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

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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

I Monday Need Tuesday A Wednesday Break Thursday From Friday Myself

saturation point. n. 1. Chemistry The point at which a substance will receive no more of another substance in solution. 2. The point at which no more can be absorbed or assimilated.

This is what MS does to me. It makes me reach my saturation point way sooner than I once did. The point at which fatigue evolves into pain because no matter how many hours I sleep they’re still not enough. The point at which I can’t stand hearing my friends talk because everything they say seems trivial and shallow compared to what’s going on in my mind. The point at which just the thought of typing a few words here drains me. Continue reading

Christmas with you

This is a little appreciation post I’ve been meaning to write for some time but haven’t quite managed.

I wrote my first blog post here in March and back then I didn’t imagine that such amazing people with such meaningful experiences were going to read me. Least of all that around six months later I would be nominated for awards. I was nominated for the One Lovely Blog Award by Life in Slow Motion and by A Body of Hope, and for the Liebster Award by Love My Life Anyway and by Invisible Pain Warriors.

I didn’t accept any of the nominations for two reasons. One is that I had a relapse in September and my life turned upside down, with bad news, MRIs, blood tests, changes in medication, struggling not to drop out of college, and finally feeling a new round of depression knocking on the door from the end of October until now. The other reason is I love so many different blogs that I can’t pick them all. You see, I’m a Libra, making decisions is hard for me. 😉 And mentioning some blogs while leaving the others just didn’t seem fair.

When this journey began, I envisioned this blog as a source of information on everything I’ve been researching since my MS, endo and PTSD diagnoses. It actually took on a totally different shape. It became more personal. An outlet for questions, doubts, reflections and occasional angry rants. I sometimes wondered how to grow my number of followers and I wrote a couple of posts with “10 tips” and how-to topics because they seem so popular. They’re still in the drafts folder as I never published them. They’re just not me. I figured if my writing were true to myself the right people would show up, like and comment.

They did, and became like a family to me. I needed that. A chronic illness diagnosis sets you apart from everyone else. It isolates you. With MS, because it manifests itself in such different ways from patient to patient, it even isolates you from other MS fighters who may never have experienced your symptoms. In the three years since I got the bad news, I realized some of my friends were really not good friends at all, so I chose to let go of them. And even with the friends I have that are absolutely wonderful, they just don’t know what it’s like. They listen, they try to comfort, but they have no idea.

So that leaves me with how important the interactions with you are for me. And you know who you are. You are the ones who read me and get me, no matter how flawed and lost I may be. You are the ones I read religiously, I care about and worry about when you’re too quiet. You probably have no idea how the kind words you left me felt so supportive many times. I sometimes wish I had more spoons to leave you more comments like that, but in the end of a busy day my mind is often unable to complete a sentence in English that will make sense to you.

Christmas is hard for me because my family is the definition of dysfunctional. And New Year is also hard for me because it makes you look back, look ahead – and I can’t help but feel overwhelmed and hopeless. But I guess I can take them as chances to stop and thank you for your generosity, for giving so much of you and adding meaning to my life.

Happy winter solstice (summer for those in the Southern Hemisphere) and happy holidays. 🙂

In the land of what if’s

It started Sunday night. As I was saying goodbye to my mother after our usual Sunday dinner at her place, she mentioned she’d read somewhere that 7 am was the best hour to wake up. Something to do with sleep cycles. I jokingly said something like, “Unless you’re living with multiple sclerosis,” and reminded her that I didn’t use to have any trouble getting up in the morning before, but for the past years I can’t seem to get up. Sometimes the alarm rings every 5 minutes for half an hour and I simply don’t hear it. And then my mother said, “Yes, you changed a lot, but don’t forget you’re also taking things to sleep and those make it harder for you to get up.” I replied I’ve only been taking meds since 2011 and that my troubles started earlier, but as I went home I started thinking “What if?” What if the meds are taking even more of my energy than MS already does? Last year I stopped taking one of them and what happened was that two months later I was insomniac again, waking up at 2, 3 and 4 in the morning unable to go back to sleep again. That means I’m not leaving them anytime soon, but it got me thinking.

