During 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.
The 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 It is imperative not to sit on the couch and watch television eating bonbons until the order is rescinded.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.
Learn 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.
To 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.

My 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.
Please 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.
The 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.
There 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.
For 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.
When 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.
When 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.
This 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.
As 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.
My 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.
Most 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.
My 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.
What 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.
The 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.
Several 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.
Life 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.
One of the most significant issues with multiple sclerosis is the many hidden symptoms leading to accusatory statements. The invisibility of these MS issues means that others do not see, perceive, or believe that they even exist. The two primarily posed comments are you don’t look sick; you must be fine or, but you look so good, you are not ill. These statements drive MSers insane and can cause us to stand our ground vociferously.
In our multiple sclerosis family, we deal with an excess of dilemmas and even daunting doubt from others. On a good MS day, it is merely a beastly condition that continually takes from every aspect of our daily lives. Our courage is challenged while our pride is persecuted as we struggle through our every movement. We endeavor setbacks every time that we attempt to take one step forward, not backing down from the fight for our existence. Most people will never know or understand the debilitating issues that we warriors go through to simply get out of bed in the morning. Yet with every strike against us, we persevere like a baseball star returning every psycho spitball thrown by the diabolical devil himself.
It is no wonder why melancholy and depression fill the manipulative and maleficent world of MS. We have deeply drenched fear of every movement and how our multiple sclerosis riddled bodies will react to our locomotion. Will the next treacherous step that we take be the one that lands us in a motorized machine that changes our lives forever? We think about the terrors while we are awake and maybe get a reprieve when we slumber. This respite from our day-mares is only if the sandman does not brutally bombard us with cruel memories of what we will never be. So much depression forces us to cry as the rivers of fears turn into oceans of tears drowning out our thoughts of survival.
There is also a symptom that has a perfectly pleasant name but has devastatingly diabolical impacts on the MSers body. MS Hug is the name of this symptom, and physical terror is its game. It was explained like this: a python that has wrapped itself around you and squeezes enough that every lifesaving breath is excruciatingly exhausting. These breathing complications are not only challenging, but they can last for weeks and up to a year at a time. It was explained from someone else as five bands wrapped around the torso tightened like a vice grip allowing only slight pain-filled breathing.
Most people have been tired from a long day at work or exhausted from a viciously vigorous workout at the gym. Now from a MSers perspective, we sometimes get dreadfully debilitated and need a respite from merely taking a shower. Needing a major rest after a minor task is as common as the sun rising in the east. This fatigue impacts parts of our lives that we do not always expect like it makes us ridiculously weak. I have been so tired that my speech gets significantly slurry and hard to comprehend. This complication causes me to need to close my eyes and rest as soon as it is physically advantageous; otherwise, it can get excessively worse.
I hope that I have done justice in explaining some of the invisible symptoms that plague multiple sclerosis patients. My MS brothers and sisters courageously combat these unseeable issues like the battle-tested warriors that we are. I believe these hidden afflictions would take down most mere mortals, yet we stand with our heads held high like superheroes in a movie. Like Tub Thumping said in their song: I get knocked down, but I get up again; you’re never going to keep me down.
I recently received my very first MRI at the local Veterans Administration medical facility. Do not misunderstand me; I have had plenty of MRI’s in the past. However, these scans were all completed at civilian hospitals. For that matter, my entire repertoire of scans like CAT scans, MRI’S, CT scans, PET scans, and X-rays were all completed at private medical facilities.
I rolled up next to the bed that they wanted me in so that I could mount this mattressed mechanism. The nurse looked at me and asked if I needed help transferring to the bed. Keep in mind that the bed was about a foot taller than my chair height, making a self-transfer an impossible imposition. I knew that this was not the time for comedy conviction, so I bit my tongue and counted to ten. I looked at the bed and then back to her and asked if the bed could go a lot lower. She said no and said that she thought that it was too tall for me and looked puzzled. Let me say that there were four nurses involved in this seemingly simple scene of getting me from my wheelchair to the gurney.
One nurse gets a standing device and the aid of a different nurse to assist me in the best way that they could. They carefully rolled the wheels of this device around my wheelchair and separated the seat pieces of this mechanism. With the position of this unit open and it pulled as close as possible while lifting one person per arm they simultaneously lifted. As I held onto the handle, these nurses lifted me and then closed the seating brackets under me so that my derriere had a resting place. Now resting comfortably, they wheel me around to the bed where they then reversed the procedures until I was sitting on the gurney.
Now is when the phrase tight fit becomes a massive understatement in this story. As the nurse slid me into this cramped cave, I could tell that there was a limited amount of space even for my small frame. This machine is used for the masses they say, but I do not know how much of a massive person would fit in these dinky digs.
