I slept horribly the other night and decided to sleep in because a tired brain is a dysfunctional brain. I had nothing planned that next day to wake up early for and realized that this would be a great day to be lazy. I am not sure what caused my unrest though I lay all night with busy mind syndrome. Sadly the chaos that was to ensue would not allow the extra slumber that I so wanted. This terrible technological turmoil would not allow the excess rest to calm my brain that I desperately desired.
From a very young boy, my mother was relentless in the idea of not burning daylight. I would stay the night with a buddy, and as young boys do, we stayed up until at least three in the morning. Inevitably my mom would show up at eight in the morning to take me grocery shopping with her. The idea of a snooze button was like a unicorn; it did not exist in her life.
The Boy Scouts also fostered our sleepless behavior when we went camping. They allowed us to stay up until the wee hours of the morning. Although we were able to stay up late, we also had to rise early to start the day together. No matter how tired we were, no snooze button was allowed to help us.
The Marine Corps continued to maximize this behavior of inadequate sack time. They wiped the idea of the mythical snooze button from anyone still holding onto this unicorn concept. Zero dark thirty was our typical wake-up time and even earlier on training days.
I am such a light sleeper that if a mouse sneezes in my living room, I say “blesses you.” All of that being said my motto has always been to hope for the best but plan for the worst. However, technology has a habit of modifying your ideas no matter your goals. I never want there to be a chance of oversleeping. This desire of not wanting to be late is of the utmost importance. I stagger my morning alarms so that if one does not work the backup number one or even number two will wake me.
While trying to sleep in the first alert in the morning were my lights that come on at ten percent power. They gradually get brighter by ten percent every sixty seconds or so. Keep in mind that I am a light sleeper and this is all that I need to wake me from my deep sleep coma. All of the lights in my house would hit maximum power in ten minutes, so I quickly turn the lights off and close my eyes to revisit the Sandman.
Fifteen minutes later my Google home begins an alarm sound. When my Google home alerts me, my response needs only to be vocal, and I do not need to move. Annoyed I wake up and loudly tell this tiny tech “ok Google stop!” The problem is that I must shout during the lull in the sound especially when I am waking and in a torpor state. Once the siren sound stops I close my eyes and try to return to my dream once again.
Keep in mind that it can take the average person twenty minutes to fall asleep. However, it can take the body an hour and thirty minutes to slip into restful REM sleep. Needless to say by this point I had not gotten the needed extended sleep for which I was aiming.
Ten minutes later the alarm on my phone began to shriek and shout to wake me. When my cellphone alarm rings I must physically manipulate the phone to turn it off. This task is daunting because for me to roll over and grab my phone is a challenging task since my body does not always cooperate. I fight with my body for several minutes making me wide awake, and I remember that this is my last alarm for today. Settling back into bed I close my eyes to finish my dream of running a marathon as I stood in the winner’s circle.
Ten minutes later was the introduction of the straw that broke the camel’s back. I hear the three small motors that open my living room blinds. They are set to open every morning bright and early at seven in the morning. I also begin to hear chirps from my phone reminding me of various upcoming tasks. Obviously, today I will not be getting the needed peace for extra hibernation.
This day reminds me that although technology is usually fantastic, it has its weaknesses too. Most importantly you must look for an off button for those times when you require extra respite. If only one of these alarms sounded that day, I could have continued sleeping even with the motors of the blinds whirring. Alas, I will have to try to sleep-in next month.
I cannot go to work tomorrow. I fractured my motivation.

I am pleased that I have not dealt with exacerbations in a very long time. Sadly my recent hospital stay that was caused by things going sepsis was not good for me in the least. That medical issue caused my grip strength to slip and weaken. It has also made my arms and legs weaker than I first thought. When your arms are your only source of locomotion even small issues can be life-altering.
However, my weakening legs have not supported a tranquil transition like this for a while now. The muscles in my legs have been weak causing me great trepidation when preparing for the twist and drop. As I turn to stick my legs out and my chair is correctly under me, I hesitate as I feel my legs quietly quiver. I have failed at this movement several times before, and the memories build more deeply rooted terror causing more contemplation and caution. This thought circle creates enough fear that I consider staying housebound. However, I realize that it is a bad idea because I have been there before and it was not good for me. I know that my friend can read the horror in my face and she makes a few reassuring comments. With some assistance, this not so big-bad Marine makes it into the landing zone.
Since this Great Weakening has begun, picking up this monstrosity has become more of an objectionable ordeal. Now I must search for the proper position for my weak hands to grab this bulky bag. The little hand strength that I do have and the fact that it vanishes faster than fog in the summer sun means that I must work quickly. I must work without haste to hoist my bag onto the back of my wheelchair before my strength disappears.
