Ex-CEO Navigating Life with MS - Now What?
At the age of 19, began to exhibit symptoms of fatigue, night sweats, pain, insomnia, and low-grade fevers.
These diseases didn't stop me
Was diagnosed then with chronic fatigue, fibromyalgia, Cytomegalovirus, and Epstein Barr. None of those diseases stopped me, however, it made tasks much more difficult. Was still able to found and run 3 companies, as well as a non-profit children's charity that taught kids grade K-5 the importance of giving to others through hands-on community service projects that they planned and implemented, then our charity funded for supplies, transportation, and a stipend for teachers in need of class supplies.
Had to go on disability
Fast forward 20 years, began to have balance issues, the MS hug began, pain got increasingly worse and was in a constant state of fatigue, along with some other issues. Had to go on disability then because of the many issues. I traveled in Europe and Asia, mostly spending time resting, going out and being social when able, taking in new sights when able.
An MRI finally confirmed MS
After 4 years of guessing, partly because a spinal stimulator that had been implanted from football and car accidents, precluded me from getting an MRI. Even though the spinal tap showed positive for MS, they could not confirm it until a year ago when an MRI was able to be taken showing lesions and Dawson's Fingers formation.
Looking back, had been having flares, without knowing what they were, at a rate of about 1 every year and a half, for the past 6-10 years.
Scared the disease may be progressing
Was a motivational speaker for years, for many organizations, now in a relapse that has lasted over 2 1/2 months, taken Solu Medrol with no relief, and just am feeling useless and scared that the disease may be progressing - lacking the hope and motivation that I spoke of to so many.
Between relapses for the last two year, have been eating very healthy, especially foods that hold natural anti-inflammatory properties, worked out 3-4 times a week with weights and kept up a vigorous aerobic level on the other 3 days. I pushed and fought for health through clean living, took no medications (except for sleep), and was starting to feel a bit better.
Now with this long relapse, the Dr. feels I should go on Ocrevus to slow the disease and help with flare up frequencies and length.
Pain, fatigue, and loneliess
Have so many great business ideas that are unable to be executed from bed, feel lonely as I backed away from friends to save them from my having to constantly respond with a no to invites, then also hated having conversations from a place of such pain and fatigue. My ex-wife and 4-year-old daughter live in Europe so getting to see them is very limited.
Have always lived life on my terms, never searched for who I was in love, always created what I wanted to be and give to others through mental focus, hard work, and creativity. My creativity and capacity to love someone has no home, for now.
Looking for help and support
Was just wondering for those of you that have Relapsing Remitting MS, then it progressed into further stages, was it a progressive step or did you just not recover from a relapse that indicated the disease's progression?
Has anybody tried Ocrevus? Did it help? Any bad side effects?
Lastly, does anybody know of any phone forums where people can talk to each other about emotions, frustrations, successes, life in general with MS? Am a great listener and would love to know more about your personal stories, struggles, triumphs.
Appreciate any answers... Wishing you all the best on your journey with MS. May we all be grateful for what we are still able to do and enjoy... Thank you for any help, advice, communication, etc.
All the best,
Does your employer provide workplace accommodations due to your MS?