I need and decided the cost is actually fairly low if I do it myself so I bought all the wood and screws needed.

Yesterday I started the first step in replacing the old weatherstripping. I bought four 1×3 boards that needed to be cut down to 1×2’s. I discovered in order to have a board exactly 1×2 I would have to cut them down myself. I laid the boards out in my backyard so I could use my circular saw to cut them down. I don’t have a fancy setup to hold the boards steady while I cut.

The bad thing is that my legs have problems maintaining my balance even while sitting. I set up a folding chair for me to sit in while I cut the boards, but I had trouble keeping the cut straight while I was working to balance myself. While I used the saw my legs kept slipping and I came close multiple times to falling over. My leg muscles are just very, very weak.

It was such a struggle. I was able to cut the 8 foot long boards about 12 inches at a time. I had to keep shifting the board down to keep on cutting the full length of the board. It took me so much longer than planned. After a pile of sawdust formed I had finished cutting them down. I felt so proud of myself. Next week I’m going to paint them white and a friend is going to come over to help me hang them around the garage door.

So far I feel so accomplished. I know there’s still a lot to do, but for me cutting the boards was the hardest part. I still have to pull the old boards off and sand the old wood before I can attached the new wood in the opening.

I think I make things hard for myself but I feel so good knowing that I am able to accomplish something myself. That’s the stubborn part of me. I have saved over $300 that I don’t have because I’m doing it myself. Multiple sclerosis has made it difficult, but not impossible. It’s almost like I have a challenge set before me and I have to prove to myself that I’m still capable. If I can’t do it, I will throw my hands up and surrender but I want to at least try before I give up.

Giving up like that does happen but so far I have been able to push through many challenges that MS has brought along. Falling over is not something I want to happen. It seems like such a small thing but it’s actually quite big. The time it takes for me to complete the project will take longer than it would have if I was stronger, but even the time delay is not going to hold me back.

Some of the most difficult things for me is doing anything that requires a steady hand. I can guarantee you that in your trying you are going to feel like a failure at some point…maybe even more than once or twice. But choose to be like Thomas Edison at those times. During his work on the lightbulb, he said “I have not failed 10,000 times. I have not failed once. I have succeeded in proving that those 10,000 ways will not work. When I have eliminated the ways that will not work, I will find the way that will work.”

You will find a way that works too! Whether you find a better way to improve your life or a new way to do something that others tell you (or even you tell yourself) can’t be done, keep trying. Don’t give up on living. Don’t give up trying. Don’t give up no matter how impossible or difficult things may get. Just don’t give up. You will find a way that works for you.

MS symptoms are more faithful than friends

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People thought my life was amazing. That I had it all: talent, creativity, love, a great job, a sense of humor, everything I could wish for, but you know, I realized early on that the fairy tale life wasn’t what I was looking for. I knew it wasn’t what it was cracked up to be and it wasn’t my dream… and that was okay with me.

But then multiple sclerosis showed up to try and put a kink in it all, it tried its best to steal my life, my joy, and any hope I had for my future. At first I have to say it did a pretty good job at it. It sent me into a tailspin and overwhelmed me at every turn I made.

I found out fairly quickly that it’s okay to be scared. It’s okay to cry, to be sad, to fall apart, and to break down. You’re only human. You’re real and facing something realer than real. MS is not something we can just ignore or wish away. We have to face it and look at all our options. Some may be unreachable or too expensive but through a lot of research and reaching out to different people, organizations and foundations, there’s a way to get help if you stay persistent. You just can’t give up hope.

Doctors scared me with all the unknown that was happening in my body and how much was still unclear about a disease that has been around for hundreds of years. Not until recently has any actual new info been discovered and realized about MS. For years many people have suffered and still deal from symptoms that newly diagnosed patients  are able to manage with a simple treatment or supplement. Still no cure… but there’s hope.

You never know when a symptom will show up and decide to hang out with you. Sometimes they are more faithful than your friends. Many people stop coming around when the going gets tough. Friends come and go. It happens all the time. It’s not because of you, you didn’t do anything to warrant that kind of treatment. You deserve so much better, so much more.

