Continuation Isolation nation …

pic 1 lifeI typically get my blog ideas from my life experiences as I muddle through my daily existence. How someone interacts with me or maybe has an attitude and verbalizes it gives me some ideas. I might write about a fall I had or how a piece of equipment helps me in some particular way. A few times, a TV show or movie has widened my eyes to an issue that has allowed me to feed the brains of my readers about MS. There have been times when a book and even a song helped mold a blog topic that made a difference in at least one person’s life.

However, as I sit here in a house full of only me, my blog topic ideas continue to dwindle. The blog concepts have shrunk so low you have to use numbers scientists use when measuring atoms to count them. I am struggling to find a topic that I can discuss in a valuable way leading to education information that I can share. I have a handful of followers and readers, and I want to make any time they spend on my website worth their time, so they return.

pic 2 eduIn this seclusion delusion, we find ourselves in I am struggling mentally, physically, and even emotionally. My brain and my emotions battle with each other in search of any blog ideas that can help me educate anyone who still reads my writings. Physically my exercise options are significantly limited not only restrained by my lack of abilities but by the fact that I am alone. There is no one here to keep me accountable, and that fact allows me to limit what I do.

I still keep myself on the same sleep schedule, waking up early and going to bed early. I do this so that in a few years, whenever they open the pool up again, I will be able to return without difficulty. I also keep a similar daily routine, trying not to mess up my daily duty procedures, all in hopes of making my returning transitioning less stressful. I still take a brief twenty-minute nap as not to mess up my nighttime slumber practices.

pic 3 health fdoodI try to eat healthier to avoid gaining weight so that seat to seat transfers are as safe as possible. I eat only three meals a day and do not snack throughout the day to again lessen the chance of my midsection swelling unnecessarily. I also eat on a schedule and limit the volume of my food to keep me from engulfing all the food I have. Lastly, I do not eat candy or sugary sweets I fend off fast-food, and dodge deep-fried meals as these all can help pack on the pounds.

pic lastI understand that this quarantine is hard on us, forcing us to do things and be places that we usually are not. I do not know about anyone else, but the consequences from this lockdown will have devastating setbacks that will last for years. This solitary confinement will still have such negative impacts even with all of my cautious preparedness. So I say to anyone reading these written words do you a favor and hope for the best but plan for the worst.

Think smarter, not harder.

The fight for dominance…

pic 1 domEveryone knows this Christmas song, but with a word twist or two, it can be played in the summertime for us MSers. As spring advances into summer, the outside temperatures jump up and down the thermometer like a pogo stick. This season change with its drastic temperature swings, is physically draining for most of us with multiple sclerosis. However, the summer heat can drastically debilitate the majority of those with multiple sclerosis.

It’s the most terrible time of the year.
With the temperature swinging and my body screaming,
the ground is so near.
It’s the most terrible time of the year.
It’s the crap-crappiest season of all.
With the temperatures leaping and bad body beatings
‘cause I tend to fall.
It’s the crap-crappiest season of all.

pic 2 vestIt is common knowledge among those with multiple sclerosis, their families, and even friends of our heat sensitivity. When the summertime stampedes into existence, the various MS organizations begin to pass out cooling vests as well as tips to stay cool. For some MSers, this is not the only challenging time of year as the mercury in the thermometer sticks in the upper temperatures. Some of us are also impacted by the drastic swing of spring and fall, where the temperatures move inconsistently. This seemingly mild time of year for others is rough as the thermometer moves like the wings of a hummingbird after a triple shot espresso for us. This issue is not the entire spring or fall, but just as the season begins to roll into summer or winter.

During this evolution from fall or springtime, I often want to wrap myself in bubble wrap to protect me from every fall. My brutal bruises remind me next time to be more cautious by thinking slowly and moving deliberately. Alas, I typically forget by the following season change, and the psycho cycle continues causing my rump to meet the ground.

pic 3 pogoI want to wrap myself in protective padding as my falls during this newly arriving season precipitously rise. Arm strength is essential for wheelchair users, yet the muscles in my arms become extremely weak. This weakening muscle issue is due to the temperature that rises and falls like the stock market and causes my transfers to be hazardous. For an ambulatory person, legs are the cornerstone for most daily tasks like standing and walking. However, for the average person in a wheelchair, our arms are our ambulation mode, and we need them to be in top form. We cannot depend on our legs to help at all because, for many of us, our legs do not work.

