Good Days

October 1, 2012. 

That was the day my newest battle with MS began, with the thought that screams “I can’t explain it, but there is just a subtle hint that something’s just not quite right.”  After that there were constant strings of bad days, the only intermittent interruptions being BAD days.  I am now classified as a “difficult patient” by the VA, not for my charming personality but rather the clinical difficulty of my disease.  At that time, I could only focus on trying to get used to my new body and fearing just how bad it would get. 

Today is April 23, 2013.  204 days later and a thought dawned upon me: I have managed to string together a few good days.  The concept of a ‘good day’ is different than it was in the past.  When I am walking down the street and I notice that I am not limping or dragging my leg; when I can raise my glass and ‘cheers’ my daughter at the dinner table; when I can talk to someone for 10 minutes; when I can write and type these journals.  Those are good days.

What makes a good day?  More importantly what compensates for, eases or prevents a bad day?  If I knew that secret, my friends, I would be shouting it from the rooftops.  Maybe someday I will cipher my MS codebook.  That is exactly what I am trying to do.  My compulsive behavior may finally yield the rewards I long for, as I recently started keeping logs of everything.  I am trying to see if there is a pattern between eating, drinking, exercise, sleep, medications, and about 14 variables that I track daily.  I have only been doing this for two weeks but I see a few patterns developing.  I’m looking forward to sharing this with my neurologist next month.  There is no way that I can do this myself and I will need all the help the VA can muster.

So I track my good days, and I track my bad days, and I track everything in between.  I have been focusing on healthy habits (water in lieu of soda), healthy meals, holistic treatments (acupuncture and nutritional supplements), my prescribed medication regimen and exercise.  I’m a 41 year old man who just learned (for the 1,000^th time) that a healthy diet and lifestyle is good for my body.  The days of a large peperoni with extra cheese and a pint of Ben and Jerry’s are over.  Go figure!

I am seeing a reward so desperately needed after this tough winter.  These good days bring the biggest smile to my face as I walk along the street in warm sunlight!  It’s euphoric!  But, alas, it’s also a fleeting moment…  As quickly as those good days come, they disappear.  I can’t yet predict when my leg will buckle under me, or my arm will stop working, or when I can no longer talk, write or type.  So I track those times and I look to see how to put a string of good days together.

I am really starting to get excited about putting in workouts in the gym again!  I really hadn’t been there much (at all) for the last 6+ months.  It feels great to get back.  I realize just how much I’ve stepped away from my fitness, both from MS and lack of activity.  It’s tough but the tired and the pain actually feel good for me mentally!  I worked out 5 days last week.  Most of it is in the gym on the stationary bike, ending with a 1 hour ride at a pretty tough level on Saturday!  I have done Mon/Tue so far this week.  It feels good and I am looking forward to building on this big step.

I’ve got a long road to recovery ahead of me, and I may never quite get back to where I was, but the thrill of the fight is alive in my spirit again!

It will never stop….nor will we

It will never quit….nor will we

This is why we ride

brieandkevin.com/bikems

Kevin Byrne - Portland, OR

www.brieandkevin.com

Sometimes

 “You OK there, Kevin?”

“Fine” is all I can muster between choking coughs.

Sometimes that’s the end of the conversation.  Those who know me will go back to their own business; the moment fades as quickly as it first erupted. 

Those who don’t know me as well may linger a bit longer, their focus remains on my persistent cough.  After a while everything is calm again.  Sometimes the topic is dropped, other times I have to explain myself a bit.  I prefer to not leave the thought in minds that I don’t know how to eat a sandwich, or that I take such obscene bites that I can’t even swallow my food.  Sometimes my mouth just ‘forgets’ how to swallow, at all or just completely.

Such is the world of MS……………..Sometimes.

The waxing and waning of my disease has become quite extreme over the past year.  Sometimes I can do things.  Sometimes I can’t.  Sometimes there is every iteration imaginable between the two.

After I was first diagnosed with MS I generally avoided sharing my disability with others.  Fear of unknown reactions, shame for feeling weak, and my stubborn refusal to give in were my reasons.  I thought that if I didn’t ‘look‘ disabled then I could avoid the reactions, shame, and stubbornness.  Sometimes there we issues, but not often.  I could handle the occasional issue.

That’s not the case anymore.  I always look disabled now; sometimes more than others. 

My willingness to share my disability with others is stronger today.  A few things have helped me grow in this openness.  I’d like to proudly say that I am no longer afraid of the reactions and shame.  That’s not completely true.  My greatest fault will always be my stubbornness.  As I learn to get over the fears of what others may think about my MS, I have a great catalyst….fears of what others may think if they don’t know it’s my MS.

