Bike 150, Jammies, and OJ #2

Hello Friends!

It’s time for my next heapin’ helpin’ of Ocrevus! I’m writing this at the hospital while the Ocrevus Juice (“OJ”) is going in.

Thursday, August 29, 2019 was the big day for my first infusion. I was excited to get the OJ going…
… and today I keep thinking that I am willing allowing this whole business to happen to me at a cost of $17,000 per infusion.

My life has been a pretty low key affair since I posted last. As far as the OJ is concerned, I felt decent and it seemed I even had a bit more energy than usual for the first couple of days, despite a light, chronic headache. Naturally, the penny eventually dropped and on the third day a monstrously oppressive fatigue settled in. It felt like I was trying to balance a bowling ball on my neck instead of my head. My legs were concrete pillars and my feet were made of iron. This tyranny lasted for five days before finally releasing me to a much kinder, though still pretty strict, general tiredness. I wonder how it will play out this time. I’m hoping it demands rocky road ice cream 😉.

Todd and I did have one HUGE outing this past Saturday.  He rode in the MS Bike 150 in my honor 🥰. I was so proud of him. It was brutally hot that day but he pushed on and completed 102 miles! As I’ve mentioned before in previous blogs, I don’t drive much anymore because it makes me tired. So, it was a ginormous effort for me to drive 80 miles to the finish line to pick him up. Both of us gave it all we had in the name of fighting this crazy disease. I ended up paying for the effort for a couple of days. On the upside, I spent two days in my jammies snuggling with our cats whilst alternatively watching TV and reading.

My hero closing in on the finish line.
Sweating it out in order to cheer my Todd the last 100 feet. If you squint you can see the orange finish line behind me.
Time spent with cats is never wasted.
~ Sigmund Freud

I have no idea when I will feel lucid enough to write another post. But I do sincerely thank you for joining me as I meander through the wilderness that is MS.

May God be with you.

First Dose of Ocrevus Is in the Books!

I kept a running log yesterday of how my first experience with Ocrevus went. It was a long day for me, but it went pretty smoothly. Even so, I’m glad it’s over because the anticipation of the unknown was getting pretty heavy to carry. In hind site, I don’t think it was the best decision for me to join a Facebook Ocrevus group. There were some pretty extreme experiences shared and a fair amount of misinformation conveyed about both MS and Ocrevus. Each person’s body reacts differently to the ever growing range of MS Disease Modifying Therapies (DMTs), though. This was mine.

7:15 Checked in at Hospital Admissions
7:30 Rode up to the Infusion Center via the scenic route with a blue haired volunteer who got lost in the hospital 😂
7:50 All checked in and IV lead placed then taken to a chair. Waiting for pharmacy to bring my drugs up.
8:33 Drugs arrive. Benadryl, Solu-Medrol, and Saline into the IV first… I’m getting sleepy. Solumedrol is flowing, it feels a little cold as it hits the vein. They gave me a couple of Tylenol, too.
8:40 The nurse starts the Ocrevus Juice (O.J.😉) and says, “You’re off like a herd of turtles, Sister.”
8:51 I have a funky sweet metallic taste in my mouth😝.
9:50 They’ve now bumped up the infusion rate twice and all is well other than a mild headache.
10:15 The rate of infusion was bumped up again and all is well.
10:35 Well, I just had a mild reaction consisting of a worsening headache and dizziness. They are pausing the medicine for 30 minutes and then they are going to slow the rate of infusion down when they resume it. So… it’s going to take a bit more time than the originally planned 4.5 hours.
11:00 I feel better now that they’ve stopped the med and are just running saline.
11:24 Infusion resumed and I’m eating the lunch I packed for myself.
11:55 Bumped up the rate again and I still feel fine.
12:24 Last bump up to the same rate that gave me the headache and dizziness. Fingers crossed it’s okay now. There’s not much left in the bag.
12:40. I have the slightest of headaches but the bag is so close to empty that I’m going to ride it out.
12:52 Ocrevus half dose #1 is in the books! I have to stay for an hour to be monitored but then I’m free🕊️!!
1:50 The last drop of the saline has dripped, IV is out, and I’m heading out for a dear friend from church to drive me home
2:20ish I’m home, ready to shower, and put my jammies on. I have still have a headache so time for some Advil. The icky metallic/sweet taste won’t budge. The metallic part is the very familiar taste of the Solu-Medrol. I guess the sweet part is the Ocrevus because it started within seconds of it beginning.
3:40 I walked around the house for about 25 minutes doing little chores here and there before I felt the usual, sudden onset of fatigue settle in and bind me to the recliner. I’m going to be here a while, but I don’t think it’s related to the Ocrevus, just my typical MS. The headache remains entrenched, though, and it’s definitely from the infusion. I’m not sure which drug has caused it, Solu-Medrol or Ocrevus or even the two together. I do regularly get headaches from Solu-Medrol, but not typically until closer to the 24-hour mark and Advil or Tylenol shuts it down pretty quickly.
6:00 Ate dinner and resting. The headache is still slowly throbbing away. It’s not terrible, just there.
8:15 Added a couple of Tylenol to my handful of night meds and got ready for bed.
8:30 Tucked up in bed, getting ready to pray, and hoping the headache gets tired of hanging around and runs away with the dish and the spoon or hitches a ride with the cow jumping over the moon.

