Hairy chainsaw massacre

Because I was born in a family where mental illness is common, in some ways I had to grow up fast. That means I didn’t get to do some of the very very stupid things teenagers do, because I had this huge sense of responsibility and consequences. And that means that today, fully grown up, I find myself making some really stupid mistakes. Like a teenager. Continue reading

When your car is your best friend

January was definitely a no-luck month for me. First there was that terrible cough that prevented me from sleeping for an entire week. Then my car was scheduled to go to the shop for some maintenance that wasn’t supposed to last more than two days. As it turned out, it lasted four days. Then I picked it up, and 10 days later it broke down (I couldn’t turn the wheel) so back it went to the shop. This time, the car was in there for a week and a half.

So why am I writing a post about my car? I mean, isn’t more ecological to ride the public transports or carpooling with a nice coworker?

Because when you have a debilitating illness like MS having a car makes a HUGE difference. Let’s see: Continue reading

MS and colds don’t mix

I kicked off 2016 dancing with friends and generally in a good mood. But soon after I went back to work I started noticing my throat going sore and my lungs burning with a tickling feeling. A lot of coughing ensued. And by a lot I mean a LOT. This wasn’t one of those colds where you just feel like you were hit by a bus for three days and then you’re fine. No, this was a mild enough a cold, except that it lasted for a whole long eight days. That means that for those eight days I barely slept because I couldn’t stop coughing.

I think you can imagine where this story is going. Continue reading

This is why I won’t learn from my mistakes

One of these days I was scrolling down my Facebook news feed and I saw this video someone I met through dance classes had posted.

I already knew movement was of the utmost importance when it came to neurological disorders, but I found this video so compelling and heartwarming that I immediately googled where I could learn more about dance and movement therapy. Et voilà, there will be a workshop in February – and me, of course, I already enrolled.

So if you read me complaining about how tired I am and how I always keep myself too busy for my own sake – like I did back in October – then you’ll know why. I’m hoping I can do things a little differently this time though, like taking a day off from work or skipping some assignment for college so it won’t take such a toll.

But you know me, my love for dance and my love for the mysteries of neurosciences. My wanting to heal. And my need to actually do something I’m passionate about. To fall in love.

Dear Santa

MSnubutterflies

I never have a Christmas wish list. There’s not really anything I want. I already have everything. All of the meaningful things in life. Two beautiful kids, a loving man, and the best sister. Parents that love me, friends, and a roof over my head. That’s all I need.

Gifts have never been on my priority list. Material things are just things. So when asked what I want for Christmas I usually say nothing or I don’t know. What could I possibly want?

A new leg, a new eye, not to walk like a drunk. Just kidding!

A couple nights ago and like most nights I was unable to sleep. Thanks again MS…lol. I don’t want to keep anyone up with lights or the TV so just like every other night I have nothing better to do but entertain myself with thought. A traffic jam in my brain. Yes I…

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MSanniversary

So this was the day, four years ago, when I heard the words that changed my life.

I’m not going to write a huge post about how these past four years have been for me (kind of hard). I’m just going to say I finally realized my MS is not Voldemort and I actually started saying out loud that I have it. Of course I don’t go around introducing myself “Hi, I’m Sónia and I have MS” – and of course work is also a different story – but in specific contexts, like when I met a physical therapist and asked for her number (because I have MS and who knows if one day I may need you), or when I tried to explain the lady at the drug store I can’t just take anything for insomnia and/or depression (because I have MS and it might interfere), it makes sense that I stop hiding and being ashamed. It’s just a fact, not a judgment. I have MS.

I’m also glad that even though I changed in many aspects, I haven’t lost sight of who I am. It’s inevitable to change when you’re faced with a condition like MS. Some changes you make consciously, some changes the disease makes for you and you only realize later on, but you’re bound to change. Still, I’ve managed to keep the core of what makes me who I am mostly untouched, through all the damage, the angry words, the sorrow in my heart and the scar tissue in my brain that just won’t heal itself no matter how much I pray. In this way, MS can’t tame me. I will be fiercely holding on to what I feel makes me human – to my essence. That’s what I’ll be celebrating tonight. And who knows, in the end, even Voldemort was defeated.

Dissonance

My recent bout of insomnia, that I relate to the anxiety and change of routine caused by my master’s classes, has been met with skepticism from everyone from my mother to my therapist. I see them frown and ask, “Couldn’t this have something to do with Tecfidera?”

The taking of the full dose of Tecfidera coincided precisely with the beginning of my classes, so there was really no way to be sure unless I talked to my neuro, but I know deep inside in my gut that these past two months of insomnia have everything to do with anxiety originated by classes. Because I feel anxious, that restless feeling inside my chest that is so familiar. Because when I wake up in the middle of the night is usually due to some nightmare. Because I’ve been living with myself for the past 33 years. Continue reading