The swings on the thermometer can make us get lightheaded more often, making seat shifts more unstable and unsafe. A transfer at this time from one surface to another becomes more of a precarious proposition. These dizzying moments can happen at any time, whether we are sitting still or transitioning our positioning. This vertigo feeling can put a damper on any part of multiple sclerosis and wheelchair life.

pic 4 bubblewrapHowever, the horrific heat can cause us to fear the outside temperatures and dread leaving the house. Some MSers wake up feeling stiff and barely able to move all day while others feel tenacious tingling thru-out their body. The optic neuritis that many have tends to go haywire, possibly causing temporary blindness, which shakes us to our core. As our multiple sclerosis flairs in this inconsistent and chaotic weather, we fear the unknown of the MS monster. Many times we move slower, doing our best to muddle through our day at times, counting on our reserves to get us home.

MSers like to be included in the activities of our friends. We do not want to be pushed into the land of the ignored, abandoned, and forgotten. Sadly, we have our limitations that we must find ways to work around in hopes of not being shunned and outcast. Many of us feel our restrictions make us a burden and do not want to stop the activities of others.

pic 5 skydiveWe appreciate being invited to most anything even if our answer is no like maybe you are going skydiving. Most MSers will probably say no, but some of us would literally or at least figuratively jump at the opportunity to leap out of a plane. Quite possibly, you are merely going to have a family game night at home. That type of event keeps the activity level down, making the majority of us say yes to this less strenuous day more reasonable. You may also entice more of us with a trip to the movies provided you choose the correct theater. We wheelchair users do not want to break our necks as we sit in the front row, looking directly up at a forty-eight-foot screen.

Be empathetic towards those who are physically limited, include us when you can, and we will be glad to join you.

If The Incredible Hulk had MS…

pic 1 hulkI have shared the importance of keeping the body moving so often that I am sure people can spout my speech like saying The Pledge of Allegiance. I tell people so often I guarantee that some people are getting sick of my disgustingly dull diatribe. I remind them of the success of just how far I have come using fortitude and tenacity through my struggles. I tell people how my story of overcoming my adversities is meant to be inspirational and motivational. These tales of mine are not intended to be derogatory or accusatory of others.

I knew a man named Rick a few years ago who taught fitness models the proper way to train and win. The preparation prescribed these competitors to correctly formulate a plan for excelling their bodies to the winners’ circle. They had to be exceedingly fit physically, mentally, and even emotionally to compete, and his students often won their fitness competitions.

When Rick was later diagnosed with multiple sclerosis, he thought that his training days were done. However, he decided to keep moving forward until his MS laden body demanded that he end his training career. Fifteen years later, Rick continues to train others as well as routinely exercises his physique, as his body does not give in to this idea of a sit still style of living.

I recently learned of a bodybuilding trainer Jim who as diagnosed with multiple sclerosis. This condition of his began thirty years ago at the age of twenty-six. Even though this type of announcement can often be career-ending, he continues to lift weights and train other bodybuilders. It is amazing what a strong will, along with a never give up attitude, can do.

old and swimAn older woman and her husband sat next to me in the pool a while back as their granddaughter played in the water. Lisa and I spoke for about twenty minutes before I realized that she has a twin sister named Melissa, who has the same medical issues Lisa does. She explained how Melisa’s husband babies her by doing everything for her negatively impacting her daily life. He does not allow her to lift a finger, causing deterioration and atrophy, making the dependency on her husband more of a requirement. The longer you use a crutch of any kind, the more you will come to depend on the assistive device.

Melisa’s story reinforces my point of the importance of continual body movement. They both have the same medical issues and yet deal with the complications very differently. Although Lisa still feels pain, she does not let that stop her from living her life to the fullest. By swimming, traveling with her husband, taking care of her family, she can significantly slow the negative impacts of her medical issues.

When Melissa feels pain or discomfort, she deals differently with this miserable plight. She simply asks her husband for some pain killers and a glass of water and continues to sit and waits for nothing good. Again, do not let your body become inactive and stop working like a rusty pair of scissors. This tale of these twin sisters should be like American Express and accepted everywhere.

