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A MyMSTeam Member asked a question đź’­
Preston, UK

Me...
My career - Mental Health Nursing
My friends - Many but two
My family - All of them because they dont understand me, and are not empathetic or caring people

My mental health - Destroyed
My independence - Gone
My body - Ruined
My personal relationship - Ending
My dreams of - traveling the world, marriage, writing,
My finances - Rock bottom

September 15
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Answer Summary

Members opened up about what MS has personally cost them, sharing deep losses including careers, independence, relationships, mental health,... Read more

Members opened up about what MS has personally cost them, sharing deep losses including careers, independence, relationships, mental health, and dreams for the future. Many community members described the grief of losing who they once were while also finding strength through faith, humor, nature, music, and online communities like this one. A recurring theme was that acceptance, self-love, and focusing on what is still possible, rather than what has been lost, helped members move forward one day at a time.

A MyMSTeam Member

What having MS has cost me, I'd like to think I make up for in other ways. I feel closer to God 🙏🏻

September 24
A MyMSTeam Member

Everyone experiences MS differently due to their age, sex, life lessons, and the MS stage they are in. But they are only dealing with ONE disease! I am dealing with 3 disease processes. I am a one of a kind medical case none of my doctors or specialists have ever seen before. I had polio at 6 months...I recovered from its effects after 5-6 years. Still, there were upper body strength requirements I couldn't do in school. Rope climb, gymnastics, mile run and making the required time to earn my letter on my HS swim team. I have been fighting to overcome since my 1st year. I was drafted in 72' and went into the Navy. I passed all the physicals for regular duty, reenlistment, and submarine duty. I qualified Submarine Warfare in spite of my condition. I served on a total of 3 submarines. 2 surface ships and two tours of teaching. I was DX with Fascio Scapular Humeral Muscular Dystrophy in 82'. I remained on active duty until 92' with my condition slowly deteriorating. I had Thoracic Scapular Fusion of my right shoulder in 90' and served until 93' when I was released from active duty until 98' when I was fully medically discharged with disability. I was DX with MS in Jan 2001 while undergoing a stress test. That came from an MRI with and without contrast and a spinal tap! My fiance at that point had been adjusting to me with one disabling disease. Now she was faced with accepting me with MS, a more serious disease.She did and we married July 28, 2001. Years later I was DX with Post Polio Syndrome in 2017. Polio symptoms had returned to destroy any and all muscle groups initially affected when I was a baby, And it's progressive in nature destroying any muscle I over use. Left bicep now destroyed, back muscle group severely weakened. no lifting or carrying ability, hip and leg strength reduced and now just recently cannot lift right leg for driving, getting in and out of cars and walking.even with a walker. Forget walking with a cane now. My DX for MS indicated I had developed it with my first nuclear submarine tour from 74'-78'. So I had served all those remaining years and up until I was finally DX with MS. Since my marriage not let all these diseases destroy my life. I qualified Open Water Scuba and have made several dives. My wife and I have traveled extensively threw out the US, Canada, Hawaii, and Alaska. I have an electric scooter, an Action Track Chair,canes ,walker and rollater to get around with. I have not surrendered to my conditions. When faced with physical obstacles, I look for ways around to solve the problem. I think outside the box and find ways to get things done! It's important to bear this in mind, "You may have MS, BUT DO NOT LET MS DEFINE YOU!" Asking for help when needed was hard at first. But with time, it's become easier.

September 20
A MyMSTeam Member

I don't want to make a list of what MS has stolen. I'd rather make a list of all the ways Ive learned to deal with, all the things that has been affected by MS. And I'd rather make a list of all the things I can still do. Positivity is very important with me and my MS!

September 18
A MyMSTeam Member

@A MyMSTeam Member, I can relate to most of your list of losses, however I agree with @A MyMSTeam Member. There are “long-lived” passions in my life that are great distractions, for me. You see, I was diagnosed late in life. I couldn’t have children. I never “really” had a relationship. I had many friends, who have longed passed on. I had a single girl dance-club life. Without sounding too boastful, I was a great dancer. I walked everywhere… Don’t misunderstand, there are times I can either dwell on my losses or lose myself in the music of my life and I’m magically transported to that time and place. I can see the crowded dance floors, my friends are there and we’re all young again. Those visions make me feel that way again. Loved, agile, confident and resilient. Find your deepest passion and go get that feeling, @A MyMSTeam Member, anyway you can! I’ll be rooting for you!

September 16
A MyMSTeam Member

Yes and always remember, it has brought us all here to get to know one another. We are not alone!

September 21

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