These are just a few examples of how this healing sepsis is still haunting my life. Sadly, I do not know how much my strength will improve or what I will gain back. My goal is to keep moving forward no matter how many hits I take because I cannot stop my life waiting to get better. No matter what any of us are going through we must trudge on fighting the good fight.
Staying organized in life is very important. It is beneficial to keep all of your doo-dads and doo-hickeys diligently divided so that you can reach them in an instant. The smart choice is to keep your selection of widgets neatly stacked for your convenience. It is essential to keep your entire calendar of events prominently posted for your perfunctory perusal.
Before the utilization of tech I was old school and the inside of my house showed it. Everything was coated in a thick layer of yellow post-it notes reminding me of everything like I was a retired senile scientist. These notes reminded me of the most mundane tasks because at that time depression made sitting on the couch my only priority. These inked notes reminded me of everything including brushing my teeth, meal times and when to check the mail along with many other just as ridiculous reminders. My bills were all piled neatly in three separate stacks. These piles showed what was paid and what was yet to be paid as well as what was still outstanding.
There is now so much technology to help you stay organized that excuses have gone with the dodo bird. Two point six million apps exist in the Android Play Store, and two million apps reside in the Apple app store reminding us that there is an app for that. These apps can assist you in things such as budgeting, household chore reminders or even when to throw that old app out the window. Gone is the day of tying a string around your finger to remind you of that task that you inevitably forget anyway. The process of writing that to do list on a piece of paper that you soon lose track of is a thing of the past.
Smartphones, Google Home, Amazon Alexa, Apple Home Pod, computers, tablets and even smart watches all make staying unorganized impossible. We MSers need to find what works best to keep our MS lives formulated and coordinated. Multiple sclerosis causes plenty of mind messes like shoddy short term memory. So we must be aware of our weaknesses and find assistive tools to help us to be the best us that we can be.
If you have read any number of my blogs, then you have seen two common themes. First, that is evident is that I have multiple sclerosis. I continually try to let my readers view life from a MSers point of view. I put forth a concerted effort to make my blog informative and honest while allowing the reader to see the humor in life. I like them to be able to understand and maybe even to experience life through my eyes and laughter through the fear.
Let us now steer this bus to the sunnier side of the street. A question was recently posed to me: how do I deal with toxic individuals. It is harder to find a definitive definition of toxic people then nailing fog to the wall. There are a plethora of interpretations through examples then there are actual dictionary explanations. Six early warning signs will alert you that you are dealing with a toxic person or ten behaviors toxic people display but no detailed dictionary definition.
Let me give you seven examples of toxic people so that you can keep an eye out and hopefully save yourself lots of trouble.
We probably all know someone that is potentially toxic. These individuals tend to bring you down and affect your health and well-being. Do your best to distance yourselves from those who are toxic. Spend time with those who might be toxic less and less being in their presence as little as possible. When possible, surround yourself with positive, supportive people and who care about you. People who are full of sunshine and happiness can make any day brighter. They remind you that you are not fighting this medical condition alone and that your quiver of great friends is full.
So I decided to go and observe my options. The first piece of equipment that I looked at was the hand cycle. I would say that this mechanism is simplicity in motion. I do require someone to adjust the handle height for me since I am four foot tall in my wheelchair. This handcycle is a fundamental movement even for assistance needing person like me. All you need to do is pedal with your hands. This piece of equipment is mostly useful for cardio and endurance. The first piece of land equipment is reasonable and not a bad choice.
The machine that is directly next to the handcycle is called the infinity rope. It has a rope with some inline pulleys as well as a way to tighten the tension. This machine is also mainly good for cardio and endurance. My problem is that I cannot pull my chair close enough to get a good angle to make it useful to me. So the second piece of land equipment is a no go.
After those two pieces of equipment things continue to change for the worse for the disabled. At this point, most of the fitness equipment becomes as useless as a hair dryer for a bald guy for us who are wheelchair bound. They have a plethora of other equipment that requires bending, stooping or climbing that we cannot do. To use these devices, we would need several firefighters and a person to direct traffic.
Alas, it is the pool that I will use for the entire time. It has very few limitations, and I can work around the exigous number of restrictions that do exist. There is a freedom that allows the disabled swimmer to be who he or she cannot be on land. This marvelous water makes it possible for even the ambulatory to move without the weight-bearing limitations of the earth’s gravity. Pool fitness is also better on the joints and in my humble opinion better for super circular heroes or the wheeled wonders.
The first task to find an accessible car is to know your specific requirements. The list of amenities that are available for your choice is excessive and abundant. Can you transfer from your wheelchair to the driver seat of a sedan and then back again with the assistance of no one? Now, is it possible to do all of that while from the driver seat tearing down your chair and putting the pieces in the backseat and then back again?