I have seen people experience retirement in one of two methods, and it does not have to do with money. For some, it is about staying active and living, not only the rest of their lives but the best of their lives. These individuals worked all their lives on the daily grind with retirement as the target. I have seen them do everything to stay active from simple walking to rollerblading and speed walking to surfing. No matter the level of activity, they remain in motion.

On the other hand, I have seen those who have a more sedentary view of life. The extent of daily exercise for those people is pushing the buttons on the television remote. Sure they may get up to visit the facilities or make a sandwich but then return to their derriere’s indention on the couch. I have heard them say things like “my legs hurt if I” and “I get too tired when I,” but they do not believe my cure recommendations. They do not comprehend when I say Dwayne “the Rock” Johnson would also deteriorate if he sat sluggishly stationary on the couch.

old walkingSimply walking outside down a few houses and back will have a significantly beneficial impact on one’s life. This short journey should be made once maybe twice per day to affect your total physical and mental wellness positively. If you do not want to walk outside, then walk around inside your house every time a commercial comes on. You get out of life what you put into it, so put in a little effort in and reap the rewards as you extend your life.

In the pool that I use, I have met more people in their upper seventies and eighties who look like they are in their sixties. Everyone appears to be at least ten years younger than those who do not exercise. I have met seventy-five-year-old farmers still working in the fields like they are twenty. I have a friend who is a nurse and is over eighty years old and moves like she just turned sixty-two.

be fitI hope my writing encourages everyone to get off the couch and begin even a mild fitness program. These stories remind us to move whatever you can as much as you can for as long as you can to slow the effects of father time. We must remember that any rust build-up comes from a sedentary existence. The truth is that “if you always do what you’ve always done, you will always get what you’ve always got.”

Constant movement is the key to continual mobility ability.

To be or not to be…

pic 1 riteblockJust at the point when I think that I am not going to have anything to write about something new occurs. A bright light has been shined on someone’s ignorance and imbecility, allowing my faith in humanity to get knocked down a peg. This belief backslide of my credulity was caused by the total lack of empathy for someone. Luckily for me, in my older age, I have learned how to avoid confrontation in these silly situations.

At the fitness center where I swim, there are three rooms specifically for dressing for any form of fitness. These changing rooms are available for families or the disabled to use for preparation privacy. In all actuality, anyone can use these rooms as there is no bouncer at the door to let in only the chosen few. There are a variety of needs too many to list that cause the needed privacy of these changing rooms.

pic2 belongI patiently waited while eating a protein bar and talking to a physically challenged friend who also found no benefit in the men’s locker room. A woman and her daughter came out of the dressing room as they slowly gathered their belongings. She looked at the two empty rooms and then, with a curt inflection, asked me if this was the only room that I could use? This brusque tone to her query felt snarky and, for just a minute, made me question if I belonged. I said yes and then nicely explained how the other two rooms do not work for my physical needs. Can’t you use the men’s locker room she continued with her terse tone these are the family changing rooms as she emphasized the word family.

Confrontation is not suitable for my MS, so I was speechless by her inane interrogation. Thankfully my friend spoke up as he could see the look of consternation plastered on my face. He explained that the men’s locker room is not set up correctly for the needs of those of us who are disabled, making life more challenging. They went round and round as he tried to be clear and concise in his explanation to help her truly understand this problematic plight. She was done with the information dissemination, and this obdurate woman departed abruptly as her feathers seemed ruffled. I often want to ask all of the antagonists that I interact with one straightforward question. How does MY situation impact YOUR life?

Side note: Let us forget about the disabled for a minute and focus specifically on the original purpose of the family changing room. The initial reasoning was to help parents who had children from the opposite sex in the locker rooms. These rooms are incredibly beneficial to moms with sons and dads with daughters since they could not go in the standard locker rooms. That means that since she had only her granddaughter-by, her logic-she should have been using the women’s locker room.

pic3udouThere was one time when another woman saw me in the passenger seat in an accessible parking space. The handicap placard was sitting on the driver side dash, and as she walked by, spoke into the open car window and complained about its positioning. She vociferously declared that the handicap placard legally needs to be hung on the rearview mirror. I then corrected her and explained that the law states that it needs to be hanging on the mirror or placed on the driver side dash. She just walked away without apologizing or acknowledging that she was wrong and learned something.

