adventures in owning a body

Existing in my body is sometimes the hardest thing I do.

My body and I haven’t had the best of relationships first and foremost.

We did just fine until age 12 when things in my family fell apart and I took signs of hips and breasts as personal failure on my body’s part. I immediately resigned myself to the belief that if I could take up less space in the world maybe I could stop feeling so sad and empty. So began a dance of starvation, purging, and self-harm that lasted for years even with much therapy and many inpatient treatment centers.

anorexia, crps, rsd, chronic pain, eating disorders, chronic pain and anorexia, lyme disease, chronic illness, rsd, complex regional pain syndrome, ketamine infusions, calmare
age 14.

Despite my weight being the pinacle of my universe, I often felt very removed my body. For years I felt like I watched it from afar as it shrank and grew and shrank and grew again. Anyone who has an eating disorder will tell you that recovery is an ongoing process that never ceases.

Your ability to love and nourish your body isn’t always linear and sometimes you find yourself circling back to destructive ways.

In my mid-twenties I found myself starting to cultivate new experiences with my body while still continually struggling with what I looked like. Exercise became a new source of joy for me as my long-hated legs conquered a hilly half-marathon, cycled though 2 hour spin classes, and perhaps my greatest achievement, managed to run a 6:47 mile in 97 degree heat.

It seemed that though I still wished to be thinner, sleeker,and leaner, I was beginning to have a sense of what my body was and what it was capable of.

anorexia, crps, rsd, chronic pain, eating disorders, chronic pain and anorexia, lyme disease, chronic illness, rsd, complex regional pain syndrome, ketamine infusions, calmare

For the first time I found myself finally feeling more centered in what it felt like inside my body.

Then at age 28 in the fall of 2011, I began a new phase of my life when a simple foot injury from running turned into a chronic pain condition called Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (also known at CRPS or RSD).

This disease “is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain in the affected are is characterized as constant, extremely intense, and out of proportion to the original injury.”

crps, rsd, crps pain, complex regional pain syndrome, ketamine infusions for crps, allodynia, chronic pain, nerve pain, small fiber neuropathy, lyme disease

According to the McGill Pain Scale  CRPS ranks higher than childbirth or amputation.

The areas affected hurt constantly with a pain incredibly intense like a fire all over my skin coupled with feeling like my leg and feet are being broken from the inside out.

It began getting progressively worse in the spring of 2013 and then became very severe in Feb. 2015.

After being ONLY in my left foot for 3 years, the CRPS spread up to my knee in May 2015, spread to my right pinky toe and bottom of my right foot in June 2015, and then spread again up to my left thigh in November in 2015. In late 2016 the CRPS spread AGAIN into my ENTIRE left arm, hand and parts of my right arm.

 Because CRPS affects circulation to the area affected, my left foot and leg are constantly mottled and often turn either BRIGHT red or purple with swelling large enough that my foot doesn’t fit into most of my shoes. The skin is flaking and shiny. The nails have become very brittle. Both my left foot and leg are a different temperature than my other leg and foot which is typical with CRPS.  My great Aunt also had this so my drs think there is a genetic component for me as to why I developed it.

I now use a wheelchair to get around as putting weight on either foot is incredibly painful due to the nerve pain and nerve damage becoming increasily worse.

anorexia, crps, rsd, chronic pain, eating disorders, chronic pain and anorexia, lyme disease, chronic illness, rsd, complex regional pain syndrome, ketamine infusions, calmare, girl in wheelchair
photo by jewel peach photography

In a cruel twist of fate 5 months after developing the CRPS, I became VERY sick with Chronic Lyme Disease  and Bartonella (still not laughing Universe).

On March 5, 2012 I got a cortisone injection in my lower back in hopes of helping the nerve pain in my foot as a pain management specialist  thought it may be a issue with a disc in my back (this was before the CRPS was diagnosed).

Unfortunately the steroids lowered my immune system enough that a dormant Lyme and Bartonella infection was able to flare up. Oh did it flare up! Within 5 days of the injection I had nerve pain all over my body and had to go to the ER. Several weeks later the nerve pain got worse and was joined by awful joint pain, issues with cognitive functioning, crippling fatigue, and constant nausea.

