Tuesday, May 14, 2013

Enough Already.

Katie Jennings

We often use the phrase “self-conscious” to describe someone who’s very aware of what other people think. A teenager in her first high heels, for example. She’s walking awkwardly, heels clacking, and looking around to see who’s noticing, thinking of what her friends (or that boy) might think, or wondering who sees her as she walks down the hall. She’s self-conscious, right? (I know, because I was her.)

Since being diagnosed with multiple sclerosis in December, I’ve become self-conscious in a much more literal way. At all times, day and night, I’m acutely, almost excruciatingly, aware of my own body. I’m overly conscious of myself.

Every ache, every tight muscle, every missed step: now subject to careful review. Is that a tingle, or did I just sit in one position for too long? Does my leg hurt because I’m out of shape, or because I have MS? Am I tired because I’ve been chasing my son around the yard all day, or because I have MS?

And then when I have a real, recognizable symptom, I obsess even more. What does it mean? Will it pass or is it permanent? What will be the next logical step in my progression? (As if there’s any logic in any of this.)

Frankly, I’m getting on my own nerves. I don’t want to be spending all my time thinking about myself. I definitely don’t want to spend all my time thinking about this disease. I have a progressive form of MS, so if I start down this road now, it’s liable to take over my whole life. Which is precisely what I’m trying to avoid.

I’m committed to doing as much as I can to stay healthy and live the way I want to: meds, diet, exercise. Whatever it takes. But I’m hoping that as the months (and years) unfold, I’ll learn to somehow quiet the myriad voices clamoring in my head about multiple sclerosis and just live.

It’s in my brain obviously, but I’d like a little bit less of it in my head.


Katie Jennings keeps busy juggling a son, a husband, a job, an old house, a bossy cat and unpredictable Vermont weather. She was diagnosed with progressive relapsing MS in December 2012. She blogs about all of it here: http://steadyshegoes.com.

14 comments:

  1. I hear you. I have felt ( and still feel) exactly the same. I am blind in one eye now from Optic Neuritis, the first symptom of my MS. Been that way for 2 yrs now; fatigue, legs going their own way, it's hard to know what's MS and what's not. Trust yourself, take care, you know your body. Much love, we travel a hard road. xxx Lizzie

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  2. Thanks for posting that! I was diagnosed in October with RRMS and I feel the same way. It's gotten less intense in the past few months, but I can totally relate!

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    1. I'm finding that this gets less intense for me over time, as well. Expecting that it will probably come and go as things change over time.

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  3. This gives me hope every day.

    http://www.youtube.com/watch?v=KLjgBLwH3Wc

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  4. I think it's one of the things that people who don't have MS don't understand. They look at your face when you are pondering something you are aware of in your body and they want somehow to fix that. I will never not be aware of every single sensation that I have going on at any given moment. I will be hyper-aware for the rest of my life. It doesn't mean I can't be happy, but it does mean that on top of the challenges the condition itself presents, I am sometimes exhausted from being on high alert, all day every day. Thank you for saying it.

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    1. It's sometimes even more complicated because the things that you're feeling are hard to put into words, don't you think? But I suppose there's nothing to do but move forward with as much courage and joy as we can muster.

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  5. Thank you for putting this into words for me.

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  6. This is precisely how I feel every single day. Sometimes I just wish that the people around me could understand what it is like for one minute...just to know how exhausting it is worrying about every little tingle or pain...some even so mild that you never would have given a second thought to prior to being diagnosed..but now obsess over. It is mentally, physically and emotionally draining. All things that we need to avoid to help keep our MS in line. Life's own evil catch 22.

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  7. Great post. I identify with every word. I spend so much energy trying to look "normal" and be "normal". My God...exhausting. And I spend way too much time worrying, pondering, analyzing every nuance of my body as it does what it does and doesn't. I am going on 10 years now balancing mylife with MS. A dialy challenge which no one really understands. Sigh............
    thanks for this honest post
    Love Gail
    peace.....

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  8. with the hot days of summer coming, life will be even more challenging. bravo...you spoke from the heart, good luck to you and all of us.

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  9. Yes! Yes! Yes!!! I was also diagnosed with RRMS in October (like Mel above) and this is a perfect explanation of how I have felt!! It is decreasing with patience and understanding of this disease, but it is still a daily thought. Thank you and good luck! :)

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  10. I have it for 2 years... feelings you describe so perfectly are there almost every single day, but we have to find balance between being careful and being overreacting to our bodies. It is not easy, but our energy and strength is too precious to be consumated by fear. It is you, and you only who can decide whether you feed the fear and let it grow and control you or you make it just your alert servant... love yourself, listen to your body, be careful, but don´t worry too much about the future... I used to be very worried about when the next flare- up strikes but then I let go... I do what I can to prevent them, yet they still sometimes come... there´s no point in worrying, when it comes, we have to deal with it and when it´s not here, we have to enjoy our lives as well as if we´re healthy... you never know what´s coming for you, you can die e.g. in a car crash next morning, so live your life to the fullest as much as you can and remember, the only thing that truly matters is present, not the future... :)

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