I understand that she did not know the law and should have said nothing, yet she felt entitled to say something. I again pose my query: How does MY situation impact YOUR life? I have seen people question those who park in accessible parking spots many times saying you are walking fine why are you using handicap parking? If you do not know that person’s health situation or abilities, you will inevitably embarrass yourself if you speak out of turn.

pic4defendI think that in America, people feel overly entitled and involve themselves in things of which they know nothing. For those who want to be helpful to those who are being attacked or challenged then yes, say or do something. Stand up for someone who is being picked on, abused, or devalued. However, do not say anything if you do not know anything.

Wise men speak because they have something to say, fools speak because they have to say something.

Hermetically sealed for freshness…

pic 1 toxic cauldronI previously did a blog on the topic of toxic people focusing on seven types of noxious individuals. However, I have found that some people do not fit neatly into only one category or one specific grouping. Instead, they are a smorgasbord of toxicity boiling in a caldron loaded with controlling narcissistic self-importance with a smattering of jealousy. Many times these poisonous people can even be marinated in drama smeared with a dash of exaggeration and are dictatorial.

For our health, it is our responsibility to weed through and find the tumultuously pernicious friends and think. Have we lost so many friends that we are eager to sacrifice our health and wellbeing not to lose another compadre? Between you and this malicious cohort, who has a more significant influence on the other? Do you lift them to your level, or do they pull you down and make you align with their insidious behaviors? In this blog, I will tell you about a few of the virulent people in my life and how I answered these questions.

pic 2 opionTake, for example, my friend Brad who is a massively materialistic monster that often stretches the truth. When his parents died, they left him not much money but did leave him a nice average American house and two used cars. This gift has caused him to feel superior to others, claiming that their parents should have left them an inheritance as well. If you spoke to Brad, you would quickly understand that he only cares about others if there is something in it for him. He says that he is a Christian, but his thoughts belie him his words contradict him, and his actions prove him wrong.

If you are keeping someone like Brad in your friendship quiver, you need to answer some of the aforementioned questions. Does this person put you in an awkward position where you must contemplate going against your beliefs? Are your health concerns threatened or put at risk because they have not considered your MS? Do you have a stronger pull on them while trying to make him or her a better person?

pic 3 tugowarI decided to keep Brad as a friend because I understand that I have a greater pull on him then he has on me. When we palaver, I sprinkle love, kindness, and compassion into all topics making sure that he walks away with no negativity from me. When he uses a bitter barb towards someone, my response is usually some positive affirmation loaded with benevolence.

There is my friend Joe who has changed significantly and now has become toxic in several ways. Fifteen years ago, we met, and he began helping me in various ways, driving me places, like doctor appointments. He had done more for me than any other person in many years had ever done. However, recently he is newly divorced and alone, and in the last twelve months has become extremely venomous towards me. He has begun to lash out at anything that I do if it does not coincide one hundred percent with the way that he would do them. I tried to make him understand that the way I do things may be different, but they are still good. Alas, sadly, for my health, I have decided to sever the ties of our irreparable friendship.

pic 4 stubbornJoe, as a guy who is in his late sixties, is very stubborn and set in his ways and not willing to accept the opinions of others. He is not willing even to bend his ideals to the possibility that someone else could be correct. I have no impact on him, so I have no ability to show him that there is more than just his way. These facts lead me to the realization that my health is more important than our fifteen-year friendship. I have made the decision to remove the cancerous cohort from the body of friends that I have. I am monumentally mournful at the loss but feel better that this stress will no longer impact my MS.

It is difficult to purge a toxic person who has been an exceptional friend for an extremely long time. A confidant who has helped you immensely and made an unquestioningly huge difference in your life is hard to ditch. I took the straight forward approach deciding to simply be an adult and write him a heartfelt letter explaining everything. It was a challenge, but I had to remind myself that my health comes well before any friendships.

pic 5 toxicOn the other hand, there are a few toxic people in my life that I have decided to keep around. I feel that the benefits of our friendship outweigh the negative aspects as I think I have a stronger pull away from the dark side. However, for our friendships to continue, I cannot and will not be the only one to acquiesce to the ideas of others. Some days I have to put me first and say to them it looks like today is not your day, so we are going to do my thing instead.

Friends come and go, but the importance of your health remains the same.