Friday, August 30th
7:20 The headache is gone!! I’m flushing red from the steroids and feeling tired but other than that I’m great😁.

I just have to survive the next couple of days while the steroids ooze out. I go for the second half dose two weeks from yesterday, September 12th. And then…I don’t have to go back for six months in order to get my first full dose!

Thanks for hanging around to read this and for the many who have reached out to me to let me know they’ve been praying for me. I know the prayers have made all the difference!

God be with you,

Amy

Date Set for Ocrevus and I Have Two New Friends

So, last time we met here I told you my Neurologist and I decided it was time to try a new Disease Modifying Therapy (DMT) named Ocrevus. It turned out that making the decision to try the drug was easier than tying to get it going.

Somehow my insurance got my name mixed up with someone else’s. It took about a week to get it all sorted and prove I don’t have Hepatitis B and can walk more than 5 feet. I told my dad about the mix up and he said that the same thing happened to him years ago. He got a letter in the mail saying that his hysterectomy had been approved 😂🤣!

The next step was to schedule with the hospital the first two infusions, given two weeks apart. Over the course of trying to get my insurance information straightened out I had to speak with my neurologist’s medical assistant several times. She had warned me that the Outpatient Infusion Department at the hospital was “understaffed and didn’t have enough chairs” so to expect a bit of a wait. Wow, was she ever right. The nurse I spoke with apologized when she told me the earliest they could get me in was (at that time) a little over a month out, August 29th.

Five days ago I started a regimen to get my current DMT out of my body before beginning Ocrevus. I’m mixing two packets of finely ground prescription death into water and forcing myself to drink it every eight hours. I live in dread of 6:00 a.m., 2:00 p.m., and 10:00 p.m. for another six days 🤢.

About two weeks ago I was introduced to two new friends. They’ve turned out to be very supportive and affable, as they are willing to go just about anywhere I want. It’s nice to have friends.

Hopefully, I will be able to post something soon after my first dose of Ocrevus.

Thanks for following along!

The Next Step: Ocrevus

The last few years it’s been hard to tell if I’m climbing higher up the rugged mountain of MS or going down deeper into the barren desert of it. Whichever way you look at it, I can’t see the end point.

About three years ago my neurologist and I discussed changing my disease modifying therapy (DMT) drug to one of the new, top-tier, “aggressive”, infusion drugs. These new DMTs carried long-term risks that made both my husband and me very nervous and reticent to hop on the bandwagon. We hoped there might be other options in the pipeline and/or there would be more information about how others managed on them before starting them myself. This decision was not a zero risk scenario, though. By not taking one of these newer DMTs, there was a good chance that my MS would continue to advance and I would accrue more irreversible damage manifesting as additional physical disabilities.

