What the what???

I have heard that some people think that MS is contagious like a virus. This ignorant thought can cause people to avoid us. Others believe that we have mental problems making them ignore us. Some have thought multiple sclerosis is more than just an illness. This lack of knowledge may encourage them to shun us.

People can quickly put their foot in their mouths when interacting with people with disabilities. This action is because they think that they know but they have no idea. This bad behavior is noticed if medical issues are visible like using a cane, walker, or wheelchair. The humor comes in when they pretend that they know. I heard it once said, “It is better to keep your mouth shut and appear stupid then open it and remove all doubt.”

The other day I woke up on a swim day and something felt a little off. I had a challenging start to the day, but I was not about to give in. I was moving slower with a hint of weakness in my arms. Thankfully I always plan for an extra thirty minutes or more for unexpected MS and life issues.

COTA made me over an hour later to the pool than usual. At this point, I was late, starving and flustered. After this frustrating morning I finally was ready to get into the pool. I pulled up next to the chairlift and should have paid attention to the warning signs. As I transferred to the chairlift, I landed very close to the edge in a precarious state. Within a microsecond CRASH and down I went hitting the concrete floor. I did not say anything, but I hurt my hip and my hand a little. Sadly I hurt my pride much more that morning.

I have been a member at that pool for well over a year. In that time I have never dealt with a debacle like that. I say all that to say this: there was an older woman in the pool and her first words were “you should get a caregiver.” I had spoken with her several times before so I had to remind her of my situation. I let her know that I live alone and one hundred percent take care of myself. I explained that this was the first time that I have ever had this happen at the pool. I told her not to worry if I show no fear.

When a friend found out that I was diagnosed with MS, they asked me “how long?” “How long what?” I asked. “How long have you been given to live?” they clarified. I had to explain that multiple sclerosis is not a death sentence. I told them that I have the same life expectancy as everyone else. “I will live longer than some people and not as long as others.” I explained

When I was planning to move someone said to me “you should move into an assisted living facility.” “Why” I questioned. “because of…you know…your MS” they said sheepishly. I reiterated that I live alone now with no problems. I reminded them that people live with this condition both alone and with families all of the time.

Right after my diagnosis, I was assisting someone with their kitchen remodel. My friend had a buddy visiting. This guy kept staring at me all day like he thought that I would go into a seizure or something. He never said anything to me but stared hard at me his entire visit.

A friend who also has MS was shopping and was using a walker. A little girl saw her and asked her mom “what is wrong with that lady?” Her mom grabbed her and said, “Be quiet.” My friend went up to the little girl and nicely explained so that a little kid could understand. At that point, my friend looked at the mom and said “I would prefer to be asked then avoided.

Just the other day I was explaining an MS issue to a woman, and she was surprised by the facts. She was surprised and told me that she did not know. This woman knew what she did not know and was not afraid to admit it — what a concept. “You learn something new every day,” I said.

I think that people act the way that they do around the disabled because they do not know what to say or do. I understand that feeling to a point. What I mean is that you may not know what to say but just talk to us. We are like anyone else when you speak to us we will return the conversation.

We do not fear the unknown. We fear what we think we know about the unknown.

I am sorry…

I feel like a fraud that is somehow scamming the system. It is as if I went to a loan shark to gamble with my health and in turn my life. I fear that Bubba and Guido will be coming to collect very soon on this massive debt that I owe. It feels like at any moment MS will pound on my door causing a life-changing and earth-shaking rumble. This foul beast could come any day now to collect and leave me with very little if anything.

Let me tell you why I feel this way. You may have read the blog series that I posted called “My Untold MS Story.” If you have read these blogs, then you know the depths of darkness where years ago I was imprisoned. I have come back from this dark place that no human should ever be. I lived and can tell the story like a bee doing a dance telling of possible pollen prosperity.

I currently sit here as a survivor of several tremendous accomplishments for any MSer. I have conquered these mountains while my MS brothers and sisters suffer from this abhorrent affliction. I am doing well while other MSers struggle to do basic daily tasks. For some, it is a challenge physically and mentally to get out of bed in the morning.

I too have challenges, but I have accepted and adjusted as needed to deal with these struggles. I am aware of my daily daunting difficulties and realize that there are no alternatives. Is it my new attitude or just my length of time as a multiple sclerosis patient that helps me keep moving forward? I would say that these two issues work hand in hand to make my MS life manageable.

