Getting worse

The question I’ve been asked more frequently in recent weeks is whether I’ve heard from the hospital. This, while showing concern and interest, is beginning to feel like a burden for me. Continue reading

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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

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. 🙂

Guinea pigs have feelings too

One thing psychiatry and neurology have in common is that patients get medicated by trial and error. I was diagnosed with MS three years ago and I’m about to try my third treatment (I’m hardcore like that). And since I stepped into a psychiatrist’s office for the first time four years ago, I have tried many different drugs, some more effective than others.

Doctors look at you, listen to your symptoms, look at your tests, and still have no way to predict if a given treatment is going to work for you or not. That leaves patients sometimes feeling like guinea pigs. And oh well, guinea pigs get tired of trying too. This particular guinea pig suffers from chronic fatigue that is physical, mental and emotional. Every day this guinea pig goes home feeling like it just completed the Olympics. And after all these years exhaustion is getting the better of it.

I called my psychiatrist earlier this week because fluoxetine is making me feel even worse than I was, and she decided to switch me to paroxetine. Reading about it online, it seemed to me more of the same. So is it even worth trying?

I wondered – what would happen if I just stopped?

And do I really want to know? 

I’m currently discontinuing fluoxetine according to my psychiatrist’s treatment plan, but I haven’t picked up paroxetine yet and I’m not sure I will. I’ll see how this goes.

Downward

Tomorrow it’ll be two months since I started taking fluoxetine. I’m hoping I can catch my psychiatrist on the phone because things aren’t looking good. I’ve been feeling more and more down, and I haven’t been able to do much because I’m always so tired and when weekends come I just sleep.

As usual with depression it is hard for me to identify the feelings that are bringing me down because everything feels so mashed up inside my head. Thoughts become intricate and confusing, vision narrows, breath seems to become shorter. I cry a lot. Fatigue worsens. I forget to take my daily injection. And when my mom called last night a little tipsy from dinner and making up silly jokes, I didn’t feel like laughing. And believe me, my 67-year-old mom is the funniest sweetest thing when she drinks just a few drops of red wine and immediately starts acting like a silly drunk lady. But I’m just so out of tune.

I’m writing because I’m trying to break things down so I can make sense in case my psychiatrist wants to see me. So what is really squeezing my lungs, heart and guts and making me just want to cry?

Uselessness. Suddenly I look back and everything I did this year seems worthless. What am I going to take from my post-grad? Not a new job, by the look of it. This blog? What’s the point? Everything I read? I’m not becoming healthier or saner just because I know a lot about neurology and psychiatry. And what about next year? I’ve been thinking about projects. I want to write a book that I’ve been carrying with me since last year. And I want to write another book to raise awareness for MS. But even if I get them published, will they reach anyone? Will they make a difference? I also want to start taking my master’s in September. But I’m not sure I will be able to survive such a busy schedule, so why do I even bother? And I want to do some volunteering, but will I add anything to anyone’s life? Because, you see, I’ve been feeling. . .

. . . Unable to connect with people. Classes ended, and I will still see my class mates at least once more and we’re all friends on Facebook and all that. But in the end of the day, years will pass and no one will stay. Everyone will go about their businesses and I will be just another forgettable person they once knew briefly. Everything moves so fast and is so ephemeral. Yesterday I was thinking about relationships and unfaithfulness, and it made me so sad to realize we treat most people like objects. We come in, just take and take and take, never give anything, we play and leave the toy there. And I’m one of those people in need of so much more. Human touch. Human warmth. Deepness. Safety. Little details. But I don’t trust anyone. I’m disillusioned. And I don’t go out much because. . .

. . . MS is preventing me from being so much more. I go to work everyday and it takes all my spoons. I feel miserable because my life has become just work. I miss going out after work for a coffee or maybe dinner with my closest friends. I miss them, miss their support, miss our jokes, and I miss being there for them as well, being the loving and caring friend I suppose I used to be. But I just don’t have the energy. I sleep 9 hours on weekdays and 12 on weekends. If I don’t, I don’t function well enough in the real world. But that doesn’t leave much room for anything else, does it? And I never thought my life would become so… sterile.

I’m in the middle of the tunnel. I feel I’ve been swallowed by this darkness I didn’t see coming. I think I kept myself so busy this year in order to mask all this darkness. I feel like these two.

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More medication changes?

I saw my psychiatrist today and I obviously had to update her on the latest developments about my health. So from there we started talking about what this all means in terms of my mood and sleep. I haven’t been sleeping well since those steroid infusions, but I’m confident my sleep will be back to usual patterns as soon as the steroids wear off, which, according to my neurologist (and my weird nights) hasn’t happened yet. So for now I’m going to keep taking trazodone at night.

Now for my morning pill. I’ve been taking escitalopram for some time and I’m quite happy with it. In fact, about a year ago, when I felt better and more stable and suggested my psychiatrist should take me off of it and see what happens, what happened was I stopped sleeping again. Escitalopram, being an antidepressant designed to treat anxiety as well, has been doing wonders for my insomnia, which has a lot to do with anxiety.

However, I haven’t been feeling anxious lately. At all. Instead, I’ve been dealing with everything by hiding from the rest of the world, feeling demotivated and generally more sad. So she thinks it might be a good idea to try something more uplifting, as in fluoxetine. That is, Prozac. Oh dear. 😦