Multiple sclerosis changed my life many times

Multiple sclerosis changed my life many times

This blog was inspired by another MS blogger, who like me, has had this disease along time. Her positive spirit is always an inspiration.

It wasn’t one time, it’s been many times. The first was the day I got my diagnosis. I didn’t understand what MS was. There wasn’t an internet yet I could search. I had to look it up in an old set of encyclopedias that were in my home. It had maybe two paragraphs in the M book of over 1000 pages. I was temporarily disabled for almost 3 months. After taking 1000 mg of steroids via IV for 4 days I was put on an oral dosage with taper for another month. I was so sick coming off the steroids, the MS part didn’t bother me. The diagnosis and those following 3 months changed my life, but that was only the first time.

I was doing fine, had a baby and was back on Betaseron. My second attack switch sides of my body. Even though my first attack left me with some residual issues, you’d never know I was sick. Then the numbness spread, weakness and fatigue. It was easily two years after my first attack and I truthfully forgot about my MS. It didn’t impact my life other than a shot every other day. I just figured I’d be fine now, I’m on medicine. Yet, I wasn’t. I had another attack. I was worried I’d drop my daughter if I picked her up. I struggled with the steps in my house. I struggled to stay awake, work, be a mom and function. I thought I was done with attacks, I was taking medicine, and it wasn’t enough. I ended up leaving the food service field I worked at to work part time for an accountant. After two years I ended up leaving the accountant for the nursing home which I spent the next 13 years. Once again changing my life.

My attacks came and went an average of 2 a year, but never as severe as my first one. That was until I was making the change from Gilenya  to Tysabri back in late 2014. I was off Gilenya too long before we got the insurance approval for Tysabri. I had another major attack. This attack disabled me. I spent the next year working but was able to work some days from home but it just wasn’t enough. My body couldn’t handle it anymore. I never healed from that attack and it only continued to get worse. I stopped working in January 2016. The biggest change to my life since having MS.

Today the changes are still coming. I’m still up on my feet but the day I go into a wheelchair is looming closer than I want to admit. That would mean making my new condo accessible with a chair shower as well as a car that I can take the wheelchair into. Once again MS will change my life. It’s not a onetime only disease. You have to accept and adapt at each stage. Your life is changed at these milestones that you never planned on. What can you do? Stay positive. Be thankful for the things around you. Learn to appreciate your life with different eyes. Remember MS is a disease you have not a disease that has you. Don’t let it stop you from living.

2 thoughts on “Multiple sclerosis changed my life many times

  1. I’m so glad to have inspired you to write this beautiful blog post Jamie! All these changes have made you such a strong woman – you continue to write every day and are a brilliant and successful Mom, despite the MS. I look up to you. Thank you x

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