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.

A New Year needs new effort…

The following is the recent entry that I did for the MSAA’s national blog. The topic for this month’s editorial is resolutions/trying new things. I hope that you appreciate reading it as much as I enjoyed writing it.

ny pic1Now 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.

The key to finding the new thing that will change your outlook on life is to consider your limits. You should stretch just a little bit outside of your comfort zone to prove to yourself that you can do more. Find your neighborhood community center and look into taking some classes involving art or cooking. If it is age-appropriate, find a senior center, check out the schedule, and make new and possibly lifelong friends. There are plenty of events for the low and even mid-speed MSers if you are willing to pinpoint and participate.

high octainFor 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.

Adaptive sports include things such as surfing, kayaking, skiing, skydiving, and the list goes on and on. No matter your talent level and abilities, you can ride a bike with a handcycle, or if you have the required skills, you can whitewater kayak. If you are willing, it is not out of the question to snow ski in Colorado with the best of the best. For these sports, you are limited only by your willingness to act and what the imagination can create.

scubaI 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.

last picI 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.

Do not let multiple sclerosis stop you; do something despite it.

Scott Cremeans lives in Central Ohio. He is a US Marine who was diagnosed with RRMS in 2001 at the age of 27. Scott has successfully managed his MS symptoms on his own with his faith, friends, and humor. You can read more about his MS journey by visiting his blog http://www.myramblings.blog where he muses about life in the slow lane with his literary wit.

With great power comes great responsibility…

lost brainI slept horribly the other night and decided to sleep in because a tired brain is a dysfunctional brain. I had nothing planned that next day to wake up early for and realized that this would be a great day to be lazy. I am not sure what caused my unrest though I lay all night with busy mind syndrome. Sadly the chaos that was to ensue would not allow the extra slumber that I so wanted. This terrible technological turmoil would not allow the excess rest to calm my brain that I desperately desired.

From a very young boy, my mother was relentless in the idea of not burning daylight. I would stay the night with a buddy, and as young boys do, we stayed up until at least three in the morning. Inevitably my mom would show up at eight in the morning to take me grocery shopping with her. The idea of a snooze button was like a unicorn; it did not exist in her life.

The Boy Scouts also fostered our sleepless behavior when we went camping. They allowed us to stay up until the wee hours of the morning. Although we were able to stay up late, we also had to rise early to start the day together. No matter how tired we were, no snooze button was allowed to help us.

The Marine Corps continued to maximize this behavior of inadequate sack time. They wiped the idea of the mythical snooze button from anyone still holding onto this unicorn concept. Zero dark thirty was our typical wake-up time and even earlier on training days.

sneeeeezI am such a light sleeper that if a mouse sneezes in my living room, I say “blesses you.” All of that being said my motto has always been to hope for the best but plan for the worst. However, technology has a habit of modifying your ideas no matter your goals. I never want there to be a chance of oversleeping. This desire of not wanting to be late is of the utmost importance. I stagger my morning alarms so that if one does not work the backup number one or even number two will wake me.

While trying to sleep in the first alert in the morning were my lights that come on at ten percent power. They gradually get brighter by ten percent every sixty seconds or so. Keep in mind that I am a light sleeper and this is all that I need to wake me from my deep sleep coma. All of the lights in my house would hit maximum power in ten minutes, so I quickly turn the lights off and close my eyes to revisit the Sandman.

Fifteen minutes later my Google home begins an alarm sound. When my Google home alerts me, my response needs only to be vocal, and I do not need to move. Annoyed I wake up and loudly tell this tiny tech “ok Google stop!” The problem is that I must shout during the lull in the sound especially when I am waking and in a torpor state. Once the siren sound stops I close my eyes and try to return to my dream once again.

Keep in mind that it can take the average person twenty minutes to fall asleep. However, it can take the body an hour and thirty minutes to slip into restful REM sleep. Needless to say by this point I had not gotten the needed extended sleep for which I was aiming.

smart techTen minutes later the alarm on my phone began to shriek and shout to wake me. When my cellphone alarm rings I must physically manipulate the phone to turn it off. This task is daunting because for me to roll over and grab my phone is a challenging task since my body does not always cooperate. I fight with my body for several minutes making me wide awake, and I remember that this is my last alarm for today. Settling back into bed I close my eyes to finish my dream of running a marathon as I stood in the winner’s circle.

Ten minutes later was the introduction of the straw that broke the camel’s back. I hear the three small motors that open my living room blinds. They are set to open every morning bright and early at seven in the morning. I also begin to hear chirps from my phone reminding me of various upcoming tasks. Obviously, today I will not be getting the needed peace for extra hibernation.

offThis day reminds me that although technology is usually fantastic, it has its weaknesses too. Most importantly you must look for an off button for those times when you require extra respite. If only one of these alarms sounded that day, I could have continued sleeping even with the motors of the blinds whirring. Alas, I will have to try to sleep-in next month.