Dear stress, let’s break up…

pic 1shieldDuring this global viral pandemic in which we are immersed, it is essential to be aware of our stress levels. Those of us with multiple sclerosis find stress can be devastating to our health, making it negatively life-altering. Stress can escalate or even magnify depression and most other MS symptoms, so we must be mindful and avoid its causes. We need to use every possible way to shield ourselves from the detrimental impacts of tension. Here are some key ways to armor ourselves from the aggressive onslaught of the many stresses in life. These tips may seem foolish and simply superfluous but could help reduce the amount of our required downtime, making them crucial to our wellness.

Make sure that you get enough good quality sleep by getting yourself into a sleep routine. It is easier to fall asleep if your body knows that you go to bed at the same time every night. Do not take long naps in the middle of the day as those who take naps for an hour or more have trouble falling asleep at night. Twenty to thirty-minute power naps and no more should be the goal. Studies show that you do not need to fall asleep in the middle of the day, just a brief brain break to reset. These short respites are like rebooting your computer, where a long afternoon slumber creates a vicious cycle. This long nap in the afternoon will cause sleeping difficulties at bedtime, making you tired and need another long rest the next afternoon.

pic 2 be wellThe statement “eat well” is not only about consuming food that is as healthy as possible but also reminds us of portion control. I have noticed that while I have been homebound, I get hungry much more frequently than before this CV-19 began. For the first few weeks that I was in seclusion, I was hungry every few hours, encouraging me to search for smart snacks. Mixed nuts were the ones that I thought would be the least expensive and less amount of work required to prepare. Since we are in a lockdown at home, it is important to eat for our activity level, meaning low physical activity means to consume small portions.

All of us need to keep our bodies moving. When the “stay at home” orders were set, our worlds shrank to the size of our houses, requiring us to get creative. It is imperative not to sit on the couch and watch television eating bonbons until the order is rescinded. We must dig deep within us and gather all of the motivation that we can muster and fight the urge for a sedentary sabbatical. Walk down the street daily, use soup cans for weights, or even do chair Yoga all so that you will not let the temptation of torpidness win your affection. They are not kidding when they say that a body at rest tends to stay at rest as muscle deterioration begins quite rapidly.

pic 3 timeLearn the importance of time management during this nothing is going on life. It is critical in pre-CV-19 life, not to overbook yourself and take time for you and your joy. However, time management now means to fight any urge to do nothing and schedule events to avoid the void of life. Plan time so that you are not getting bored doing any one thing, keeping your mind entertained as well as your family. If you have little kids or grandkids, create game time with them to keep all of you busy and other times have games just for you. Use Zoom, Hangouts, or Facebook to video chat with them so that you can enjoy games or arts and crafts with them. Have a sit-down meal with everyone in the house and enjoy the togetherness as opposed to everyone is elsewhere.

I have had doctors tell me to maintain a stress journal to help track my stress so that I know what to avoid. There have been doctors who recommend that I should have a sleep log so that I keep detailed notes to help find that elusive sound slumber. I say it is imperative to have an all-inclusive MS ledger that tracks the particulars of all aspects of your illness. These days most people have a smartphone, and there are plenty of apps for monitoring one or many issues related to your MS. No matter if you use apps or pen and paper, you can track things like food consumption, exercise, water intake, or stresses all to see how they impact your health. Using this tech software, you can get as specific or broad as you would like making it super simple.

pic 4 destressTo destress has always been a pretty paramount practice to help the health of multiple sclerosis patients. However, now that we are in isolation, we can quickly get on each other’s nerves causing physical difficulties like never before. Remember, there is a symbiotic relationship between family togetherness and alone time. To keep stress levels low, we need to find and nurture both relationships like a five-year-old who just skinned their knee.

Go Zen and learn to let go.

Don’t stop believing…

pic 1 mudMy blogs have come to me staggeringly slow as of late. Not to mention, it is difficult to write my essays as I get most of my ideas from socializing. Unfortunately, being locked up in my house with no human interaction does not help in this matter, making writing doubly difficult. When I am finally able to duct tape several parts of a topic together, it is as complicated as running through knee-deep mud to put this patchwork into words. I have tried something called freewriting, where you write anything for a set amount of time to jumpstart your creativity. Alas, it has been unsuccessful and has accomplished nothing except filling a blank page with nebulous thoughts.

