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

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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

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. 🙂

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.

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. 🙂

Fatigue in multiple sclerosis could be pinpointed to brain region

Fatigue, though probably the most prevalent symptom of multiple sclerosis, is still a bit of a mystery to researchers and scientists. I know I have blind spots because I have lesions in my optic nerves, but there is no lesion in the MRI that the neurologist can point out and say, “This lesion here is the reason why you’re so always so tired.”

I’ve seen fatigue described in many ways and I’ve read different explanations for it. One of them has to do with inflammation. We know inflammatory processes in the body cause fatigue because they mobilize your defenses in order to stop them. Another explanation has to do with the lesions themselves. Every time there’s a message to carry and the road is blocked, your nerve cells find a way to go around it, taking a detour. That obviously uses up more energy and resources.

Now a recent study suggests that fatigue in multiple sclerosis may be connected to a specific region in the brain. Much like a stable person can suddenly develop mood disorders if they have lesions in brain regions that regulate mood, these findings hint that “Damage to strategic brain white matter and grey matter regions, in terms of microstructural abnormalities and atrophy, contributes to pathogenesis of fatigue in MS, whereas global lesional, white matter, and grey matter damage does not seem to have a role.”

If this turns out to be right, maybe, just maybe, we can hope that more studies will follow and we get more effective treatments? Pretty please?

Balance, limits, listening, pacing, speeding, braking and other confessions

About a month ago I wrote about learning to express my feelings, and then start working on expressing my needs. It makes a lot of sense, but I also pointed out to my therapist that before expressing my needs I needed to learn how to recognize them. Truth be told, I never paid myself much attention. I only tend to my needs when my body becomes unbearably uncomfortable. My therapist illustrated this to me with my relationship with food. Sometimes I only remember to eat when my stomach is hurting and low blood sugar is starting to make me freak out. She says I must remember to take care of myself before it ever gets to that point. I must listen to the signs my body sends me before I become sick. She acknowledged that I’m only acting out what I unconsciously learned during my early years, and that is that people will only tend to my needs after I get sick. But she also reminded me that I’m not a baby anymore, that I can tend to my own needs and I’m responsible for my well-being.

But old habits die hard. Having low self-esteem doesn’t help. Based on what I know happened during my childhood I probably “learned” that being invisible would be better for everyone. I had a dance teacher once telling me, “Sónia, you must stop apologizing for being.” Most of the time I go on pretending I don’t exist to myself. I don’t like looking in the mirror. I don’t take enough breaks at work, which is terrible for my neck, my back and for my brain fog. i just ignore myself. Life makes sense to me if I pay attention to other people’s needs first and let myself fall behind.

I don’t know if the fact that I feel like I’m a weird puzzle is a cause or a consequence of this. I’m almost 32 and I can say I never figured myself out. I’m spending these last days of my summer vacations with a friend and the other day I told her, “I don’t really know who I am.” I can be a lot of different people, put on such different masks depending on the context that sometimes I even surprise myself, like I’m an actress or like I’m watching myself from the outside. I have great strengths and great weaknesses and they all mean something different depending on what I’m going through at the moment. It’s… puzzling.

il_570xN.202356785Usually when I’m in a good mood I say just for fun that having been born in October I’m the most unbalanced Libra you’ll ever meet. As a child I could be very quiet playing by myself for hours, and I could also be very hyperactive, yelling and running around and making everyone around me really tired. This latter state I think was – and still is – fueled by a lot of anxiety, hyperarousal and hypervigilance as well.

Growing up, I kept feeling for most of the time completely restless. Part of that restlessness was what it’s now called in social media FOMO (Fear of Missing Out), as I had the feeling the world was turning and I wasn’t keeping up with it. The other part of it was the need to plan everything ever so carefully for fear of losing control. Even in my early 20’s when fatigue settled in, I kept on pushing myself, and pushing myself a little further, ‘cause if anything ran out of my control I would become terribly anxious and nervous – and if everyone else was living while I was merely surviving I would fall into depression and I didn’t want that.

Pedestrian_LED_Traffic_Light_NYCBeing diagnosed with multiple sclerosis at 29 became a double-edged sword. On the one hand, for the first time in my life, people convinced me – and I realized – that it was ok to rest. I finally started on a journey meant to teach me how to monitor myself. I’m still far from reaching the destination, but I definitely started listening to myself more, paying attention to my limits and to what my body was telling me in each different situation. I found out it was not only ok to rest, it was also ok to take breaks, to hit the brakes, to say no, to do nothing, to not be productive, to not prove myself to anyone, to just be. And I found myself enjoying it, my self-indulgence-I-have-the-right-to-be-healthy time.

pedestrianOn the other hand, I became even more restless, more hungry for new experiences. Whenever a challenge presents itself to me, even if a little dangerous, I think to myself, “I don’t know for how long I’m going to be able to do this, so here I go.” Or, “I don’t know for how long my legs are going to keep on working so let’s just do it, right?” 

On Monday, my friend and I decided to go see the caves that are nearby the place where we’re staying. Our guide was a former Boy Scout who grew up in the region. He was fairly at ease, going into the woods, climbing up the rocks and hills, going down the caves, showing us around, “This is where a Neaderthal’s tooth was found,” and all that. My friend also seemed pretty comfortable. Me? Let me just say that I don’t trust my balance that much. Even though for the last 10 years I was taught yoga, Pilates, several contemporary dance techniques and kept being told my balance was great, I’m really insecure about it. I was dreading I would fall down at any time and make a fool out of me. But I kept following them, panting as if I was an inveterate smoker. I must say at this point that not even my friend knows about my MS, and I didn’t think it was appropriate to stop them on their tracks and yell, “Wait, I have multiple sclerosis, please bear with me ‘cause I have balance issues and I also get really tired!” When we reached the entrance of one of the caves and I saw our guide take a rope out of his backpack because it was “easier to go down there holding on to a rope” my knees started shaking. No, they weren’t shaking because I have MS, they were shaking because I don’t trust myself. I’m glad I decided to go because the inside of the cave was pretty wondrous, but when I left I was kind of angry because I didn’t take any pictures. Well, I needed both hands free to hold on to the rope, which meant leaving everything I had with me outside, but does that count to my perfectionist self? No.

So on Tuesday, I left my friend reading and napping on the garden, I took the keys, my cell phone and my camera, and went back to the caves. I enjoy doing things by myself because people either speed me up and I get really tired, or slow me down and I get impatient. Going by myself means I get to keep my pace. Now, I’m not completely crazy and I didn’t go back to the most dangerous ones, especially because I had no equipment whatsoever with me. But I wandered. And I wondered if I’m ever going to find that middle ground between wearing myself out completely and letting life pass me by. And wondered what I keep trying to prove myself. But whatever it is, I will be taking pictures of it.

"You wanna see the caves? Sure, that way. Then all you have to do is climb and get a little lost."
“You wanna see the caves? Sure, that way. Then all you have to do is climb and get a little lost.”
"Like this. Keep going."
“Like this. Keep going.”
"Oh, come on, don't look back, you haven't climbed *that* high, keep going."
“Oh, come on, don’t look back, you haven’t climbed *that* high, keep going.”
"There you go."
“There you go.”
"See how the light looks splendid after you get out of a cave?"
“See how the light looks splendid after you get out of a cave?”