Everyone knows this Christmas song, but with a word twist or two, it can be played in the summertime for us MSers. As spring advances into summer, the outside temperatures jump up and down the thermometer like a pogo stick. This season change with its drastic temperature swings, is physically draining for most of us with multiple sclerosis. However, the summer heat can drastically debilitate the majority of those with multiple sclerosis.

It’s the most terrible time of the year.
With the temperature swinging and my body screaming,
the ground is so near.
It’s the most terrible time of the year.
It’s the crap-crappiest season of all.
With the temperatures leaping and bad body beatings
‘cause I tend to fall.
It’s the crap-crappiest season of all.

It is common knowledge among those with multiple sclerosis, their families, and even friends of our heat sensitivity. When the summertime stampedes into existence, the various MS organizations begin to pass out cooling vests as well as tips to stay cool. For some MSers, this is not the only challenging time of year as the mercury in the thermometer sticks in the upper temperatures. Some of us are also impacted by the drastic swing of spring and fall, where the temperatures move inconsistently. This seemingly mild time of year for others is rough as the thermometer moves like the wings of a hummingbird after a triple shot espresso for us. This issue is not the entire spring or fall, but just as the season begins to roll into summer or winter.

During this evolution from fall or springtime, I often want to wrap myself in bubble wrap to protect me from every fall. My brutal bruises remind me next time to be more cautious by thinking slowly and moving deliberately. Alas, I typically forget by the following season change, and the psycho cycle continues causing my rump to meet the ground.

I want to wrap myself in protective padding as my falls during this newly arriving season precipitously rise. Arm strength is essential for wheelchair users, yet the muscles in my arms become extremely weak. This weakening muscle issue is due to the temperature that rises and falls like the stock market and causes my transfers to be hazardous. For an ambulatory person, legs are the cornerstone for most daily tasks like standing and walking. However, for the average person in a wheelchair, our arms are our ambulation mode, and we need them to be in top form. We cannot depend on our legs to help at all because, for many of us, our legs do not work.

The swings on the thermometer can make us get lightheaded more often, making seat shifts more unstable and unsafe. A transfer at this time from one surface to another becomes more of a precarious proposition. These dizzying moments can happen at any time, whether we are sitting still or transitioning our positioning. This vertigo feeling can put a damper on any part of multiple sclerosis and wheelchair life.

However, the horrific heat can cause us to fear the outside temperatures and dread leaving the house. Some MSers wake up feeling stiff and barely able to move all day while others feel tenacious tingling thru-out their body. The optic neuritis that many have tends to go haywire, possibly causing temporary blindness, which shakes us to our core. As our multiple sclerosis flairs in this inconsistent and chaotic weather, we fear the unknown of the MS monster. Many times we move slower, doing our best to muddle through our day at times, counting on our reserves to get us home.

MSers like to be included in the activities of our friends. We do not want to be pushed into the land of the ignored, abandoned, and forgotten. Sadly, we have our limitations that we must find ways to work around in hopes of not being shunned and outcast. Many of us feel our restrictions make us a burden and do not want to stop the activities of others.

We appreciate being invited to most anything even if our answer is no like maybe you are going skydiving. Most MSers will probably say no, but some of us would literally or at least figuratively jump at the opportunity to leap out of a plane. Quite possibly, you are merely going to have a family game night at home. That type of event keeps the activity level down, making the majority of us say yes to this less strenuous day more reasonable. You may also entice more of us with a trip to the movies provided you choose the correct theater. We wheelchair users do not want to break our necks as we sit in the front row, looking directly up at a forty-eight-foot screen.

Be empathetic towards those who are physically limited, include us when you can, and we will be glad to join you.

I have shared the importance of keeping the body moving so often that I am sure people can spout my speech like saying The Pledge of Allegiance. I tell people so often I guarantee that some people are getting sick of my disgustingly dull diatribe. I remind them of the success of just how far I have come using fortitude and tenacity through my struggles. I tell people how my story of overcoming my adversities is meant to be inspirational and motivational. These tales of mine are not intended to be derogatory or accusatory of others.

I knew a man named Rick a few years ago who taught fitness models the proper way to train and win. The preparation prescribed these competitors to correctly formulate a plan for excelling their bodies to the winners’ circle. They had to be exceedingly fit physically, mentally, and even emotionally to compete, and his students often won their fitness competitions.

When Rick was later diagnosed with multiple sclerosis, he thought that his training days were done. However, he decided to keep moving forward until his MS laden body demanded that he end his training career. Fifteen years later, Rick continues to train others as well as routinely exercises his physique, as his body does not give in to this idea of a sit still style of living.

I recently learned of a bodybuilding trainer Jim who as diagnosed with multiple sclerosis. This condition of his began thirty years ago at the age of twenty-six. Even though this type of announcement can often be career-ending, he continues to lift weights and train other bodybuilders. It is amazing what a strong will, along with a never give up attitude, can do.

An older woman and her husband sat next to me in the pool a while back as their granddaughter played in the water. Lisa and I spoke for about twenty minutes before I realized that she has a twin sister named Melissa, who has the same medical issues Lisa does. She explained how Melisa’s husband babies her by doing everything for her negatively impacting her daily life. He does not allow her to lift a finger, causing deterioration and atrophy, making the dependency on her husband more of a requirement. The longer you use a crutch of any kind, the more you will come to depend on the assistive device.

Melisa’s story reinforces my point of the importance of continual body movement. They both have the same medical issues and yet deal with the complications very differently. Although Lisa still feels pain, she does not let that stop her from living her life to the fullest. By swimming, traveling with her husband, taking care of her family, she can significantly slow the negative impacts of her medical issues.

When Melissa feels pain or discomfort, she deals differently with this miserable plight. She simply asks her husband for some pain killers and a glass of water and continues to sit and waits for nothing good. Again, do not let your body become inactive and stop working like a rusty pair of scissors. This tale of these twin sisters should be like American Express and accepted everywhere.

I have seen people experience retirement in one of two methods, and it does not have to do with money. For some, it is about staying active and living, not only the rest of their lives but the best of their lives. These individuals worked all their lives on the daily grind with retirement as the target. I have seen them do everything to stay active from simple walking to rollerblading and speed walking to surfing. No matter the level of activity, they remain in motion.

On the other hand, I have seen those who have a more sedentary view of life. The extent of daily exercise for those people is pushing the buttons on the television remote. Sure they may get up to visit the facilities or make a sandwich but then return to their derriere’s indention on the couch. I have heard them say things like “my legs hurt if I” and “I get too tired when I,” but they do not believe my cure recommendations. They do not comprehend when I say Dwayne “the Rock” Johnson would also deteriorate if he sat sluggishly stationary on the couch.

Simply walking outside down a few houses and back will have a significantly beneficial impact on one’s life. This short journey should be made once maybe twice per day to affect your total physical and mental wellness positively. If you do not want to walk outside, then walk around inside your house every time a commercial comes on. You get out of life what you put into it, so put in a little effort in and reap the rewards as you extend your life.

In the pool that I use, I have met more people in their upper seventies and eighties who look like they are in their sixties. Everyone appears to be at least ten years younger than those who do not exercise. I have met seventy-five-year-old farmers still working in the fields like they are twenty. I have a friend who is a nurse and is over eighty years old and moves like she just turned sixty-two.

I hope my writing encourages everyone to get off the couch and begin even a mild fitness program. These stories remind us to move whatever you can as much as you can for as long as you can to slow the effects of father time. We must remember that any rust build-up comes from a sedentary existence. The truth is that “if you always do what you’ve always done, you will always get what you’ve always got.”

Constant movement is the key to continual mobility ability.