The continually updated equipment allows a private hospital to show that as the evolution of technology marches forward, so do they. The Veterans Administration does not have the massive budget of these independent institutions. The VA sends all of the men and women who do not fit into these mini machines to non-veteran facilities costing the VA big bucks. I am perfectly puzzled at why with all of the money that they spend sending vets elsewhere why they do not buy a larger scanner.
I went through many years of a deep dark depression that enticed me to see just how close I could get to the edge. This game of chicken between the darkness and the light stole my thirties from me and cannot return the years that were taken. This onslaught occurred as the angel and devil on either shoulder taunted me with a ruthless game of truth or dare. Although this atrocity would not stop the bold brutal battle did not come to the desired conclusion of the dark side. The following is what helped me, and hopefully, others can learn from my time in perdition and my re-entry into society.
Friendships are the first way to boost your endorphins to aid in your mental modulation. For me, it started slowly, with one friend who reintroduced me to the art of socialization. He would visit once per week at my house until he eventually enticed me to venture into public with offers of savory sustenance. I still felt shame, but my new buddy did not back down from the challenge of encouraging me to open up to the possibilities of life.
Laughing is another way to boost and induce more of the bodies positive mind manipulators. Eventually, I made more friends that helped me to remember how to laugh and enjoy life. Good friends can encourage your tear ducts to dump buckets of face drenching tears as you pound on the table and cry out with thunderous laughter. These new kind compadres helped me to make fun of this arguing devil and angel and see the funny in everything. This thought was helpful to me as I was then able to forget about all of my sad sorrows and pitiful past and focus on my new friends and life outlook.
Exercise can also help your mental wellness as it did and continually does for me daily. For those of us who have MS, there is a fine line between doing too much and not enough. What is worse is that this tightrope jumps like a Chihuahua hopped up on red bull rarely sitting in the same place. The key is to create a habit of fitness by starting gradually as to not get overwhelmed. It is imperative to set your goals during the formation of this important ritual by doing too little rather than too much. Twenty days is what the average person needs to create a repetitious routine of physical fitness. At the time your fitness ideals are a common practice then at that time once per week ramp up your training slightly as to not get discouraged.
Lastly, meditation helped me to guide my mental monsters out of my brain while organizing my thoughts. The practice of this quiet rumination can be challenging, especially for those of us with busy brain syndrome. Guided meditation has a person who verbally suggests the direction of your mind manipulations while unguided simply plays music for you. At this point, you must decide to use guided or unguided for your deep contemplation. I find it absolutely advantageous to start with the guided meditation that takes you on a relaxing tour through your mind meadows. Once you learn and can take control of your brain box, you will no longer need the advice of the instructing voice. Once you are rid of these verbal suggestions, you control the meditation and can lead your mind through its mental neural pathways.
Now that we have rung in this New Year and flipped double digits to enter into the new decade, we need more. We should desire something to make us stand out from the crowd as it is too easy to vanish into obscurity if we do not evolve. This affliction called multiple sclerosis should not define our lives but be a mere side note to the long list of who we indeed are. Every year we should grab the tree of life and with all of the strength that we can muster and shake it. So if you have a lot of power then rock and rattle it until braches crack or if you have less vitality vigorously shake the leaves and say I am here. We must not simply survive with this medical condition but we must thrive like a cactus in the brutally hot desert sun.
For those of us looking for high octane options, there are a plethora of them from which to choose. Adaptive sports have become a massive industry as no one likes to be excluded because of their life’s limitations. We have come so far in technology that what was once impossible is now conceivable. Great minds have gotten together and figured out how to make things work correctly, specifically for the disabled. We have all heard the line there is an app for that well now it seems that we can say there is an adaptation for that.
I am researching my 2020 life challenge to go along with my swimming, and I feel it will be SCUBA diving. I found several companies all over the US that teach the disabled how to SCUBA dive for free. Some of these programs are specifically for veterans and first responders, while others are open to anyone disabled. It is just outside of my comfort zone as it is not in my city, yet I believe it is reasonable, feasible, and, most importantly, achievable.
I have always said do not tell me that I cannot do something because, with time and effort, I will find a way to make it happen. I was challenged to do a 5k in my wheelchair, and even though others doubted that I would complete it, I was successful. Some said that I could not do two and a half miles of swimming, yet I blew that challenge out of the water, and I swam eight grueling miles. There may be obstacles in your path, but you decide to allow them to stop you or not. The question becomes, how badly do you want it, and how much are you willing to sacrifice to accomplish the goal? So get off the couch and pick up your feet, cane, crutches or get behind your walker, even sit in your wheelchair and do something new for the New Year.
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.
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.
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.
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.