Life with chronic illness

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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. 🙂

The feel good post

Today I went running for the first time since January. Unlike many chronic illness sufferers, the heat doesn’t bother me that much. The cold, however, (and the wind and the rain) really does me in. No matter how much I warmed up, I could hear and feel my knees and ankles cracking like an old lady’s. Also, I had to have warm clothes on before going on, otherwise I would freeze, but as soon as I started running I would overheat and would have to take off some of the clothes in the middle of it (not a very fancy strip, I can assure you) and carry them with me until I finished.

So I decided to stop for a while. By the time the weather got better it was the end of the semester and I was way over my head with work. Then I went away on vacation. So here I am, 7 months later. I went to the same circuit I used to do and – surprise – I wasn’t that bad. 😀 I think I did it in more or less the same time, the only difference is today I took several walk breaks whereas before I would just take one.

Either the exercising I’ve been doing at home to compensate for being on a hiatus from my dance classes and from running has kept me more in shape than I thought, or while on vacation I worked out more than I thought from swimming in the ocean and hiking in the woods. Whatever it was, I feel pretty good about myself right now. As soon as I started work again on Monday I felt my body yelling at me, “What is this sitting in front of a desk all day? This isn’t natural. Go on, get on the move or I’ll be really sore and achy.” It did get sore and achy by Wednesday and Thursday. Luckily I found out that stretching improves the pain, and as I work mostly by myself in a cubicle I started using the book shelves as ballet barres when my legs and back need a break. (And now I’m going to recommend ballet classes to everyone. Kidding. 😉 )

I don’t know how I’m going to wake up tomorrow, but I know that even if it’s bad it won’t stop me. Whether I go back to dance classes next year when I finish post-grad, or keep exercising at home, or try to keep running despite winter, I can’t really stop moving. I feel that the only reason I’ve never been paralyzed due to MS is because my brain learned during years of practicing several contemporary dance techniques that there are many ways you can make a movement and many ways your feet, legs, hands, arms, head can get to where you want them to be. When something feels wrong, the brain gets creative and flexible and forges new pathways to achieve the intended result. Our bodies and minds are endless resources. I’m going to keep working on never running out of those.

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?

The Body Remembers – The Psychophysiology of Trauma and Trauma Treatment

51Iz1JHskkL._SY344_BO1,204,203,200_When my therapist said most of my symptoms were consistent with PTSD, off I went on a shopping spree trying to understand everything I could about it. I ended up only purchasing two books (so much for the shopping spree) and chose to pick up this one first because one of the things my therapist keeps telling me is that trauma is always in the body. It is felt, processed, stored and remembered in the body.

This book didn’t disappoint in explaining how. The first part provides a useful introduction to the mechanisms underlying the experiences of trauma. Being the geek that I am when it comes to all things science-related, I enjoyed learning about the role of brain regions such as the amygdala and the hippocampus in processing information, stimuli, emotions, etc, in regulating the body’s response to them, and their connection to memory, learning and language. 

The second part is aimed at providing therapists and their clients with techniques to alleviate and treat trauma symptoms using body awareness. The idea that the body is an endless resource for healing is certainly one that appeals to me. I’ve been learning for the past years how to pay more attention to what my body is telling me through yoga, contemporary dance and meditation. Now I intend to follow some of the suggestions in this book as well. I actually had the opportunity to try them today when I woke up startled at 5.30 am due to a nightmare. I didn’t think I could go back to sleep, but I remembered some of the exercises in the book and managed to get some sleep before the alarm went off.

Overall I think this book helped me getting more acquainted with what PTSD is about. It offers a nice balance between psychology and neuroscience, theory and practice. I hope the next one on my reading list will provide me with as much insight.

Depression is a disease of loneliness

I already shared this article on Twitter but I thought I’d share it here too.

It’s by Andrew Solomon, whose TED Talk swept me away some months ago, and I must confess I feel a little guilty because I haven’t yet started reading his book on depression, The Noonday Demon. I was delighted to find his new article on The Guardian though. As with his TED Talk, the words are vivid, fluid and meaningful, and he addresses many of my feelings, concerns and thoughts about depression.

Here are few:

“In an era in which Facebook has made “friend” into a verb, we often confuse the ambient intimacy of websites with the authentic intimacy that comes with sharing your life’s challenges with someone who cares – who will be sad because you are sad, happy because you feel joy, worried if you are unwell, reassuring if you are hopeless.”

“[…] but not treating the depressed is ultimately more expensive than treating them. People who cannot function end up on the dole; parents may not be able to take care of their children; men and women too depressed to sustain their physical health could develop serious conditions that cost the NHS a great deal.”

“Depression is a disease of loneliness. Many untreated depressives lack friends because it saps the vitality that friendship requires and immures its victims in an impenetrable sheath, making it hard for them to speak or hear words of comfort. […] Love – both expressed and received – is helpful, not because it ameliorates the symptoms of depression (it does not), but because it gives people evidence that life may be worth living if they can only get better. It gives them a place to admit to their illness, and admitting it is the first step toward resolving it.”

“Many people, however, are desperate for love, but don’t know how to go about finding it, disabled by depression’s tidal pull toward seclusion. Loneliness will not be fixed by medication, though pills may instigate the stability to open up to friendship’s liabilities: potential rejection, exhausting demands, the need for self-sacrifice.”

