One wrong move and it all comes tumbling down. I don't know why with this illness it takes so long to believe you are really sick. For me, if I am honest that is probably where I pull my hope from - if I don't really have CFS/ME, if I only kind of have it, then there is hope I don't have it at all and tonight when I close my eyes and drift towards dreams I will wake up with a new reality. I know why part of this is true, when doctor after doctor, the "authorities" almost like a reverse Stolkhom Syndrome tell you - you can't be because, its hard not to believe them. You can't be hyperthyroid because your TSH isn't off. You can't have chronic fatigue because you have a few good days in between. Maybe believing their lies was easier than owning my truth. I am sick. And on days like today when circumstances caused a slight alteration in the schedule, which meant you got over hungry and by the time you got home you are trying to take in calories and sugar like someone who has been on a deserted island - that after you are fed, it doesn't matter - you lost.
People always think you are anxious or over reactive or cautious, you live your day to day life on the brinks of fight or flight - because when you aren't prepared - when you didn't bring a sandwich to the chiropractor and you were already emotionally spent putting out energy so your Birthday Girl niece won't know you feel a bit shaky - that delay, that unpreparedness your body takes that moment and like a system that short-circuited you start to fall.
Half of bagel and ham sandwich, water and juice, a cookie, baked chicken, some pasta, your brain is spinning you can't keep a coherent thought...you are spinning downward and trying to claw your way out but its too late. You pushed your system when it couldn't be pushed and now you must wait it out...wait to find its way back..You sit first on the sofa, then realize you must lie down still perfectly still. Your entire body feels like it is mildly shaking, its been shocked - you pushed it too far on the wrong day - Your mind and your body are at war. Two hours on the sofa - the blur of the nightly news, Wheel of Fortune, some lame sit-com, another lame sit-com - it doesn't matter you aren't watching you are watching through it - gazing not taking it in - just hoping this will pass.
Re-boot. You have the chills now, your ever present hot body is cold, warm shower - maybe that will help mentally re-boot. You are thankful now that a shower is possible - You are thankful now your back pain is a minor ache - You are thankful that this week three aquaintances have told you out of the blue that you look better than you have, one used the word Hollywood (oh its called the mono-chromatic look - beige jeans, crisp white tee, beige sunglasses - works wonders!) and you think - if you could see me now.
While I was in the shower, it came to me - Live Loud. That's what I miss - I have never been a loud person - boisterous etc..but I had loud dreams and loud hopes and loud loves and loud gatherings with loud laughs and loud music and loud fun. I ache for my careful being to not have to be careful - to push my limits again, even at best that meant traveling somewhere alone - or hiking when I don't like to hike - but it was MY decision - and I could fight through anxiety - but this - this you can't fight it - I began thinking of the Photographer Tyler Shields - and yearning for the wild abandon of those that are blessed with the ability to push themselves and get results. The need for danger was never in my DNA but this illness has forced the everyday to often become a mine field to walk carefully through.
So I got out of the shower and did the only thing that spoke to me to grab some control - instead of the gray sweatshirt I had - I grabbed the bright robe my aunt gave me as a "joy" gift and put some bright lipstick on - its about as LOUD as I can get. I tried to slowly eat, but the level of fatigue made it so I had to spit out my cereal twice because my natural autonomic process of swallowing didn't want to work - I sipped juice ever so slowly - I tried a ham sandwich - couldn't do that. I was staring at food that my body wanted to devour and yet reject simultaneously. And at that moment, as I took in this day, the simple mishap that made my body follow no rules - thinking about those 126 beats my heart needed to do such a simple task as stand at the end of my driveway and talk to a neighbor - I thought hard about the past 6 plus years and all that I have given up - and the magnitude of this illness - the magnitude that I have tried to deny began to crush my hope.
I will begin again tomorrow - and I will try every day to do my best to Live Loud the way I had dreamed, the dream may just need a bit of tweaking. As these past few days as the nation and world have listened to the stories of the loved ones lost or nearly lost in the masacere in Aurora, Colorado you are reminded of what really makes someone's life - its the magical memories we tuck inside our hearts - its the memory that someone may not even know you are taking - but the moment that made them feel loved, the moment that made them feel joy, the moment that brought happiness and you realize, adjusting my dreams to the simple things may be the best gift I could ever have been given.
So today, I will never forget the nervous anticipation as my niece finally hit the much talked about 4th birthday. And the hug she gave me and nervous blush as she was so excited to play doctor with her new lab coat and instruments that she needed some privacy - the purity of her being fills you up. Her gorgeous innocence and compassionate beauty as she told my parents she always wanted a toy pony. Her health - I am so grateful for her health - And I have the photos to remind me that in that moment I was blessed to feel really quite good - and the crash - well it happened after and that's all that matters to me - it happened after.
Make no mistake - I hate this illness but I am getting better at not hating myself for the position it has put me in - I hate the uncertainty - the broken dreams - the confusion of what next - I hate that I can't do normal things to make my body strong - And days like today when the Joy is so high and the Sorrow so deep you feel that you can't tolerate it for one more minute - you stop and you breathe and you hold the memory of the Joy and let it win.
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| The Birthday Girl |
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| Perfection |
Joy Wins
