Trauma: who is really at the door?

Yesterday my summer vacations started. I’ll be at home until tomorrow, because there are things I need to organize and take care of. On Saturday I will leave to spend some days at the beach and then some more days in the countryside, and I’m looking forward to it.

But yesterday something really uncomfortable happened to me that I wish hadn’t disturbed my first day off from work. One of my neighbors is an old man in his 80s who used to be a policeman. He minds everyone’s business and spends his days checking who enters and leaves the building. Despite the fact that he claims he can’t see or hear very well due to his age, he knows everything that’s going on. He also walks around checking on the things the building might need, such as a new light bulb, to report to the person in charge, which this year happens to be me.

So he probably saw my car parked during the morning, concluded I was home and decided it would be a great idea to knock at lunch time. Except he doesn’t really knock once or twice and wait like normal people do. He insistently presses the doorbell and knocks on the door with his cane really hard, like the building is on fire in the middle of night and everyone needs to wake up and leave.

I was peacefully finishing lunch while looking at some college stuff I need to take with me when I go away and I suddenly froze when I heard this. The first thing that came to my mind was something that happened when I was about 9 years old. My mother was dating at the time a really charming and intelligent man who had a terrible flaw: he drank, and when he did he became violent. So one night he came pounding on our door so drunk we couldn’t even make out what he was saying. I remember my mother telling my sister and I to hide in the closet, while she picked up a knife and desperately tried to call my uncle to come help us.

Yesterday I was 9 again, frozen, heart racing. I couldn’t react like a normal adult. Though I rationally knew what was going on with me, my body reacted automatically perceiving danger where there was none, because my body learned really early that someone at the door like that meant bad news, so it turned on a stress response I couldn’t control. After this went on for some time and the old man was still at the door, I managed to gather a thought: I thought I should call the police. And then I realized how ridiculous that thought was. I basically managed to tell myself I’m not 9 anymore but I still perceived myself as in danger. And this unfortunately sums up much of my behavior in life in general. I’m hypervigilant and have always had so much trouble sleeping all my life because I never feel completely safe. This chronic stress messed up my immune system and resulted in autoimmune diseases. And what’s missing from therapy is that I know all the roots to my problems but I haven’t yet managed to change my reactions and behavior patterns. I need to take that leap. Or I’ll just keep getting sicker and sicker.

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The power of negative thinking

I stole the title of this post from one of the chapters in the book When the Body Says No, by Dr Gabor Mate, because it said a lot of interesting things about positive and negative attitudes towards chronic illness, which is what I want to rant about.

After a while of being diagnosed with multiple sclerosis, when trying to keep my head above the water became less strenuous, I started trying to connect with other people like me. I found a lot of communities. Some of them were filled with people struggling with a lot of challenges and difficulties, and as much as I wanted to help and give my support, it became really depressing to visit those communities every day and read all those complaints and think that those things can happen to me someday,

And then I found other communities that were the exact opposite. At first, I wanted to jump on the positive wagon. I mean, who doesn’t want to be surrounded by positivity, right? But then again… I changed my mind. Some of the people who are members of these communities are bloggers and guest bloggers that go around the internet giving you tips and recipes to manage your day, your symptoms and your well-being. But some of them, if you follow them on Twitter, spend their days complaining about how their legs gave in, they couldn’t leave the house, they were in such pain, etc. And it gets depressing. More depressing than the depressing communities. Because these people sound like – and here comes an ugly word – hypocrites. There, I said it.

Another thing that’s bothering me is their advice. This week I clicked on a link to a blog post with tips to managing brain fog. I suffer a lot from brain fog so I was interested. And then I was disappointed. The tips included “Take naps along the day” which I would love to but I’m working 9 to 5 and I can’t really nap in the office, “Drink lots of water” which is lovely but I’m already drinking 2 liters a day, should I really drink more and become a swimming pool?, and “Cut on caffeine”, another great tip since I only drink one coffee a day. There’s probably a chance these tips are going to help someone, but to me they just felt unrealistic, childish and indulgent.

