Horribly hidden hits…

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 others do not see, perceive, or believe they even exist.  Two of the primarily posed comments are you do not look sick; you must be okay, or even, I know someone with MS, and they do not complain like you.  These statements drive MSers insane and can cause us to stand our ground vociferously in defense. All people with multiple sclerosis are different, so if you know one person with MS, you only know one example of this inexplicable, unpredictable medical condition.

I have been a member of several local MS support groups and currently in various MS Facebook groups. In the following blog, I will do my best to explain the experiences of those dealing with these conundra-causing covert complications. I am in a wheelchair, so rarely does anyone question the unseen symptoms impacting my life. First, I must help defend my MS brothers and sisters by spreading my words to the ill-informed masses.  I hope using my words can do justice for all of us warriors struck with multiple sclerosis.    

In the 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 continually taking from every aspect of our daily lives.  Our courage gets questioned while our pride is persecuted as we struggle through our every movement.  We endeavor setbacks every time we attempt to take one step forward, not backing down from the fight for our very existence.  Most people will never know or understand the debilitating issues 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 hitting out of the park 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 could choke and kill us if not followed.  Like a pitcher watching the catcher’s hand signals, 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 tonight be the night ending in an ambulance trip.  These constant concerns continually capture our consciousness because the risks can be dire if not followed.  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 react to our locomotion.  Will the next treacherous step we take land us in a motorized movement machine changing 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 a symptom with 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. The explanation to me was a python that wrapped itself around you and squeezes. The squeeze is hard enough, so every lifesaving breath is excruciatingly exhausting. These breathing complications are not only challenging, but they can last for weeks and, from my understanding, even years in some cases.  It was detailed 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, severely impacting my multiple sclerosis family. The pain some MS patients go through is so torturous they need a properly positioned pain patch.  They might even require some other form of continual pain soothing medication to dull the suffering though barely.  In life, most people know the mundane pain of a headache, stubbing your toe, or maybe even a broken arm.  However, the pain of those with multiple sclerosis continues forever, yet we have learned to smile through it like the warriors we are.

Most people have been tired from a long day at work or f from a vigorous workout. However, from an 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.  Fatigue impacts parts of our lives we do not always expect, like it can make us ridiculously weak. For example, I have been so tired my speech gets significantly slurred and hard to comprehend. This complication causes a need to close my eyes and rest for at least ten minutes as soon as it is physically advantageous. If I do not find relief, my disabilities can get excessively worse, requiring a more extended respite.  

I hope I have done justice in explaining some of the invisible symptoms plaguing some multiple sclerosis patients.  My MS brothers and sisters and I courageously combat these unseeable issues like the battle-tested warriors 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.

I understate, not exaggerate…

Disclaimer alert: I have visited the darkness, stood on the ledge, and peered over, questioning everything deciding if I wanted to continue on this road called life. After coming back from looking into the eyes of the Ender, I chose never to question things the same again. I say that to say this, my struggles may be daily and seemingly endless, yet my attitude reminds me every moment’s misery is a choice.  In this blog, I discuss these situations light-heartedly yet do not mistake my jovial attitude as total ignorance towards the challenges of my life. I am not saying my life is more complicated or even more straightforward than anyone else, we all have difficulties, but they are all different. Lastly, do not look at a person with MS or any medical condition on a TV show or movie and think it is accurate because it is not.

People periodically pose a perplexing query to me. Occasionally others say I probably exaggerate my blogs to be more impactful and wonder what MS is genuinely like. These periodic prods from people primarily push me to clarify the facts of how MS affects me. My life as an MSer is complicated to describe because you will not understand it unless you have lived it. Even others who use wheelchairs may not understand one hundred percent because our chariots are all built differently since our needs vary drastically. So let me share one seemingly simple stint of life for most taking only a few minutes while it becomes a laborious job for me.  On an average day, it will swiftly switch into a daunting daily duty that can take me nearly one hour. 

I wake up and do not hit the snooze button because my mom taught me when I was young, sleeping in is burning daylight, so I get up. I wake up on the left side of my bed, and to get out of bed, it is a wrestling match of Epic Proportion. Sadly, before I even move, my legs go into a stiff spasm tighter than the core of a baseball. I know how to massage it out to make it stop hurting, but the spasm simply stiffens my entire body, so I cannot bend it and must painfully wait it out.

My next challenge is to rotate myself counterclockwise ninety degrees, so my feet dangle over the edge of the bed. Any movement is made more arduous by my leg muscles that constantly play a movement game. Roulette is the game name, and torturing Scott is how it reins the same lame game. As I twist and turn, I grab the bed sheets and pull towards the foot of my bed, and continue the leg wrestling with myself. While I try to scuffle and shuffle on my bed ruffle, my leg muscles take turns tightening in opposing directions causing various problems against my every movement. 

When my quadriceps muscles take their turn, they shoot my legs straight out and stiffen them like I am in a planking competition. I never make any movement quickly, and now it is my hamstring muscles that tighten as I sit up on the edge of the bed. While this muscle tightening pulled my leg in instead of out, causing its own set of problems. This game between my leg muscles pushing out and pulling in means I only have a few seconds before I can expect the next shift. I quickly get proper pad placement and positioning and prepare for my posterior propulsion. I massage my thigh muscles to keep them from spasming for a few minutes as I prepare for my lift and shift. After several additional minutes, I can do a derriere drop directly onto my wheelchair seat.

All of this maneuvering so far has only taken thirty minutes and has moved pretty smoothly, all things considered. So let me stop for the interactive part of the show. Imagine you went out to dinner with some friends and you had some food that did not agree with you. When you get up to rush to the bathroom, the previous scene is keeping you from quickly getting to where you need to go. Could you make it to the toilet, or do you have to make a sixty-minute clean-up part of your morning? Some of us do not have the luxury of deciding and is chosen for us. And it is never the easier path.

Next Interactive part. Preparing for bed, you must take off your day clothes and put on your PJs. First, sit on a high-back chair and try to remove your clothes without standing or getting any assistance from your legs. Then after you remove them, put on your PJs while continuing to sit without the aid of your legs. For some wheelchair users, this is an easy task, yet for some of us, it is not.

It is difficult when you are in a wheelchair to clean up a big mess. Let me clarify when you are in a wheelchair and you live alone, every mess is a big mess. For example, the other day, I tried to scramble a couple of eggs and microwaved them when I dropped the mug and raw eggs onto the floor. It took me just over half an hour to clean up as much as I could. I then had to have a friend come over and clean the rest of the eggs. My friends and family are few and far between, but they can attest that I do not discuss this kind of stuff with them. I only talk about things if I can make a joke out of it and make light of any situation. I never want to be seen as the constant complainer or playing the woe-is-me card or even looking for pity, making people want to avoid me. Life is ever-changing, and life with a medical condition endlessly evolves like the numbers on the stock market.

Disappointments are inevitable, but misery is optional.