My MS on a good day…

This is how multiple Sclerosis significantly impacts my daily life. I will explain everything step by step starting from when I first open my eyes in the morning. I have told you that I have Multiple Sclerosis and you may in fact personally know someone with MS. This blog will give you a glimpse into how this disease affects my every move. It may also give you a peek into the battle that your friend is dealing with as well. You may not realize how something minor in your life is a significant concern in mine. Most people take every step that they make for granted.

The bedroom light comes on automatically at 6:44 in the morning. I am a light sleeper, so this wakes me up yet at 6:45 my alarm goes off just in case. My leg muscles need an extra few minutes to wake up, so it takes time to sit upright. As I try to get up my legs stiffen like I was in a planking competition. I must get them to the side of the bed and let gravity bend them towards the ground. My legs then begin to veer in the direction of the floor. At this point, they are as pliable as play-doe that has sat out overnight. Finally, I am able to transfer to my wheelchair. I say the words: “ok google good morning” and my google home device spouts off all about my day.

“Good morning Scott. The time is 6:46 a.m. Right now in Grove City, it’s 70 and sunny. Today in Gove City it will be sunny with a forecasted hi of 85 and a low of 61. On your way to work traffic is light as usual and the drive will take approximately 26 minutes.” (I have the pool where I swim set as my work address) At this point, it lists all of my calendar events one at a time for the entire day. Next, Google tells me everything that I have asked it to remind me of for the day. It closes this rant by saying: “Have a nice day.”

The first thing that I have to do is set up a ride for COTA next week. I am in a COTA non-ADA zone meaning that I can only set up one of my trips per day. COTA scheduling is first to come first serve. The rule is that non-ADA households must wait until the week before the trip. This means that if I want a ride two weeks from today, I have to wait until one week before. It is an incredibly annoying process, but it is the only transportation service for the disabled. “Do not rock the boat when it is the only boat in the water.”

I take my cell phone and roll into the kitchen for breakfast. I want to have eggs, bacon and fried potatoes with a nice glass of orange juice. Then I remember that I just had that like twenty years ago and I do not want the same old same old. So this morning I will have a bowl of cereal instead. I have made sure that everything in my house that I use regularly is within reach. To a visitor, some things may look out of place. Since they do not live here, I am ok with that.

The floorplan of my kitchen is not the best for a wheelchair user. I did not understand that during the design process. If I were to track my daily mileage in my house, the majority would come from my kitchen use. Think of my kitchen as a small school racetrack where my kitchen island is in the center. There is not enough space between the island and the counter to turn around. This lack of space means that I have to retrace my steps many times. I have two options to travel in my kitchen. First is to back-up the length of my kitchen very slowly when needed. Choice number two is to go all the way around the track as it is faster to go forward.

My morning breakfast routine is like this: I go into the kitchen turning on the light. I then roll about twenty feet to the other side of the room where my table is. I set my phone and my wheelchair gloves on the table. Moving an extra five feet allows me to do a 180. I do this turn to end up on the right side of the refrigerator. I then put a towel on my lap to carry the milk as it is cold on my thighs. This towel also stabilizes the liquid filled pitcher while it sits on my legs when I move.

I continue around this track, and I set the milk on the table. From here I get a cereal bowl and spoon from a drawer. All of the lower cabinets in my kitchen are drawers instead of the standard doors. The difference keeps me from having to reach into the back of the cabinets.

After I eat, it is time to clean up. I first turn around so that I end up on the right side of the refrigerator again. I set the milk on a towel on my lap and carry it to the chill chest. Back around this track, I take my dirty bowl to the sink. My kitchen faucet is one that you touch to turn it on and off. This means that I do not have to struggle to reach and set it to the on or off position. I merely touch any place on it that is metal. I load the rinsed bowl and spoon into the dishwasher. I turn off the lights and then go in to brush my teeth and get dressed.