We all need to remember that there are those with MS who go to work managing an office every day. Do not forget the plethora of people who have a spouse, children and even still drive. There are also individuals with multiple sclerosis who can continue to play sports or hunt.

We must keep in mind that we all need to run the race that is before us. The challenges that we face are ours alone. We need to be mindful of the fact that no one can meet these troubles for us. Everyone has unique struggles that they face on a regular basis. Every MSer has issues that are different, and others may not even comprehend them.

I have been fighting multiple sclerosis for over seventeen years. I will not feel sorry that my difficulties are now less challenging for me than others with MS. My struggles are no less significant than other MSers they are just different. I shall not apologize for being less visibly “sick” than others with this condition. I have been all over the disability spectrum and have the battle scars to prove it. I have learned and continue to learn daily from my struggles and frustrations.

All MSers suffer from daily struggles and challenges in our own way. Only we can decide how much to do and how hard or far to push. Every case of multiple sclerosis is as different as night and day. This fact means that one MSer cannot compare themselves to another individual with MS. Multiple sclerosis no longer controls my life. Now I do my best to steer my life around any MS obstacles and exacerbations.

Do not compare your chapter 1 to someone else’s chapter 20

The Causation…

My perpetual pushing produced problematic MS issues after this swim. I say “my” because I did this to myself so I have no one to blame but me. I must live with these punishing consequences for not backing down from this fight. Some may call these problems exacerbations yet no matter what you call them they are truly taxing for everyday life.

First, I have had a significant increase in leg muscle spasms. As I climb into bed, my legs begin to jump. Before this swim, a leg spasm for me was relatively mild and might only be a shake. Now, these spastic legs look like a baby rattle in the hands of a baby hopped up on Red Bull. I try to stop my antagonistic appendages by grasping them tightly with my hands. Occasionally that procedure works until something sets them off again. Thankfully this “shake rattle and roll” only lasts for a few minutes before I doze off.

Second, there have been those rare occasions that I go to bed and do not get these Jurassic jerks. The other night I went to bed, and my legs were mostly relaxed. As I lay my head on the pillow dosing in and out something new startled me. Like someone tied a rope to my knee and quickly pulled it toward my head. It looked as if one side of me was trying to march.

I pushed the leg back down and began to watch the sandman pull on my eyelids again. Another mega twitch happened but this time from the other leg. This jolt was another attempt at a very slow horizontal march. This back and forth dance went on for about five minutes. Luckily for me, this was on the night that we set our clocks back and gain an hour.

Third, I have also dealt with significant muscle tightening. Using the chairlift at the pool has been extremely annoying at times. As it begins to lift me out of the water my legs stiffen up like a piece of driftwood. I need to give my legs time to calm down so that they start to bend towards the water. All of the while I sit perched on this chairlift on display like a piece of meat at the butcher.

The simple act of walking that so many take for granted is essential. There are several physical benefits from walking for the biped community. The act of walking is often taken for granted by people. Sadly, we do not always realize the importance of keeping our bodies moving. This constant flexing as you walk is how blood gets pumped back up and to your heart. Since my legs are lazy and I do not walk the lower part of my legs are red. In turn, I am supposed to flex my ankles often to mimic walking and receive the benefits.

Next, ankle weakness sounds like a strange issue. It is even more of an odd affliction for a person who is not ambulatory. The muscles around the foot build and maintain its strength from the action of walking. Without walking the muscles on the outside of the ankles begin to get weak. When this happens, there is a pull from the muscles on the inside of the ankle. The foot will start to pull in and upward. That action makes this person walk on the outside of their foot. To counteract this action I exercise these muscles often. I do this to keep both of my feet flat on my wheelchair footrest.

Finally, my hand weakness is milder in comparison with my other issues. I notice this weakening mostly while I eat. Occasionally I sit down to eat and my weakness flairs up towards the end of the meal. That is the only time that I notice this issue enough to take note. I still self-propel my wheelchair and do nearly everything else for myself. Other than while I eat I am only aware of a few other minor hand issues.

I have returned to the water movement class that I was taking previously. I have not exercised my legs in a month, and I can feel the lack of strength. The truth is that I may not do another fit challenge in the future. I am not sure that I am willing to put up with the physical repercussions from these fitness challenges. I am eager to see how long it takes for my body to recover. I will continue to exercise for the health of it. Not enough people truly understand the plethora of physical benefits of exercise. Even Dwane “the Rock” Johnson would deteriorate without continual fitness regimen.

