the feeling human project

A couple of weeks ago I was talking to a friend and she said something along the lines of, “won’t it be so wonderful, once the baby comes and you can really concentrate on yourself and your health.”  I’m pretty sure I looked at her like she had three heads, poor girl.  I think that the best way that I can describe my relationship to the postpartum period is lost.  I get completely and utterly lost in new baby land.  I as an individual almost cease to exist.  Part of it is just that new love, lost to the world infatuation.  But there is a more complicated aspect, one that I don’t really like to talk about, but I’m going to try because I think it’s important.  I have Elhers-Danlos Syndrome and POTS (Postural Orthostatic Tachycardia Syndrome) and a host of other related ailments.  Basically my entire body is built wrong.  That’s the best and easiest way to describe it.  Normal everyday life for people like me is about the equivalent of how a normal, healthy person feels when they have the flu; the same achiness all over, the same level of exhaustion.  That is our normal and frankly we just learn to live with it.  I was well into my twenties before I realized that other people aren’t in pain all the time.  It honestly came as a shock.  I know that seems silly, but this is the only body I’ve ever known and I think that most people just assume that their experiences are more or less normal.  I know I did.

I broke my jaw when I was a child, probably around 5 or 6.  It went undiagnosed for 20 years.  We believe we know when it happened.  My parents did all they could, took me to the ER, etc, but somehow it was missed.  It wasn’t until I started seeing a dentist, who also happened to be trained as a chiropractor that it was discovered.  He looked at me and said, “your face is asymmetrical, something is wrong” and ordered a panoramic x-ray, where you could clearly see the break and how my jaw never grew properly since it was never set.  After the appointment no one could understand.  “But doesn’t it hurt?”  they would ask.  And the answer is yes, of course it hurts.  It hurts all the time, but everything hurts all the time.  My poor mother was distraught.  “But you never complained!  You ate and talked and never gave us any clue that there was an issue!”  I guess the feeling wasn’t enough out of the ordinary to occur to me to complain.  The broken jaw revelation was the first time I started to consider whether my experiences really were in line with what was considered “normal”.

There are better times and worse.  There have been times, in the not at all distant past, where I’ve felt like I was actively dying of exhaustion.  There have been times, though they seem very far off at the moment, when I’ve felt strong and active and even vibrant.  My body doesn’t handle stress, physical or emotional well.  My nervous system is frankly screwy.  The little things that most people take for granted because their bodies automatically do, like say adjusting your blood pressure when you shift positions and altering your body temperature to accommodate a change of environment?  These and many other things are in no way a give in for me.  It may all work out or I may make it half way across a room before collapsing.  It all depends.  I may be able to go for a hike without a problem or I may partially dislocate my hip while walking to the bathroom.  I might make it through the week just fine or I might wake up and burst a blood vessel turning the bedroom doorknob.  I may be able to get around alright or my unborn baby may kick one of my ribs out of place (yes, my baby beat me up).  You really never know what you are going to get from day to day.  But there are a few things that are certain; pregnancy and the postpartum period are going to be hard.  And when things are hard, surviving is the most I can hang on to and any little bit of energy that’s left over goes right to my family.  That is how it should be.  But it also means that there can be a long period of time, sometimes years, where I’ve not given myself even the most basic of care.  I’m thinking about that now and trying to be better prepared for the future.

When you are to the point of absolute exhaustion and pain that’s much more then you can just ignore, any little thing that doesn’t quite work or isn’t there when you need it can feel like a great big, giant, over-whelming problem.  It’s amazing how quickly the scales can tip from getting by to freaking out.  I want to make this transition as easy as possible and I want to nurture myself a bit in the process.  My thoughts on how to go about this are many dimensional.  I need things to support my body through this process to try to reduce the ill effects as much as possible.  It will be easier on all of us to have daily necessities lined up and in order; freezer meals and things of that sort, to have our space thoughtfully set up and arranged for ease.  Then there are the more personal things, like clothes that actually fit and maybe some little luxuries, that might feel really special at the time.  Even if I don’t totally feel human, at least I can maybe fake it a little better and have a few pictures from those early baby days that don’t make me grimace.  I want to enjoy this as much as I possibly can.  I remember a woman once telling me how she suffered from horrible postpartum depression.  Having lived through that experience, whenever there was a new mama in her circle of friends, instead of bringing a baby gift, she would bring a little something for the mother.  Some warm wool socks or something of that sort.  Just to take care of her a bit and let her know that she was being thought of.  I guess this is a little like that.  A collection of ideas and preparations that are a new baby gift to myself.

