I haven’t been around much, and I’m sure I’ve been missing some of your posts. Unfortunately, it wasn’t because I found a new job, the man of my dreams or went on a trip. It’s because I’ve been dealing with a lot lately.
First, I caught the flu before Easter. Three days with temperature were enough to set me back completely. Although after a week on the outside I displayed no more symptoms, I suspect on the inside it took a lot longer for my immune system to deal with it because my fatigue levels skyrocketed. And that’s bad because my normal fatigue levels are usually pretty high. The last three weekends were spent just sleeping. Couldn’t read, couldn’t write, couldn’t do anything for college. Continue reading
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
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
As I sit here, staring at a blank page, I realize I haven’t been around as often as I would like to and also that there were a number of issues I talked about here that I didn’t update. So here’s a summary: Continue reading
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.
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
One funny thing that’s been happening to me since I was diagnosed with MS is that I’ve been growing more and more intolerant to suffering. Not just me: I’ve noticed friends of mine who either also deal with chronic illness or who have been face to face with life threatening situations also tend to turn their backs more often at what’s making life a little unbearable, a little suffocating, a little boring, a little waste of time. Continue reading
There must be something wrong with me
‘Cause I kind of like the bruises
I gave it all and I could have given so much more
Tricking time, tricking memories, tricking stupors…
And I pretend you’re writing your name
Over aching limbs and long distances
Flooding me with the spaces between
Trials and errors, trials and errors…
And I pretend I can defeat
Long hours, needles and pills
And I just fall behind, no need to keep up
And I pretend I can breathe
There must be something wrong with me
I can’t trick I can’t defeat
I can’t connect I can’t breathe
I can’t pretend I can trust
I just remember you asked me to
Today I went to the hospital to pick up my test results.
I opened the blood tests first because I suspected there wouldn’t be much to be afraid of on that front. And as I suspected, everything was normal. Great.
So off to the MRI results. I started reading, I read again, and I reread, in confusion, amazement… in disbelief. And then I was completely stoked. There are no new lesions. None. Zero. Nothing. Nada. Not in the brain, not in the spinal cord. And nothing lights up after contrast, which means the old lesions aren’t active.
I was thinking how come…? I had one of the most difficult, most stressful years of my life. I’ve been off any meds for over half a year. I was worse off with the meds? What does this even mean? Was it the going back to yoga classes? Was it the trying to stress less at work? Was it the extra vitamin D I got this summer by spending more time at the beach?
But then I thought no more. I take it as it is. I’m not asking any questions until I see a doctor.
I called my mother. She said it’s just my sheer strength. That I’m going to be OK. And I cried tears of joy for the first time in years.
At the start of every school year, the place where I used to have my contemporary dance classes lets you try each of the classes and each of the levels once for free. I stopped dancing in July 2013 when I was diagnosed with endometriosis and told I had to have surgery. The surgery turned out not be necessary but then I went back to college and stayed away from dancing in order not to overdo it and have an MS relapse. With my masters starting two weeks from now looks like it’ll be another two years before I can go back to dancing. But that didn’t stop me from trying one of the classes for free tonight. I thought I’d be completely out of shape, I thought I’d forgotten everything, but the truth is the body has a memory of its own. For one hour today I felt really really happy, like I haven’t been in a long time. Like this is what I was born to do if MS hadn’t got in the way. I felt completely and positively alive. And I hope I can carry this feeling with me for the times to come.