Sure enough, I’ve slowly (thankfully) accumulated more disability while staying the course with one of the medium-tier drugs. I saw my neurologist this past Thursday and she had a very frank conversation with me about rethinking my options. She has earned my trust and loyalty over the years and has gone far above and beyond the call of duty for me on numerous occasions. So, when she told me that I have only continued to worsen, albeit slowly, and it was time to up the game to one of the top-tier drugs, I listened. Within the span of time between our conversation three years ago and last Thursday, over 100,000 people have switched to the newer drugs making the risk to benefit ratio much easier to see. The data looks good that the drugs have helped slow the progression of MS for a majority of people. They are not cures and nothing can repair nerve damage that has already occurred, but these top-tier drugs really do seem to the best thing out there by a pretty big margin.

The next step is to get everything squared away with my insurance–it’s already in process. I will then have to endure an 11 day regime of meds to washout the current drug from my system. That doesn’t sound like much fun!

We settled on a drug called Ocrevus because it seems to have the least scary possible side effects and a tolerable protocol. The first infusion will be half of the regular 600mg dose followed by the other half two weeks later. Thereafter, I’ll get the full dose every six months. To decrease reactions to the medicine, they will infuse steroids and an antihistamine before beginning the chosen drug.

It’s been a lot to wrap my head around. So much has changed within the realm of MS since being diagnosed 29 years ago. But for me personally, one thing has remained the same. I had no idea what the future related to this disease held for me back then, and I have no inkling how far it will go in the future. I suppose that’s fitting in it’s own way because the only thing MS has ever promised to be is unpredictable.

I’ll keep you posted as I go through this next step along the way.

Father’s Love Letter

Get ready to feel loved.

My Child,

You may not know me, but I know everything about you.   Psalm 139:1 

I know when you sit down and when you rise up.   Psalm 139:2

I am familiar with all your ways.   Psalm 139:3

Even the very hairs on your head are numbered.   Matthew 10:29-31

For you were made in my image.   Genesis 1:27

In me you live and move and have your being.   Acts 17:28 

For you are my offspring.    Acts 17:28 

I knew you even before you were conceived.   Jeremiah 1:4-5 

I chose you when I planned creation.  Ephesians 1:11-12 

You were not a mistake, for all your days are written in my book.   Psalm 139:15-16

I determined the exact time of your birth and where you would live.   Acts 17:26 

You are fearfully and wonderfully made.   Psalm 139:14 

I knit you together in your mother’s womb.   Psalm 139:13 

And brought you forth on the day you were born.   Psalm 71:6

I have been misrepresented by those who don’t know me.   John 8:41-44

I am not distant and angry, but am the complete expression of love.  1 John 4:16 

And it is my desire to lavish my love on you.   1 John 3:1 

Simply because you are my child and I am your Father.   1 John 3:1

I offer you more than your earthly father ever could.   Matthew 7:11 

For I am the perfect father.   Matthew 5:48 

Every good gift that you receive comes from my hand.   James 1:17

For I am your provider and I meet all your needs.   Matthew 6:31-33 

My plan for your future has always been filled with hope.   Jeremiah 29:11 

Because I love you with an everlasting love.   Jeremiah 31:3 

My thoughts toward you are countless as the sand on the seashore.  Psalm 139:17-18

And I rejoice over you with singing.   Zephaniah 3:17 

I will never stop doing good to you.   Jeremiah 32:40 

For you are my treasured possession.  Exodus 19:5 

I desire to establish you with all my heart and all my soul.   Jeremiah 32:41 

And I want to show you great and marvelous things.   Jeremiah 33:3 

If you seek me with all your heart, you will find me.   Deuteronomy 4:29 

Delight in me and I will give you the desires of your heart.   Psalm 37:4 

For it is I who gave you those desires.   Philippians 2:13 

I am able to do more for you than you could possibly imagine.   Ephesians 3:20 

For I am your greatest encourager.   2 Thessalonians 2:16-17

I am also the Father who comforts you in all your troubles.   2 Corinthians 1:3-4 

When you are brokenhearted, I am close to you.   Psalm 34:18 

As a shepherd carries a lamb, I have carried you close to my heart.   Isaiah 40:11 