Interestingly, since I began posting a blog every other week, my readership has dropped precipitously. I am the same person with a writing style that has not changed and that people have raved about when they read it in the past. Yet, for some inexplicable reason, that one extra week in-between has made many people jump ship. If a person is not a fan of my ramblings, that is fine. However, for those who have enjoyed my words, how does an extra week change that? Don’t they say that distance makes the heart grow fonder? For that matter, if you have not visited your favorite restaurant in a while, don’t you get more excited when you finally do?

pic 2 eyesPlease do not misunderstand me. I do not want sympathy reads or people to feel obligated to muddle through my seemingly desultory words if they have no interest. I said it before if you are not into my writing, that is fine, different strokes for different folks. However, for those who do like my blogs, my question is, what are you waiting for? I have put the words out there; they are merely looking for the eyes of a reader to peruse my periphrastic articles.

Someone pointed out to me that my goal of a two-page blog is not always necessary. This idea can help a little, but typically, if I have a topic and a beginning, the words usually flow, eliminating any purpose of a shorter blog. Maybe this scribble is a good idea for a new blog topic where I discuss the aforementioned issues. I often say that my essay topics come from living my life and overall experiences doing so, why should this be any different?

pic 3 bookThe other possibility is that maybe this is an excellent reason to turn these essays into a book. If I did publish a book, then people can buy it and read it as fast or slow as they would like. My new quandary causing query would then be could I raise the quality of my old blogs to match my latest writings. Sadly, turning these essays into a book brings up a plethora of creative complications that need consideration.

Whatever you think you can do, you are correct.

Domo Arigato, Mr. Roboto…

pic 1 mr robatoThere are many health benefits to the simple act of physically standing in an upright position. The bipedal part of society does not need to concern themselves with this issue as they already reap the ambulation awards. Bone density strengthening just from baring weight onto your lower limbs seems small but is vital in life. This bone deterioration was a quizzical concern that NASA had to contemplate to help their astronauts when they return from space. After being in orbit, your bone density weakens by one percent each month that a space person is in zero gravity. NASA finally found an exercise machine that allows an astronaut to have resistance similar to the gravity on earth while in space.

Standing also helps with spasticity in the muscles caused by issues like bad positioning, circulatory problems, and poor posture, to name a few. The bipedal propulsion position encourages proper blood flow, which is difficult while seated. Even when an ambulatory individual is sitting at the office, many of these issues plague them as well. These concerns and the fact that many people are aware of health encouraged the resurrection of the standing desk. These physical difficulties make the simple act of standing an essential part of life.

collectionFor several years at my old house, I would stand using a grab bar and a sink in the bathroom to do five squats, and calf raises hourly. When I moved, the size and shape of my new house made this procedure more difficult to continue because of the travel time and inconvenience. The stopping of my mild exercise program forced my leg muscles to deteriorate, making getting into cars challenging. Wanting to reverse my lower limb loss, I decided to go to the VA for physical therapy with the sole purpose of learning to stand at home by myself safely.

While at the VA physical therapy, I was able to stand with minor assistance while using the parallel bars. I thought that standing repetitiously at the bars would reward me with positive results.
I desired to strengthen the needed muscles that would allow me to continue rising at my house with no assistance.
Sadly it is not in the cards for me to stand unassisted ever again.

power stand chairWhen the physical therapist and I talked, she explained that my goal was sadly unattainable. The topic of conversation quickly evolved into power standing wheelchairs and the benefits that I could expect. I clarified my intention of not going to a power chair until it was a physical requirement that I could not ignore. I want to use my arms until I lose my arms, I exclaimed fervently. The therapist saw that I was steadfast in my ideals and quickly clarified that it was not an either-or issue. She gave details telling me how many of her clients have both types of chairs and uses either depending on the day and how they feel. However, they stand a lot at home using the standing chair because more benefits are received as more standing is achieved.

The next thing that we did was schedule a power chair representative as well as the veteran rep to visit my home. The delivering duo came to my house and brought out one of these mechanized monstrosities to show its capabilities. Most power chairs have a limited number of skills, only moving anywhere on a single plane like forward and backward. Because of its limited abilities, the motor is small and sits directly under the driver of this chair. This action means that the footprint of these armchair accommodations is relatively small for such a big seat. On the other hand, a standing power wheelchair must counterbalance a standing human and has a larger footprint.

ek jumpWhen the power chair rep pulled his minivan in front of my house, he began unloading various motorize marvels. I went out to look at the selection he brought, and I asked what the differences were specifying how they would benefit me. He explained that he just came from a trade show and that only one of the four chairs would work for me. The chair that was chosen for me was wheeled into my living room so that I could see it up close. The sales rep sat in the chair and began moving levers and wrapping straps, showing me how it worked. They then asked me how best to position the chair so that I could safely transfer into this colossal contraption.

