Driving with hand controls

/5 Comments/in , /by

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.

 

I’m not okay and that’s okay

/3 Comments/in /by

In a fast-paced world where abilities are praised and feeling inadequate or anything less than great almost always gets swept under the rug (or even frowned upon), it’s so easy to look at the next person and presume that they’re doing fine. In reality, we all have days when we aren’t feeling our best. Sometimes we just need to be reminded that it’s OK to take a step back and ask for help, to get support lifting the weight off our shoulders due to living with a chronic illness.

I wish I had a magic wand to make multiple sclerosis go away. To make the stress of living day in and day out with MS easier. To make carrying the huge burden it causes in your life lighter. To give back the time you’ve lost due to illness, unexpected disabilities, doctors appointments and endless worrying. No one likes living with pain, spasms, dizziness, fatigue, relentless headaches or even trying to manage the unknown daily. If you’re like me, you just want a moment of peace, reprieve, and a sense of calm.

When my friend was feeling her worst, I would tell silly jokes and send her stupid memes. I would do whatever I could to take her mind off of the situation. She needed to know that a good laugh could go a long way, whether she was healthy or sick. It is important to try and understand a sick person’s emotional state. Sometimes they don’t have an appetite to eat their favorite foods, they can’t sleep soundly at night or they aren’t as cheerful. These are common feelings a person with MS experiences.

I take comfort in knowing I am not alone in these feelings. We all feel detached, sad or even angry. Finding something to give you a little lift can help you remember that life isn’t always bad.

When I was young, I was taught that life is fun and should be lived to the fullest – one that must be filled with happiness. But as I grew older, I learned that life is not always easy. It becomes a battlefield we have to endure just to survive.

Some days, things don’t happen the way you want them to. They fall apart, and you start to worry. Worse, you feel discouraged and lonely, thinking that there is no other way to straighten things out. Life can pummel you with disappointments, challenges, and heartache, and your mood can easily shift from light-hearted to heavy-laden. You feel there is no hope for a better life.

I want you to know that it’s okay not to feel okay. It’s important when all hope is lost, to redirect your thoughts into a more positive, motivated and centered headspace once again. When you do, you find hope peaking out. Sure, it’s just words, but they’re positive words. And if you’re on the verge of giving up or struggling to push yourself to the next level, sometimes that’s just what you need. All you have to do is keep moving forward, even when it feels like it would be easier to just lay down and give up.

Today, be determined to see blessings in the midst of things that seem like burdens. Lift your spirits and turn things around. For future reference, I never get tired of giving out hugs, encouraging words, tough love or even smiles.

What people with MS would love to hear

/6 Comments/in /by

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.

Things I can do in spite of MS

/5 Comments/in /by

I CAN DO many things that even “abled” people have trouble with.

1. Laugh – Yes, multiple sclerosis can be cruel, but that doesn’t mean I stopped enjoying life because of it. I do all I can to make the most of each day I have… and laughing is a part of that.

2. Feel – Parts of my body may be numb, but I still have feelings which can be hurt… or shared.

3. Think – I have new ideas all the time and some of them are down-right ingenious. My brain hasn’t fallen out of my head… regardless of MS.

4. Love – I may not be able to do all the things I could do in the past, but I still have a heart that cares deeply and loves outrageously.

5. Hear – For some reason, some people think that because I have a disability, I can no longer hear. You can talk directly to me without shouting. I’m not deaf or hard of hearing, I’m just physically disabled. I will listen, and I don’t bite… most of the time.

6. Learn – Again, my brain hasn’t fallen out yet. I can learn new things, and I enjoy the challenge. I surprise myself all the time.

All I can do is simply be me!

Life is crazy right now

/5 Comments/in /by

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.

Cracks in the concrete

/2 Comments/in /by

Hopscotch was a favorite game of mine as a kid. We would draw the board with chalk on the sidewalk and play for hours. There was one area of the sidewalk, though, where we didn’t play the game. A tree had been growing next to the concrete slab in the sidewalk, and as the tree grew bigger and bigger so did the roots which caused cracks and lumps in the sidewalk.

We would skateboard across the cracks and ride our bikes over them, but you had to be careful not to hit them in just the right spot or you would fall to the ground with a thud. I had my fair share of bruises from those kinds of falls.

Cracks in the concrete are reminders to me that you can fall apart no matter how strong you think you are. When I look back at my life, I had great expectations. My career was flourishing and my future plans were laid out. I was strong, achieving great things, moving forward, and then BAM… a crack showed up in my life called multiple sclerosis and changed everything. It knocked me to the ground and left me in a daze wondering “what just happened.”

MS changed everything. At first, I couldn’t believe what was happening. It was a hard thing to come to terms with. Then as the months went by and the progression continued to worsen, I realized that MS wasn’t simply going away. No amount of denial would force my life back to the way it used to be.

Change is hard. We all hate change, but life is constantly changing and it’s important that we learn to shift with those changes. It’s different when we have to shift our meal preference for the day or shift the places we go for vacation, but to shift your entire life due to a chronic illness…that just doesn’t seem fair. But I don’t look at life as fair and unfair. I see it as an opportunity to grow and become a better person or to sit stewing in anger and become bitter.