I am apparently getting good at these procedures. So far my legs and I have woken up and transferred into my wheelchair. I listened to my google home device give me my daily rundown. Breakfast and cleanup are complete, and I have used only forty-five minutes. I imagine that this would have taken less time if I was not doing laps around the kitchen island. Every morning I run more laps than a high school track star.

My morning routine at this point is close to everyone else’s. Rolling into the bathroom, I brush my teeth and comb my hair. Actually, I shave my head, and comb er brush my teeth. I also trim the beard hair on my face and shave my neck. I went through nearly a year of no beard trimming during my dark time. It looked pretty ratty, so I want to avoid that happening again. Now it is time to adorn me in clothing.

I take my clothes to the bathroom. This is where I have a wall mounted grab bar to aid in stabilization while standing. The first thing that I do when dressing is put on my socks. Starting one leg at a time, I carefully slide each foot into my shorts. Using my hands, I place each foot one by one onto the ground. It is important to note that when I try to stand proper paw positioning is paramount. I set my feet wider than shoulder-width apart and about three inches in front of the wheelchair. I lunge upward and stabilize myself with the grab bar. Then while holding the bar, I quickly pull up my shorts. I had done the same thing with by briefs moments prior.

Since the advent of the elastic waistband putting my pants on is much more straightforward. Before I switched over to these magical waistbands, I would have significant battles with my pants. It was like watching a WWE wrestling match when I wore those belted pants. The issue: when wearing pants that use a belt you need both hands to pull them up. I need to hold onto the grab bar with one hand leaving me with only one hand to pull up my pants. The next time that you get dressed try to pull up your pants with just one hand. Do not forget that I am stabilizing myself with the other hand.

I use COTA Mainstream three days per week to get to the pool and then home. When COTA arrives on time things run pretty smoothly. However, they are allowed to be and have been more than thirty minutes late. This lack of punctuality can genuinely throw a monkey wrench into my life. I have interacted with many Mainstream drivers. The first question that I always ask is how long they have been a driver for the bus company. Anywhere from one year to several decades is the standard reply. No matter the answer most have been quite friendly and willing to talk.

I roll out of my garage when the bus arrives. COTA has a lift platform that I wheel my chair onto. Then it raises me up to the floor of the bus. This device lifts me so that I can roll on and prepare for the lockdown of straps. I put my medical contraption into place and hand the driver my fare. This chauffeur straps me in and then does some minor paperwork. At this point, we begin our fifteen mile trip usually with a few extra side trips. Ninety-nine percent of the time there has been only one other person on this bus. An extra person means two additional stops. We finally arrive and drop anchor at the community center, and I disembark.

I roll in the community center and say good morning to everyone that I know. That round of conversation takes two maybe three seconds. Moving to the family changing room, I prepare to swim. I get my towels and swim goggles out of the backpack in preparation for aqua therapy. In the pool room, they have a chairlift to aid me in getting into the pool. They put the battery into the chairlift for it to be used. I back up next to the seat and carefully transfer over. From here I use the remote to dunk myself into the pool like a teabag into a cup of hot water.

Today’s blog shows that life is much slower for me now that I am in this wheelchair. In the day that I am describing, we are at ten in the morning. This entry shows how this MS life requires me to think about every move that I make. With this absurdly long description, you can compare your day to mine. The thing to remember is that this is the explanation of a good day. Most of my days run without issues. However, many days cause me significant apprehension. Some days have one or even several problems.

The description of a bad day will have to wait until my next blog entry. I have family staying with me for several weeks. This means that I will not be posting a blog for several weeks. Rest assured one thing: I will be living with my MS and have good and bad days just the same.

Courage under MS’s fire…

I am trying to get the courage to share the more difficult experiences of my early MS days. Several times I wanted to put them down on paper to share these stories. The problem was that it was too emotionally painful. I look back on some of these situations, and I try to think logically. I wonder what the difficulty was. I contemplate the reasoning for my mental conflict. I ponder the possibility of being judged for my actions. Not for doing anything wrong per se, but that I just did not handle the situations “correctly.” Although what does dealing with them correctly mean?