Full article here:
http://www.theguardian.com/commentisfree/2014/aug/16/depression-disease-loneliness-friends?CMP=twt_gu

Fickle memories and things I need to ask my therapist about

So my friend and I were having dinner and for some reason we started talking about weight. Weight has always been an issue for me, because I’ve always been thin and many people think it’s ok to taunt me about it. No one in my family is overweight, and we’re all those annoying people who eat everything and don’t put on extra pounds. We also tend to lose weight when we’re down or stressed out, unlike other people. Personally, I eat more when I’m anxious and stressed, but everything I eat is burned up by my nervous system.

Apparently though many people think I should conform to their vision of what I should look like, regardless of my genetics and the way my metabolism works. It doesn’t help that it is socially acceptable to come up to a thin person and say, “You’re so thin, did you enter a contest to disappear or something,” (I didn’t make this up, someone actually said it to me once), but if I remarked, “You’re so fat, did you enter a contest to become a whale or something,” then I would be a really mean person. The irony in all this is that I’m not really underweight according to the body mass calculators online. I’m just pear-shaped and people only tend to look at your upper half. 😀

Anyway, as my friend and I were talking, I remembered something rude a mutual friend had once said to me about my weight and mentioned that I was so upset that I didn’t have any reaction to the rude comment.

My friend said, “Oh but you did, I remember you answered in a very dry tone and in a very smart way. [Our mutual friend] was left speechless.”

And I said, “I don’t remember. I believe I froze. I was going through such a hard time at the time and was so sensitive to anything anyone would say to me that I just felt hurt, like I’d been punched breathless.” 

My friend smiled and said, “No, you didn’t freeze. Your voice became cold and you said something like, ‘If weight were easy to control there wouldn’t be an entire industry dedicated to it.’ I thought that was a very smart answer.”

I thought for a second and said, “That sounds like something I would say, yes.”

We proceeded to check if the rest of our memories matched. “Was it at that dinner party at our friend’s hostel?” “Was it in the summer?” “Were there our friends […]?” “Was it before dinner?” They did.

And as I kept thinking about it it slowly came back to me. But it brought up many questions. Why did I just keep in my memory that I felt deeply hurt and misunderstood? Why didn’t I remember that I actually managed to stand up for myself without being rude? Remembering that could have been a great resource in many situations afterwards. Knowing that I can defend myself could have boosted my self-confidence and made me trust myself more. Do I unconsciously want to play the victim? Do I unconsciously go on picking up clues that reinforce my ingrained belief that I’m not good enough and therefore I should feel sorry for myself?

I feel a little disturbed considering this. It’s definitely something I mustn’t forget to talk to my therapist about. 

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?”

Falling Into Place

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If you read my post ranting about positivity and positive thinking, you probably know I’m not into inspirational stuff and stories that make it sound like it’s really easy to overcome our limitations and all adversity – and if you can’t do it yourself then you’re not worthy of any support or admiration at all no matter how hard you’re struggling.

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That’s the reason I enjoyed this Huffington Post article so much. It’s about a series of self-portraits called Falling Into Place by Patricia Lay-Dorsey, who’s been diagnosed with primary progressive multiple sclerosis. It’s raw, it’s symbolic, not always pretty, but it’s interesting because it shows people those uncomfortable things many of us wish not to see or think about. It isn’t about self-pity and it isn’t about fake positivity. It’s life as it is, as some of us know it.

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The Year of Magical Thinking

 

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I came across this book on the internet and became immediately interested in the concept of magical thinking, in which you attribute meaning and cause-effect patterns to things for which there is no explanation, or for which sometimes, due to circumstances, the explanation is beyond your grasp. Like children, you feel responsible for things you can’t be held responsible for, such as divorce, loss or death.

The Year of Magical Thinking, by writer Joan Didion, is a beautifully written memoir that focuses on the year after she lost her husband to a heart attack and saw her only daughter fighting for her life as a pneumonia evolved to a complete sceptic shock.

Although I never lost someone so close to me, I was able to relate to Joan’s experiences throughout the book, as she describes trying to make sense of the world and maintaining a sense of control while being totally submerged in grief. I could relate to the heavy sense that things can change irrevocably in a matter of seconds (“Life changes fast. Life changes in the instant. You sit down to dinner and life as you know it ends.“) as I’ve had that experience for three times in my life. I could relate to being perceived as someone who is dealing very well with everything while being completely torn to pieces inside, alienated, running on autopilot. I could relate to the burden that memory becomes after loss – memory, so crucial for understanding who we are and yet dragging us down like stones around our neck every time it forces us to relive moments at inappropriate times. I could relate to how the fear of more loss and the desperation to understand what went wrong makes us go through every little mistake we might have made and what we could have done to prevent it – and makes us feel superstitious, trying to read meaning where there’s none. I could relate to the fear of having no one there should something happen to me. I could relate to the cognitive deficits that come with stress or grief. And I could relate to her complaint that nowadays we are so much surrounded by information that we’re constantly reminded we can avert death and if we can’t we only have ourselves to blame.

Joan Didion’s writing is clear and stripped of artifice, and yet surprisingly eloquent, poetic, and poignant. This is a book that definitely made sense to me at this point in my life and I’m so glad I read about it and decided to pick it up.