But that’s not the biggest problem I have with all this positivity. Today I watched an interview on a news channel with a fellow MSer about my age that really pissed me off. Among other things, she said that if you believed in your dreams you could make them come true. I may be a little skeptical and sound a little mean here, but I’ve lived enough to know that’s not true when you have such a debilitating condition like multiple sclerosis. I don’t believe in unicorns. I believe that if you’re strong-willed, if you have supportive people around you, a great team of healthcare providers and – let’s not kid ourselves – some money, you can make things happen, yes.

Statements like “Just believe you can” are not only misleading but they can be offensive too. I’ve read stories that made me feel like I’m not a worthy MSer just because I can’t run the marathon or climb the Everest. I could barely run 4 miles after 4 months of training, before I gave up because of the winter. Oh yes, I forgot to mention that I’m the only MSer who isn’t bothered by the heat, it’s the cold that gets to me, so I guess that’s another reason I’m probably not a worthy member of the family. I could write a great post with tips for all of you to survive the summer (try being born in a Mediterranean country, you’ll grow up used to really hot and really long summers) but I don’t pretend to know what works best for you and preach about it. Everyone is different. And no, it’s not great to have a chronic illness and have to deal with things most people don’t even dream of, so don’t make it sound like it is. Yes, there are good days too, and humor in many situations, but you can feel it when it’s authentic and when it’s not.

“Compulsive optimism is one of the ways we bind our anxiety to avoid confronting it. […] The onset of symptoms or the diagnosis of a disease should prompt a two-pronged inquiry: what is this illness saying about the past and present, and what will help in the future? Many approaches focus only on the second half of that healing dyad without considering fully what led to the manifestation of illness in the first place. Such ‘positive’ methods fill the bookshelves and the airwaves.
In order to heal, it is essential to gather the strength to think negatively. Negative thinking is not a doleful, pessimistic view that masquerades as ‘realism.’ Rather, it is a willingness to consider what is not working. What is not in balance? What have I ignored? What is my body saying no to? Without these questions, the stresses responsible for our lack of balance will remain hidden.”

Seeing mental illness

Anxiety Holding Me Back, by Samantha Pugsley
Anxiety Holding Me Back, by Samantha Pugsley

Just found out about the Broken Light Collective, an online photography gallery for and by people living with or affected by mental illness. Absolutely stunning contributions there, I’m already following.

Read the New York Times blog to learn more about this project.

Dear sleep, I missed you

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.

Hermit me

2014 kicked off with… a tarot reading. Yes, my best friend loves tarot cards and, on the occasion of another friend’s birthday, while we were discussing getting older, the new year and the future, she laid them down and read them for the three of us just for fun. 

The Hermit card came out in my reading, and it felt in consonance with what I was already perceiving I needed at the time. Being diagnosed with multiple sclerosis brought a lot of social challenges with it. I chose not to tell most people for several reasons, but one of them is simply – and very honestly – I just don’t have the energy to educate people. Probably everyone has heard about multiple sclerosis, but apart from some notions that most likely include wheelchairs, no one knows much about it. I can try to explain, but there are so many tiny details and symptoms involved that I can’t possibly make people keep up with them all. I can hardly keep up with them all myself.

Then in the middle of January my ex-boyfriend and I had a fight and never spoke to each other again. I’d broke up with him in July because he wasn’t very supportive. He told me several times while we were together that he saw me as the person he could spend the rest of his life with, yet he didn’t make the slightest effort to learn about my condition. I find it weird that you plan to spend your life with someone with a chronic illness and nonetheless you don’t go online, don’t read about it, don’t ask about it and don’t do anything to support the person you’re with. When one day he accused me of faking symptoms, that’s when I broke up with him. I thought that by breaking up we would grow apart and he wouldn’t be comfortable with treating me as harshly as he had before, but that wasn’t the case.

So that was the last straw. I needed a break from people. A break from making up excuses, a break from feeling I needed to explain myself, a break from feeling I needed to apologize for not being like everybody else. Starting college at the end of January and having my apartment building affairs handed over to me were the perfect excuses for keeping to myself and not going out much.

