MS and colds don’t mix

I kicked off 2016 dancing with friends and generally in a good mood. But soon after I went back to work I started noticing my throat going sore and my lungs burning with a tickling feeling. A lot of coughing ensued. And by a lot I mean a LOT. This wasn’t one of those colds where you just feel like you were hit by a bus for three days and then you’re fine. No, this was a mild enough a cold, except that it lasted for a whole long eight days. That means that for those eight days I barely slept because I couldn’t stop coughing.

I think you can imagine where this story is going. Continue reading

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I made it…

… to the holidays. I managed not to punch anyone in the process (especially co-workers) so that’s probably a good thing.

I’m also not feeling too bad health-wise – at least nothing unusual. I managed to drive for almost four hours under the heat without falling apart.

Small victories, right?

And here’s my reward. Continue reading

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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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.

Seeing MS

Dizziness
Dizziness

One of the most frustrating things about living with multiple sclerosis is that most symptoms are invisible and we appear to be well to other people. One day the entire world seems blurred – yet you’ll never know how I am seeing you. The other day I am so tired I can barely stand or listen to people talk – yet you’ll just say I’m not getting enough sleep. And how about those days when my memory took some time off and I can’t remember anything you told me? – you’ll just say I wasn’t paying enough attention, or worse, that I’m a bit dumb. And let’s not talk about those days when my balance is off and I bump into every other object in the room – then I’m just a clumsy little girl.

pain
Pain

I feel ashamed of talking about my little handicaps because people will most likely eye me suspiciously and assume that I’m just trying to get away with responsibilities or work. I had a boyfriend who once suggested I was faking symptoms just to get attention and on another occasion he suggested I was using the disease as an excuse to get what I wanted. This kind of response makes ms patients feel isolated, insecure, misunderstood – and that’s hardly breaking news. If you research a little about multiple sclerosis, either online or the old-fashioned ways, you’ll find lots of people wrote about it.

Hot and Cold
Hot and Cold

For instance, Sandra Amor and Hans Van Noort wrote in their Multiple Sclerosis – The Facts that “symptoms may range from being almost unnoticeable to severe, and anything in between. In fact, quite a few people with MS do not show any clear signs of their condition at all to untrained eyes. Paradoxically, this in itself can be a cause of problems too. Family members and colleagues may sometimes think that complaints may be exaggerated, or even imaginary. Society can sometimes be quite impatient with people who need special attention but still appear to be largely okay from the outside, especially when they are young.” Allison Shadday adds in her MS and Your Feelings, “Unfortunately, society reinforces a stoic stance. We’re taught that it is better to keep our ‘complaints’ to ourselves. But the price we pay is isolation. Keeping up a good front inevitably makes us feel distant and misunderstood by others, rather than accepted and loved, as we so desire.”

Numbness
Numbness

But the truth is, most people don’t care enough to read or research. So when I found out about the Seeing MS project, I thought it was fantastic. The idea is to expose the invisible symptoms, by depicting them in an image. Nine photographers were invited to participate, and anyone else can submit their pictures as well. Where words fail, maybe images can help.

My submissions to the project: http://escharae.wordpress.com/submissions-to-seeing-ms/