I cannot go to work tomorrow. I fractured my motivation.

loser…

I said it in an earlier post that when you want to accomplish something, you need to think about it carefully. You need to decide how badly you want it and consider what you are willing to sacrifice to achieve this goal. Remember that most times in life there is a give and take no matter what situation you are involved in. However, with most medical conditions this choice can be detrimental to one’s health and well-being.

aaa weeblwobleDo you want fashionable athletic shoes or the hideous Velcro footwear? The favorite sports shoes are stylish, but it takes your fumbling fingers longer to tie them then Thanksgiving dinner. Do you want those spectacular high heels that make you look breathtaking along with that dress? Or do you want to stand without continually falling because MS weeble-wobbles we are not. aaashoes 2aaa shoes

There have been numerous losses in my recent MS life. I have sacrificed plenty to accomplish all of the swimming that I have achieved. I have lost the ability to stand and dress using the grab bar in my bathroom. I now get dressed on my bed while pulling, rolling and generally playing tug-o-war with my pants until they are on correctly. aaa tug o war

There are other battles that I seem to be losing as well. The first is between my feet and me as my outside ankle muscles are weakening by the day. This deterioration causes my feet to rotate upward when in a spasm or a tired state. I have specific exercises to aid my fight in this battle of one step forward and one step back. I suppose that the good part is that my feet are not getting worse. Sadly they are also not getting better.aaa feet

Secondly, my hourly leg squats routine has diminished significantly. I have great trepidation in doing these because of falls in the past. It is great that I live alone because when I do fall it is not in front of anyone. However, I will find a wife someday, and this solitary and secluded life of mine will change.

I would guess that this lessening of my routine is also partly due to the size of my new house. My new home is over 1500 square feet compared to my old house at 1000 square feet. Every point in my old house was extremely close to where I did my exercising as I did them in a central location. Currently, the place that I spend the most time and where I exercise these points are at a considerable distance from each other.

The definition of a loser is a person who losses. In this case, I know that I have lost some things and could technically be called a loser, but I have gained more than I have lost. My losses though significant have been well worth the sacrifice. At the same time, there have been several substantial gains as my body has become stronger. My new upper body power helps me with everyday tasks and complications that I face both expected and unexpected. Also, the emotional gains have been tremendous, and in turn, they too have been worth these losses.

If you do not sacrifice for what you want, what you want becomes the sacrifice.

A sad face, not a sad disposition…

dipressionIt is well known that I was once in a dark place filled with loneliness, heartache, and desperation. I was in a position of solitude that forced me to contemplate and question everything and even think about the final curtain call. I quite literally had nothing in my life except for my television for needed entertainment. My desperation desired social interaction that was filled by telemarketers who cannot hang up and must wait for you to disconnect first. Many of my days were filled not with unloading my issues onto these phone salespeople but forcing them to drag out their sales pitch. I got entertainment in any place that I could.

I kept my blinds closed, and my long days would meld into long nights blurring the lines between days of the week. I ate so little and lost so much weight that I thought that I might fall through a sewer grate and felt that I should routinely carry spelunking gear. I wore an emaciated bodysuit like it was Prada, and I was walking out of Sax Fifth Avenue in New York.

It took me many years of sad solitude and seclusion to land in this destination filled with desperation. To find my new torturously tormenting position in life, I needed to stew in a bath of boiling anguish and hopelessness. It did not happen overnight, but I marinated in heartache for years until my melancholy turned into misery. However, this is in the past, and I am working hard to make sure it will never again return.

eggshell walkIn the past several weeks, I have felt like some people around me are walking on eggshells and watching what they say. It is like people just learned of my horrific history and fear that I could backslide into my pitifully punishing past. These individuals seem to be attempting to keep me from slipping down the dark rabbit hole called depression by giving me unexpected praise. It is like they are trying not to say the wrong thing and avoid upsetting me, but they can rest assured that me spiraling back into that dark place is unimaginably unlikely. I understand that these actions mean that a lot of people care about me and want an impeccably engaging life for me, and that means a lot. On the other hand, the eggshell walking is not needed and should only be done after making eggs.

I now have things going on in my life that were only a dream back during my dark days. For example, I swim three days a week, which I could not objectively do four years ago. The pool is great for me physically, but also mentally as I interact with my classmates, and sometimes we even go to lunch together. I also talk with many other community center members who know me from us talking whenever possible. I am in the water exercising for two maybe three hours a day and have seen more positive results than negative ones.

I attend a weekly contemporary church service and have made many friends expanding my social circle. I periodically participate in plans pertaining to the church and various outreach programs to help others. I am a member of a small group affiliated with the church that meets typically one night a week. This action once again helps me to enlarge my group of friends. I am also a member of a men’s group that meets once a month in a public restaurant for breakfast once again, raising my list of friends.

I have a blog that genuinely takes about a week to complete each entry, and I make sure to dot my t’s and cross my eyes. There is also a substantial amount of research that is involved in some of the topics. All of this means that I do not watch the TV that I used to make my life does not revolve around the television schedule, but my schedule.

aaa houseI am now the proud owner of a brand-new house in a new neighborhood that is close to nearly everything. My new residence is actually wheelchair accessible, whereas my previous house was pretend adapted. An entry ramp for wheelchairs and no carpeted floors does not make an acceptable house for those in wheeled chariots. It is also a connected home that absolutely helps me with all of my daunting daily duties in various ways making my life much more comfortable.