You are free to choose, but you are not free from the consequences of your choice.

This change is uncomfortable…

We all remember that song that says “the knee bone is connected to the leg bone. The leg bone is connected to the hip bone.” This simple song is a reminder to us all. It tells us that our body parts collectively work together to make our every movement happen. This melody explains that when one muscle has an issue, it will impact other parts of our body as well.

Temperature consistency is a difficult thing to find here in central Ohio. It is especially elusive in the spring and fall season in the outside thermometer. The ever-changing weather this time of year does not make life easy for me. Temperature swings are so drastic that you need a coat in the morning then shorts and a t-shirt by lunch. These spastic swings on the thermometer put my body into a rapid tailspin at any given moment.

For energy savings, my thermostat drops significantly at night. The bothersome part is that this nighttime temperature is too cold for a bed sheet alone. However, it is too hot to be wrapped in a comforter. I tried to cover up with my bedspread once, and it zapped my strength and energy significantly. In the morning it took me over five minutes to make a basic transfer into my wheelchair from the bed. I found that most times it is best for me to use the comforter up to my waist and the sheet on the rest of me.

Most MSers do not like the heat. As for me, I can deal with the heat easier if my body has had time to acclimate to the warmness. At the beginning of this summer, the air conditioner in my house was not working correctly. Sadly, I had to wait several days for the repairman to fix it. While not overly hot it allowed my body to adjust to the warmer temperatures very slowly. It was also extremely beneficial that this summer was not absurdly hot as it has been in the past.

The heat is not the only temperature that has a negative impact on my body. The inconsistency of the weather is what exacerbates the struggles of my body. The unexpected cold weather also puts a damper on things. There have been days where I needed a coat in the morning, and by the afternoon I needed a pair of shorts. These temperature swings can play havoc on my MS body and turn my abilities upside down.

The indecisive fall and spring seasons are hard on me physically. These two seasons cause my muscles to be weak and sluggish. A fall day starts with a winter chill in the morning. Then comes the t-shirt weather by lunchtime and closes with scarf weather.

A few weeks ago it was cold in the morning, so I wore a coat to church. I hopped into the small SUV with no difficulty as the morning felt nice. Three hours later I put my coat back on to go home, and MS decided to rear its ugly head. I pulled up next to the SUV and prepared to do my vehicle entering routine. I quickly felt a leg muscle flutter, and I knew that this would not go well. I stood up next to the seat, and everything seemed ok. As I reached for the handle above the passenger window, I began to slide back. I quickly looked up and grabbed the handle stopping my slide. At this point, I started to fight the losing battle of pulling myself up into the seat. Luckily my driver was right there and quickly sat my seat on the seat.

The result of my overheating was that my legs had a severe muscle spasm requiring us to wait. This prostrate position made my posterior nearly slide off the spot. These appendages of mine stiffened up tight making it difficult for me to keep my seat. My legs needed a minute before they would accept the required bending to get into the car.

That evening at trunk or treat the temperature was nicer, and I was not wearing my coat. This temperature made getting into the vehicle that I was picked up in a smooth endeavor. The rain caused us to pass out candy in a church hallway. The warmness of the corridor made me nervous about getting back into the SUV. However, they had to move things around to make space in their vehicle. I was able to sit by some double doors that were open allowing me to feel the cool breeze. Getting back into the car was surprisingly simple and very little assistance was needed.

So my moving, sitting, and transferring skills are as changeable as a Rubik’s Cube. All of these movements of mine are very much dependent on the temperatures. However, I try every morning to wake up with a smile on my face. I do this in anticipation as to what challenges I will face on any given day.

When you have multiple sclerosis, you must get comfortable with being uncomfortable.

Constantly changing MS, three updates…

Update number one
My life with multiple sclerosis has been ever changing. Five years ago I did not have the arm strength to get out of even a wet paper bag. This weakness did not allow me to maneuver in and out of a simple sedan without great struggle. I lacked the know-how and the skills needed to transfer to and from my wheelchair and a car correctly. Sadly car manufacturers still have not accepted my idea of a slingshot device for help with this. This mechanism would shoot me into an SUV from my wheelchair. A catchers-mitt would help catch me on my way out.

At that time the only vehicle that I physically could enter and exit easily was a small SUV. It was because my legs could hold my bodyweight steadily. I merely stand next to the SUV grab the handle above the passenger side window. Holding the handle, I simultaneously hop up and pull. This procedure would land my rump on the seat where I physically grab my legs and swing them into place.