You don’t have to try to be strong when you have no strength to hold onto. It may take some time to make sense of all the confusing thoughts you have and all that you have experienced, but don’t ever stop fighting.

Statistics show my life will be shorter because of MS, but there is no knowing what tomorrow may bring or what my life expectancy will actually be. MS hasn’t put a period at the end of anything in my life. I’m believing for a comma. A comma means there’s a pause ahead with more to come, more to tell, and so on, and on, and on.

Enjoy the life you have. There is still beauty in the world. Look really close and you will see it in the most unlikely of places. Wipe away those tears and hold your head high today. You have a future filled with amazing possibilities.

Driving with hand controls

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As many of you know, eight years ago I came close to giving up on ever driving again. I had trouble managing the gas and brake pedals with my numb legs and feet. One time I accidentally pressed the gas pedal when I was trying to stop. That was a scary moment. I came close to rear-ending a car going full speed. Yikes!

My occupational therapist suggested I get hand controls. She even set up an appointment for me to learn how to drive with them. It was a bit awkward at first. I had to think way too hard to do what I had already been able to do with my feet. Which lever do I use to brake? Which one for the gas? How do I steer? Can any car be set up with hand controls? Will I have to be retested for my drivers license? Will insurance help with the costs?

Too many questions… do I really want to make that big of a change?

After considering all my options, I decided to make the change. I wanted freedom to come and go without requiring help from others just to go to the store or to an appointment. I didn’t want to become a burden to those closest to me.

I had already run into disappointments waiting on people to take me to appointments and not showing up as promised. Many times I had to cancel the appointment all because I was waiting on someone else to take me.

Using hand controls to drive sounds complicated but it actually makes driving possible.  There are a range of hand controls to pick from. Different controls based on a persons specific impairment.

I was able to purchase a conversion van set up for a wheelchair driver with hand controls. It has given me the ability to go to the store, appointments and other places giving me much more independence than I thought I could ever have.

 

What people with MS would love to hear

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It’s heartbreaking to hear from a friend or loved one that they have been diagnosed with multiple sclerosis. If upon learning the news you go through a range of emotions—from shock to sadness to anger to fear—well, then just imagine what your friend must be feeling themselves.

It’s only natural when a loved one is going through a health struggle like MS, we want to support them in any way possible. We want to be a physical presence in their life to assist them, but still need to respect their personal boundaries as they navigate a major change in their life. Sometimes, the best thing we can do is send a thoughtful note with some comforting words to let them know that we care.

But even then, it can often be difficult to find the right words. I’ve put together a list of items that someone living with MS would love to hear from a friend or loved one…

  1. “I’m here for you”

    Show up for your loved one and remain by their side as they go through the crazy MS process. And if you say these words, make sure you mean them, and support them through thick and thin.

  2. “Thinking of you”

    I’m thinking and praying for you… and I really mean it!

    Hearing that your wellbeing is on someone’s mind can be a great comfort, and the act of praying may be very peaceful for you as well. If you or your loved one aren’t religious, it’s still helpful to hear someone is sending you good vibes daily.

  3. “Let’s have some fun”

    Tell a Joke… after all, it’s been said that laughter is the best medicine. Ask your friend for suggestions on renting a movie or watching a tv series that might be uplifting and humorous.

  4. “I care about you”

    I don’t know what to say, but I care about you and I’m here for you if you need to talk or just cry.

    Listening is sometimes the best thing you can do for someone with MS. Silence is actually ok. Sometimes those empty spaces allow both of you to collect your thoughts and emotions. Be sure to listen without judgment.

  5. “You are so beautiful”

    I’ve set up an appointment with the hairdresser to give you a new haircut and manicure.

    Feeling confident when dealing with physical challenges can be difficult at first. No matter what physical symptoms your loved one is experiencing, this is an opportunity for you to make sure their inner and outer beauty is recognized by letting them know that they are beautiful… even when in PJs and having messy hair.

  6. “What day works for a visit?”

    Call and ask when a good time to visit might be. Be mindful when you are visiting that people with MS can tire easily and several short visits might be best.