When I pulled alongside this massive machinery, two things stood out and made me realize that a transfer would not occur. The first thing that stuck out to me like a burnt potato chip in a bowl of chips was the six-inch gap between the two chairs. Next was the four-inch height difference on the other side of that six-inch gap. Just like Evil Knievel jumping over Snake River with his jet-powered motorcycle, this would be a failure if I tried.

final picThis story now has to be put on hold as two things have slammed the breaks on this endeavor. First and foremost, the COVID-19 virus has thrown a monkey wrench into an already arrested adventurer. Second, they are trying to contemplate how I can transfer from one chair to the other safely without assistance. Now I wait until the viral dust settles and the transfer calculations come back as safety is of the utmost importance.

Machines will save our lives, not de-humanize.

Tenacious me???

pich 1 wrestleAs multiple sclerosis patients, our MS riddled bodies continually fight us like a WWE wrestling match with no rules. We know that we must stand firm against this brutal beast to avoid the terrifying disease prospects that can arrive when we let our guards down. Assistance is excellent and very much appreciated, yet we need to try to hold onto as much independence and self-reliance as possible. This monster, called MS, has violently ripped so much from our control that we need to hold carefully onto everything that we can. There is a desire to tightly clasp onto the remaining competence that we have like a little girl who just got her favorite doll for Christmas.

One morning when the lights came on, I woke up, and something felt a little discombobulated. I tend to push myself when that happens, trying to find that line of doing too much and not crossing it. So I muddled through my morning routine cautiously aware of every maneuver that I made. I spouted my memorized morning mantra like a cheerleader repeats a cheer, helping to focus my concentration. I stayed overly guarded amid every movement prudently positioning myself during transfers, or anytime that I bent, leaned, and reached. The entire morning I was pleasantly surprised that no catastrophic event occurred though several minor issues slightly slowed my advancement.

pic 2--zippers-danaMy dad arrived to take me to aqua therapy, and since both of us prefer to arrive early, we had plenty of time. As I put my coat on, I had significant difficulty with the zipper and struggled with it for several minutes. It felt like I was trying to thumb wrestle while using someone else’s thumbs and I was blindfolded. My dad saw my winter wear skirmish and, in all of his infinite wisdom, asked: “Why don’t you just not go today?” I understand his reasoning as he was trying to make my life easier by suggesting that I back down from the obstacle in my path. So I stopped and quietly counted to ten and began anew with the zipper this time successfully securing my coat. I never give up as my sanity depends on it.

When my friend and I spoke about this issue, she told me that her husband acts the same way. If he hears Heather say that something is becoming a significant struggle, he tells her to leave it for him to do. Heather pointed out that she understands that her husband is trying to be helpful, but at the same time, she does not want to give up. Multiple sclerosis has taken so much from us that we do not want to give up anything else willingly, she said.

pic3 never giv upMost MSers that I know do not want to back down from obstructions simply to make their lives easier. You cannot persevere over an obstacle if you turn tail and run or hide under a blanket to avoid the challenge. One does not grow in life when everything is running smoothly, but we grow when we face adversity head-on. The individuals that I know with multiple sclerosis desire to live life as independently as possible. We want to be able to do as much on our own because MSers know and fear the degenerative disease possibilities. Knowing what we do about the conceivable symptoms, our imaginations run wild, picturing these horror stories. This ambition to avoid what could be our fate encourages us always to act and evade the maleficent potentiality of MS.

pic4 against oddsMy persistently pertinacious and fierce philosophy has helped me to achieve seemingly insurmountable odds. A never give up ideology has taught me to have the fortitude to keep pressing forward even when others tell me that things are impossible. They said to give up, do not waste your energy, you can’t, it is inconceivable, and yet I have prevailed. My intransigent attitude helped me complete a 5k in my wheelchair as well as swimming eight miles with no leg assistance. So the answer is no, I will not buckle to the fright of the masses I will not back down from fear nor bow down to the word “can’t.” I may be slow, but I am not in a race as success comes differently and has a unique meaning for everyone. Those of us with Multiple sclerosis need to hang onto the dignity that remains and not let MS steal that as well.