I look at these predicaments from the outside. Someone could say that the answers were so simple. I might be told that a smart person would have seen them. The intense fear that someone might say that I am making mountains out of molehills petrifies me. The emotional struggle should merely be swept under the rug and ignored, they would say. They might say that these should not be debilitating moments that cause lifelong anguish. Wiping these catastrophes from my consciousness should be effortless I could be told.

I had never been faced with anything that I could not contend with. I have done many challenging things in life that would be impossible for most. Every time that I was confronted with these arduous events I prevailed. At times I was sopping wet with blood, sweat, and tears. However, I was always triumphant in the end. These life-altering hardships knocked me down a time or two. However, I quickly got back up dusted myself off and moved forward. I have been faced with many forms of adversity yet I never backed down. Like a zebra that got away from a hungry lion I lived and can tell my story.

I have faced literal mountains in my much younger days. In the southern Rocky Mountains, I hiked while I carried an overloaded backpack. This pack was full of clothing, food, a sleeping bag and a tent for a twelve-day hike. Some areas were so high that plant life could not grow. At times there was such a torrential downpour that we looked for the lifeguard. I was a sixteen-year-boy carrying a thirty-pound backpack for twelve days. I carried this pack well over one hundred miles. This hike was up steep mountains and in areas known for black bears. I never flinched at the venture.

A challenge from ogres and I did not concede. During my Marine Corps days, I quickly learned the meaning of never to back down. I have had men nearly twice my size use their stature to attempt intimidation over me. However, when I stood up my nose to their chest, they backed down. I often wonder if they were terrified of a maniac my size that would stand up to them.

My body had begun to attack itself. This was an onslaught that I was ill-equipped and not prepared for. My new antagonist did not fight fair. Despite demanding that I run, this advisory stole my legs. While robbing me of confidence, this demon required that I ask for help. When I began to research and study how to fight back this vile monster took my vision. For the first time in my life, I was genuinely terrified of the torturous unknown. I had no comprehension of the maleficent evil that was headed straight at me.

I had never really feared anything before. I nearly slid off of the edge of a one hundred and fifty-foot cliff in my younger days. Thankfully, my best friend grabbed me and kept that from happening. I merely looked at him and said: “well that could have been bad.” Yet, there was a deep-seated fear of this destructive beast. This dastardly brute was beyond my understanding. The battle ahead of me was honestly going to be the fight of my life.

So here I sit with a brain loaded with cruel consternation causing memories. I am trying to figure out how to tell these terrifying tales of mine. Thinking about them causes significant anxiety. Writing down the appalling sagas is an impossible undertaking. Talking about them in any form feels insufferable? Putting them into a blog makes them a permanent part of my story. I thought that the idea was to erase them from my brain box and not to solidify them?

At this point, I see two possibilities. They say that time heals all wounds. These cataclysmic events are only sixteen years old and may need another decade. Like a piece of fruit that has been in the bottom of the refrigerator for too long, they may need more time. I suppose that I also need more positive memories. New constructive flashbacks would drown out the torturous nightmares. This action would help me forget that these horrors even exist. I continue to contemplate this complicated cliffhanger.

Seven days of no swimming makes one weak…

I have recently begun swimming lessons. It’s hard to believe that a guy my age has never taken swim lessons. I did not learn to swim in the Boy Scouts or even in the Marine Corps. Do not misunderstand me I fumbled through just enough to get by. So I am eager to see what will happen with these new lessons. We will see what adaptations my instructor comes up with for my limitations. ***side note: I just saw a Paralympian swim the 100 meter on his back in 1 minute and 13 seconds and he had no arms! This teaches me: NEVER SAY NEVER***

We had the first swim lesson the today. It was a rough beginning as we were figuring things out. The techniques that were taught to me needed to be adapted to my limitations. When I am swimming my legs are as useful as a waterproof towel. This means that deep thought needs to go into each lesson. As my teacher pondered this problem, I reminded her of the following: I am not going to be in a swim meet. I also, reiterated that my synchronized swimming days are over. Once we found the trick to make things work, I took off!

