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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Black Friday – as in sad and depressed

I really don’t know what Prozac is doing, but I cried more times this week than in the entire year.

First, I went to the hospital on Monday, only to find out that I won’t start Tysabri until January. Since mid-September I know I need a more aggressive drug than Copaxone. That’s three and a half months waiting, worrying about possible side effects and living with that little anxiety that the unknown always seems to bring.

Tuesday I received a phone call. In August I had applied for the Believe and Achieve Project, a project created by the European MS Platform aiming to give employment opportunities to MSers under 35. The position they had in Portugal had everything to do with my project in college, so I applied. I didn’t think they would call me for an interview because they would probably pick other MSers who were unemployed, which is not my case, but they did, the interview went really really well and I hoped I would have a chance. But on Tuesday they called telling me that, while I was perfect for the job and they really liked me, they ended up choosing someone who, due to limitations, would probably never get a job anymore if they didn’t give him/her that opportunity.

Now I want to make things clear. I’m happy for the person who got the job because everyone deserves a chance regardless of their limitations. But I’m confused. I have rejection issues and I think I’ve always been rejected because I’m not good enough. This was the first time I was rejected because I was too good. Fear of rejection just got worse for me. And that sense of non belonging I’ve been living with all my life was highlighted once more. I don’t feel well enough for many things, but I’m too well for others. I’m in this limbo, disconnected. Where do I belong? Some people say that the more rejections the easier it gets. But it’s not getting easier for me. I just feel like not trying anymore. That’s probably what separates the depressed and the non-depressed. Helplessness.

Then the nightmares started. I dreamed doctors told me my mother only had a week to live and I didn’t even have a chance to think about what that meant because I mobilized all my energies into trying to make that week the most comfortable it could be for my mom. Then I dreamed that I was sitting on a wall and I suddenly lost consciousness for just a second. When I regained consciousness, I was falling. And finally I dreamed I found out some nasty secrets about this guy I fancy. It’s funny because every time I see him again after some time, I get bad dreams. Last month after I saw him I dreamed my father and stepmother were getting divorced. Today was about dirty secrets. Either case, they were dreams about loss.

There’s also a funny thing that happens when people like me. Officially I won’t be filling my new job position until next year, but I’ve been in training. I ended up getting along well with one of the people I’ve been working with. Today he left for three weeks away on vacation but he left me some books of his. And while it’s great to have new stories to read, I can’t help but to feel that it’s a burden when someone likes me and cares about me.

And you’re gonna have to pardon my French now, but I think I’m seriously

fucked

up.

New definition of exhaustion

Last Saturday, as I mentioned on my last post, I had to sleep 11 hours out of complete exhaustion. I thought Sunday I would feel refreshed and ready to continue to fight my battles but I ended up sleeping 12 hours. I only left my apartment last weekend to have dinner at my mom’s on Sunday. She said my eyes looked really sleepy but I was in a good mood and the dinner went well. Monday morning I didn’t hear the alarm because I was in a such a deep sleep. When I finally got up, I went to the kitchen first and then went to the bathroom. I have a vague memory of a feeling of nausea taking over my body and then the lights went out. I passed out.

This was probably caused by low blood pressure. I usually have low blood pressure and spending most of the weekend in bed probably didn’t help. But what I find funny is that I woke up, and as I didn’t know where I was or what happened, I let myself blackout a second time. This to me became a new definition of exhaustion – when you let yourself lose consciousness because trying to figure out where you are and what happened is such an effort you don’t even try. I was actually quite comfortable with my system shutting down. Losing consciousness is apparently the only way to make sure I don’t worry about anything. It’s the only way my mind actually takes some time off. Because even when I’m sleeping I’m in such distress. Last week one night I dreamed I was being stalked and another night I dreamed I was trying to kill myself. Last night I dreamed I was running because I had witnessed a crime and they were after me. It involved running down endless flights of stairs and finally trying to escape on a motorcycle (never drove one in my entire life). I haven’t been watching movies or TV (no time for that) so I don’t think that could be an influence. But I can’t figure out my subconscious agenda either.

When I woke up the second time I managed to get up. I realized I had bruises on my knees, shoulder and face. I also cut my lip. I think I literally fell on my face. Had it been more serious, I wonder what it could have happened to me. I live by myself, so how long it would have taken for someone to help me if I could not do it myself? Better not even think about it.

Supposedly, my psychiatrist took me off escitalopram and put me on Prozac to help me be more “up”. When I first started reading about MS, I learned that Prozac is one of three drugs sometimes prescribed to help with fatigue. I don’t know what Prozac is doing, but I’m certainly not more “up” and I’m certainly not less tired. I don’t think that was the deal.

Speaking of meds, I finally know what my new MS drug is going to be, after failed attempts with Avonex and Copaxone. It’s still going to take a while before I start, but I will sure keep you posted.

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. 😦