He hates me, he hates me not…

Many of us with MS have shared how we frequently feel like a burden to our friends and family.  No matter how often we hear it is not the case, it does not negate our feelings of onus concern.  We think this way for a variety of reasons, from the significant to the simplistic.  It could be the plethora of friends many of us have lost because our MS causes these lost souls inconvenience and hassle they would not accept.  They do not want to deal with the daunting daily difficulties that can pop up without fair warning causing life to significantly slow if not simply stop.  Yes, our loved ones often tell us our challenging lives are not a problem yet like a burden we still feel because it can weigh heavily.

Sadly as of late, there have been some troublesome challenges that have resulted in me being more of a burden than usual.  Again, others tell me I am not a burden, yet that is the only word that makes sense when you call people at their job to help you get up off the floor.  Recently I have had The Perfect Storm of faulty physical follies that I must blame primarily on myself.  In some of the blogs I have written since this pandemic began, I have advised of the potential pitfalls being homebound could lead to.  Yet, part of my failure was I did not heed these alerts I placed in my well-written and detailed blogs intended to help others avoid them.  No matter how terrible, this false step is not to blame for one hundred percent of my year-long downfall and, more specifically, in the last few months.

Before the pandemic, I was swimming three days a week, two to three hours each day.  I was very fit and did not fall at home because my muscles were in good shape.  At that point, the pandemic forced many of us to be on lockdown, and regretfully I did not exercise as much as I should have.  After several months I could feel my body deteriorating in various ways, so I began searching YouTube for exercise videos.  I got more serious about my fitness when I found a Youtube channel specifically for wheelchair users. 

Then about ten months into the pandemic, the Veterans Administration got me a power standing wheelchair for the many health benefits of standing.  I knew transferring into it safely without guidance would likely cause catastrophic conditions. So the VA set me up with a physical and an occupational therapist to help me learn to keep my independence with this chair.  Working with both therapists two times per week has been enormously benefiting yet debilitating as exhaustion has become my copilot.

In several of my blogs, I advised others of the perils of not eating cautiously during this pathetic pandemic.  I tried to remind others how easy it is to gain weight from eating excessively and moving minimally.  Unfortunately, I did not take the advice I shared so freely, and I began the mastication nation world tour.  I started ordering meals from various local fast-casual eateries thinking it would be healthier than fast food.  My intentions at the start were good as I kept my portion sizes small by splitting each meal, making two meals from one.  However, the longer this lockdown kept me confined, the more I ate, and my posterior and paunch plumped and protruded past my wheelchair seat. Because of this backslide of my backside it returned to a larger size, I am returning to a food-limiting lifestyle.

Another negative issue for my MS and home life has been the unpredictable temperatures outside.  I can handle warmer and even colder temperatures as long as it keeps a constant temperature.  This fact means spring and fall are the most physically challenging for me when the numbers on the thermometer outside bounce like a caffeinated Chihuahua.  It is difficult when I have the AC on in the afternoon, yet I have to turn the heat on to remove the cold from the house in the morning.  It causes my limbs to act like a petulant two-year-old and forces my appendages into a spastic temper tantrum.  All of this means in the last few weeks, my difficulties have disappointingly doubled, leading to more calls for help, and I feel bad for it.

Our bodies began a tug of war while they learned to listen to us when we were babies.  As we moved into puberty, our bodies threw constant temper tantrums for several years as the growth made communication with our bodies difficult.  Soon after they got with the program, a synergy formed between our bodies and brains, and our movements became smooth and fluid.  However, with multiple sclerosis in my body, the communication between my brain and body parts is back to the petulant child days.  I realize people have no true understanding of what MS is because in every person with MS, it is different, and if you do not experience it, you cannot understand it. 

The best way to explain my MS so people can get even a slight inkling of understanding is like this: MS makes my body not listen to me while creating chaos and constant confusion. On a good day, my MS is like playing a first-person video game with a sixty-second-time delay.   So when you manipulate the controller, the onscreen action does not happen for a full minute.   However, on a bad day, that action message I send to my limbs feels like it is going to Mars, seemingly taking twenty-two minutes to reach the recipient. No matter the case, my legs do not cooperate, making the requested action not happen, possibly causing terrible tumbles. 

My eyes do not see correctly, meaning the object could be simply blurry or like I am looking through the wrong end of binoculars.  This situation means it can take time for the signal to get to my brain to understand what I am looking at.