Come July and I’m on break from college. I feel like I should have more time, more energy, more desire to go out. It’s summer after all. But I’m still on hermit mode. I still don’t feel like facing people. And I’m just drained. There’s physical fatigue, and then there’s mental and emotional exhaustion. Every time I think about the number of e-mails I have waiting for an answer, from friends, teachers, neighbors, I feel like crawling into bed and staying there for months in a row. Hibernating. The amount of things I need to remember about so as my life keeps running smoothly overwhelms me. Shutting myself in, living in my own world, becomes a defense mechanism, dissociating from everything that’s too much for me to handle. So here I am, hermit me, waiting for the world to stop spinning, for the day I won’t feel so dizzy.

Triggers, genes vs environment, and haunting thoughts on childhood

Last night a conversation started on Twitter about the triggers of multiple sclerosis and the question if an unhappy and stressful childhood could have messed up the immune system. I mentioned I lived my childhood with chronic stress and that has been proved to influence the immune system. When I woke up today a lot of people had stepped in with different opinions. Some of them acknowledged they had difficult family backgrounds, someone noted that while having had an unhappy childhood their brothers and sisters were fine, someone blamed it on a bacterial infection and some people mentioned genes were the only factor involved.

I believe that somehow all these are connected. Genes play a part. They carry the information that determines which conditions you’re more likely to develop. They’re probably the reason some people develop multiple sclerosis, while others develop rheumatoid arthritis, ALS, etc. However, they can’t be the only reason. And now I’m going to quote Robert M. Sapolsky on this article because he explains it a lot better than I do. Robert M. Sapolsky wrote one of my favorite books on stress, Why Zebras Don’t Get Ulcers, and here he discusses the role of genes:

Each of our 20,000 or so genes specifies the construction of a specific protein; proteins shape the structure and function of cells, the communication between them, and their collectivity as organisms. Scientists once thought that, starting at the beginning of a chromosome, there’d be a stretch of DNA coding for gene A, which directed the construction of protein A. Immediately after that would be the DNA coding for gene B, specifying for protein B, followed by gene C, and so on.

But this turned out to be wrong. Between the stretches of DNA coding for two genes came a stretch of ‘non-coding’ DNA, once pejoratively called ‘junk DNA’, of no obvious use. Then came the astonishing discovery that approximately 95 per cent of DNA is non-coding. It can’t be that nearly all of DNA is junk; instead, much of that 95 per cent is the instruction manual for using genes. More specifically, these ‘regulatory elements’ are the on-off switches determining when and how much a particular gene is transcribed (ie, prodded into instigating the construction of its protein). Just before the start of the DNA coding for a gene is a stretch of regulatory DNA constituting that gene’s ‘promoter’. If a particular ‘transcription factor’ comes floating over from somewhere in the cell and binds to that promoter, this triggers transcription of that gene.

So what could trigger these “transcription factors”? The answer is the environment. And environment can mean a lot of different things. That’s when lifestyle, infections, stress, emotions, etc., come in. In other words, you can have the genes that predispose you to develop multiple sclerosis, but without the right triggers you have a chance of never developing it. If it wasn’t the case, twins would suffer from the same conditions, and we know that’s not always true.

Drifting a little away from the genes topic, but still reflecting on the Twitter conversation, I started wondering about some things. While I don’t consider I had an unhappy childhood, I do know I come from a dysfunctional background. My parents divorced when I was 2 and my father didn’t care much and was always very absent. My mother was always too busy dealing with way too much she could handle on her own and didn’t pay much attention either. Except when I was sick. I remember when I was in hospital at 5 my father came to visit every day and brought me presents. My mother had to stop everything and take care of me whenever I had asthma attacks. So I wonder if I unconsciously learned in my childhood that being ill was the only way for people to pay attention to me and care for me…

 

No mind reading allowed

Many years ago I used to be upset because people hardly noticed how I was feeling about something. So one day I was told that people don’t usually carry a crystal ball around with them and they aren’t usually mind readers either. Simply put, they don’t guess how I’m feeling unless I tell them. I thought that made an awful lot of sense (why didn’t I think of that?) so I started working on expressing my feelings.