One day I will wipe away every tear from your eyes.   Revelation 21:3-4 

And I’ll take away all the pain you have suffered on this earth.   Revelation 21:3-4 

I am your Father, and I love you even as I love my son, Jesus.    John 17:23 

For in Jesus, my love for you is revealed.    John 17:26

He is the exact representation of my being.   Hebrews 1:3 

He came to demonstrate that I am for you, not against you.    Romans 8:31 

And to tell you that I am not counting your sins.    2 Corinthians 5:18-19

Jesus died so that you and I could be reconciled.    2 Corinthians 5:18-19 

His death was the ultimate expression of my love for you.   1 John 4:10

I gave up everything I loved that I might gain your love.    Romans 8:31-32 

If you receive the gift of my son Jesus, you receive me.    1 John 2:23

And nothing will ever separate you from my love again.   Romans 8:38-39

Come home and I’ll throw the biggest party heaven has ever seen.   Luke 15:7 

I have always been Father, and will always be Father.    Ephesians 3:14-15 

My question is…Will you be my child?     John 1:12-13 

I am waiting for you.    Luke 15:11-32

Love, Your Dad.

Almighty God

*Permission to copy and reprint providing that it is used in its entirety and the following copyright notice is displayed…Father’s Love Letter used by permission Father Heart Communications ©1999 FathersLoveLetter.com

(Sometime earlier this week I got the idea to write a letter imagining it was from God to us, His children, using a compilation of verses. I got a little way into the project before thinking I should Google it to see if anyone else had embarked on the same endeavor. Sure enough, someone had done so and did such a masterful job there was no need to recreate the effort on my own. Thankfully, the anonymous person has allowed the letter to be reprinted, provided the copyright be sourced. I hope you have been as touched by these words as I have. To the glory of God!)

When Music Sounds, Gone Is the Earth I know

Without a job the days tend to blend together.  I no longer feel a tinge of sadness that another Monday has rolled around or the excitement of the work-a-day world that it’s finally Friday again.  But, for some strange reason, I definitely struggled through Monday this week.  Was it because hubby had to go back to work after a lovely four day weekend together?  I feel so much more freedom when he is home because it is the only time I really get out of the house these days.  I don’t know, but I definitely had acute symptoms of Monday-itis.  

Oh, before I forget, I should take a step back for a second.  Remember that post a couple of weeks ago about me riding my bicycle and all that bravado of determination to stick it to MS and just ride anyway?  Yep, that one. Well…that sent my MS rolling on the floor in screams of laughter and hilarity. It could hardly catch it’s breath long enough to snidely retort, “That’s a good one, Amy!” 🤣 😂

I have gotten on my bike four or five times since but I’ve come to the conclusion that a seven minute ride just isn’t worth five hours of drooling on the couch in utter debility.

So now, back to the story of Monday.  I got up early to ride my bike and, to be fair, got along better than usual.  I rode for 17 minutes and only had to rest for 45 minutes before being able to take a shower and brush my teeth.  The fatigue settled in heavily thereafter, though, and was thick and heavy for the rest of the day. I was bored and my mind was clear enough that I wanted to be doing something.  On three separate occasions, I tried to come up with something to write about. Nothing but a blank screen stared back at me. Honestly, after the first minute or two of nothingness, the screen wasn’t strictly blank, it looked a lot more like Spider Solitaire.  I decided I was wasting too many brain cells doing such a mindless activity and was determined to do something productive. I emptied the dishwasher and swapped wasting brain cells for wasting energy I did not have. I then decided to work a little on a sewing project I had begun a few weeks ago.  Who knew sewing took so much energy?? URG! 

I tried reading.  I love to read and take great delight in doing so nearly every day.  Why didn’t I feel like reading? Hey, Monday, cut me some slack! I tried watching TV but I couldn’t find anything that interested me.  I finished a puzzle I had started the day before but it only took about 15 minutes. I tried to watch the birds but apparently they all colluded with Monday and went to someone else’s feeders.

Having exhausted all the usual pursuits that keep me busy when I find myself forced to sit all day, a sudden stroke of genius popped into my mind.  Music! I will listen to some music!! 