This situation might sound like an odd thing to celebrate, but sometimes it’s the little things. Now that my arms are much stronger I can get into most sedans with ease. I also have the skills to know where to place my hands and when to launch my derriere into the drop zone. There are of course caveats to everything in life and I occasionally still struggle a little. However, with my new upper body strength, it is easier to properly place my posterior.

Second update
Now I can swim a significant amount without any detrimental dilemmas. This improvement is the result of the way that I approached my swim training over the years. From the beginning, I moved cautiously and deliberately s-l-o-w. I started by doing two years of languid regimented movements. I would continually alternate between ten minutes of a light leg work out and a ten-minute chat session with a classmate.

After a year of that light training, I began attempting to walk in the pool slowly. Two ladies in my class started helping me walk ten yards to keep my legs from losing strength. I walked with the assistance of these women two times each class for another year. This walking was in addition to the slow leg exercises that I was doing on my own.

Every step that I made in my water fitness training was with planned patience and purpose. I was aware that my MS made it necessary for my growth and gaining to be gradual. Yes, I went from zero to sixty, but it was over a three and a half year timeframe. This slow exercise regimen progression helped my body adapt and overcome the fitness training.

Final update
I took several real hits from MS during my swim challenge. These hits were a persistent weakness of my legs, arms, and hands. The same day that I swim, I am much weaker, but the next day I recover 90% of my strength. I did this MS swim not to impress anyone except myself as multiple sclerosis stole nearly everything from me. This challenge was a way for me to stand up (so to speak) and say “Not this time
MS! This one is mine!”

I do not know how many-if any-of these physical challenges I will want to do. I have now done both a 5k and this swim challenge with my MS riddled body. I hope that my body will recover from this swimming challenge, but it will likely take time. I understand that these new difficulties are a result from my own doing. However, the pride of saying that I did something that I never thought that I could is life-altering. I will not sit on my laurels to rest but will reduce my workout intensity immensely. Only time will tell what the future will hold for me, but I plan to keep moving forward. I will continually do whatever is needed not to let multiple sclerosis control my life any more than necessary.

Challenges are what make life interesting, overcoming them is what makes them meaningful.

Hey Cupid, come back you missed!!!

Having to say those dreaded words: “table for one please” is the worst feeling in the world. The issue of romance and MS has been a significant topic of discussion for an extremely long time. I have never done a blog on the subject because like a schoolgirl watching a horror movie I fear it. Since I am as confused as most on the topic of love I thought I would discuss it from my perspective.

The meaning of love is subjective. I have seen arranged marriages or even people who wed out of convenience. Both couples say that they genuinely love each other. I have heard some couples say that they eventually came to love their significant other. I also saw someone who was asked if they love their spouse and this person just said “sure.” Neither of the last two examples sounds like love to me, but who am I to judge.

The idea of love for those of us with many medical conditions is a twisted torturous topic. This concern of finding our forever love depends on one’s personality. It also is dependent on how visible their symptoms are to the outside world. It may be easier to discuss less apparent symptoms with a date. It could be as simple as you wobble and need to sit down occasionally.

For me, my MS is more impactful like my visible-to-everyone wheelchair. However, it could be my less obvious distance vision concerns. On the other hand, I am not sure how else my MS will impact my life since I rarely get out. I have always been a little shy, and my multiple sclerosis and wheelchair have pushed my trepidation to heights unknown.

A major concern of mine is that I do not drive. The idea that I must ask a date to pick me up for our dinner is difficult. Like if I was asking my partner to cut up my steak for me, it feels awkward. It is annoying enough requesting a date to deal with a guy in a wheelchair. Society is now beginning to accept the disabled in everyday life. Coping with wheelchair life is not for the faint of heart. That being said, I fear to have to put that burden on anyone else especially a date.

I do not get out and experience very much in life. I go to doctor appointments at the local veterans medical facility. That is not a place to meet the ladies unless you are a boldly confident extrovert. I do go to church once a week and occasionally to an event that they hold like trunk or treat. Most of the women that I interact with at the church are married or much older.

I spend much of my time at the pool in the hours that most individuals my age are working. During these work hours, I rarely see people let alone women my age. Occasionally when I do see a woman my age at the pool, she is there only once. I do not have the confidence to ask these women out the first time that I see them. After they are gone, I often say to myself “the next time that I see her I will ask her to dinner.” At that point, all of the courage in the world means nothing as I never see them again.

