Lookout Below!

Falling

A trip to the floor

Now takes even more

Time for me to rise,

And it’s no surprise.

Because of this MesS,

With all of its stress,

I just want to quit

My struggle with it.

Instead of defeat,

The struggles I face

Will be put in their place!

-Josh Evitt, 2019-

Bye-ceps

     Well, this past weekend was fun. Fun as in I slipped out of my shower chair, missed my handrail, and then sliced my toe open as my feet slid into the vent cover. But there was a silver lining to this embarrassing cloud. Beginning around December of last year, I noticed that my falls had become more frequent and more crippling. I began to accept that whenever I would fall that it'll now just take me anywhere from 2 - 3 hours to get back to my feet. Needless to say, apathy started to fester.

      But, after working with a really good physical therapist on developing a routine for falling, exercises to help bolster my wobbly legs, and ways to 're-wire' how my arms work, I have been able to improve my recovery time. A few weeks ago I had a leg-extension spasm, similar to the one that caused me to wreck my car, and fell out of my rollator's chair in the middle of the kitchen floor. I used my arms and pulled myself across the kitchen and into the dinning room. I was actually able to lift myself into a chair, I call it my 'fall chair', and rest until I could return to my feet and wall-walk back to my walker. Then, just a few days ago, I fell getting out of the shower. I tripped on my shower chair and gravity took over. But, I was able to crawl out of the bathroom to my bed and lift myself to my feet by 'climbing' up the bed. Then, today after my shower I was able to take a shower without needing to my usual routine:

1. Sit on shower chair
2. Move to toilet
3. Lift shower chair into shower
4. Reverse to exit shower

I was able to move my chair to the shower without stopping at the toilet and didn't need to use my chair to exit the bathroom! Physical therapy can help, and especially in this case: Biceps.

     I wanted to highlight biceps this time because mine are rather lacking. I use a walker in the house a large mobility scooter elsewhere. So, I have stopped needing my arms as much as I thought, but this year I am keeping up with my PT routine of working arms and I am noticing some improvements when I have to pull myself up to a sitting position or off of the floor. Here's the big secret: I don't do it every day. 

     Biceps fall on Mondays, Wednesdays, and Fridays. I only do two simple sets of ten reps on each arm. For weight, I started with a small, green resistance band, about 2 lbs. worth. Now I have begun using a tougher band, five lbs. resistance, and hope to eventually move to a 10 lb. weight. Who knows. 

TIMBER!!

We've all heard the question, "If a tree falls in the woods and no one is around to hear it, then does it really make a sound?"

     Well, while I am not sure about trees and their sounds, I am fairly certain that when I fall it does make a sound, in fact, several. Here's a brief rundown of what happened when I fell just a few days ago, described by the 'sounds' that were heard. 

• First, there is the creaking whine of my hand brakes on my rollator as I try, desperately and in vain, to halt my movement just long enough to regain my balance.
• Second, comes the hissing sound of the locked wheels of my rollator as it revolts and continues to slide across the linoleum floor, taking me to my, "Event horizon."
• Then comes the barrage of, sometimes R-rated, words shouted as the realization hits me: I'm falling.
• Next, there is the resounding, "Thud!" My body hits the floor and I try to convince everyone that, "I'm OK."
• Finally, there comes a little, "Thump, thump thump," of a three year old hoping that mommy's home, followed by a revelation: "Daddy's on the floor!"

     I do not think that I would have minded falling as much, if I had only managed to fall nearer to a couch, or a chair, or even a bed low enough to allow me some leverage to regain my feet. Rather, I fell in the middle of the kitchen: slippery floors, smooth walls, and no furniture. Four hours later, I was back on my feet. Well, it wasn't just four hours of me simply trying to stand. It was four hours of: grunting, cursing, praying, bargaining, shouting, more cursing, and one embarrassingly vulgar twitter rant. But, I did make it to my feet, 'counter walked' to my rollator, and promptly took a nap. 

Insights I gained from this fall:

• I need to be patient. If I hadn't been in such a hurry to get to the kitchen, to get to my scooter, to get to my van so I could go to my chair yoga class, then I probably wouldn't have lost my balance.
• I need to take things one step at a time. Look at the above list. 
• I need to do a better job cleaning the kitchen floor. Being face down on an old linoleum floor really opens one's eyes. 😏

     So, I'm back on my, well back to using my walker until I fall again, which probably will inspire me to visit the seating clinic at Shepherd. 

Until then, adieu.

The Second and Eleventh

When I was first diagnosed, there really were only four available medicines for MS: Avonex, Bestaseron, Copaxone, and Rebif. At that time, I was terrified of needles, so I chose the one with the smallest gauge of needle. Looking back, after all the blood tests, IV infusions, and such, I cannot comprehend being scared of needles. So, here is my second sonnet. It's a note about my experiences with Betaseron.

Sonnet 2

The Injections Begin

My first choice was for the Beta-1B:

To be injected every other day.