“Like a game show contestant with a parting gift, she could not believe her eyes.” My instructor was astonished and flabbergasted that I took to swimming this quickly. I began to glide across the pool as gracefully as two ducks fighting for the last piece of bread. It was ugly, but I was swimming. I was personally astounded, stupefied and thunderstruck yes I was at a loss for words at my exceptional new skills.

This aquatic teacher most times can read my nonverbal cues and knows when not to push. My water trainer has been extraordinarily invaluable and puts up with me to boot. My brash and obnoxious personality does not dissuade her from teaching me. Okay, those words have never been used to describe me. However, she still gets a gold star for putting up with me.

It is crucial for you to know how far that I have come. I began at this new pool just over a year ago. The chairlift put me in the water about sixty feet from where my water movement class is held. My instructor had to hold my hands as I slowly and clumsily shuffled to the class. When I was there, I would cling to the wall like a barnacle on the belly of a ship. I did my best to not get in anyone’s way and I avoided the deeper water. When class was over the fitness trainer would take me back the same way.

Helping me keep my independence she showed me how to use the wall to get back and forth. Using the wall was the long way around, but it helped me get used to the water. As humans, we tend to look for ways to make a long route shorter. I cut corners here and there shrinking my trip a little every day. Within several weeks I was stumbling across the middle of the pool all by myself like a big boy.

I began to do more in class and venture away from the wall more and more. Every class I would get farther from and less dependent on the wall. Recognizing my new found bravery this aqua master decided to teach me a few new skills. These new skills are what I call self-rescue techniques. They were to help calm any of my fears of the water that I had.

I start off face first in the water. This position is called the dead man float. From there she showed me several simple movements to get me face up and on my back. I could effortlessly float and breathe while in that position. When I get into trouble, I force myself to go face first and then splish splash I’m face up again.

Let me go back a little farther in my water training history. The first two years at the initial pool that I used was mediocre at best. Don’t get me wrong, I am thankful for my time at that facility. Pool number one changed my mindset about a lot. I met great people who encouraged me to keep my body moving, and I made some lifelong friends too. These people are all older than me and reiterated that “a body at rest tends to stay at rest.” I have learned the importance of fitness. My schedule at that time was a very basic three hours per week.

Just over one year ago I moved to pool number two. The physical changes began to appear expeditiously. This new pool quickly brought out my long forgotten vigor and passion. These physical developments began to stir something inside me. I started to work hard again. I carefully walked the tightrope between too much and not enough exercise. My new routine is more than double of what my previous pool’s schedule was.

I exercise in the water three days each week for nearly two and a half hours each day. The first hour is a leg-centric workout. My legs are my problem child, so I continually work to not allow them to get week. The next twenty minutes are focused on upper body strengthening. I use my upper body for everything so it must become stronger. Next, I do forty minutes of total body fitness as it is vital for me to join my classmates. It is essential that I move every muscle and joint to assure my limberness. The last thirty minutes I take my swim lessons or I swim laps.

I recently had to miss seven days of exercising. I was truly disheartened by the amount of strength that I lost so quickly. Building power takes time, hard work and dedication of which I am not afraid. However, you lose muscle much faster when you stop exercising. It seems that it will take me several weeks to get back on track.

There are numerous benefits to exercising in general. The water is just the method of my choice. Here are some of the ways that I have been positively impacted by this training regimen. Strength is advantageous for everyone in life. Ambulatory people are limited only by twisting, bending or stooping abilities. Often biped individuals take every movement for granted. If you can’t reach something, then you simply move closer or reach farther. Those of us in wheelchairs can only get as close as our chairs will allow us. So we need to make sure that we have all of the strength that we can.