I tried the anonymity of online dating and found that I do not have the right words. I do fancy myself as a budding linguaphile, but I do not possess the verbal skills needed to attract even a starving dog with food. I thought that being anonymous during my online search, in the beginning, would allow them to see me first and not my chair. I assumed that if they heard the fumbling and bumbling guy that I am, I would sound normal like most guys. Sadly I did not get a chance to talk to them at all because they never replied to my messages. Apparently, I am not an internet dating guy.

They say that love is hiding behind every corner. Sadly, I must be walking in circles. I am pretty sure that I will not be single forever. Others often tell me that I am a good looking guy with a great smile and that I have a lot to offer. I wish that this dating thing felt less like swimming in quicksand and more like swimming at the local pool.

When I was on the assembly line for my creation “confidence” was on backorder. They decided to upgrade my smile and my personality to aid in my dating life. Sadly it is not the same and has not helped at all.

“One day someone will be 100% honest with you and will love you forever, so don’t give up trying to find them, they’re looking for you too.”

Two friend conundrums same low price…

I would rather walk three miles in the dark with a friend than one mile in the light alone. There are many types of friends, and they all have their specific place in one’s life. We have good friends and not so good friends, text friends, and best friends. There are phone friends and lone friends, school friends and cool friends. There are work friends and camp friends, church friends and nerd friends.

Each of these friends has their strengths, and they tend to stick with those characteristics. They can move from one zone to another although it does not happen often. A work friend can become a best friend, and a lone friend can become a cool friend. Most days I feel like life is a soup and I’m a fork.

I feel that it is essential to have a variety of several types of friends at all times. It is crucial to have good friends in all aspects of your life. For example, I have swim class friends and church friends, but I seem to be missing a few other types. Yes, those friends are important, but I am lacking game or movie night friends. I have a deficit of “let’s get lunch because it is Saturday” friends or “let’s hang out cause I need a new pair of shoes friends.”

Some people may say that if I had a wife much of my friend deprivation would be resolved. I understand and sort of agree with this hypothesis. I look forward to the day that I have a wife. Although I will not rush into a bad marriage just to fill the echo chamber within. However, there is a critical twist to this conclusion. It is good to have time apart from your wife meaning I am still in need to somehow fill this void.

When I swim, it is during daytime hours. This means that meeting people my age is a rarity at the pool where I spend a huge part of my life. I am betting that most people that are my age are working. I am not sure what the solution is to this dilemma. This complicated conundrum will cause my continual contemplation.

Switching to my second situation

I find myself in an interesting circumstance as I continue to swim laps. In a word: lonesomeness. It is different being home and alone as opposed to being in the pool and in a solitary situation. When I am alone at home, I have things to do like work on my blog or even do laundry. Some days there are people in the pool and many times not. The previous shows how it feels when the pool attendance is low like being in the emptiness of space.

In the class area, I can hear my fitness group. I wish that I could join them in their reindeer games. I will be swimming laps for my fundraiser for a few more weeks as I am at the halfway point. I will be extremely proud of this accomplishment like I was when I did the 5k in my wheelchair. However, I am bored out of my mind of the continual solitude that I feel. Humans are social creatures and even though I am shy I too enjoy palavering with the best of them.

Strangers can become best friends just as easily as best friends can become strangers

Plenty of pains can I get some gains???

The further that I get into the swim for MS challenge the more that I get hit with physical difficulties. So far these struggles have not been significant enough to make me want to stop swimming. I have spasms in my legs more often than I used to. When my legs spasm now they look like they are in a river dancing competition. My routine of standing exercises that happens at home hourly has been happening less often because of a few falls. I find myself cautiously slowing down my transfers to eliminate the chance of tumbles.

I try to do squats in the pool as it is safer to exercise in the water. It is imperative to make sure that my legs can continue to bear weight. However, these leg building exercises have not been as successful as I had hoped. Since I have had MS for seventeen years, I am more willing to take some risks. I now keep all of my movements deliberate preventing possible problematic perplexities.

When I first began doing laps in my swim class, it was after two hours of exercising. I soon saw severe physical problems at home. I quickly lessened the intensity of my workouts to help aid in my recovery. It seemed that I recovered from most of those rapidly. However, there were some ineradicable issues.