Think slowly, move cautiously, but never give up.

Instant gradualism…

changeWhat I have noticed with my MS is that drastic changes are unacceptable, and slow evolution is required. As the season begins to change from fall to winter, the temperature starts to drop, and life becomes more difficult for me and my MS compadres. The climate is a challenge for me because here in Columbus, Ohio, the season swiftly switches, causing difficulties in the bodies of MSers. This trouble is the reason that we MS sufferers make lethargic movements that resemble a sloth at nap-time. Sadly it is more of a difficult challenge and can even be painful as well as exhausting for those of us who are stricken with MS. Let me explain to help you understand some of the struggles of the MS sufferers.

Five years ago, I needed Provigil, a particularly pricey prescription to help me stay awake as my muscle relaxer makes me sleepy. This calming muscle medication called Baclofen helps to relax my leg muscles that often jump like two caffeinated puppies. The more of this antispasmodic agent that I take, the more that the sandman comes pounding on my door like a landlord to whom I owe rent. I needed so much of this medication that the only way to stay awake was to take the stimulant called Provigil.

cycleThe longer that you take Provigil, the less effective it becomes requiring you to take more of it, costing even more money. It is a mind-boggling ballgame because one medication led to the need for a new prescription and requiring more of the first medication. This screwball cycle has a domino effect that many MSers and other medical patients nation-wide know all too well.

I was able to end this diabolical drug dissolution by changing my physical activity level. This evolution of my fitness needed to happen very slowly as not to anger my multiple sclerosis laden body. In the beginning, I moved slower than a herd of turtles stampeding through peanut butter as going too fast would quickly put my body in a heated argument with itself. For the first twelve months, I completed minor pool leg exercises avoiding at all costs the dreaded too much title. Gradually I began to add more to my fitness training routine to include movements that did not cross the line of excessive.

I am now able to swim for three hours periodically punctuated with a time of rest. This change was at a sloths pace happening over three years, allowing my body to adapt to its new lifestyle. Before my exercise regimen started so long ago, I had a physical therapy session at my home that made me nearly bedridden for almost two days. All of this proves to me that we MSers might be able to do a little more than we think that we can, although we fear all of the negative consequences. If we start unbelievably slow and continually move our bodies at this pace all for a year, we can fight the inevitability of MS complications.

Temperature is another one of the bitter battles that we multiple sclerosis patients deal with regularly. This challenge can be as simple as a slight temperature change that causes quick lightheadedness and nothing else. On the other hand, this difficulty can create a whirlwind of physical struggles that can make your muscles weak for several days. With multiple sclerosis, I heard it once said that the word multiple is the most crucial aspect of understanding MS. This confusion is because any number of MSers can have any number of symptoms and makes comparing competitions that are superfluous.

thermoSeveral summers ago, I needed to have the thermostat in my house set at sixty-nine degrees. My multiple sclerosis riddled body would wreak vengeance and viciously retaliate if the temperature fluctuated. Even a slight one degree higher or lower temperature in my house and physical difficulties would ensue making transfers without falls an unlikely reality. During that entire season, my movements were nearly halted, making any life outside the home an inconceivable impossibility.

As the next summer began, my A/C unit died, forcing me to acclimate to warming temperatures that frequently fluctuated. I sat in this warmth for nearly two days, and when the air conditioner was finally fixed, my number was no longer sixty-nine but an astonishing seventy-five. The rest of that season had very few negative heat impact days that put me out of operation for any length of time. Dealing with degrees in the upper register of the thermometer was mostly a painless endeavor. It was no longer a threat to contemplate going outside and no more strategic movements when considering traversing out of the home.

adapt an overcomeLife is extremely different from my early days of multiple sclerosis and its significantly unfavorable impacts. I used to sit motionless fearful of body agitations and worried that making any sudden movements would cause MS to strike like a cornered badger. I am in this wheelchair because I did not move enough, causing my body to deteriorate past the point of no return. All of that being said, we MSers cannot handle extremely expeditious evolution in anything such as temperature and fitness. Now that we move slower, we require and desire any change to be moderately mundane so that our bodies can adapt to life’s alterations.

The only constant in life is change, so make it work for you.