Life changing…

I was diagnosed after having a seizure September 21, 2014. By the middle of November, I had terrible vertigo and double vision in my left eye and haven’t driven since. I still work full time, 50-60 hours weekly, as a general manager in a retail store and don’t get any breaks from anyone. I don’t talk about what wrong with me daily because complaining doesn’t really help anything in the end and I want to stay happy in front of people. This is truly a very lonely disease to have. Surrounded by loved ones but absolutely alone. I work and come home. Have no social life because I have no energy for one. I was first put on Betaseron and my lesions are active and got new ones. So was then put on Tysabri. It works. I’m stable now on it. Feeling great, no relapses to speak of yet, but still fatigued working so much to make ends meets. And my body always aches since I’m always on my feet at work. I don’t know how long the go, go, go will last but I’m taking advantage of it while I can. Keeping a positive outlook helps me get through every day.

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Comments

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  • PookieJ. author
    2 years ago

    Thank you. I love this site. I just recently set up an account, but have come here a lot as the stories on here are so relatable. I like to read them and even share on Facebook hoping that friends will read them and just be able to understand what’s going on with me a little better sometimes. Keep in doing what you guys are doing, because it definitely helps.
    -Amy

  • Erin Rush moderator
    2 years ago

    Thank you for sharing with the MultipleSclerosis.net community, PookieJ. As you said, having a chronic condition like MS can be very isolating. I thought you could relate to this piece written by one of our contributors with MS — https://multiplesclerosis.net/living-with-ms/the-emotional-effects-of-ms/comment-page-1/#comments. Feeling lonely is a common issue our members face. Even when you have a strong support system, it can often feel that those around you just don’t understand what you are going through unless they, too, have MS. I am so glad Tysabri is working well for you! That is a great piece of news! I hope it continues to work for you. While I understand the need to continue working, you may want to try to find small ways (if you haven’t already!) to take care of yourself. I hope you have some hobbies you can enjoy or friends or even pets that make your day a little brighter. Please know you are welcome here anytime if you feel the need to share or even vent! You can also check out our Facebook community, if you haven’t already — https://www.facebook.com/MultipleSclerosisDotNet/. Thank you again for sharing with us. We are glad to have you here! Best, Erin, MultipleSclerosis.net Team Member.

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