I have a fairly eclectic taste in music.  My music library is a hodge-podge of various decades of rock, punk, swing, big band, blues, jazz, folk, bluegrass, Christian…pretty much anything that isn’t country or rap.  I’ve been listening a lot to rock, blues, and Christian the last few months but these did not fit the bill on Monday.  

If I was ever sick during the school week while growing up, my parents would drop me off at my Grandma Lois’ house and she would take care of me until they were done with work.  Grandma always had her radio tuned to KTXR 101.3, which was known back then as “The Gentle Giant”. They played a kooky mix of soft rock and various kinds of instrumental music. We never listened to KTXR at our house or in the car but I loved listening to it at Grandma’s house.  Like all kids who grew up in the 70s and early 80s, I watched my fair share of The Lawrence Welk Show. Although I wasn’t ever really interested in listening to any of the lounge act singers, I was a huge fan of the orchestra, especially when they played by themselves. Somehow these two weirdly-paired entities of my childhood faintly illuminated the beginnings of a serious passion for a genre of music I wouldn’t have much exposure to until college.  During 1989, while attending university, I discovered the local National Public Radio station in town. They played classical music several hours during the day back then and I suddenly felt like I had discovered the songs of angels. No other genre of music has ever come close to the joy and delight I have found through classical music.  

I guess like all things in life, you go through phases of binging on one thing to the exclusion of all others until something brings you back to the center of some old passion and you relive the fundamental elements that drew you to it in the beginning.  

And so around 1:15 in the afternoon all the “-itis” of my Monday disappeared.  My heart soared upward, untethered from my languid body, until I no longer knew if I was part of this world or had joined the mirthful realm of the next.  I cried listening to Chopin’s Raindrop Prelude and Etude Op. 25 – No. 1 because of their limpid, beautiful timbres. Brahms’ waltzes, especially my favorite, No 15 in A Major, Op. 39, felt like liquid love washing away all the dullness of the day. Beethoven, Mozart, Bach, Massenet, Debussy, Vivaldi, Schumann, Elgar, Ravel…one after the other until I was too blissed out to care that I was under the thumb of MS that day.

Music, when applied to just the right heart at just the right time, is the strongest balm one can apply to weary souls. 

Music
When music sounds, gone is the earth I know,
And all of her lovely things even lovelier grow;
Her flowers in vision flame, her forest trees
Life burdened branches, stilled with ecstasies.

When music sounds, out of the water rise
Naiads whose beauty dims my waking eyes,
Rapt in strange dreams burns each enchanted face
With solemn echoing stirs their dwelling-place.

When music sounds, all that I was I am
Ere to this haunt of brooding dust I came;
And from Time's woods break into distant song
The swift-winged hours, as I hasten along.
~ Waltar De La Mare

The Game is Afoot!

Two Saturdays ago I rode my bike out of our neighborhood and into one a few blocks away. As I was leaving that neighborhood, the all too familiar onset of instantaneous fatigue hit. I had ridden for 17 minutes but was still a good ten minutes away from home and had no choice but to keep pushing until I made it back. I have been paying for it ever since.

Oh, how I’ve battled fatigue these last many days! Nevertheless, I decided last night I’d test the waters by taking a short ride this morning. I got up early to avoid the heat and, for the first time in 2 weeks, rode up and down our street for almost seven minutes. The hardest part was when I was done. Walking back to the door from the far side of the garage where I parked my bike then up two steps into the house felt like I was conquering Everest. I had to sit and rest before taking a shower and getting dressed. I had to sit again, this time for two hours, before I mustered enough energy to brush my teeth. I’m beat! The fatigue is absolutely oppressive and utterly obstinate. I will rest and sit for the rest of the day, but I am determined to get up and ride again tomorrow. I don’t care if it’s just for a few minutes. I have to have some say in how I live with this and spend my limited energy. The old saying, “I might have MS, but it doesn’t have me” isn’t always true physically but it has to be mentally. Living with any disability eventually becomes a mind game. The ball has been thrown not only into my court, but straight at my head! I have to catch it, manage to throw it back, and get ready for the next shot that will inevitably come whizzing back in short order. The game is afoot!