It took several months and MANY doctors in order to get properly diagnosed and treated.

My Lyme Disease is now in remission based off a spinal tap but I have left with many challenging things in its wake. The hardest ones are widespread small fiber neuropathy/nerve damage and chronic ongoing daily nausea. Some days my entire body burns and  I have been sick to my stomach every day for several years now. I still struggle a good bit with joint pain which is exacerbated by having Ehlers Danlos Type 3.

anorexia, crps, rsd, chronic pain, eating disorders, chronic pain and anorexia, lyme disease, chronic illness, rsd, complex regional pain syndrome, ketamine infusions, calmare
laying sick in bed day after day, IVs, grueling treatments, and ER visits

Gone are the days of working the job I adored or running or driving or even leaving the house for weeks on end.

This was a new body foreign to me, one that spoke in a sharp tongue of pain and never seemed out of fresh ideas of to make me understand that I had absolutely no control of what was going on.

After years of starvation and self-harm, I have been stunned by the realization that I could not force my body to stop malfunctioning as it responded to the inflammation going on inside me.

My health has had many up and downs similar to my journey with my eating disorder. I have had brief periods of time where I have been able to work part-time, do yoga, or go on a walk with my husband. I have also had periods of time where I cannot wear shoes because of my nerve pain,  have had to go to the ER for pain intervention, and have even needed help getting dressed or bathing myself.

Chronic illness is truly humbling as you find yourself having to adjust your goals to what your body can tolerate.

IVIG, anorexia, crps, rsd, chronic pain, eating disorders, chronic pain and anorexia, lyme disease, chronic illness, rsd, complex regional pain syndrome, ketamine infusions, calmare
getting my weekly IVIG infusion for small fiber neuropathy and CRPS. photo by jewel peach photography

The pain has sometimes made me feel so defeated and angry at my body, a problem I think many struggle with when they are faced with suffering beyond their comprehension and looking for something to blame. While this anger at my body isn’t a new concept , I now understand  how fruitless it is as my body is fighting as hard as it can while under siege. I can finally see that disconnecting from myself even in moments of horrific pain leaves me empty and lost.

For a long time I refused to accept that this may be how the rest of my life is.

Anyone who is chronically ill always has that hope in their back pocket that they can one day feel “normal”, that remission or a cure is waiting in the wings.

I told myself repeatedly that the life I was leading while sick and in pain wasn’t important because it didn’t live up to the standards I had set in my head. Just like with my anorexia, I created strict ideas of what I was supposed to be like and how because I was sick I was a failure. This thinking only exacerbated my grief and I finally had to face the reality that this is how my body is in this moment in time. For the first time in my life I am experiencing true surrender as I accept that I cannot control my body anymore than I can control the stars in the sky.

anorexia, crps, rsd, chronic pain, eating disorders, chronic pain and anorexia, lyme disease, chronic illness, rsd, complex regional pain syndrome, ketamine infusions, calmare
photo by Stephen Caroll FotoFiction

This body is the only one I will ever have and together we are traversing hard territory that no one prepared us for.

I choose to believe that there is a lesson within this experience although I don’t yet know what it is. Maybe it is to continually find my center within my body no matter how my body feels. Maybe it is to have more empathy and compassion for those who also struggle with health issues. Maybe it is to love and accept my body with all it’s external flaws along with it’s angry nervous system and systemic inflammation.

Maybe it’s the experience of continually surrendering to the unexplained detours life guides us through and admitting powerlessness in the process. 

anorexia, crps, rsd, chronic pain, eating disorders, chronic pain and anorexia, lyme disease, chronic illness, rsd, complex regional pain syndrome, ketamine infusions, calmare, small fiber neuropathy,
I am still me.

Despite the pain I will continue to search for peace within my body and love it for everything it can achieve even if it is something as simple as putting my feet on the floor.

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**The piece has been featured on Suffering the Silence , The MightyDo The Hot Pants, and Body Positive Yoga. The first two are fantastic websites with stories of chronic illnesses and pain. The third and fourth websites are both wonderful sites about body image, body positivity, and eating disorders.