  7. “Let me help you with…”

    Ask if they need help with any particular tasks such as:
    Grocery shopping
    Cleaning the house
    Making a meal
    Laundry
    Picking up prescriptions

    Finding the time and energy to run errands can be a challenge. They may feel ashamed in asking for help with tasks even though it is needed. Show that you are sincere in your offer to help by making suggestions.

  8. “I love you”

    Send a note with a personal gift such as books, movies, word games, small mementos, or special personal care products. When nothing else feels right, these three simple, powerful words can mean the world. They might be just the thing your loved one needs to push through the day.

  9. “There are so many things to love about you”

    MS has a way of feeling all-encompassing. Those affected may feel like their identity revolves around being a patient. That is simply not true. Your loved one is so much more than someone who has MS. They could be a dog-lover, artist, parent… Help them focus on all their amazing traits that have nothing to do with their illness.

  10. “How are you doing?”

    You can be there for your loved one by asking them how they’re doing not just physically, but emotionally as well. Don’t be afraid to ask about their mental health. Sometimes physical symptoms are only one part of the puzzle when it comes to MS.

Life is crazy right now

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Sometimes life grabs us, takes hold and shakes us hard. We are left with our head spinning and we are desperately trying to just hang on. At those times we wish life would give us a break.

Life is crazy for me right now. I can’t keep up with everything going on. I am on day 3 of steroids with 2 more days to go. I have noticed a bit of energy returning which I so need but it can’t come quick enough. I’m trying to be watchful of the foods I eat because steroids have a tendency to bulk the body up. I don’t want that. In those moments, I have learned to give myself grace. I know I won’t make perfect choices, but some forward motion is enough.

When I’m exhausted and struggling to get up in the morning, I may not spend my time in deep thought but I know I still need to care for my body to ensure I can care for those around me. I have to let go of the guilt and shame that comes along with it.

I may not be able to write every day and pour out my heart how I want to, but it is life-giving and important to me to share with you, to walk together. So I’m finding little slices of time to connect with you, usually between naps.

It’s completely acceptable for the laundry to go unfolded so I can spend a few precious moments with friends and family. It’s okay if I have to rely on eating out a bit more. I’m doing my best with what I have right now, but that doesn’t mean I need to spend hours and hours on Facebook or X.

Maybe you’re dealing with your own health issues that scares you with each passing moment. Maybe you’re swamped, unbearably busy at work, or dealing with intense financial stress. In this crazy season, hold yourself to a gracious standard of love. Let the little things go.

Whatever it is, focus on what matters and what is non-negotiable. That’s your baseline. Let everything else be drenched in grace and give yourself a break.

We’ll practice this together.

Do you see me?

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That’s it. I don’t think I can take any more. I have worked and worked and worked, yet, things seem to just keep going wrong. It used to not be like this, but now I’m the person they don’t see. I stare out my window into the world and I see them. So many lives oblivious to my pain, to my illness, to my struggle with multiple sclerosis. I wish to be seen, to be known and understood. I sit here in my house, alone and with my heart torn out. The sorrow is deep.

The masses see my wheelchair and so they should, but they don’t see me. I’m not invisible. I’m not broken. The loss of my mobility is crushing. It makes me long to shout out “Hey, I’m here, I’m alive, Look at me.” But all I can do is stare out the window.

I know I’ll never be the same. I know I’ll have to move on. But today it hurts too much. Today I need to just sit and stare out the window as I contemplate my life.

Today I feel numb. I feel anger. I feel sorrow. I feel confusion. I feel the loss of my active life that has been pulled into the darkness. The unpredictable waves of grief wash over me like a tidal wave. I hold onto my faith and hope for a better day tomorrow.

I know I need to let the grief happen even though it feels like I won’t survive it. How can something you can’t see hurt so badly? That’s the problem with MS. It’s not visible and it makes you feel alone.

I not only lost my mobility, I lost the joy of going places and taking part in the world around me. I lost being able to do as I please without a care in my heart to hold me back. I’ll never walk down the street to see my neighbor. I’ll never walk to the mailbox to get the mail. The loss is deep and wide like an ocean and I’m doing my best to tread water when you would expect me to swim.