The smallest gauge of needles set my way.

Stories of success make this step easy:

Injections are light, side-effects breezy.

With needles all set, I enter the fray,

Shots go smoothly, and the symptoms-away.

But depression grins at me savagely.

The depression subsides  with some good pills.

The first MRIs are now clean and clear.

I begin to think that all will be well.

The years go by, with some goods and some ills.

But then, an event comes which causes fear:

New problems, and my recovery fell.¹

-2010-

     Now, I get the chance to share my next attempt at creation with you. It was bad enough dealing with the accident that took me out of the driver's seat for a while. 
Sonnet 12: Accident
A wreck took me out of the driver's seat.
Months later I had to re-learn to drive.
But, I drove again; I had not been beat!
I felt like I was once again alive!

My driving skills have begun to revive 
The desire to regain what had passed:
A yearning to do more than just survive.
But a second wreck would leave me aghast.

My van has been restored to me at last.
My driving has now been fully restored.
Even though this wreck is now in the past,
Lessons from this wreck cannot be ignored.

Occasionally, the sky will turn grey.
I can't let myself to sink into dismay.
-04/29/2017

^{1. This poem is NOT an accusation or accolade of how Betaseron (interferon beta-1b) functions. It is merely an account of my own interactions with it. MS is so random that it is impossible to predict whether or not a medication will work. I am NOT against Betaseron.↩}

To those who know me, this is no surprise.

     Poetry can be boring, intimidating, enjoyable, silly, inspiring, or even maddening. To this former English teacher, poetry is my favorite form of catharsis when dealing with multiple sclerosis. At the time of my diagnosis, I took to poetry to help me vent my frustrations with what would become this MesS. Even now, when I start to feel my symptoms raise their ugly heads, I will take the moment to write about it in verse. 
     What follows are some of my past creations, a brief description, and then a new addition. At times I might share a poem, or some lines, by another author, but unless otherwise expressed, these poems are my own, original creations.

Sonnet 1: The signs arrive

It all began with such a simple pain:

The hurt, the ache, and the gait would subside.

The idea of a pinched nerve turned the tide.

A surgeon proved that suspicion mundane.

The signs and feelings were now all made plain.

A constant doom will now, with me, reside,

With a lack of feelings did I collide,

Followed by thoughts that my life will wane.

The idea of a life fully shaded,

Stuck with needles and MRIs galore,

Hobbling and stumbling in a drunken daze.

There were times when I felt somewhat jaded.

A life of joy, I could expect no more.

I was doomed to walk through life in this haze.

-2007-

     I wrote this sonnet as the first in a series that I've begun about this MesS. This was the introduction to how I felt at the time MS wad suspected, then later confirmed. 

     This sonnet came to me with the recent release of a new drug Ocrevus(Ocrelizumab). Until now there was no medicine that had been proven to help with primary progressive multiple sclerosis (PPMS). The release of this new medicine was a game changer on so many levels.

Sonnet 11 Ocrevus Arrives
I have tried so many medications.
Only working adequately, short term,
Falling short of meeting most expectations,
And leaving me in a state more infirm.

The fear of, "Progressive," is in my mind.
A wheelchair will approach me rapidly,
Only as a cripple I'll be defined.
I think how my life will pass vapidly.

Then, on the horizon, a new hope appears,
Carrying news of promise, good results
That begin to relieve some of my fears.
With a less grim future, my heart exults.

Reality returns me to the ground
Stating that a cure is yet to be found.
-04/25/2017-

TIMBER!!!!!

     We've all fallen. From learning to walk as a baby, to learning to roller blade as a fat kid on a hockey team, to relearning how to walk with a rollator, I have had plenty of falls. Usually, as one matures, the frequency of falling lessens. But with this MesS, it's not the case. Living with MS for ten years now has taught me some valuable lessons about falling:

• Falling hurts.
  Plain and simple hitting the ground, a wall, or someone else is painful. I am lucky that I have yet to break any bones, but I have broken: laundry baskets, canes, a rollator, a toilet, and needed stitches. It all hurts.
  
• It'll happen again.
  Despite having an awesome MS doctor, access to good physical therapy, and walking aides, I have to accept that I'm going to fall again.
  
• It's not always MS.
  Yes, a few of my falls were the results of MS causing mayhem in my nervous system. But, there plenty of times in which I've fallen purely by a bad chance. Sometimes MS has noting to do with it.
  
• It doesn't always 'mean something'.
  Not all falls mean that my MS is getting worse or better. True, I tend to fall more as symptoms escalate, but a fall doesn't always mean it's getting worse, or better.

Some falls are worse than others.

     So, falling sucks. There really is no nice way to put it. From the V shaped scar on my forearm to the countless scars and knicks that 'decorate' my shins, evidence of falling is all over me.

But, even with a rollator I can still walk and manage to get back to my feet, but it takes patience, perseverance, and more patience. 😉