And then my what if’s snowballed. What if my fatigue is not solely MS-related? Endometriosis is said to cause fatigue, as well as depression and stress and anxiety disorders. Could my fatigue be the sum of all these causes? (No wonder I’m tired.) And what about brain fog? I spent Monday and Tuesday with a bad case of brain fog. It got so bad that at a certain point I realized I didn’t know how to do my job anymore, the one I studied for and have been doing for the past ten years. You see, among other things, I translate for a living, and after staring for hours at two pages I needed to translate I suddenly found myself thinking that Google Translator is an excellent tool. (If my next post is about me being fired you know what happened.) What if the meds are also contributing to brain fog? Or what if brain fog is simply caused by my lack of motivation, that on the other hand makes me spend most of the days daydreaming of better things and dissociating as a means to escape my normal life?

And what if I made up all these what if’s because I’m still in denial and looking for clues that tell me that after all I don’t have MS (they could have switched my MRI’s in the hospital with someone else’s) or that it isn’t so bad?

Jesus.

My health defies any logic. The only two things that usually lift my brain fog are lying down and resting, or taking a walk, preferably next to trees or water. On Monday, as I was too tired to go for a walk, I lay in bed a little before dinner. It seemed to make it worse. On Tuesday, I didn’t rest and instead went shopping. That seemed to do the trick, as on Wednesday my mind was clear. So the brain fog is either motivation-related, or my MS didn’t like the fall/winter collection and went into hiding.

My behavior also seems to defy logic. Yesterday there was a family dinner, and I suddenly heard myself cutting everyone off mid-sentence to tell them it was getting late and I needed to go. I usually have to think and gather my strengths before being this assertive, but last night it just came out naturally. And I didn’t feel guilty about it. After all, both my father and stepmother are retired, and my sister is taking these last days of August off, so I was the only one who needed to get up early today to go to work.

Last but not least, my therapist thinks I’ve been too focused on my health (seriously? lol) and that maybe we need to work on other areas, such as my social support network. But I’m still on hermit mode, so I’m not sure how that is going to turn out. Will keep you posted. 🙂

Hermit me

2014 kicked off with… a tarot reading. Yes, my best friend loves tarot cards and, on the occasion of another friend’s birthday, while we were discussing getting older, the new year and the future, she laid them down and read them for the three of us just for fun. 

The Hermit card came out in my reading, and it felt in consonance with what I was already perceiving I needed at the time. Being diagnosed with multiple sclerosis brought a lot of social challenges with it. I chose not to tell most people for several reasons, but one of them is simply – and very honestly – I just don’t have the energy to educate people. Probably everyone has heard about multiple sclerosis, but apart from some notions that most likely include wheelchairs, no one knows much about it. I can try to explain, but there are so many tiny details and symptoms involved that I can’t possibly make people keep up with them all. I can hardly keep up with them all myself.

Then in the middle of January my ex-boyfriend and I had a fight and never spoke to each other again. I’d broke up with him in July because he wasn’t very supportive. He told me several times while we were together that he saw me as the person he could spend the rest of his life with, yet he didn’t make the slightest effort to learn about my condition. I find it weird that you plan to spend your life with someone with a chronic illness and nonetheless you don’t go online, don’t read about it, don’t ask about it and don’t do anything to support the person you’re with. When one day he accused me of faking symptoms, that’s when I broke up with him. I thought that by breaking up we would grow apart and he wouldn’t be comfortable with treating me as harshly as he had before, but that wasn’t the case.

So that was the last straw. I needed a break from people. A break from making up excuses, a break from feeling I needed to explain myself, a break from feeling I needed to apologize for not being like everybody else. Starting college at the end of January and having my apartment building affairs handed over to me were the perfect excuses for keeping to myself and not going out much.

Come July and I’m on break from college. I feel like I should have more time, more energy, more desire to go out. It’s summer after all. But I’m still on hermit mode. I still don’t feel like facing people. And I’m just drained. There’s physical fatigue, and then there’s mental and emotional exhaustion. Every time I think about the number of e-mails I have waiting for an answer, from friends, teachers, neighbors, I feel like crawling into bed and staying there for months in a row. Hibernating. The amount of things I need to remember about so as my life keeps running smoothly overwhelms me. Shutting myself in, living in my own world, becomes a defense mechanism, dissociating from everything that’s too much for me to handle. So here I am, hermit me, waiting for the world to stop spinning, for the day I won’t feel so dizzy.