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.
Scott's MS Life 