·         I don’t take such obscene bites that I can’t even swallow my food; sometimes my MS acts up.

·         I’m not a clumsy oaf as a stumble, trip and drop my way through the day; sometimes I have worse days than others.

·         I’m not being inconsiderate if I can’t quickly get out of your way or I bump into you; sometimes…..

·         I’m not drunk when I sway, stagger and slur; sometimes…...

I’m more willing to talk about my MS when it helps me; I guess I’ve earned that.  I’m less resistant to accepting the help that I sometimes need; I am glad I’ve learned that one! 

Overall, I’m slower at some tasks these days.  Sometimes I can’t perform some of the simplest tasks without difficulty, if at all.  I need help more often than I care to admit.  This weekend I walked in the National MS Society’s WalkMS.  The 5km was interesting since my new legs haven’t handled that much yet.  I needed help sometimes; my cane was used for the first time.  It was easier with this group, since my fear of reactions and shame doesn’t exist.  Maybe my cane may be my way of sharing my disability with others.  My clumsiness, swaying or staggering may look less oaf-ish if I wield a cane!

I don’t want to change the way people see me.  I am still the same strong man as before.  I just need a little help and understanding because sometimes I can’t do the things I used to do.

But, quite honestly, I am happy and grateful because sometimes I still can!

Kevin Byrne

Portland, OR

Reality

Usually I deal with my MS every day in much the same way as I have for the last 14 years.  Resilience, determination, challenges, strength.  Those are the words that usually describe my fight.  I understand the reality of MS, but I often don’t feel that those difficult realities apply to me.  Or at least not for long as I usually quickly overcome them.  When I send out my annual fundraising letter for MS, my focus has usually been support for others.

It has been 14 years now since I first heard those words "You have MS". Like many others, my course is a daily struggle with pain and damaging effects ever since the first onset of my disease.   I am able to fight back, though!  Through the amazing medical treatment that I receive from my doctors at the Veterans Affairs Hospital, my body is strong.  Through the constant love and guidance from my friends and family, I have been able to maintain my daily life.  All the time, the support from advocacy groups like the NMSS have kept me prepared for today and whatever may happen next!

Now, Brie and I are focused on giving back and fighting for those who have helped so many. 

That sounds nice.  A nice story of strength and determination, overcoming the odds and rising to pay it forward.

That sounds nice but it’s not real anymore.  My MS is now pulling me back into reality, and today I see more reality than I have ever confronted before.

I am faced with some simple facts.

I am disabled and that disability is worsening.  In the past, I would usually get by without “looking disabled”, for whatever that is worth.  That’s not the case today.  The peaks and valleys are extreme.  On good days I can walk and talk with relative normalcy.  On bad days I can’t.  Brushing my teeth or getting out of a bath tub can become impossible tasks.  My slurring can be so bad I sound drunk at 10 in the morning.  My legs or arms will just stop working.  Those peaks and valleys can hit 5, 10, 15 times in a single day!  It can be exhausting to manage my limitations through prediction, preparing my surroundings and explaining to others those awkward moments. 

My medical treatment options have been nearly exhausted.  My body has rejected most active treatments to treat my MS and limit its progression.  I am on one remaining treatment currently on the market; the rest have led me to infections in my leg, kidneys, bladder, and spine as well as bouts of anaphylactic shock and meningitis.  Steroids no longer recover the increasing incremental damage done to my body.

This isn’t going away anytime soon, if ever.  It’s early April.  Normally I am starting my training cycle for the annual National MS Society BikeMS.  My focus is normally “how far can I push my body this year?”  This year my focus is on successfully walking, raising a glass to my lips, or picking my 3-year old daughter up.  I haven’t even started to grasp the issue of whether I can ride my trike, let alone how far.

I am faced with simple facts.  What comes next is neither easy nor clear.  How I move on from here will define everything that I am.

My life has been numb for the past several months, waiting for the resolution of “What’s Next?”

The reality is that this IS what’s next.  My next challenge to display resilience, determination, and strength.  My fight is still the same; my message just needs to face reality.

A World Free of MS  is still the vision but we’re nowhere close. 

New cases of multiple sclerosis that are diagnosed daily remind us that we don’t yet have a cure.

The worsening of my own disability reminds me that challenges for those affected by MS are still there.

Not yet, but we will get there.

It will never stop….nor will we

It will never quit….nor will we

This is why we ride

I wonder how far can I push my body this year.

Kevin Byrne - Portland, OR

www.brieandkevin.com