Am I going to let MS defeat me or am I going to allow something beautiful to grow from my life? Cracks in sidewalks can grow weeds or flowers and I want mine to grow flowers. It’s a choice we all have to make.

Don’t let that crack in the concrete change you to the point that you focus on the wrong things. Now is the time to change with the changes, but in a good way. MS will affect how you do things, but never let it change you into a negatively focused person.

There’s enough negativity in the world already. Find a little ray of sunshine and step into it. You may be cracked, but beauty can still come out of you if you let it. I believe in you. You are not a quitter. You are not defeated.

__________

Did you hear about the rose that grew from a crack in the concrete? Proving nature’s laws wrong, it learned to walk without having feet. Funny, it seems to by keeping it’s dreams; it learned to breathe fresh air. Long live the rose that grew from concrete when no one else even cared.
― Tupac Shakur

Feeling run down

/9 Comments/in /by

I had a difficult time this past week with my health. I had grown so weak and lethargic that I wasn’t good for anything. I didn’t have any strength to even eat. I couldn’t keep any foods down either and ended up dry heaving any time I attempted to swallow. I think I spent 3 days straight just emptying my stomach.

My family was wonderful and they filled my cupboards with some much needed nutrients since I wasn’t doing so good at keeping any of my basic foods down. My mom pumped me full off vitamins and had me drinking meal replacement shakes because they are so full of everything my body needed.

After about 3 days of working hard, I was able to actually sit up by myself. That was a miracle in and of itself. Today has been the first day that I have been able to actually take care of myself, by myself. I lost about 15 pounds during that time. I wear size 7 rings and they all fall off now… ugh.

The heat and humidity I’m sure isn’t helping me out even with the air conditioner running. It feels like I’m trying to move through thick mud, and think through thick fog. All I want to do is lie down and sleep – and then sleep some more, after that. I still can’t function normally because everything leaves me wiped out.

I get short of breath even when I’m doing nothing at all. My recliner has become my new BFF. I’m hoping to be able to actually sleep today. I know my body needs lots of it. I didn’t think this summer was going to affect me like it has. But I’m thankful for an amazing family that lives nearby because they have kept me going.

My mom did a load of laundry for me and my brother went to the store. All things I couldn’t do on my own. I kept thanking them for their help… even over thanking them. Never overlook the people in you life that are willing to help. They aren’t that easy to find but are keepers when they show up.

Today I’m just going to sit quietly in my recliner, kick my feet up and veg. Even though my head is spinning and my appetite isn’t quite right, I’m going to eat what I can because my desire is to be healthy and enjoy my life. My first step to healthy living is gratitude. Thanks to all my friends who care for me, pray for me and laugh with me. You are my rock. I need you more than you will ever know.

20 things I love about multiple sclerosis

/3 Comments/in , /by

 

  1. Vertigo – I get to pretend that I am on a Trans-Atlantic sea cruise every day… plus I like wearing Hawaiian shirts.
  2. Disabling Fatigue – I get to take naps and snuggle with my pillow.
  3. Insomnia – I get to catch up on all the reruns of the shows I missed while taking my naps… life can stick me with a crippling disease but I won’t miss a thing.
  4. Heat Intolerance – I get to drink all the Chocolate Ice Cream Shakes I want.
  5. Nausea and Vomiting – I can drink all the Chocolate Ice Cream Shakes I want with no weight gain.
  6. Delayed Verbal Processing – Nothing stops me from putting my foot in my mouth faster than being unable to think of what I was just about to say… several times in a row.
  7. Cognitive Dysfunction – When I put my cell phone in the refrigerator, my car keys in the microwave, and the milk in the dishwasher I am always pleasantly surprised when I find them.
  8. Short-term Memory Loss – I get to walk into the same room over and over several times until I remember why I went in there to begin with… it is a great excuse to just go make another Chocolate Ice Cream Shake.
  9. Speech Ataxia – I never know what funky new words I may create when I talk. I believe this is how “jive talk” started.
  10. Paraesthesia – It reminds me of when I was 10 years old at summer camp when I stuffed my socks full of Pop Rocks on a dare.
  11. Footdrop – It makes it really easy to plant even rows of seeds in my garden.
  12. Diplopia – Getting to see my Chocolate Ice Cream Shake twice at the same time is awesome.
  13. Optic Neuritis – The ugly people on my High Def TV are finally blurry! Woo Hoo!!!!
  14. Dysmetria – I get to figure out brand new innovative ways to do simple things like cutting vegetables or frying bacon… or putting on pants while frying bacon.
  15. Muscle Paresis – I will no longer feel obligated to help friends if they ever need to move a couch up a flight of stairs or bury a body in the backyard.
  16. Muscle Spasticity – Gym membership? Ha! Look at these quads!
  17. Bladder Spasticity – I will always know where all the rest rooms are located.
  18. Dystonia – I was never a fan of typing words correctly anyway… just ask Siri on my iPhone.
  19. Clumsiness – I used to just be good to look at but now I am much more fun to watch.
  20. I am stuck in a motorized wheel chair – I have another reason to keep working on designing the first ever “low-rider” turbo charged Rascal Scooter for street racing with death ray for use for the idiots who park in handicapped spots.

Do you see me?

/16 Comments/in , /by

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

/3 Comments/in /by

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.