I partially stand to dress. No matter my superpowers of fitness I still put my pants on one leg at a time. When I pull up my pants, I stand next to a wall mounted grab bar. Before this new fitness routine, I could stand, but I was very unstable. I can now let go for more extended periods of time. I am able to hold onto my pants more and hold less on the grab bar. Sometimes at the end of a long day, I need to grasp a little more securely. However, before all of this exercising I would struggle to dress on the bed at the end of the day.

I am now able to move faster from point A to point B. My distance endurance is no longer a challenge. When using Google Maps, they give you several route choices. This group of options lists various time and path calculations. You can avoid the freeways or look for gas stations. Just like Google Maps I needed to think through all of my choices of pathways. I did not have the strength to roll around Willie Nillie. I am no longer dominated by my weak physical capacity. Let’s not get crazy, I still think through my longer moves. I want to work smarter and not harder.

I am stronger at the end of the day now. Even after taking the numerous precautions that I do I occasionally still fall. I am mindful of what was the likely culprit of any fall. When I fall I always yell in annoyance and frustration. However, getting up off of the floor is usually quicker and smoother. My speedier rebound from the floor is made possible because of my new found strength.

My time in the pool has been miraculous, to say the least. I have shared my story so many times that I have forgotten who I have told. I have repeated my tales many times to the same people, and now they tend to avoid discussing fitness around me. If your life were drastically changed for the better, you too would not stop talking about it.

If you are going to do something, then strive for excellence. The truth is that I need this swimming like a flower needs the sun. It gives me a reason to wake up in the morning. It is a “carrot and stick” thing. I do better when I have a goal to reach for. So I always plan for my next target. I like to have a new brass ring to grasp for. For any younger readers the phrase grabbing for the brass ring can be Googled. I did it just to make sure.

So I say to my readers: for your health keep your bodies moving. You never know what is around the bend in life. I did heavy weight lifting before my diagnosis, and I am very thankful that I did. During my early MS days, I did a lot of crawling without the help from my legs. When I fell to the floor getting up was only possible in specific locations in my house. Now I can manage while mostly avoiding crawling. Having strength in life just makes things easier!

I realize that I only have a very few readers on this blog. Actually, my MS story series got 15 to 30 views. That used to bother me until I realized that this blog is more for my benefit than anything. I read several articles explaining how writing helps the writer in several mental methods. Kind of like when you write in a journal-or diary as the case may be-no one reads your private journal. My life other than my swimming, church and this blog is pretty boring. I don’t really have enough post worthy stuff to write in a journal. I am trying to get the courage to tell some of my more difficult early MS days experiences. We will see.

Preventing a repeat of a problematic past…

Temperature and MS have a paradoxical relationship. The form of MS that one has determines the severity of any symptoms. These physical alerts can cause exacerbations that significantly challenge life. These manifestations can be uncomplicated like making a person slightly winded. In extreme cases, it can put a person out of commission for several days. I say temperature because MSers can be impacted by either hot or cold. However, most of the MS community is challenged by heat.

Multiple Sclerosis is the gift that keeps on taking. It is complicated for the newly diagnosed to plan for the effects of MS. The reasoning for this lack of preparation ability is twofold. First, the Multiple Sclerosis symptoms vary from person to person and day to day. This means that no one can genuinely warn a new MS patient of what is to come. The second is that it would not compute if an individual were advised. This is because a person’s abilities before MS are incredibly different. They are ingrained from years of experience. These older capabilities are taken for granted after many years of existence.

Without experience, there is no comprehension. This new MS lifestyle means that you have to learn everything all over again. Pre-MS, an individual, can deal with a sweltering day. In a post-MS world, slightly warmer days can zap your strength. This strength elimination in some cases requires several days of respite. Knowledge is the only defender that an MSer has to aid in this new MS life.

