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.

What the MS???

para 1One 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.

I have been a member and even a facilitator of several local MS support groups and am currently in a few Facebook MS groups. In this blog, I will attempt to explain the experiences of those dealing with these conundra causing invisible symptoms. I am in a wheelchair, so rarely does anyone question the unseen complications that impact my life. However, I feel that I must help defend my MS brothers and sisters by spreading my blog to the ill-informed masses. I hope that using my words can do justice for those warriors that were unjustly stricken with multiple sclerosis.

para 3In 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.

We no longer have the luxury of taking any part of our lives for granted and must consciously consider every minor task. Simply drinking a glass of water for many MSers requires extra steps that, if not followed, could choke and kill us. Like a pitcher watching the hand signals of the catcher, we must follow the extensive steps for every essential task. We have a deep-seated fear of dinner out with friends or family as we wonder will this be the night that ends in an ambulance trip. These constant concerns continually capture our consciousness because the risk is dire if not followed.

para 5It 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.

para 7There 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.

Pain is a common theme across these invisible indicators that severely impact my multiple sclerosis family. The pain that some MS patients go through is so torturous that they need a properly positioned pain patch. They might even require some other form of continual pain soothing medication that might barely dull the suffering. In life, most people know the mundane pain of a headache, stubbing your toe, or maybe a few cases of a broken arm. However, the pain of those with multiple sclerosis goes on forever, yet we have learned to smile through it like the warriors that we are.

para 9Most 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.

final paraI 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.

They cannot stop us superhero warriors.

Tiny tubular tunnel…

va medI 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.

This experience has taught me the differences between civilian and veteran facilities. Of course, I would not ever criticize the veteran services and their fantastic family of faculty. To be hired at the Veteran’s medical hospitals, you must have two years of real proficiency in the medical field.

All private medical facilities are typically up to date on all of the equipment and keep up with technology. However, that is not the case when it comes to the Veterans Administration. The VA does not have the money that is required to update the equipment regularly like the civilian hospitals.

hos bedI 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.

At this point, one nurse came in and looked at me then back at the bed with a look of consternation on his face. I am sure this is what I would look like if I were trying to do trigonometry. They explained to me that at a private facility, several nurses would pick me up and place me in the bed with no hesitation. However, at the VA medical center, they are not allowed to pick a patient up physically.

sara stedyOne 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.

The next step to having an MRI done is to wheel the bed and me up to the massive magnetic machine. First, they put earplugs in my ears as well as extra pieces of foam to help muffle them from the crashing commotion. They gave me a turkey baster sized ball that was connected with some wires to squeeze if any emergencies arose.

Every MRI that I have had done has been in a cylindrical tunnel that is exceptionally capacious. These cavernous compartments have always been spacious enough that you could fit a couple of people in at one time. They always ask me if I am claustrophobic, but to me, it does not feel like a tightly confined place. These midsized echo chambers feel more expansive then closed off phobia, causing areas.

small mriNow 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.

moneyThe 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.

When it comes to spending, think smarter, not harder.

Booting the mental devil…

The following is a recent blog that I did for the MSAA, and the subject was mental wellness – strategies and struggles. It tells you what helped me with my healthy healing and how it might benefit you too. Happy reading!

daI 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.

To help with brain balance, you need to bombard yourself with enthusiastically encouraging endorphins. These positive peptides resemble opiates in the brain and raise the pain threshold. This action has a significantly positive impact on one’s mental agility benefitting the overall outlook on life. There are seven main ways to boost your endorphin production, but I will speak on the several that helped me specifically in my life’s reinstatement.

friendsFriendships 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.

laughLaughing 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.

exerciseExercise 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.

peaceLastly, 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.

Friends help you laugh at everything and remind you of the benefits and joys of life while being there to simply listen when needed. These capitol cohorts can help you give your funny bone a workout until your muscles are sore from the exercise routine. Fitness not only aids in continual body conditioning but when done with compassionate companions you will have stories and humor for years to come.

The right strategies will help you manage the struggles.