~ I later found out I need to learn how to deal with people who still don’t care even when I do express my feelings, but let’s save it to another post. ~

Fast forward to the present day, and it’s time to take it a step further. Because it’s just not enough to express your feelings and then wait around for people to guess your needs based on those feelings. Again, no crystal balls or mind reading involved. If I want them to know and meet my needs I need to express them.

~The fact that I need the help of a therapist to come to these conclusions kind of worries me, but hey, I’m flawed. ~

So let’s see how this goes. I haven’t told my boss that I need a raise or my infatuation that I need him to take his clothes off (*giggles like a 15-year-old*) but I have been telling people that I need to rest. I think that’s a start. There’s always a chance some of them might feel threatened by my assertiveness (“Really? She has needs? Now what?”) but the good news is I might start attracting different people and developing healthier relationships. And god knows how I need those…

What the Therapist Thinks About You

Have you ever wondered what your doctor or your therapist writes about you? And would you want to read it? I certainly have thought about it, though I’m not sure I would want to know. Probably my low self-esteem, my insecurities, and my lack of trust fear that my therapist is writing nasty things about me while telling me the opposite. Or maybe knowing my behavior patterns have names, some of them weird and scary, carries with it a sense of stigma I surely don’t want to feel. Besides, names make things sound definite, like you won’t be able to change them. On the other hand, maybe reading my therapist’s notes could give me a sense of progress, more structure, and possibly even a boost to my self-esteem. I don’t know.

Last night I saw on Twitter this New York Times article that debates the pros and cons of sharing physicians and therapists notes with patients. There are some very interesting points made there. For instance, one woman with multiple sclerosis “finds that her medical and mental health notes complement each other.” I also found interesting how some therapists are increasingly using the internet to connect and help their patients. Makes it look like a true team effort, and not like we’re people who cease to exist as soon as we leave the office.

What about you? Would you want to know?

It’s Not All in Your Head: Depression, Anxiety, Mood Swings, and Multiple Sclerosis

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You probably saw it on the internet as many times as I did: depression rates among patients with multiple sclerosis are considerably higher than in the general population or among patients with general medical conditions other than ms. Three main reasons are usually referred to explain this: a natural response to the diagnosis and to the many losses ms brings along the way; possible medication side effect (especially if you’re on interferons); and damage caused by ms lesions to the brain structures that regulate emotions and emotional responses.

However, this book takes it a step further, by pointing to research that suggests that depression may be an inflammatory disorder, much like ms. It is found to be an early sign of many inflammatory conditions. I remember my neurologist telling me the first symptoms of ms were fatigue and depression. I could understand the fatigue part but I couldn’t quite get how depression fit. This books explains why, emphasizing the role of cytokines in the process. So, instead of looking at depression as a consequence, maybe we should be looking at it as a different underlying mechanism.

Another thing I learned from this book was that pain and anxiety share some of the same biological mechanisms. Being that a lot of people with ms suffer from pain, improving patients anxiety levels could greatly relieve pain as well. Anxiety and depression can and should be dealt with through every option available, including medication, exercise and cognitive therapy.

The book then proceeds to suggest many different self-help techniques, illustrated by stories of people living with ms. Now, as a self-help book, Alison Shadday’s MS and Your Feelings will always be my favorite. I found It’s Not All in Your Head to be a bit repetitive at times and not delivering in some crucial moments. For instance, at a certain point, we’re invited to write down our roles in life, identify the stressors associated with each role, and then come up with solutions for each stressor. The author gives examples of roles (patient, parent, student, employee…), of stressors (MRIs, family holidays…) but no examples of solutions. I reckon however there are good tips in this book and therefore I recommend it.

Here’s the Amazon link if you wish to learn more:
http://amzn.to/1zmvOkc