What the MS?

By Scott Cremeans

One of the most significant issues with multiple sclerosis is the many hidden symptoms that lead to accusatory statements. The invisibility of these MS issues means that many times others do not see, perceive, or believe that they even exist. The two primarily posed comments are you do not look sick; you must be fine or, I know someone with MS, and they do not complain like that. These statements drive MSers insane and can cause us to stand our ground in defense vociferously.

I have been a member of several local MS support groups and 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 must help defend my MS brothers and sisters by spreading my words to the ill-informed masses. I hope that using my words can do justice for those of us warriors that were unjustly stricken with multiple sclerosis.

In our multiple sclerosis family, we deal with an excess of dilemmas and even daunting doubt from others. On a good MS day, it is merely a beastly condition that continually takes from every aspect of our daily lives. Our courage is 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 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 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 this be the night that ends 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 will react to our locomotion. Will the next treacherous step we take land us in a motorized movement machine that changes our lives forever? We think about the terrors while we are awake and maybe get a reprieve when we slumber. This respite from our day-mares is only if the sandman does not brutally bombard us with cruel memories of what we will never be. So much depression forces us to cry as the rivers of fears turn into oceans of tears drowning out our thoughts of survival.

There is also a symptom that has a perfectly pleasant name but has devastatingly diabolical impacts on the MSers body. MS Hug is the name of this symptom, and physical terror is its game. It was explained like: 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 even years at a time. 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 that severely impact 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 that might barely dull the suffering. 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 exhausted from a vigorous workout. 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. Fatigue impacts parts of our lives we do not always expect like it can make us ridiculously weak. I have been so tired that my speech gets significantly slurred and hard to comprehend. This complication causes me to 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 longer respite.

I hope 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.

*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 funnies. You can read more about his MS journey by visiting his blog www.myramblings.blog where he muses about life in the slow lane with his literary wit.

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About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.â„¢ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Managerâ„¢; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

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