God’s Attributes

One of my favorite Christan authors, Merrill C. Tenney, who was Professor of Bible and Theology at Wheaton College in Illinois, wrote a book titled, Galatians:The Charter of Christian Liberty.  Within it he explained and applied ten different approaches to studying the meaning of Biblical text “so that the reader can imitate the procedure and thus have the joy of making discoveries in the divine revelation.”  Over the course of the past two years, I have applied these strategies to four different books of the New Testament and found them to be like a key that has unlocked beautiful treasures of incomprehensible wealth.  

I just finished my journey through Romans and would like to share my new found favorite component within one of these methods, the “Theological Method.”  This method includes going through the book and finding all references to God’s personality and attributes, Christ’s personality and attributes, the Holy Spirit’s personality and attributes, and then the specific instructions for what Christ’s churches as well as each individual Christian’s personality, attributes, and behavior should be in order to reflect the Godhead. I found this particular exercise hugely beneficial, faith-strengthening, and awe-inspiring.

The following is a list of the attributes I found describing God’s personality and who He is as I read through Romans.  You can easily follow along, if you wish, by reading Romans yourself, since I wrote this list in chronological order as I read through the book.  If a particular attribute or personality trait was mentioned more than once, I did not repeat it on the list. However, several of His revealed traits were stated in slightly different contexts so I included them on the list.

God’s Personality and Attributes:

God is a promise-keeper

God is Father

God loves us

God witnesses our works

God has a plan for us

God made the gospel as the power for our salvation

God is righteous

God is wrathful against wickedness

God has made plain His truth

God made His invisible qualities evident through creation

God is eternally powerful

God is divine by nature

God is full of glory

God is immortal

God is truthful

God is creator

God is to be forever praised

God gives us over to wickedness when we defy Him

God made the knowledge of Himself evident

God makes righteous decrees

God is judge

God is kind

God is tolerant

God is patient

God leads us

God is wrathful

God is Giver of eternal life

God is angry at evil

God does not show favoritism

God sees

God has a relationship with us if we have faith

God is to be honored

God speaks

God entrusted us with His Word(s)

God is faithful

God is true

God is available when we seek Him

God is to be feared

God is the giver of grace

God is forbearing

God is just

He is God of Jews

He is God of Gentiles

God is the only God

God is to be trusted

God is to be believed

God credits righteousness to us through Jesus Christ

God is our guaranteeror

God gives life to the dead

God raised Jesus from the dead

God gives peace (We do not have to fear judgement)

God gives hope

God poured out His love to us through the Holy Spirit

God loved us while we were still sinners

God is to be rejoiced in

God gifted grace through Christ to us

God has given us an abundant provision of grace

God makes us alive to Him once sin dies in us

God is the One to whom we bear fruit

God is our master when we die to sin

God sent Christ to be a sin offering for us

God is our Abba, Father

God is the giver of true freedom

God works for the good of those who love Him

God has foreknowlege 

God predestined that we be conformed to Christ

God has called us

God justifies us

God is for us!

God chose us

God has loved us with an inseparable love

God does not fail

God has a purpose for His children

God is merciful

God is compassionate

God hardens whom He wants to harden

God formed us

God does not reject His own

God answers

God is stern to those who fall

God grafted Gentiles into the branches of Israel

God’s gifts and calling are irrevocable

God has bound all (at some point) over to disobedience in order that He may have mercy on us all

God’s wisdom is deep and rich

God’s knowledge is deep and rich

God’s judgements are unsearchable

God’s paths cannot be traced

God has made all things from Him, through Him, and to Him

God’s will is good, pleasing, and perfect

God gives us a measure of faith

God avenges

God repays

God established earthly authorities

God’s kingdom is of righteousness, peace, and joy in the Holy Spirit

God gives us endurance

God gives us encouragement

God gives us a spirit of unity

God gives joy

God will crush Satan under His feet

God is wise

I hope this has encouraged you as much as it does me.  Perhaps you can use this technique yourself as you read through scripture in order to get to know God more completely.

May God’s blessings be upon you.