First, you must get from the sidewalk into the vehicle meaning you need a ramp. The less costly route is a ramp that you manually manipulate into place by sliding the door open and physically unfolding the ramp.
The expensive path is a power ramp that slides out of the floor with the push of two buttons. The first knob push is to slide the door open electronically. Toggle two propels a motorized ramp from just beneath the floor.
Next, let us consider the driver seat for the person planning to use hand controls. The lower price point option is to have a bracket under your wheelchair and the other half mounted in the driver position. Once these two pieces snap together, then you can lock them in place with a lever, put your seatbelt on, and drive away.
These brand new accessible cars are beyond expensive. If you purchase a new vehicle and then modify it you void the warranty. Several businesses buy vehicles directly from the manufacturer allowing them to change the cars and still offer a warranty. These vehicles can cost fifty to over seventy thousand dollars depending on the options you choose. These options can solve any issue and deal with any concern that you may have as the possibilities are endless.
The muscle spasms in my legs have been more vicious as of late. The minor “twitching and jumping” of before has recently evolved. This once mild-mannered gremlin that started as a monster from a kid’s movie is all grown up. It has developed into a powerful beast that puts the villain of horror movies to shame. While I have been in the pool, these paroxysms have nearly taken me under water several times.
I got into the pool a few weeks ago at ten minutes before nine, and things felt ordinary. Little did I know, havoc and chaos would soon show their ugly heads while I was not looking. I began exercising my legs keeping them moving for about an hour. I was shifting them up, down, back, and forth as continual movement is the key. At nine-fifty I decided to swim to the lap lanes to complete a forty-minute session of laps. While I swam my laps, I felt several times my leg muscles stiffen as I towed my lower limbs behind me through the water.
On the other hand: while I am in public some people get an annoyed look on their faces like my slowness disturbs them. Occasionally, they reluctantly hold doors open for me showing visual “tells” that they do not want to be there. Microexpressions and body language both let me know their true feelings. Some people are easier to read than The Cat in the Hat book.
Some people cannot be bothered to take those few extra seconds to be helpful. These individuals feel that if they show kindness just one time, they will be significantly inconvenienced. I continue to be flabbergasted by the inpatients of others. They do not realize that everyone is a mouse hair away from their personal life-altering situation.
A friend told me one time that life is war. It is a battle between good and evil a fight between right and wrong. If that is the case, then multiple sclerosis is a beefed-up war on Solu-Medrol AKA steroids. This situation means that you should not go into battle with just anyone by your side.
You should load your ranks with individuals who will help with no hesitation or haste. You want positive and understanding people to back you. You need cohorts who are unquestioningly positive and can turn a bad situation into a funny story. Your quiver should be laden with supporters who in the depths of sorrow can make you cry out loud from laughter.
If negative human impacts are money, multiple sclerosis is a very rich adversary. I know that this is a pessimistic way to look at life. Some might say that it is even an extremely cynical outlook on life. No matter if you agree with the theory that life is war or you think that it is “kittens and rainbows” one part is correct. You need good friends to help with the defective times and share in the excellent times.
When I was younger, I made fun of any of the elders in my life that would make statements of how life used to be. They might say something to the effect of “back in my day” or “when I was a kid.” However, now that I am more mature I tend to make those same comments frequently. So if you are an old person, you can laugh at this blog post, and if you are a young individual, you can roll your eyes as I did “back in my day.”
Since I have been in this wheelchair, I have seen the handshakes significance slip. I am sadly aware that its importance has been lost and the meaning has been debased and devalued. It has been reduced to only a fundamental greeting and in most cases dropped to a basic fist bump if not just a head nod. SIDE NOTE: I understand the necessity of the fist bump during cold and flu season I am not a monster.
When I meet someone for the first time, I reach out with an outstretched hand to signify this proper etiquette of a bygone era. Individuals who do not know me many times have given me the “fingertip” handshake. This practice annoyed me a little in the beginning because of my feelings towards “proper protocol procedures.” I soon realized that people who do not know me fear the unknown. These individuals do not know what it is that they do not know and in many cases, they fear a handshake with me and my wheeled brethren.
“Your word is your bond, and the handshake seals the deal,” they told me. Now it seems that your word and handshake no longer has trust, honesty, and faith to stand behind them. The phrase “my word is my bond” is now a punchline in a joke that brings comedy not conviction. I do not feel that this is limited to wheelchair users as this etiquette of yesteryear dies a slow death. 
At the inception of the house building process for my new home both my parents at different times drove me to the builder’s offices. I still had not said yes, and there were unanswered and unasked questions. Somehow the saleswoman had gotten my mom’s phone number and left a message with her voicemail. The sales rep was calling with some issues that were mine to answer. My mom did not return the call and simply made me aware of this perplexing problem.