More comments on MS and how it has formed my life along with lessons continuing to be learned.
The Sad, Comical Face of MS
It is a great truth concerning MS that when arising in the morning an Affected finds himself allotted a day’s worth of energy and little else. This must be carefully managed and never frivolously wasted. Sort of. Being human, I always draw outside the lines, push my abilities, assume I will be able to do whatever physical thing I want, MS be damned anyway.
A week or so ago I was lying on my bed reading. It was a fine day: brilliant blue sky, cool weather, ‘an atmosphere of quiet like an undiscovered tomb.’ I decided to swing myself up, stand, and transfer to my wheelchair waiting to the left of the head of my bed.
I should have been able to make the transfer and motor into the BR for a midday micturition. The chair was too-perfectly parallel to the bed and my left leg had given up for the day; I missed the proper placement of my butt onto the chair and slid onto the floor.
It took about an hour for my body to again cooperate and for me to again be a proper cyborg. By that point, my shorts were wet, of course. That was a bad day for me. I knew if I just rested on the floor for a while, an hour, whatever it might take, that another attempt to get into my chair might succeed.
I had had ‘flares’, ‘incidents’, times of frustration but always short-lived: never more than a day. When I read of a Fellow-sufferer having a Flare lasting a week, a month, or longer, bed-ridden and defenseless, needing care of all types, I just ‘thank my lucky stars'.
My First Symptoms
I have had MS now in its’ active, life-affecting form, for about 15 years. When my wife and I married, I was a young, chiseled, advancing surgical resident. We proceeded through life and soon had two little kids, a boy and girl, and a nice house and manageable debts and things working for us.
One bright day, doing dishes and not particularly involved, I suddenly felt a total feeling of separation from reality, a brief disconnection from all reality. Like watching a film in a darkened theater and suddenly seeing an instantaneous ‘blip’ on the screen, which righted itself immediately but showed a vague change of visual tone which was now seemingly permanent.
With long-standing OCD, I obsessed over this new thing in my life and tried to figure out what I was seeing. When I got into bed that night, the answer came quickly: I had lost about 60% of my central night vision of the right eye.
In med school, we learned that this was a symptom of MS, among other things, but only one of a constellation of symptoms which might also reflect a more mundane explanation. It would likely resolve and not bother me again. Besides, I was almost fifty, was a male, and had no similar physical affliction in my family on either side, Ever.
MS is a disease of young people, mainly young females. The idea of a middle-aged male suddenly encountering the malady was highly unlikely.
I watched my R-sided night blindness improve over a few months and had no other disturbing signs and felt a full control of my physical self. Again, in medical school, I was taught and read that the first signs of MS appear suddenly, startlingly, jarringly but resolve quickly and will not be seen again for ten years or so. These signs are usually to do with the optic nerve, one or both.
For me, it was right-sided night blindness, which resolved completely as outlined above. The symptoms might never come back. This is a point of bifurcation in MS; I may or may not proceed to full-blown disease and I suspect it has to do with continued MS-causing stressors. If my life had become easier or less-stressed maybe I might have dodged the bullet. But, no.
Uncertain Skies: New Symptoms, Oh, My!
MS is not a condition carved in stone. It changes all the time, never twice the same, never dependable. Think of the fluid motion of a shepherd’s flock: generally controllable but when seen close-up, a random, always-moving fluid.
in my version on this disease, very late-onset, always surprising, my discovered range of abilities may change moment by moment. I awaken with apparent full-function, then lose some function, the ability to type with both hands, a stillness of rest, a cognitive clarity of mind, and the successful completion of the Wall Street Journal crossword puzzle.
It’s amazing, when I think about it, that this part of my life’s journey is now just under a third of the total time. I still fell fully functional, yet able to backpack. My son has told me to actively exercise. An exercise room is available here in my loft. I can do daily weight workouts even sitting in my chair.
Benjamin Franklin wrote a list of 13 life-actions: use of time, public speech and behavior, avoidance of physical sloth, and control of baser passions. One thing he said was to absolutely fulfill any resolve you make.
My son is headed for work and his fiancé in Germany. I will see him next June when he (they?) come again to visit. By then, I hope to be a stronger, better-put-together fellow than I am now.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Thomas A Vetto MD (author) from Scottsdale, AZe on July 03, 2020:
My best to you! Happy 4th!
Eric Dierker from Spring Valley, CA. U.S.A. on July 01, 2020:
This was really interesting. So much taken for granted for most of us. I hope you have a good day today.