I do not have to worry about my physical challenges impacting anyone else. I know where the stopping point is and will not cross it as there is no one at home to aid me if I take it too far. Think smarter not harder.

We all make daily decisions that could change our lives. These choices can take us down a sunny or even a dark path if we make the wrong decision. Sure there are the less impactful simple queries such as do I want to use a paperclip or a staple. Then there are the more significant options that can alter our lives forever. Do I want to tell my boss off and quit my job? Or do I bite my tongue and make the changes that he requested of me once again?

My final goal is to swim over six and a half miles. The debate that is currently going on in my head is: will I lose or gain more from this swim challenge. I do feel that in the long run, I will get stronger. I may have a few setbacks, but I believe that they are setups for what my future has to offer.

The struggle that you are in today is developing the strength that you need for tomorrow.

The Inconspicuous side of MS…

I occasionally deal with those that see me in my wheelchair for the first time and talk to me like I am five. “Hi, and how are you doing today?” people ask. I answer like they are two. “Wow look at the grown-up clothes that you are wearing today” I comment. That usually goes over like a lead balloon at first. After a few minutes, some people smile sheepishly and apologize in embarrassment. I believe that when non-wheeled individuals see someone in a wheelchair, they make many incorrect assumptions.

The following is difficult for me to talk about because my MS issues are more evident than other MSers. Many with multiple sclerosis have symptoms that are not visible. These hidden symptoms cause many who are not sick to distrust MSers. The ill sometimes will say that they are too weak to do something. At that point, the word liar gets tossed around like a ball in a dodgeball competition.

Wheeled individuals do not deal with the same disbelief and distrust from the unseen MS symptoms. The majority of my MS issues are conspicuously on display for all to see. I do remember my early years of dealing with the doubt that comes from some non-MSers. That being said, those of us in wheelchairs have our battles with to contend.

MS has many symptoms that are common yet invisible. Many multiple sclerosis patients battle with a lack of trust, because some individuals who are not sick have more assumptions than facts. The fact is that a MSer can be negatively impacted quite rapidly by unseen symptoms stirs doubt in non-MSers. Many times people with multiple sclerosis have abilities that vanish without announcement.

Take fatigue, for example. This symptom has no outwardly visible signals. Fatigue is a feeling and not an apparent issue. It is not merely tired from staying up too late or working too hard. This deceptive creature can cause a mental or physical lack of energy. Fatigue is a prevalent symptom that is experienced by nearly 100% of multiple sclerosis patients.

Poor sleep is another deceptive symptom of MS. This restlessness can either be the cause or the effect of issues like fatigue and depression. Sleep concerns in its many forms are common in those with multiple sclerosis. Poor slumber can negatively impact the quality of life by affecting most parts of one’s existence. This severely debilitating problem affects both physical and mental abilities. I never understood how lousy sleep could impact my quality of life until MS.

Depression is a term commonly applied to a wide variety of emotional states. These can range from feeling down for a few hours on a given day to severe clinical depression that may last for many years. In its various forms, depression is one of the most common symptoms of multiple sclerosis. From the NMSS website: “in fact, studies have suggested that clinical depression—the most severe form—is more frequent among people with MS than it is in the general population or many other chronic illnesses.”

Depression is also an imperceptible symptom to others. This unrelenting sadness can have catastrophic repercussions on one’s existence. Doctors have said that depression has the most significant adverse effect on quality of life (QOL) in MS patients. It has more of an impact on QOL than disability status, fatigue, or reduced sleep quality. Neurological damage associated with MS can cause this deep sorrow. The list of causes for multiple sclerosis depression is exceptionally lengthy.

These are just three of the most common unseen multiple sclerosis symptoms. Hidden symptoms have caused doubt of many individuals living with multiple sclerosis. Some of the non-sick believe that they must see it like a rash for it to exist.

I have spoken to individuals who have had family members not believe the struggles of the MSer. This distrust is after the strength of said MSers disappears entirely over a short period. I have experienced my energy drastically weaken in only a few minutes. However, I often wonder how a family member can call any loved one a liar.

The bottom line is this: just because you cannot see a symptom does not mean it is not there. Also, do not assume anything about an illness as you will likely be embarrassed in your ignorance. Do not be ashamed but respect what you do not know or do not understand.

“It’s better to keep your mouth closed and appear stupid than open it and remove all doubt.” Mark Twain

What is with my MS body???

