Posted on July 20, 2020 by MSAA
Multiple Sclerosis Association of America
How do you explain the
hidden and invisible problems with multiple sclerosis?
Every week when the
nurse comes to my house, I’m always asked the same questions. Am I experiencing
any pain? What kind of pain? How does it feel? How’s my appetite? Bowel
movements? Swallowing troubles? Breathing? It takes the entire visit to explain
everything. Pain shifts moment by moment from burning pain, to stabbing pain,
muscle spasms, aching bones, tooth pain, and migraines.
I once asked her if she
believes me or even remembers from week to week the answers I gave previously.
How do you explain the hidden and invisible problems of multiple sclerosis to
someone without MS? The intense itching is already hard enough to explain when
there is no visible reason for it. All I have left to prove it happens is the
remains of over-scratching my skin…arms, legs, face and neck.
I’m allergic to the
normal meds prescribed for nerve pain so I am on a high dosage of opioids. It’s
the only affordable med I can take that controls the pain. All of the meds I
take cause me to need a daily laxative to help manage the constipation they create.
The destruction MS
causes in my life takes place inside my body. The effects are seen as I move,
talk and go throughout my day with disabling symptoms. If you were to see
inside my body you wouldn’t judge me so quickly. My insides are a wreck and filled
with chaos.
My trouble with
balance, cognitive difficulties, dizziness, fatigue and weakness, blurred
vision…they are all hidden from view. In
a perfect world, MS wouldn’t exist. There would be no pain, fears, difficulties
or struggles. But we live in a world filled with brokenness. It’s okay to cry,
fall apart and actually feel afraid. That’s part of being human. It’s part of
living.
Allow yourself to feel,
get angry if you need to, cry if you must, then wipe your tears, hold your head
high and conquer the day. You are a warrior that may be weary in the fight, but
even on your worst days you are still fighting.
Never doubt, even for a
minute, that you are special. You are incredibly special. Hold your head high
today. You got this!
*Penelope Conway was
diagnosed with Multiple Sclerosis in November 2011. She is the author and
founder of Positive Living with MS (positivelivingwithms.com) where she uses
humor and her own life experiences with MS to help others navigate this
unpredictable journey. She believes that staying positive and holding onto hope
is the key to waking up each morning with the strength to get through the day.
In support of Multiple
Sclerosis (MS) research:
Twitter hashtags:
#BikeMS #Brain #ChronicIllnessWarrior
#CureMS #Demyelination #Disease #FightMS #FuckMS
#FuckYouMS #FUMS #Lesion #MovingMountainsForMS #MS
#MSawareness #MSAwarenessMonth #MSeducation #MSOnMyMind #MultipleSclerosis #MSHope
#MSstrong #MSSucks #MSwarrior #MuckFestMS #Myelin
#mymsme #OverMS #LivingWellWithMS #ThisIsMS
#Vertigo #WalkMS #WalkTogether #WeAreILLmatic #WeAreStrongerThanMS #WorldMSDay #WorldMultipleSclerosisDay
#EndMS
NEVER GIVE UP!