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

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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

Letting our emotions speak

I went to see the movie Inside Out today. It’s entertaining, fun and light – nothing too deep here, or even 100% accurate, but let’s not forget it’s a movie and not a scientific paper. More importantly – and not wanting to give away too much here – the movie is also a reminder that all our emotions play an important role in shaping who we are and keeping us safe from danger. Often we want to shut out the most unpleasant ones – sadness, fear, anger – but they are needed, and nothing else would exist without them. Continue reading

Good news, trip to the hospital, and why from now on I’m cured

This week has been really kind of intense.

First the good news. On Monday I had an ultrasound to check on my endo and, surprise, my ovaries are clean! No cysts no nothing. Doctor says I still have endo cells and that I will always have them as it is a chronic condition, but for now things appear to be stabilized. I’ll drink to that. Continue reading

When meds turn you into someone you’re not

decompensation

Also found in: Medical, Encyclopedia, Wikipedia.

de·com·pen·sa·tion

(dē′kŏm-pən-sā′shən)

n.

1. Medicine The inability of a bodily organ or system, especially the circulatory system, to maintain adequate physiological function inthe presence of disease.
2. Psychology The inability to maintain defense mechanisms in response to stress, resulting in personality disturbance or psychological imbalance.
Decompensated in the psychological sense of the word – that’s how I’ve been feeling this past month. This could be due to several different reasons, maybe to bits of all of them together, and I’ll never really know for sure. I suspect stresses from work may have something to do with it. But I also suspect that having gone off of antidepressants is also playing a part. A big part. Someone pointed out to me that, although I discontinued fluoxetine according to my psychiatrist’s treatment plan, that treatment plan was designed assuming I was quitting fluoxetine while starting paroxetine, which I never did. So technically I can still be on a rebound, with all the chemicals in my brain doing the polka and the can-can.
For the past month, my sleep has been a total mess. I either spend the entire night waking up, tossing, turning and falling asleep again, or I wake up early and don’t go back to sleep, or I go to bed late because I don’t feel sleepy and then getting up the next morning is almost impossible. Sometimes, despite this lack of a stable sleeping pattern, I don’t feel tired. Oddly enough, sometimes I feel energized. Like I’m anxiety-fueled and a time bomb ready to go off.
Concentrating on anything has been a real challenge. I need to finish my college paper, and, really, all that’s left to do by now is write two closing paragraphs, put together the bibliographical references and come up with a nice cover. How hard can that be? Apparently, very hard. I can’t focus. All I want to do is finish the paper so I can move on to other projects piling up in the back of my mind, but somehow time is flying and I don’t really know where it’s going.
And finally, the mood swings. Mood roller-coasters. I’m running a full gamut of emotions every day, sometimes in just a couple of hours I can go from sad and despaired to confident and empowered, from nostalgic and lost to euphoric and foolish.
But this is where it gets interesting – and dangerous. If this description sounds like a nightmare to you, it doesn’t feel like a nightmare to me. If anything, it feels like coming home. This person that doesn’t know a good night’s sleep and that is incredibly moody and sensitive is the person I’ve always known myself to be. These past four years on antidepressants were like trying to be someone that I’m definitely not. They stabilized lots of parts of me, yes, but they also made me more numb. And a heart beating doesn’t translate into a flat line.
The thing I’m most angry about, though, is that I feel all this was for nothing. I’m not healthier because I’ve been taking all these meds. My relationships weren’t more functional because I’ve been taking all these meds. I don’t see much results. I tried to be a version of me that I believed, based on what people told me, that would be more acceptable, healthier, saner, more functional, better for me. Yet, people kept telling me I can’t be the way I am. By people I mean specifically family and ex-boyfriends. No matter how much I tried, how much I sought help, no one really gave me a break. I was still too intense, too dramatic, too high maintenance, too preoccupied.
So I’m giving myself a break. All my life I’ve been hearing I can’t be the way I am. “You’re too shy, you can’t be that way or you’ll never get anywhere in life.” “You’re too slim, you need to put some weight on.” “You’re too hard on yourself, that’s bad for you.” “You’re too rational, you need to express your emotions.” “You’re too emotional, you need to sober up or no one will put up with you.” Now I don’t need pills to tell me who I should be as well. So what if I’m all that? These are just characteristics. Depending on the context, they can actually be assets.
It’s really no use for me to know a lot about mood disorders, family backgrounds, all kinds of therapies or even MS if I don’t know my own soul. Sometimes you have to go back to take a leap forward. And right now, it feels really good to revisit that place, that person who wasn’t afraid that making mistakes might put her in a wheelchair.

Continue reading

Work vs Chronic illness

There’s something wrong with this title. There shouldn’t be a “vs” there. It shouldn’t be a war. But most of the times it is.

Unlike many people I know who suffer from chronic illnesses, I still work full time. And I don’t complain about that. I wish I will be able to work full time for many many years. I wish to have a life that feels as normal as possible. Then why do I feel like quitting so often? Continue reading

The chicken and the egg

So, which came first? Depression or fatigue? Am I depressed because I’m always tired due to MS and can’t realize my potential, or am I tired because it is one of the symptoms of depression?

I barely remember what it’s like to not be tired. When I was 18 I had glandular fever for two weeks. The blood tests came back positive for the Epstein-Barr virus (which is suspected to be connected with MS) and for at least six months after the fever my antibody count remained high. That was the first time I experienced severe fatigue. I lost a lot of weight. I did recover, but I remember telling a friend a year or two later that I had never felt the same after that, like the fatigue mono brought with it had never left me.

On the other hand I thought fatigue was normal because I suffered from insomnia. I remember when I was 15, roughly a year after I experienced being depressed for the first time, waking up in the middle of the night and not being able to fall back to sleep. This pattern remains the same to date. If I wake up, either due to a nightmare, noise, light or even for no apparent reason, unless I’m medicated, I probably won’t sleep. This began at 15 and only at 28, after years of trying everything you can possibly imagine, I went to see a psychiatrist and started taking meds.

With those meds my sleep became sound. But around six months later I noticed that, even sleeping like a baby, I would still wake up tired. That was the first time it occurred to me that something could be really wrong. But I didn’t have to dwell on that thought for long because months later I was diagnosed with MS and told fatigue is one of the main symptoms of this condition.

So I’m confused. Depression can cause insomnia and fatigue. Insomnia obviously causes fatigue. MS causes fatigue. And fatigue, in turn, can cause depression. MS drugs can also cause depression. Antidepressants can leave you groggy and with no energy. All these intertwine. And as much as I try to trace back bits and pieces of my life in search for clues, memories fade – and are not so reliable.

I stopped taking fluoxetine this weekend and I immediately noticed a difference in my sleep, as it is lighter. But today I started taking my first prescribed drug for fatigue, amantadine. My MS specialist prescribed it a couple of years ago but I never tried it because I was taking so many meds at the time I worried about possible interactions. I hope I will be able in a few weeks time to tell what it feels like to not treat depression and treat fatigue instead. Will there be any difference?

In the meantime I will be spending January tying loose ends from 2014, including college (only a month to finish my final paper!) and the switch from Copaxone to Tysabri (how hard can it be? Apparently very hard for the NHS).

I wish you all a very good year, with good health on top of all. 🙂