 

 

11 thoughts on “adventures in owning a body

  1. Pingback: 365 days
  2. Beautiful writing. I love: “I choose to believe that there is a lesson within this experience although I don’t yet know what it is. Maybe it is to continually find my center within my body no matter how my body feels. Maybe it is to have more empathy and compassion for those who also struggle with health issues. Maybe it is to love and accept my body with all it’s external flaws along with it’s angry nervous system and systemic inflammation.”

    This especially hit home for me. You are an extraordinary person. Sending love & light to you <3

    1. Oh my gosh. I am fangirling right now! I adore your Instagram and your blog is incredible. I am so flattered you came and read my blog <3

  3. “This body is the only one I will ever have and together we are traversing hard territory that no one prepared us for.”

    But seriously. Yes.

    There is such a rhythm and soulful beauty about your writing. Love it.

    1. Gosh. Thank you. I have always loved writing and its been really gratifying to write consistently and watch my writing slowly change and finding my writer voice. I hope to take a writing course at some point to really polish it up. Thank you SO much for reading <3

  4. I read the first two lines and then I found myself at the end of the page ” i am still me” …very stylish writing!
    and something else is about how i almost bumped into your website, I inject ketamine 3 days ago (iv’ed) for the first time and it was not really pleasant but the thing is during the days followed i ve been feeling truly happy for the first time in a long course of time! so I began googling to see if this feeling and the injection have something to do with each other…you already know everything about this ,agical relationship I believe….I don’t know what i m talking about, I bookmarked your page and will keep coming back

  5. I am so thankful the Universe connected me to your blog! I also believe you are an incredible writer! I am so grateful for the time you dedicate to it! You are making a positive difference in many people’s lifes!
    I reside in NOVA. I am a wife, mom, and even a grandmother x 3. I am 51 yrs old. Like you I have CRPS original site left foot post status foot surgery Sept 2013. My CRPS has spread and is now currently bilateral lower extremities.
    I am usually bed bound, wheel chair or walker. I also am a Lyme Warrior with Babs & Bart coinfections. Been in remission with several residual secondary disorders. I was infected at 9 yrs old, diagnosed and treated in 2006 for 3 yrs. Unfortunately both of my daughters tested positive, probably past it to them during pregnancy. Hate to think of all the times I donated blood too.
    I have had outpatient Ketamine Infusions, three times in Atlanta & GWUH in DC. I am trying to get into UVAs program. I am sure your are busy, but would you mind if I asked you some questions? If possible is there an alternative than posting here where it would be private correspondence? Your time and knowledge dies not go un appreciated by me! Thank you kindly!

  6. I know the feeling of disconnection between ones body and your mind.
    I had a lumbar disk herniation when I was 19, rigth before my graduation. I still remeber the moment, when I thought: This is isnt me, this isnt the person I wanted to be, my soul and mind couldnt connect with my body anymore. My friends at the same age, couldnt really understand what I was going throuth or what I was talking about and I dont blame them, I blame no one.
    Luckily, after half a year of recovery I became almost my old self again. But then after the first year of university it came back and even worse. This time my sciatic nerve was affected hardly. I couldnt sit nor sleep because of the pain. I cried so much and then again: I thought this isnt me.

    Now almost 3 years later I would say I am healed, but of course when I am not good to myself it can come back and in this century and with stress and etc. we know that we arent always good to ourselves.

    I have now accepted, that is me, that this is part of my life and it made me so much more stronger and understanding. But this feeling of understanding whats really important in life is the nearest when you are sick. This is really sad but so true. You appreciate everything more. Of course, pain is the worst thing and not wishable, but your sensitive ability to sense the beauty of life is the hightest while suffering the most. Its like saying a blind person can hear better. This is quite ambivalent and sad.

    From my view, the most important thing is to accept that this is also you, but not all of you and the hope. and to enjoy even the smallest things.
    I hope for you and I dont know much about your disease, that you can still enjoy a lot of time without pain .

    Thank you for an other wonderful text 😀

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