I Forgot About MS

Written by on March 25th, 2014 – 4 Comments

I never thought I could, but I actually did forget, for a few days, that I’m living with a chronic illness. I just got back from a two-week vacation in Tampa, Florida. Considering that Edmonton has been -25C and colder for the last few weeks, it was sure a nice break!

I’ve been struggling with my MS for the past 2 years, having relapse after relapse, trying one drug after the next, and nothing was able to get my MS under control. This past October, I decided to try a second-line treatment, because clearly none of the first-line treatments were doing anything for me. I started on Gilenya in October 2013, and what a difference it has made! I’m now going on 4 months relapse-free (previously, I was in the hospital getting steroids every 2 months – sometimes less than 2 months). All of the on-going symptoms that I have had for 2 years (balance, numbness, tingling, etc.) are fading away. I feel stronger every day. I stopped using my cane months ago, and now I can actually go for long walks, just like I used to before MS came along. I’m actually quite amazed!

I had such a great time on my trip. My boyfriend and I went on a 5-day Caribbean cruise, and spent the rest of the 2 weeks relaxing in Tampa. I was actually able to do everything that I wanted to do. We went on excursions, did some shopping, walked on the beach, swam… I was able to walk all over the cruise ship, including up and down the stairs, without struggling at all. I even wore high heels! I love heels, and I used to wear them all the time before MS took my balance away. It may seem like a minor thing, but it made me really happy to be able to wear some of my old shoes again.

When we got off the cruise, my boyfriend told me how impressed he was with everything I was able to do, and he pointed out that 3 or 4 months ago, I would have been able to do very little. I would have struggled just standing in line to get checked-in on the cruise. I would have struggled just getting through the airport. I would have struggled even just packing my suitcase. When he brought this up, I realized that, for the last 5 days, MS hadn’t even entered my mind. I completely forgot that I even have MS because I was having so much fun and not feeling any discomfort or pain. I just felt “normal” and healthy.

I know that there are no guarantees, it’s still early on in this new drug treatment, and I have no idea what the future will hold; however, I am feeling extremely optimistic! In fact, I feel so optimistic that I have already booked my next trip – San Francisco for 5 days in May to attend the International MS Walk. Stay tuned for stories about San Fran :)

4 Responses

  1. danben says:

    That is great you are doing so well.From what I’ve read about Gilenya could not ignore the side effects like slow heart rate, breathing problems, liver problems, Macular edema-a vision problem, an increase in blood pressure, increase risk of infection.With the guidance of your doctor/neuro should be ok. Have fun on your next getaway as I start humming the song “If You’re Going to San Francisco” :D

  2. kirstimarie says:

    I was definitely leery about starting the drug when I did my research before hand, but it turns out all those side effects are pretty rare. I go for blood work and eye exams every few months, and so far my liver function is 100% normal, and zero macular edema. The slow heart rate is only for the first couple weeks, and it’s minor, completely unnoticeable. Honestly, I have experienced zero side effects. This drug is not for everyone, but it’s been life changing for me. I sound a bit like a Gilenya sales rep, but I’m not, I’m promise lol

  3. danben says:

    Gilenya sales rep or not..you sold me lol

  4. Himani says:

    Hi! So happy to hear Gilenya is helping you. I’ve been on it since 2007 and with the exception of a few side effects (that I have learned to live with) it has helped me and I first noticed the difference when, like you, I was able to go on vacation and enjoy myself. I look forward to hearing more from you!
    Thank you for sharing!

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