There is a new paratransit system that is so much better, making it extremely convenient to get from one place to the next. No longer do I need to plan for hours of extra time before and after every appointment. A fifteen-minute meeting could not happen as there was a two-hour minimum, yet that time restriction was lifted. This new paratransit system has unlocked a whole new and undiscovered world that allows me the freedom that otherwise was impossible.

The last positive task that has become massively important in my life is mobile food procurement. This tasty transport technique gives housebound homebodies access to the plethora of food options available. Simply said, delivery is king for both groceries and restaurant meals making food more attainable.

inaciousNot to mention the personal physical challenges that I have faced and defeated. The list is two down and more to go as I do not know yet what they are. I completed a 5k in my wheelchair that several said that there was no need to try as honestly I could not do it. I swam to raise money for the MS Association several months after learning to swim without the aid of my legs. I set a challenging goal to swim two and a half miles and crushed that target by swimming eight miles using my upper body only. I do not know yet what these future ambitions will be, but the possibilities are endless and my tenacity relentless.

sunshineSo as you can see, I had nothing going on before causing crushing contemplation. My life and in turn, my brain was empty so many years ago, and that allowed torturous turmoil to take hold in my mind. I currently have so much going on that visiting the darkness of my past is an impossible imposition. Sure, just like everyone, I have sad times, but nothing even close to the mournful moments of my history. All in all, I am a happy person who has way too much going on to follow the rabbit from Alice in Wonderland down the rabbit hole.

Sometimes a sad face is just a bad day.

Delivery chivalry …

ggogleI have spoken about how technology has advanced and helped us in life tremendously. I told how fantastic futuristic inventions have made my life significantly better in various ways. It has helped me open and close blinds that are out of my reach and lets me answer the doorbell without being there. Using this tech verbally, I can set a reminder, check the weather, and I can listen to music or call for help. With these advancements, I can turn on lights, the television, and I can open the garage door and in some cases turn on ceiling fans.

When I was a kid, I knew a senior woman who desperately depended on others for everything. She could not drive a car, and her handwriting was horrendously hideous. These assisting people were needed to drive her anyplace that she needed to go like shopping for food and clothes. Others even helped with her many money matters. These people assisted her by writing her checks, pay bills and open and read her major mail.

appI am a very private and independent person who does not want to break that privacy palisade. However, in this world of “there is an app for that” there is no issue of concern for keeping my things private. I have a banking app and scheduling app; there is a budgeting app and a delivery app. My app list has a library app and a photo app and even an app for reviewing all apps.

My banking app allows me to pay my bills by setting them up to be paid automatically or as needed. I can write checks, pay individuals, or schedule a transaction for a later date. I can transfer money or have a cashier’s check written all with the help of my banking app. My online financial institution is also open 24/7. This action means that on occasion, I can call with questions if an account query puts me in a quandary.

I have food delivery apps that will deliver dinner from a diner or other forms of nutrition next week. I used to need treasures for tipping and papers for purchasing, but that is now a thing of the past. I simply open the app for groceries or meal time and pick what, where and when I want it. It has my credit card information and even allows me to tip all with the push of a button so no need for cash. Food delivery is realistic, not futuristic.

There are two types of food delivery apps, and the first one delivers groceries. It is extremely elementary and has very little of a learning curve. You download the app and follow the simple directions for setting up an account, including adding a credit card and choosing the store that is closest to you. Although this priceless process is plain, it can also be particularly problematic.

When most people grocery shop at the store they can roam like nomads wandering through the desert. On the other hand, if a list is made and an item was forgotten a lazy stroll through the store might give a required reminder. When ordering with the app, you cannot accidentally see it on the shelf and remember it. Also, a plethora of profuse purchases provoked by hunger shopping is very unlikely. As you are strolling through the app, you will only be reminded of things like hotdog buns and chips if you buy hotdogs.

trackNext, there is an app for delivering a delicious dinner, a luscious lunch, or any meal in between. Some restaurants even offer their app with a delivery service, yet the choice is yours on who you should use. There is a similar systematic strategy for setting up all of these applications. You download the app and signup for an account, giving them any of the addresses that your meal will be delivered.

When you are hungry or want a snack simply open the app and find the restaurant that you crave, and that is open. Browse the menu or menus that they offer and find the enticing edibles that you desire and add them into the cart on the app. Once you have all of the vittles from the restaurants that you want in your cart and press the place order button.

A series of events are then set in motion from that one button push that manipulates mealtime forever. Your order is then sent to the restaurant to begin prompt preparation to execute it expeditiously. Before your order is ready, they send out a message through the delivery app to let drivers know that it is prepared for diligent delivery. At that point, a driver comes to the restaurant and picks your meal up for a quick quest to find your house. While it is being transported, you can track the driver in real time.

end o blogGone are the requirements of getting dressed, going into public, and having a sit-down meal. You can have fast-food for one or slow food for ten all delivered for your convenience. I feel that I was born at the right time as I love my independence and not requiring help from others for these tasks. I cannot wait to see what technology comes up with next.

The future IS now.