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.
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. 😦
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?
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. 🙂
The first night I remember waking up in the middle of the night and not being able to go back to sleep again I was 15. It’s likely my sleep issues started earlier, as I remember always being a very light sleeper, but that was the moment when sleepless nights became something like normal routine to me.
I tried everything I could remember, especially because I didn’t want to be medicated (I’m currently taking 6 different medications every day, so haha, the irony). Medication had side effects. I didn’t want to become a zombie. I didn’t want to admit defeat and ask for help. I thought I could outsmart myself and beat this devil in me that didn’t let me rest. I always had the notion that what was causing this was psychological rather than physical, so I thought I could somehow turn this around.
Then at the end of 2010, when I was 28, I went through a really rough period in my life and became severely depressed. I wasn’t neither eating nor sleeping at all. That’s when I saw a psychiatrist for the first time in my life. I started on an antidepressant (Agomelatin, which didn’t do much for me) and on small dose Cyamemazine for sleep. Cyamemazine is an antipsychotic drug and for some time I thought I was going psychotic much like other members of my family, but later my new psychiatrist explained Cyamemazine is also used to treat anxiety in other cases, so I took a deep breath.
Cyamemazine made me sleep deep and peacefully like a baby and those were happy sleeping times. Funny enough, after a while on it, it occurred to me for the first time that something could be seriously wrong with me. You see, I’d been feeling abnormally tired for years now, but I attributed it to suffering from insomnia. But now… I was sleeping safe and sound and still kept on feeling so awfully tired. Then at the end of 2011 I was diagnosed with multiple sclerosis and things started to make sense.
I had to change medication, because Cyamemazine, being a neuroleptic, can accelerate demyelination, which is not good news when you have ms. I couldn’t go back to not sleeping because not only studies suggest our body produces myelin during sleep but also because I couldn’t possibly handle the subsequent fatigue. I changed psychiatrists (my first one didn’t want me to stop Cyamemazine despite what my neurologists said) and I started taking Escitalopram at breakfast and Trazodone before going to bed.
I immediately felt a difference. On the one hand, Escitalopram really did its job with stabilizing my mood and my anxiety. My chest used to hurt due to anxiety to the point I thought I had some cardiac disorder, but as soon as I started taking Escitalopram I never had that again. On the other hand, Trazodone wasn’t as good as Cyamemazine in making me sleep. I noticed my sleep became lighter and I sometimes woke up a little earlier, though nothing compared to waking up at 2 or 3 in the morning. So as long as I was having 7 to 8 hours of sleep every night, even if it wasn’t such a deep one, I was still happy.
Then last summer my psychiatrist and I decided I was more at peace with my diagnosis and dealing with things much better so we tried to take Escitalopram from my cocktail and see what happened. A month off of it I started waking up half an hour before the alarm, then one hour before, then two hours before, and so 4 months later I went back to taking it. This really seems to confirm that my sleeping issues are all related to depression and anxiety and panic disorders.
Sleep became an issue again these past two weeks. I’ve been waking up before the alarm, sometimes 20 minutes earlier, sometimes one hour and half earlier and anything in between. This isn’t something that bothers me much if it happens occasionally, but these past two weeks it happened every day. My fatigue worsened a lot and my mood became somber. And why have I been waking up? Well, there’s a simple answer for that: nightmares. I wake up after a nightmare (or several, it depends) and I can’t sleep again. Sometimes I consciously decide not going back to sleep, because I don’t want to keep having nightmares and become so agitated.
What do I dream about? It varies. Sometimes my nightmares wouldn’t be considered nightmares by most people. They’re just uncomfortable dreams, but those uncomfortable situations I dream about connect with very deep insecurities and fears I live with, thus resulting in my body setting off the alarms. I’m also very susceptible to everything I read or watch. Working in a publishing company mostly with children and young adult fiction, I read a lot of books that sometimes upset me. I remember having several nightmares after reading The Hunger Games, and when I read Pure I dreamed I was spying on my ex-boyfriend through a camera inside someone else’s head, much like happens with the main character. Needless to say, I didn’t like what I saw in the dream.
And then, like today, I break down. I woke up early as usual, had breakfast, and as I was feeling really dizzy and numb, decided to pick up my e-reader and do a little reading in bed. I don’t think I read a single page – I fell asleep and only woke up at 1.30 pm because I have my alarm set to that time in order to remember to take one of my many medications. I was so so so tired. I don’t even remember the last time I woke after noon, probably back in 2011 during my Cyamemazine days. I’m feeling better, but I wish my sleep would be normal enough so my body wouldn’t have to occasionally shut down like that.