Preventing a repeat of a problematic past...

Temperature and MS have a paradoxical relationship.  The form of MS that one has determines the severity of any symptoms.  These physical alerts can cause exacerbations that significantly challenge life.  These manifestations can be uncomplicated like making a person slightly winded.  In extreme cases, it can put a person out of commission for several days.  I say temperature because MSers can be impacted by either hot or cold.  However, most of the MS community is challenged by heat.

Multiple Sclerosis is the gift that keeps on taking.  It is complicated for the newly diagnosed to plan for the effects of MS.  The reasoning for this lack of preparation ability is twofold.  First, the Multiple Sclerosis symptoms vary from person to person and day to day.  This means that no one can genuinely warn a new MS patient of what is to come.  The second is that it would not compute if an individual were advised.  This is because a person’s abilities before MS are incredibly different.  They are ingrained from years of experience.  These older capabilities are taken for granted after many years of existence. 

Without experience, there is no comprehension.  This new MS lifestyle means that you have to learn everything all over again.  Pre-MS, an individual, can deal with a sweltering day.  In a post-MS world, slightly warmer days can zap your strength.  This strength elimination in some cases requires several days of respite.  Knowledge is the only defender that an MSer has to aid in this new MS life. 

I have recently learned that these MS influences can change season to season as well.  For me, the heat of last year was truly devastating.  I had to keep the thermostat in my house set at 69 degrees.  The cold temperature in my house caused me to be negatively affected elsewhere too.  Even two or three degrees higher on the thermometer made for a considerable difficulty.  There were many days where I just sat in front of a fan for hours.  I avoided venturing out without mapping and planning my trip carefully.

One day last summer I was invited to an outdoor event.  My cooling vest was new to me, and I had forgotten it at home.  I did not think about my wearable cooling device because the weather was excellent.  It was a sunny day in Grove City, and everyone at the event enjoyed it.  I had been out all morning with no adverse effects.  I was totally oblivious as a hot breeze blew in.  This warmer wind was a bad omen of what was to come.

I soon began to feel my internal thermometer skyrocket.  Like a street magician who makes coins disappear my strength had vanished.  I was using a motorized attachment that was controlled by me tapping my wheelchair.  I had absolutely no power in my muscles.  This meant that I could barely touch the chair to get proper progressive propulsion.  My friend would have gladly helped me, but I am a very stubborn guy.  I just could not ask her for help.  All she could do was stay alert like a century guarding a castle.

I could feel myself getting overheated by the second.  So we headed back to the car.  I should not have waited so long, but I just would not say “uncle.”  It was impossible for me to get into the car like I usually do.  It might as well have been a climb to the top of Mount Everest.  This temperature felt like I was on the edge of a volcano.

I had an angelic and probable powerlifter on my side.  This angel sent from above did not bat an eye at the daunting task at hand.  The problem was getting me into the car with absolutely no help from me.  I could almost hear her shout “CHALLENGE ACCEPTED!”  When I was finally in the car, I could not hold myself upright.  I quickly slumped over onto the driver’s seat.  I could barely pick up my hand so that she could pull me upright.  Finally, she helped me get straightened up and get belted in.  With the air conditioner blasting, I began my prolonged recovery. 

She got me home, and we continued to sit in the driveway and just talk.  I’m pretty sure that she had somewhere to be, but there we sat.  The strong manly part of me said, “I am absolutely fine, I got this.”  Yet, the MS side of me said “yeah right!  Go ahead and step out of the car, I need a good laugh.”  We sat there until she felt comfortable that I was ok.  I thanked her profusely for the next week. 

This all could have been avoided had I thought through every move.  Experience now tells me what I need to consider.  I did not have the knowledge necessary to plan for this part of my MS life.  I now have this situation in my memory bank.  This means that a situation like this cannot sneak up on me again.  I never want to avoid outings just plan for them more wisely.

This summer the thermostat in my house has continually been set at 75 degrees.  I have not had a day like last year’s summer outing.  I have been able to survive quite comfortably in these warmer temperatures.  The days where I need a long recovery are now few and far between.   Now this long recovery takes only twenty minutes under a fan.  However, none have been close to that strength eliminating hot day that will live in infamy.  Yes, that wording is an overstatement.  In life, there are just some things that you will never forget.

“Once bitten twice shy.”  The heat was a life-threatening antagonist at the time.  Thankfully, that is no longer the case.  I currently find myself wearing this cooling vest unnecessarily.  I constantly remind myself: “it is better to have it and not need it then need it and not have it.”  However, as a bulky cooling vest, it seems a bit excessive.  Not to mention the cooling powers last for three or four hours tops.  This cooling vest is not an all-day thing.

So to anyone newly diagnosed with Multiple Sclerosis hear my words: listen carefully and act quickly.  Listen to other MSers sure.  They can usually give you necessary information that can be helpful.  More importantly though, listen to your own body.  It will give you fair warning when you are receptive to it.  Act quickly: if something feels wrong then pay attention and move quickly.  The effects of MS symptoms many times come out of nowhere.  Things impact MSers much faster and harder than your pre-MS days.  So be ready.

Having an exceptional attitude helps with this complicated conundrum called MS.  Having the patience of Jobe is just a bonus.  If they are bodybuilders or not having great friends saves lives.  This heroism happens both literally and figuratively.  I will take good friends over a trillion dollars any day of the week and twice on Sunday.