Sometimes no change is good

Dear friends,

It’s been a long long time, I know. And I don’t even know how to explain my absence. Amidst fatigue, trying to manage it and balance it with all the activities and interests I have, time flew by. I also sometimes get so bored about my life and my complaints (it’s always about fatigue, as you may have noticed) that I don’t want to bore you too. And because of that, I only wanted to go back to writing when something big changed in my life that I could tell you about. Something big and for the better.

But, you know, sometimes no change is good too. Last month I went for my annual MRI and yeah, you guessed it, there was no change compared to last year. No new lesions, no inflammation, no sign of disease activity. I was surprised and so glad. I didn’t make a big fuss about it, like calling everyone right away, because after five years of being diagnosed I’m tired of having my entire life revolving around MS. But believe me, I’m happy. Quiet but happy. And I think that for two consecutive years not having signs of disease progression is like my MS is giving me permission to leave it alone. It’s like it’s telling me to go live my life.

Now I just have to figure out what “living my life” is without the constant fear of getting worse. Ha.

So there you have it. I occasionally visit your blogs though I must admit that I’m enjoying the social media diet, especially when it’s not so much the physical fatigue that’s killing me but the mental one. I went back to practicing meditation 15 minutes every day to deal with the mental fatigue. And I say “practicing” because I can’t really meditate with my hyperactive mind. I try my best and hope some day I’ll get there. My neuro prescribed Ritaline to help with the fatigue but I haven’t tried it yet because I’m still trying to manage it on my own. Let’s see how that goes.

No big changes, just small ones, some good, some bad. It has been an awful year at work (changed for worse) which has been the main culprit of my mental fatigue. College was also tiresome and disappointing. On the good side, I’m volunteering with three patients’ associations and I found a new motivation and purpose with that. I also started dating again, so far with mixed results (especially because I can’t figure out what I want from men and relationships) but I don’t care because I hadn’t dated in two years, so I think that’s positive.

And that’s it. I love you all and miss you and hope you are well. Even when I don’t come here I often think of you. Sending warm hugs to you all. ❤

Endo What

When I was diagnosed with endometriosis one year and a half after I was diagnosed with MS, I was surprised to learn that, unlike MS, endometriosis is not a rare disease. Yet there’s less talk about endometriosis, and there is for sure less research into finding a cure or finding ways to improve the lives of millions of women around the world. I was taken aback by how little is currently being done to understand what causes it, why and how it develops and how it can be prevented or managed once it’s settled. It’s like doctors just decide to cut you up to remove the endometriosis tissue, send you home, and do it all again when more unwanted tissue grows. Like we were needle felting pads or something.

Below is the trailer of Endo What, a documentary aiming to raise awareness to some of these issues. And take a look at this insightful Guardian article which lets you know more about it. And then let’s all say “Enough already!”

Accident

Dear friends,

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

First blood tests after starting Tecfidera…

… and everything’s fine! 🙂

My liver, kidneys and white cells all high fived each other, and Tecfidera winked at them approvingly.

I think I’m gonna like my own post. 😀

In other news, I’m taking Escitalopram again for the third time since 2012. Guess I really suffer from chronic anxiety… Let’s hope this weight on my chest that doesn’t let me breathe in deep lifts so I can focus on how I’m going to work on this.

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