I have recently learned that these MS influences can change season to season as well. For me, the heat of last year was truly devastating. I had to keep the thermostat in my house set at 69 degrees. The cold temperature in my house caused me to be negatively affected elsewhere too. Even two or three degrees higher on the thermometer made for a considerable difficulty. There were many days where I just sat in front of a fan for hours. I avoided venturing out without mapping and planning my trip carefully.

One day last summer I was invited to an outdoor event. My cooling vest was new to me, and I had forgotten it at home. I did not think about my wearable cooling device because the weather was excellent. It was a sunny day in Grove City, and everyone at the event enjoyed it. I had been out all morning with no adverse effects. I was totally oblivious as a hot breeze blew in. This warmer wind was a bad omen of what was to come.

I soon began to feel my internal thermometer skyrocket. Like a street magician who makes coins disappear my strength had vanished. I was using a motorized attachment that was controlled by me tapping my wheelchair. I had absolutely no power in my muscles. This meant that I could barely touch the chair to get proper progressive propulsion. My friend would have gladly helped me, but I am a very stubborn guy. I just could not ask her for help. All she could do was stay alert like a century guarding a castle.

I could feel myself getting overheated by the second. So we headed back to the car. I should not have waited so long, but I just would not say “uncle.” It was impossible for me to get into the car like I usually do. It might as well have been a climb to the top of Mount Everest. This temperature felt like I was on the edge of a volcano.

I had an angelic and probable powerlifter on my side. This angel sent from above did not bat an eye at the daunting task at hand. The problem was getting me into the car with absolutely no help from me. I could almost hear her shout “CHALLENGE ACCEPTED!” When I was finally in the car, I could not hold myself upright. I quickly slumped over onto the driver’s seat. I could barely pick up my hand so that she could pull me upright. Finally, she helped me get straightened up and get belted in. With the air conditioner blasting, I began my prolonged recovery.

She got me home, and we continued to sit in the driveway and just talk. I’m pretty sure that she had somewhere to be, but there we sat. The strong manly part of me said, “I am absolutely fine, I got this.” Yet, the MS side of me said “yeah right! Go ahead and step out of the car, I need a good laugh.” We sat there until she felt comfortable that I was ok. I thanked her profusely for the next week.

This all could have been avoided had I thought through every move. Experience now tells me what I need to consider. I did not have the knowledge necessary to plan for this part of my MS life. I now have this situation in my memory bank. This means that a situation like this cannot sneak up on me again. I never want to avoid outings just plan for them more wisely.

This summer the thermostat in my house has continually been set at 75 degrees. I have not had a day like last year’s summer outing. I have been able to survive quite comfortably in these warmer temperatures. The days where I need a long recovery are now few and far between. Now this long recovery takes only twenty minutes under a fan. However, none have been close to that strength eliminating hot day that will live in infamy. Yes, that wording is an overstatement. In life, there are just some things that you will never forget.

“Once bitten twice shy.” The heat was a life-threatening antagonist at the time. Thankfully, that is no longer the case. I currently find myself wearing this cooling vest unnecessarily. I constantly remind myself: “it is better to have it and not need it then need it and not have it.” However, as a bulky cooling vest, it seems a bit excessive. Not to mention the cooling powers last for three or four hours tops. This cooling vest is not an all-day thing.

So to anyone newly diagnosed with Multiple Sclerosis hear my words: listen carefully and act quickly. Listen to other MSers sure. They can usually give you necessary information that can be helpful. More importantly though, listen to your own body. It will give you fair warning when you are receptive to it. Act quickly: if something feels wrong then pay attention and move quickly. The effects of MS symptoms many times come out of nowhere. Things impact MSers much faster and harder than your pre-MS days. So be ready.

Having an exceptional attitude helps with this complicated conundrum called MS. Having the patience of Jobe is just a bonus. If they are bodybuilders or not having great friends saves lives. This heroism happens both literally and figuratively. I will take good friends over a trillion dollars any day of the week and twice on Sunday.