Posted on July 20, 2020 by MSAA
Multiple Sclerosis Association of America
By Penelope Conway
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:
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NEVER GIVE UP!