These physical troubles and challenges make my daily abilities shrink extremely and work sluggishly. Once again, they make the idea of urgency or spontaneity impossible as they zap my energy making my movements sporadic and uncontrollable at best.

This low strength of mine requires me to question every task in order to use my limited muscles wisely.  Whether it be significant or straightforward, I have to examine every job, deciding where do I put my energy as I cannot do them all most days.  There are many days where I have no strength to get dressed entirely, and some I only move slightly.  These assaults rage daily while some days the skirmishes are nasty, and others are nearly unbearable battles.  I believe multiple sclerosis could take down an average human, but we MSers fight like the battle-tested worriers we are.

I need to think slowly and move carefully to fall rarely.

MS: The certainty of uncertainty…

As a twenty-year veteran MSer, sometimes I am asked to advise the newly diagnosed.  Occasionally, I get to welcome the newly medically afflicted into the MS club. This fraternity is where the members are completely courageous, and the condition is continually confusing.  Questions get posed to me all the time, typically asking the same queries in different forms.  Is MS a death sentence?  No. You have MS, so how do you look so good? Oil of Olay.  What now?  Live your life to the fullest, finding ways around obstacles appearing in your path no matter what they may be. 

Then one gentleman’s query put me in a quandary when he asked me what he should expect from an MS life?  I thought for a moment and came up with this simple answer, keeping in mind this is my way of looking at it.  My explanation had cleared up our strange medical condition in this simple sentence.  With Multiple Sclerosis, you must expect anything and be ready for everything. 

However, there are a plethora of variables that make planning for MS an unyielding undertaking.  To give you an idea of some of these differences: age, how healthy you are, and your geographic location, to name a few.  Multiple Sclerosis neophytes need to know there are many similarities yet even more differences between symptoms and MSers.  If you ask any ten people with MS, you will see some commonalities and even dissimilarities in the symptoms.  However, the impact of these symptoms on their lives can vary drastically. 

People will usually share their stories about how they dealt with MS adversities they faced.  The problem is you will not understand until you experience those challenges yourself.  Although the same symptoms in different bodies cause various issues, no two MSers experience the same.  Keep your bodies moving by moving anything you can as much as you can for as long as you can and never give up.  No matter if it is running, walking, swimming, or something in between, stay in motion. I always say if you sit still for too long, your body will rust, and a rusty pair of scissors does not work correctly, and neither will you.  I went for nearly ten years without moving, and I deteriorated so much I am currently in a wheelchair. So learn from the mistakes of others.

Food is life, but the wrong food can be your downfall.  There are plenty of MS-focused diets from which to choose, and they all generally tell you to eat reasonably and smartly.  It is more important to pay attention to the similarities between these eating lifestyles and not the differences.  Portion control is imperative, just like not overdoing unhealthy food, do not overeat, or speed eat.  Although many argue what they look like, health and wellness are both critical.

When something unexpected happens, do not panic!   Someone has gone through it before you, and others will deal with it after you as well.  Remember, life with Multiple Sclerosis is your new routine, so adapt and overcome and never give up doing things.  It is essential to find a workaround that helps you do something you love or other tasks you want to accomplish.  When needed, wear a cooling vest or carry a notepad for reminders but do not deprive you of life.  It is important to take it one day at a time and be patient because MS surprises can happen at any moment. 

No matter what happens, keep a positive attitude, and always wear a smile.  When you require help, people will be willing to assist you if you are wearing a smile.  Grumpy Gus’s get a bitter rejection when assistance is needed most.  Learn your limitations but never give up and live your life to the fullest, using any adaptations required.  Be willing to laugh at yourself as it will make the difficult times easier to handle.  They say, if you are not laughing, you are crying, and who wants to cry?  Most significantly: do not ruin a good day today thinking about a bad day yesterday so let it go.

Build a stable support system filled with family and friends who are supportive, not pejorative.  Find a Multiple Sclerosis support group, whether local or online and find an MS buddy in that group.  Stress and MS are mortal enemies, so do not let them use your body as a battlefield because that war will not go well for you.  Avoid stress but if you cannot avoid it, find ways to manage your stress with meditation, music, or maybe religion.

I feel these are essential bits of knowledge for those who are new to MS.  Experience removes fear and builds your MS confidence.  So remember today you are better than yesterday but not as good as you will be tomorrow.

To thrive in this MS life, you need three bones: a wishbone, a backbone, and a funny bone.