Welcome to March. With any luck this month will bring an end to
the many bouts of snow and freezing arctic temperatures that have
been plaguing this area during this winter season. It has already
brought a gift to me, and that gift is a new symptom. YAY to
symptoms! Welcome, gradual progression of numbness to my left hand.
A few days ago I began having numbness in my left pinky and ring
finger. Now, numbness is nothing new in the world of MS, so against
the wishes of my wife I didn't call my neurologist to report the
newest symptoms. Within 3 days, I found that this numbness has become
greater and has taken over more than 90% of my left hand and is
approaching my wrist. Interestingly enough over the past few days I
have noticed that sometimes the numbness seems to abate and then it
comes back again without any warning. These strange little
occurrences are what makes MS such and interesting and unpredictable
disease. One day you have a certain set of symptoms that you have
been used to and worked your routine around, and then the next day
another symptom appears and you try to figure out how to work the new
symptom into your daily routine. This is where I am at now, but
thankfully (unlike my wife) I don't really use my left hand for much
and thus this numbness is not much of an inconvenience. After so many
years as a fireman, I always live the firefighter motto of Improvise,
Adapt, and Overcome. MS really does make those words a staple to
daily life.
Many people will tell you that any time you discover a new
symptom whilst living with MS, you should immediately notify your
medical team. For those who aren't aware, your medical team consists
of your primary care provider, your specialists (ie. Movement
disorder doctor, neurologist, nutritionist, etc), your spouse (if
involved in your care), and any other people that you keep personally
involved in your illness and disease management. My wife is my
biggest advocate when it comes to the management and maintenance of
my disease, and as much as I love her, she is also my biggest pain in
the ass. No matter what though, I enjoy every moment that she spends
driving me insane when it comes to my symptoms and ensuring that I
notify the rest of my team and the way she tries to keep me on top of
my medical needs. This is what many people with MS are not always
able to have as their disease progresses, a never ending advocate.
When my wife and I first sought the truth behind my strange
symptoms, the first thing that my mother said to me was that my wife
would be the first one to kiss me goodbye as I got sicker. Now that
we have been through 4 years of knowing generally what we are in for,
several symptoms, multiple medications, the terminal wait for a
decision from Social Security, and an unbelievable amount of doctor's
appointments, she is still by my side and still maintaining control
of my health. Although I often find myself surprised by the number of
people with MS who regale others with the way they were abandoned by
their family and friends once their disease began to progress or once
they informed other that they were sick; I unfortunately find myself
understanding both sides of the equation. Whilst it is extremely hard
for anyone to watch the person they care for begin to “fall apart,”
it is also hard for those of us with the illness to place a burden on
anyone that we care for. So, who should leave whom? Should the person
who is sick be the one to leave to keep from being the burden that
they are afraid they will become, or should the loved one leave so
that they never have to be burdened. I propose the opposite.
My wife and I have made my disease progression a source of
amusement and constant humor within our household. My spasms,
forgetfulness, lack of coordination, and general craziness that comes with
MS have been a great source of fodder for the entire family. I remind
my children constantly that payback is going to be a bitch with all
the diaper changes that I have had to perform for them and the
incontinence that will be progressing for me. My wife reminds me of
the life insurance we have on me and how at any point she can cash in
on that by increasing the danger within the house for me by simply
rearranging the furniture. I remind myself of the humor every time I
try to do something simple with my hands and watch as I fumble for
ages whilst trying to accomplish the task. The latter can be
especially funny when it comes to anything with buttons, and if you
don't believe me, wait until your MS progresses and then buy a whole
bunch of button down dress shirts and let the hilarity begin.
What I look forward to the most this March however, is that I am
one step closer to reaching my goals. Those goals include being able
to walk (for the most part) and being with the ones that I love. My
wife and kids are still here with me and driving me just as crazy as
always. My wife is still getting on my case about notifying my
medical team about the changes in symptoms and getting my bi-yearly
MRIs done. My kids still find it funny to litter their room with
strategically placed toys in order to slow me down from being able to
reach them when they are misbehaving. Even the cats have coordinated
themselves and the way that they get into the proper position to trip
me up whilst moving around the house. Personally, I think that I
should just use my wheel chair around the house as payback to them,
but for some reason the wife and kids won't let me. Lucky cats. For
now at least. Every day I am reminded of how many things there are to
laugh about when it comes to having MS and how many things there are
to be thankful for. After all, it is not the life that I have chosen,
but it is something like it.
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