This was my first try at a new nursing dress.  I’m not overly thrilled with it.  I used some leftover fabric from the kids Christmas pajamas; not a normal color for me.  I used this pattern/tutorial.  It’s supposed to be a regular women’s size 6.  It, obviously, fits now, which leads me to believe that it’s not going to be terribly flattering further on down the line.  Steve says it’s because I’m so tiny.  Tiny!  Ha!  Tiny is not really a term I’m identifying with at the moment!  I got most of the way through making it before I realized that the dress part is basically held up by just a tube of fabric.  This is what I get for not reading through the directions first!  Did I learn nothing in elementary school?  Anyhow, I did not like that idea one bit, so I ended up attaching the jacket to the skirt, with elastic in the front and some other funky modifications that didn’t really come together very cleanly because by that point I’d already finished sewing the jacket.  It’s comfy and it will be easy to nurse in, but I’ll probably use it more as pajamas and for lounging around the house then anything else.  I don’t think it earns my “wearable in public” seal of approval.


6 thoughts on “the feeling human project

  1. Robbie

    As long as I have been reading your blog, I always knew there were some health issues, but never knew the extent. Wow. I really had no idea. I don’t know what to say, except that knowing all this, and knowing all that you do with and for your family, just makes you that much more amazing. You look so cute in that dress! I am glad that it is comfy and will make nursing easy for you. I hope you have a great week.

  2. Corina

    I’ve been reading your blog for a while, relating to you and your life with multiple children (and even husbands with the same name!). Our little daughters look similar when they smile!
    I didn’t know the extent of your illness, and I really appreciate you sharing it here. It’s so weird… as writers of blogs, we share our lives and families with people we don’t even know are following us. Your family has touched me in a deep way, and you sharing about your struggle helps me understand you in an even deeper way.
    I wish I lived closer so I could bring you soup. And I bet our children would totally get along!
    Since I can’t help in that way, I am going to ask you: Do you need anything that a Mama many states away could supply? Anything for your own self care? I spin beautiful yarn, make goat milk soap, and so many other things. Seriously, I would love to send you a gift. Send me a private message if you feel like it, and if not, I totally understand, since it takes energy…
    Sending you much love and light from over here in Washington state!

  3. MamaAshGrove

    Dear Melody,
    I am so glad you opened your heart like this, and shared this huge part of who you are. I can’t imagine it’s the easiest thing to do. I am amazed and inspired by you- your strength, creativity, love, the way you see such beauty in the world, and the beautiful life you have created for your family.
    And also, I wanted to thank you for your words regarding taking care of new mothers, taking care of yourself. After the birth of my second child, I suffered post partum anxiety disorder for a whole year. It was the hardest thing I ever went through, and I hid it the best that I could. At that time, any little act of kindness or love made a huge difference to me. I was worried I’d have it again with my third and fourth, and thankfully did not, but nurtured myself the best that I could just in case- and I always think of the new mama as well, after that experience. I am glad to hear you are thinking ahead, doing what you can to care for yourself, nurture yourself and your family.
    I think your nursing dress is darling.
    sending you love and hugs from sort of far away,

  4. renee~heirloomseasons

    Well I think the dress is lovely on you, so if you should have a sudden need to wear it out of the house I don’t think you should worry about it at all.

    Not only are you a wonderful seamstress, but you are an absolutely amazing woman. Even if all that you do was without such an illness it would still be impressive.
    When I had my most rough pregnancy I thought of you, because wellness is such a gift, and gosh, everything is just so much harder when you feel awful. (And awful probably doesn’t even begin to describe it for you some days…) I did not know though that you don’t ever even have a pain free day.

    You are very wise and so I know that you will take very good care of yourself, and I know that you have good family to help take care of you too. I guess I will just send love…

    Renee <3

  5. Taisa

    Thank you for sharing so openly, Melody. You have been such an inspiration to me in the ways you live and parent and connect deeply with the world. I am glad to know more about what that takes for you, and so glad that you are taking care of yourself in small ways. Big hugs to you (in your beautiful blue dress!)
    xoxo Taisa

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