A Day In My Life

Today’s a new day!

There are days when I wake up and have to remind myself that my body is not the same body I had years ago.

For most people, waking up is simply the beginning of another day. For me, waking up can feel like the beginning of another battle.

I live with Parkinson’s, Myasthenia Gravis, Gastroparesis and Dementia. Each condition brings its own challenges, and sometimes they seem to take turns—or work together—to remind me that this journey is anything but easy.

But there is something else I wake up with every morning:

Hope.

Morning Comes With Questions

Before my feet even hit the floor, I often have to figure out what kind of day my body is going to allow me to have.

Will my muscles cooperate today?

Will the Parkinson’s symptoms be manageable?

Will my mind be clear, or will dementia make the morning confusing?

Will my stomach tolerate food?

Will fatigue consume the energy I need just to get through the day?

These aren’t questions most people have to ask themselves when they wake up.

For me, they are part of everyday life.

Sometimes getting dressed takes longer than it should. Sometimes walking across a room requires concentration. Sometimes my body simply doesn’t want to cooperate with what my mind is telling it to do.

And yet, I get up.

Because I’m still here.

Even Breakfast Can Be a Battle

Gastroparesis has changed my relationship with food.

Something as simple as eating breakfast isn’t always simple. My stomach doesn’t always cooperate, and there are days when eating can leave me feeling miserable.

There are times when I wish I could just sit down and enjoy a normal meal without thinking about what it might do to my body afterward.

But I’ve learned that living with chronic illness means learning to adapt.

You make adjustments.

You listen to your body.

You celebrate the small victories.

Sometimes simply being able to eat something and keep it down is a victory.

Then There Is Fatigue

Myasthenia Gravis brings another level of unpredictability.

Fatigue isn’t always the kind of tiredness that a good night’s sleep fixes.

It can feel like my muscles have simply run out of strength.

Things that look incredibly easy from the outside can require tremendous effort on the inside.

Walking.

Standing.

Getting dressed.

Taking a shower.

Going through a normal day.

People may see me doing something and think, “That doesn’t look difficult.”

What they can’t see is the energy it may have taken for me to do it.

That’s one of the hardest things about invisible illness.

People see what you accomplish.

They don’t always see what it cost you.

Then There Is Dementia

Perhaps one of the most frightening parts of this journey is not always knowing whether my mind is going to cooperate.

There are moments when memories become difficult to retrieve.

There are moments of confusion.

There are moments when I know something should be familiar, but my mind doesn’t immediately connect the dots.

And that can be frightening.

There is a unique kind of frustration that comes when your mind doesn’t work the way you know it once did.

You know the information is somewhere inside you, but you can’t always reach it.

I’ve had to learn to be patient with myself.

I’ve had to learn that forgetting something doesn’t make me less valuable.

Confusion doesn’t make me less of a person.

And needing help doesn’t make me weak.

Some Days Are Better Than Others

That’s probably one of the biggest lessons chronic illness has taught me.

No two days are exactly alike.

Some days I accomplish more than I expected.

Other days, simply getting through the day is the accomplishment.

And I’ve learned not to measure the value of my life by how much I accomplish.

My worth isn’t determined by how productive I am.

My worth isn’t determined by how fast I walk.

My worth isn’t determined by how clearly I speak.

My worth isn’t determined by what my diseases have taken from me.

My worth comes from God.

And that changes everything.

I Still Have Things To Do

One of the greatest mistakes we can make when facing a long-term health battle is believing that our lives are over.

They’re not.

They may look different.

The dreams may have to change.

The pace may have to change.

The plans may have to change.

But our purpose doesn’t disappear simply because our bodies change.

I may not be able to do everything I once did.

But I can still encourage someone.

I can still love my family.

I can still pray.

I can still write.

I can still share my story.

I can still remind someone else that they aren’t alone.

And maybe that’s part of my purpose.

Maybe the scars from this journey aren’t just reminders of what I’ve survived.

Maybe they’re opportunities to help someone else survive their own battle.

Some Days I Get Tired

I’m not going to pretend otherwise.

There are days when I’m tired of being tired.

There are days when I wish I could have just one completely normal day.

One day without thinking about symptoms.

One day without wondering what my body is going to do.

One day without having to calculate how much energy something will require.

One day without my mind playing tricks on me.

But even on those days, I remind myself:

I’m still here.

And as long as I’m here, there is still purpose.

My Life Isn’t Defined By My Diseases

Parkinson’s is something I live with.

Myasthenia Gravis is something I live with.

Gastroparesis is something I live with.

Dementia is something I live with.

But none of those things gets to define who I am.

I am more than my medical chart.

I am more than my symptoms.

I am more than my limitations.

I am more than the difficult days.

I am a husband.

I am a friend.

I am a child of God.

I am an overcomer.

And I am still walking this journey one day at a time.

If You’re Walking A Similar Journey

If you’re reading this while living with Parkinson’s, Myasthenia Gravis, Gastroparesis, Dementia, or another chronic illness, I want you to know something:

You are not your diagnosis.

Don’t be ashamed of needing help.

Don’t feel guilty for resting.

Don’t compare your journey to someone else’s.

Don’t beat yourself up because today wasn’t as productive as yesterday.

Give yourself grace.

Celebrate the little victories.

And when all you can do today is get out of bed and make it through the day, remember that sometimes surviving the day is a victory worth celebrating.

And For Me, There Is Still Hope

My faith doesn’t mean I pretend this journey is easy.

It means I don’t have to walk through it alone.

There are days when I don’t understand why God has allowed this journey to be so long.

There are days when I am exhausted.

There are days when I have questions.

But I continue to hold onto God’s promises.

I continue to believe that my life has purpose.

I continue to believe that my story can encourage someone else.

And I continue to wake up every morning and say:

“God, I’m still here. Use me.”

That’s what a day in my life looks like.

It’s messy.

It’s unpredictable.

It’s exhausting.

Sometimes it’s painful.

Sometimes it’s confusing.

But it is also filled with moments of grace, love, laughter, faith and hope.

And tomorrow morning, when I wake up, I will do it all over again.

Not because this journey is easy.

But because I’m still here.

And as long as God gives me another day, I intend to live it with purpose.

I may have Parkinson’s.
I may have Myasthenia Gravis.
I may have Gastroparesis.
I may have Dementia.
But I am not defeated.

I am still walking.

I am still fighting.

I am still believing.

I am still hoping.

I am still an Overcomer. ~OC