It is in these times that I need to stop, take a step back, take a deep breath, and tell myself, “I’ve got this!” I need to hold my head up from my sorrow. And so I do. Now I sit on my couch and rest to recover from a time brought forth by my MS sorrow. I wish you could see me and enter the pain with me. I know I’m not the only one feeling this ache in their bones.

If we are honest for a moment… life isn’t easy. It can be really hard at times. But I want to encourage you, you can do hard things. We all walk through storms in this life: sickness, financial troubles, losing a job, losing a loved one, and more. It’s tragic and terrible, but even some of the most rewarding things in life can be hard… like running a marathon. Not to mention, even the little everyday things, like doing the dishes, having no gas in the car, running late, and spilled coffee, can be so hard and frustrating on days where everything seems to be going wrong. So how are you supposed deal with all of this?

Today I want to encourage you that the words you speak have the power to change your mindset. My mom always says “You can do hard things.” And in the midst of the hardship, remember you can do hard things and it too will pass.

Sometimes I think, what if I told myself words like, “you cannot do this, it is too scary.” Naturally, those are easier words to say but they don’t bring anything good to your life. Living with MS is hard, frustrating, scary, uncertain, chaotic, and depressing. What you are going through is hard. But you can do hard things, my friend.

I want to challenge you to be more aware of the words you are saying over yourself and others. Are they words of life or death? I want to challenge you to embrace this messy, hard life and face it head on. And just know, whether it is a moment of hardship or a season you are in, this too shall pass.

Conquer the MS Beast

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Earlier this week I tackled my plans to set up solar lights leading to my front door. Sounds easy, right? But I had lots of unforeseen problems. I gathered all the supplies needed to make the area beautiful but knew it would take a lot of time and patience to set everything up. The picture on this post shows what I did. I still need to get some plants for the area above the lights though. Right now it is a bunch of mulch but looks pretty even without any plants in it.

I had a few bags of white rocks to fill in the area around the lights but knew it wasn’t going to be easy to lay things out. I mapped out the light placement, dug up the area where they were going to be placed and laid down weed barrier to deter weeds from cropping up in the middle of the rocks.

One of my main issues while working was that I kept falling over due to my lack of trunk control. I couldn’t stay upright on the ground while I worked. It was challenging to keep still. I scraped my elbows and even my forehead once… ugh! Pulling myself up every time I fell over wasn’t as easy as it sounds. I ended up bruising my tailbone too as I inched my way back and forth across the sidewalk.

I feel accomplished with all the work that I got done. As I was working I kept thinking that bad things aren’t just happening to you and me… they’re happening everywhere. The way I see it, if I hadn’t gotten sick with MS, I would have never met you or had the opportunity to give you encouraging words to cheer you up.

MS challenges? Pfft, they’ve got nothing on me! I’m like a bulldozer, smashing through obstacles with sheer willpower. Nothing can extinguish the fire burning inside me to conquer the impossible. No matter how tough my MS life gets, I’m the kind of person who keeps pushing forward, defying the odds.

Setbacks will happen. I see them as temporary blips on my journey to greatness. Unleash your inner resilience to conquer whatever life throws your way. You have the power within you to create a life filled with strength, courage, and unwavering determination.

We are living in such dark times. I never dreamed of all the confusion, challenges and deception that is taking place around the world today. I had such high hopes for my future but I’m finding it harder to stay strong in the midst of the battle.

There are great things ahead. I really believe that. I refuse to throw in the towel no matter what life hurls at me or how bad my MS progression becomes. I’ve got an unstoppable determination to conquer the MS beast.

My multiple sclerosis decision

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After much thought, research and prayer, this year I made the decision to no longer use any MS therapy drugs to treat my MS. I have PPMS which in itself is difficult to manage, but from the beginning nothing has worked for me to help slow the progression. I remember using Rebif after diagnosis, then Tysabri, Rituximab (trial use), Aubagio, and my last was Ocrevus. All with intermittent use of Solumedrol when things got really bad because that was the only drug that would actually treat the inflammation that was occuring when MS is active.

Over all the hours sitting in the infusion center nothing has worked. I’m thankful that different meds work for Relapsing Remitting MS. Many people have been given a shot at holding off worsening progression. But the large costs involved with the different meds has gotten ridiculous. Thousands of dollars for one dose?!!

