I wanted to post my story to offer some hope to others. A year ago today, I was starting my biggest relapse ever. My balance was terrible, I could walk a few meters at best, and I began my 10 month "vacation" from work. I was not fit to do much. I actually feared that my life (fun stuff anyway) was over at 33. I was hanging onto the hope that Tecfidera coverage would come through and that it would change my life. The Copaxone injections were causing me to feel anxious and depressed all the time. It was all very scary!
A year later, my balance is 98% normal. I don't need to hold on to furniture anymore, and in fact I walk around indoors like I did before MS. I volunteered at a big event this weekend and faced heat, large crowds of demanding people, sold hundreds of tickets to customers and walked about a km going back and forth from booths. I still need a cane but just because of spasticity in my hamstrings and quads. I'm pretty stiff. This sort of event would have been impossible for me to even consider a year ago!
I don't even know when the progress took place, because it is so gradual. I can measure my progress by what taxi drivers say, haha. If I get a repeat one, they usually say something like "You can walk so much better than 3 weeks ago" or "When I picked you up last month you couldn't step down from the curb but now you can."
I know that yoga really helped, and that going to swim a few times a week has been the best thing I've done to help myself. The Tecfidera and Fampyra have really settled how I feel as well. Heat no longer gets to me. The next thing is they are going to try to inject Botox into my large leg muscles to loosen them up. My neuro described my legs as "incredibly stiff". Fingers crossed that it will make a big difference!
My point is, things can get better. I went from being house bound to being a part of the world again. I feel like I've travelled a ridiculously hard road, but there was something good at the end
I hope to encourage someone who is in a bad state the way I was a year ago.
A year later, my balance is 98% normal. I don't need to hold on to furniture anymore, and in fact I walk around indoors like I did before MS. I volunteered at a big event this weekend and faced heat, large crowds of demanding people, sold hundreds of tickets to customers and walked about a km going back and forth from booths. I still need a cane but just because of spasticity in my hamstrings and quads. I'm pretty stiff. This sort of event would have been impossible for me to even consider a year ago!
I don't even know when the progress took place, because it is so gradual. I can measure my progress by what taxi drivers say, haha. If I get a repeat one, they usually say something like "You can walk so much better than 3 weeks ago" or "When I picked you up last month you couldn't step down from the curb but now you can."
I know that yoga really helped, and that going to swim a few times a week has been the best thing I've done to help myself. The Tecfidera and Fampyra have really settled how I feel as well. Heat no longer gets to me. The next thing is they are going to try to inject Botox into my large leg muscles to loosen them up. My neuro described my legs as "incredibly stiff". Fingers crossed that it will make a big difference!
My point is, things can get better. I went from being house bound to being a part of the world again. I feel like I've travelled a ridiculously hard road, but there was something good at the end
I hope to encourage someone who is in a bad state the way I was a year ago.
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