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. ❤

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

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

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

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

What the doctor said

So… classes started last month and suddenly I can’t catch my breath and write a few words here. But here I am trying to keep you up to date.

At the beginning of the month, October 5th to be more specific, I switched to the full dose of Tecfidera. I thought, considering how bad my flushing could be on the smaller dose, that I would simply go from flushed to radioactive. As it turns out, nothing weird happen. I never had headaches or itching anymore, and although I still flush, it didn’t get worse. Some days it’s actually milder. So that’s really good. Continue reading

Then the fog came

As I’m nearing the end of my holidays, I can’t help but to think about how they went compared to my expectations.

I drove here with a heavy heart. Filled with loneliness, sorrow, completely lost. Feeling invisible to the world, immaterial. I couldn’t think because there was so much background noise back home. So much to deal with, to go through. My head was foggy, groggy, couldn’t focus. I hoped to be able to think a little more clearly. But I’m not sure I accomplished that goal. Continue reading

Waiting, waiting, and it’s doing me in

As I keep waiting, wondering what medication I will be taking in the future, what side effects it will give me and if it will do anything to slow my MS, life hasn’t stopped. I keep going to work everyday, to my weekly yoga class, I keep going out occasionally with friends, I keep spring cleaning even though it’s summer now and wondering how to give my apartment some final touches (it’ll be four years on Tuesday since I moved), and I generally keep doing what I normally do. And I keep waiting. Continue reading

What about now?

The last time I really fell head over heels with someone I didn’t feel tired. Me, the one who was always tired and didn’t even know why, found energy where there was none, found ways to continuously pick herself up because body and mind were so light. Does love cure all? No, I don’t think so. But maybe the rush of chemicals released into our bloodstream when we’re in love have protective and anti-inflammatory effects (this is totally unscientific, please don’t quote me) and somehow help mitigate symptoms.

But that was a long time ago. That was before I was diagnosed. Continue reading