I talked with my neurologist at the beginning of the year of no longer using Ocrevus and she approved my choice. I will see her once a year to give updates but unless something really bad happens I won’t have to visit. I know a lot of people think that it’s a bad idea to do such a thing, but it’s my life and it’s how I want to live it.

My decision for stopping Ocrevus was because of how Ocrevus was fast tracked through trials to get FDA approval. The fast track part just didn’t sit well with me. We still don’t know the long term stats and even if they will be accurately recorded. I was uncomfortable with the cancer rate for people using it vs. the placebo… but there’s still no accurate data.

After Covid there were so many issues people were having with big Pharma and finding out all the get rich schemes that were going on around the world. I didn’t like it one bit. I never got the “clot” shot and am so glad of that. I did get a bad case of covid but just nursed myself back to health without doctor intervention. I’m told that makes me more immune than the vaccine anyway. People weren’t helped by it and secrets are still being uncovered about what happened over the last few years. It’s sad really. So much deception. So many secrets.

I know this will be a message that can get me banned online but I actually don’t care. Ban me if you must, but I will never stop talking about my life and what is happening. I know that there is more to life than meds, doctor appointments, MRI’s and the like. I want to live my life now… not later when things may get better. My now is important because that’s where hope lives.

And the next person that wants me to get stem cell treatment, cover the cost and maybe I will. But I’m told because of my progression I’m not a good candidate for that either. I’m not looking for the next miracle cure for me, I’m just looking to enjoy my life. If that’s not okay with you… oh well. I will keep smiling, laughing, sharing and hoping. That’s just a part of who I am.

To appreciate the sunny days you have to go through the storms

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Multiple sclerosis is going to give you troubles at some point in your life. All of us go through them but everyone faces it differently. Many times it feels like it’s a constant struggle. Other times you may get a reprieve and have a moment of sanity and calm.

I have discovered that troubles play an important part in our life. They give us a chance to view everything happening from a different perspective, a new vantage point, a changed mindset. It’s important to appreciate the sunny days ahead because there will be stormy ones for sure. Those torrential downpours can be dreadful and overwhelming. No one likes them, but of all things you get a chance to clean out the weed once they pop up.

For me I saw the commitments that I made needed to change in order to simplify my life because they were overtaking me. I discovered that I was doing them just so I could get recognition for it. That’s just me being honest about it. I wouldn’t have ever told anyone my motive, but deep down I knew it was true.

Someone else could do a better job but I wanted to do it myself. That was so selfish of me. Once I gave up my commitments and made way for someone else to step into the position, my time was available for other things and I found myself actually enjoying the job the other person was doing in my stead.

There is so much in life to be grateful for:

  • Having air to breathe
  • The feeling of the sun
  • The smell of flowers, fresh-cut grass, and trees
  • The people we have in our lives
  • To be alive
  • For a beautiful sunrise
  • For each new day
  • That today is probably not the worst day
  • For a hot cup of tea or coffee
  • For the hard times, because they will help us appreciate the good times
  • For failure, because it makes us stronger
  • For the body—it carries us through this life
  • To be able to learn new things
  • To have a place to sleep at night
  • For time to experience life
  • For simply existing
  • That you will get to live today and hopefully tomorrow, too
  • For health, even though it may not be perfect
  • For family

Change your perspective a little bit. Let the rain wash away your trials, burdensome commitments and undue stress so you can clean out the clutter and get a clearer view of life itself. Next time you have troubles, change your perspective. Let it rain so it can ease your troubles.

It’s all about your mentality. If you see multiple sclerosis as your problem, I’m sorry to say the problem has just started but if you think it as an opportunity to discover the importance of life, your opportunity has just started. Keep at it. Believe you can get through the struggles, overcome the chaos, and rise above the hardships…. little by little keep at it and as time passes you’ll find you are doing it. You are a survivor.

Next time you feel unappreciated, overwhelmed, alone and stressed remember you have a choice. You can wrap yourself up in excuses and self-pity, or you can choose to change your perspective and view the opportunities ahead that come through believing in yourself and getting rid of anything in your life that is holding you back. Just keep going… there’s a good future for you here once you get through the storm.