Recovering From A Family Visit

Hello again. It’s been a couple of weeks since I last posted. Hubby and I enjoyed hosting family the past couple of weeks. The last one went home early this past Saturday afternoon. I have been so tired since that, outside of going to see my Dad for Father’s Day and attending church Sunday morning, I’ve not left the house. I thought about writing yesterday but thoughts were slow to come. The blank screen just stared back at me no matter how long I stared at it.

My brain feels a bit less hazy today. I decided to try and lube the wheels with a few purposeful thoughts to scatter the entrenched cogfog.

The MS monster roared and paced around the perimeter the whole time we had company. Thankfully though, it waited to pounce and begin devouring me alive until the last couple of days of the visit. I’m actually fairly proud it took that long because it means I paced myself for a whole two weeks🥳.

Anyway, this short post proves I’m still alive and kicking. I hope to be able to write again someday soon, I’ve missed it.

Godspeed,

Amy

I Want To Ride My Bicycle, I Want To Ride My Bike

I have had several “good days” in a row over the past few weeks!  They may not have been anyone else’s definition of a “good” day, but to me they were. I have always tried to exercise in some shape or form each day for the past 26 years. For many years now I have been confined mostly to walking around the house for as long as possible before having to sit and rest.  Once I have recovered, I walk around again, rest, and so on. My hubby is an avid cyclist and I have at various times tried to ride with him. I start out doing okay, but inevitably wear out in spectacular fashion because I refuse to listen to my body when it starts to get tired.  As a result of my own stupidity, I end up having to stop riding for weeks or months.


In fact, the last time I dared to ride a couple of years ago, I became so utterly undone by the endeavor it took three solid months to come back to a baseline similar to the one I had previously.  After that, I promised never to do that to myself again and put my bike away in the deepest, darkest, corner of the garage. Like someone lost in a foreign country and unable to speak the language, I just couldn’t understand that I could do more over time by slowing down or stopping before inevitably self-imploding.
I follow several MS related research websites and have recently noticed an uptick of studies related to exercise and its effect upon disease progression, regardless of which type the participants had. Of course, exercise doesn’t stop MS progression and disability, but it does have a positive impact.  People who exercised to their fullest potential, even if wheelchair bound, retained more physical skills for a significantly longer period of time than cohorts who didn’t exercise on a regular basis. That got me thinking again about riding my bike.


I’ve certainly noticed a decline in my overall stamina, coordination, and balance for several months, despite my regular efforts to walk around the house.  I’ve also heard myself repeatedly telling my husband how jealous I am of him being able to ride. I got to thinking maybe I should push myself to try cycling again. So, with a healthy dose of trepidation, I put my courage to the sticking place, and pulled my cobweb covered bike out of its long confinement, put some air in the tires, and set off on a short ride.  I managed to get around our block five times in ten minutes before feeling the tug of tiredness. Yay for me!


Feeling encouraged, over the course of the last few weeks I’ve managed to slowly build up some stamina and increase the range I ride. I’d forgotten how delicious it is to feel the breeze on my face, to smell hay and wild honeysuckle in the air, and to hear the choir of various birds singing and chirping from electric lines and treetops. I’d also forgotten how it feels to get my heart rate up, feel the burn of long unused muscles, and enjoy the rush of endorphins when finally finished.


There have been days when I’ve only been able to ride for a few minutes. For example, my ride this morning was abbreviated because fatigue set in pretty quickly.  I had a feeling I wouldn’t make it long since my legs were already heavy and slow to respond to the demands of walking. However, two days ago, I was actually able to ride for 37 minutes!  Perhaps you saw or heard about Kayla Montgomery in the news a few years ago. Kayla’s a young track star who runs races despite the fact MS has left her unable to feel her legs. When the race is over, she collapses into her coach’s arms unable to get up or walk for several minutes or hours.  Well, that’s pretty close to how I am after each ride. It requires a lot of resting before moving on with my day and attempting to conquer other tasks like cooking or folding laundry. I’m trying not to be afraid of what will happen in the future with my MS. I’m going to do my best from day to day trying to obey the constantly fluctuating whims and fancies this dumb disease dictates because I want to be able to continue to enjoy the ride for as long as possible.