I was reading the backstories of some of my fellow MSers and was taken aback. I noticed that before they began their multiple sclerosis medications, they had exacerbations. These flare-ups were sometimes frequent, and often they were extremely debilitating. When these individuals started the MS medications occasionally, the exacerbations nearly stopped.

I am not sure how or why things have been going this positively for me. This is the follow up to my personal multiple sclerosis story. I always had minor stumbles, falls and occasionally an exacerbation that required steroids. In the beginning, I tried several of the multiple sclerosis A-B-C drugs. I took these disease-modifying meds for just over two years. During that time I had significant deterioration and no success in slowing the disease progression.

I began to do extensive research to find everything out there about multiple sclerosis. I was looking for anything that had been positively impactful on MS symptoms. For instance, I discovered that in Florida there was the bee sting treatment crowd. These individuals visit a bee specialist who has a personal beehive. Each visitor will get stung fifteen to twenty places usually along the spine. There was absolutely no chance on earth that I would ever go this route.

There were also plenty of diets that touted to be helpful specifically for multiple sclerosis. Just like the diets for those looking to lose weight the list of eating plans were plentiful. There were even some bodybuilders and fitness gurus that revealed that they had MS. Yet, when they began taking some product like Alans Anti Auto-immune Amalgamation, they became cured. They will then offer to sell the aforementioned product to you for the low low price of $69.99.

I did my research and found an MS supportive diet that would require the least amount of change in my eating habits. It is less of a diet and more of a lifestyle that reduced ones saturated fat intake. This lifestyle also eliminated your consumption of beef, pork and lamb in the first year. After the first year, the lifestyle requires you only to limit the use of those meats.

My continued studies also found a medication that has been safely used since the early eighties. This medication was FDA approved for the treatment of drug and alcohol addiction. The FDA approved it in much higher doses in its inception. I was confident that it was safe in much lower quantities that are required for multiple sclerosis. It was touted as beneficial for most autoimmune conditions as was proven with several studies. I found a prescribing doctor and began to take this medication in 2004 and continue to take it to this day.

I have been on this same medication for fourteen years with no adverse effects. The occasional difficulty still arises. However, ninety-nine present of these issues has been due to my taking unnecessary safety risks. My risky behavior includes things such as poorly managed seating transfers and moving when I know that my body is not ready. Although, I should know better and I do know better I do not actually do better.

Occasionally my legs jump like a first grader hopped up on excessive amounts of Halloween candy. Other times my legs stiffen up like I am a statue of a kicking soccer star. These muscle spasms are something that MS meds cannot stop. Soon I will be trying Botox for the muscle spasms in my legs. I am always searching for things that may improve my quality of life.

I also exercise in a pool three days a week for two hours with almost no negative impact. I know people with MS and other than a mom who chases her little ones around all day, most MSers do not move enough. I believe that many of them are too fearful of their disease to try.

I confess that I overdid it when I began the actual swim lessons that I started several months ago. My abilities at home were negatively affected in a significant way. Thankfully I realized this change and began to cut way back on my workout intensity. I continue to get stronger in my upper body mostly, and my swimming skills are improving. However, my positive progress never moves as fast as I would like.

So that is “the rest of the story” Paul Harvey. Fourteen years on this off-label medication and over three years of moderate water fitness. Sixteen months of more intense water training and more than five years of socializing like never before. I have not had an exacerbation in well over a decade. The one question that has been keeping me up at night as of late: is there going to be an eruption of Mount ST MS Helen? Am I overdue for an explosion? I suppose just like everything in life only time will tell.

This just in: After I received my first custom fit manual wheelchair, I began to train for a 5k in said chair. Exactly four months after I started my training I completed my first 5k. This proved to me that I could accomplish anything that I set my mind to.

The next challenge that I will attempt is the “Swim for MS.” In October I will try to swim 350 laps to raise money for multiple sclerosis. Each lap is a scary twenty-five meters equaling just over 5.4 terrifying miles. This will not only be to raise money for MS, but also be an attempt to challenge me once again. All of this is a reminder to not let fear decide what I can and cannot do. We do not accomplish anything if we stay inside of our safe zone.

These accomplishments seem small to most and for the average person they are. However, if you knew where I was five years ago or even one year ago for that matter these are massive achievements. I will be proud of this forever. Success comes from struggle. Getting knocked down means that you are putting in the effort and the winners circle is close at hand. “Never retreat, never surrender.”

Keep the faith. The most amazing things in life tend to happen right at the moment that you are about to give up hope.