What does having MS feel like? – Blog by Teresa

OoH Sep 16, 2015, by Teresa Schirlbauer

Having MS feels like having a Damocles’ sword dangling above my head most of the time. Some days I manage to force it out of my mind. Some days I can’t.

Most of us get diagnosed somewhere in our prime. Right when we’re kings and queens of the world with unlimited potential to become anything we want. We're in college, in successful careers, successful athletes, great friends who love to go out and party, who love hiking, running, climbing, concerts, dancing, singing, moving.

Suddenly, we're no longer wondering if we can complete a half marathon in a record pace, we're wondering if 15-20 years from now we'll be able to walk at all.
Suddenly, we're no longer focused on that next big promotion, we're hoping this relapse recovery will be swift enough that our colleagues won't notice.
We're no longer planning a beach vacation with our friends, we're hoping that they still invite us to do things when we've told them we can't go rock climbing next week because of balance issues. We've gone from worrying about big issues to worrying about will I be able to deal with the stairs.

How it physically feels is insanely different from person to person. The list of symptoms is seemingly endless – sometimes it feels like you're perfectly normal, sometimes you're so fatigued that grocery shopping will put you down for the day.

My big attack left me feeling numb-ish on the right side of my body, left my hand weak, so I have to pay attention to what I’m holding. My brain sometimes feels foggy and on bad days I’m unable to even get a lot out of reading.

The good news is that I recovered nearly 100% and 95 out of 100 days I'm feeling damn good-- but that still leaves a number of days a year that I'm just not great. The symptoms change-- usually it's fatigue, some cloudiness in my brain that makes thinking a bit difficult, some balance issues. Mostly symptoms you just can’t see and I’ve learned to hide them.

The thing that weighs on all of us though is that the future is no longer just a thing filled with hope and possibility. It's filled with a concrete possibility of disability, unemployment, and being a potential burden to others.
This is the biggest hurdle-- learning to cope with an uncertain future.

Sailing Sclerosis has enabled me get my thinking straight again – being part of the Oceans of Hope Circumnavigation and sailing the East Coast of Australia for 3 weeks has left me feeling stronger and more self confident than ever. If I can set 35m2 of main sail, I can do pretty much anything, right? Someone once told me that “with MS, it’s all in your head” – ironically, it is. I am very grateful for being a part of this once in a lifetime experience and I want to take this opportunity to thank everyone from Sailing Sclerosis for making it happen.

Sadly, I won’t be able to make it to Barcelona, as I have started my teaching job this week and there are no school holidays during that week of October. Not being able to be there to welcome the ship and to reunite with the crew makes me sad, but I will just have to be there in thoughts and wait eagerly for a photo documentation.

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