Elastic Heart

 Sunrise cruise. Photo by Kim Gaylord

Sunrise cruise. Photo by Kim Gaylord

This post has languished there for a while. Dangled there really, making me want to give it a good punch in the throat. I didn’t know what more I wanted to say. If I wanted to say anything. A big part of me was just over the idea of explaining myself/the next thing/the next plot twist. I have grown weary of the narrative, the heroes journey. I didn’t want to be face down in the arena again, trying to rise strong. For once, I hoped for easy, nice, uneventful, boring even.

But no such luck. I am struggling with chronic illness and am amidst a bad flare of the conditions. I have been apparently suffering for years, although I am just now finally, finally getting to the bottom of things and finally have a team of doctors and practitioners on my side. I decided this is important to share because chronic illness is isolating and misunderstood and freaking hard to deal with and many who have these diseases suffer in silence. If sharing my illness struggle helps one person feel less alone in their own struggle then I have succeeded.

And the reality is, I am still in the thick of it. I am in a bad patch in an ultra that is now my whole life. This is my emotional journey.

Denial- February 20, 2018 (also March 2016, October 2015….)

“I am exhausted”

You must run too much

“I have a headache every day from the moment I open my eyes until I go to bed”

You must be dehydrated from running too much

“I can’t keep my ferritin above anemic”

It is because you run so much

“My hypothyroid meds are off again, why can’t we control it?”

You must run too much

“I easily gain weight, but can’t lose a pound for the life of me. Even though my diet is healthier than 100% of people I know.”

You are thin enough, you must have an eating disorder

“I’m sick again”

Your immunity is compromised, because you run too much

“I feel like something is wrong”

It is nothing

It is not my denial that has hurt the most. It is the lack of being heard. It is feeling terrible over and over again and having doctors tell me there is nothing wrong even when they don’t investigate very deeply. This has changed my relationship with myself. I feel like I have been told that I am crying wolf so many times that I have convinced myself the wolf doesn’t exist. Even when the pain, the fatigue and the symptoms are so bad I find myself curled in a ball on the floor debilitated. If it is nothing, than I just have to be strong enough to bear it without complaint. I just need to will myself off the couch and stop being so lazy.

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Anger- February 27, 2018

I was feeling bad physically and I was feeling bad mentally about feeling bad. No, it more than that, I was just pissed. And exhausted and despairing and broken. Over it, all of it. Dangling at the end of my rope; sitting in the chair not knowing how to carry on; at a dead end with no way out. I felt angry in a way that I rarely allow. Angry there there were no answers as to why I was so exhausted that I couldn’t even move. Angry when there finally were answers and the answer was chronic illness. Angry at my body for failing me. Angry at everything; like I had drilled down into a deep recess of my soul and found hidden molten lava that had been buried. But it was simmering there, all this time, eating away at me. Anger is not something I have allowed for myself because I have always been afraid that my anger could become who I was, my anger could destroy me or worse everything that I love. If boys traditionally haven’t been allowed to be sad, girls haven’t been allowed to be mad. My anger has always been met with fierce opposition, it has always been the thing that has been used to hurt me the most. It has never been permissible, understandable, no one has ever said, “you have a right to be angry”.  So I physically, mentally and emotionally buried it deep inside where it has been allowed to fester. I want to let it out, but don’t know how. How do you let go something you’ve been holding on to for so long. Something that is now destroying me from the inside out.

And there is anger too at not being believed, heard, seen. Being told so many times essentially that I am just hysterical or irrational has beat me down over time. So it is validating to have answer, but there is anger too that it means that I was justified in feeling alone, unsupported and abandoned through so many battles with illness. There is anger and frustration that people with chronic and autoimmune illnesses (the majority of whom are women) are made to feel like what they suffer from is less serious, less life changing than other major illnesses. I have been told point blank, “well at least you don’t have cancer”. As if the things that I and others suffer aren’t worthy of care and support or even serious consideration. But in some ways it is just as bad or worse, because for many chronic and autoimmune diseases there are no straight forward treatments or even a rudimentary understanding of the diseases. There is no radical way to fight. And, furthermore, these diseases don’t follow a predictable pattern, so you are susceptible at any moment to things going south even after you’ve managed to finally get them under control.  And each disease opens you up to all sorts of other diseases and risks, including cancer, at an alarming rate. It is relentless and unceasing. 

Bargaining- March 12, 2018

My body didn't betray me. This I know and understand now. I did the best I could throughout my life to do the best I could with what I was dealt. I tried, I triumphed, I failed. I have taken the bad and faced it as well as I could so that I would not become defined by my traumas, my failings, my hurts, my tragedies. I worked to make them part of the plot, not part of my identity. I have tried, but I have also failed. I have failed because my whole life I have pushed deep dark thoughts and beliefs down, I have told myself so many stories of my own unworthiness and failure that it is written in my very DNA, manifest through my body’s turning against itself. I very much believe in the mind body connection and can see now that every hurtful, disparaging thing I’ve ever told myself has not been without consequences. The things I have pushed down or away, do not simply vanish when they are out of sight. They manifest one way or another. For me, this manifested as chronic illness.

I do not mean to imply that I “did this to myself” deliberately or as a consequence. Simply this happened, this is so. But the experiences of my life, the way I live my life, the process my mind goes through, the beliefs I have about myself, all play a role in this illness journey. I have a choice; I can despair, I can be angry, I can quit, I can play dumb. I can feed the illness with malcontent. Or I can see that the inverse is also true. That I am not broken, that my body is not weak and betraying me. That I can heal, that I am good and worthy and loved. I can release the anger, the sadness, the hurts. I can tell myself how awesome I am and how I am going to kick chronic illness in the ass. I can create the reality I want, or at the very least, do everything in my power to control the controllables and relinquish my concern with the things I cannot change. I can do a lot through alternative healing including diet and various protocols. I can do immense things through meditation, self-care and positive thinking. I can make a deep impact with the stories I tell myself about who I am.

 KP Half marathon. Photo by Maddy K

KP Half marathon. Photo by Maddy K

Depression- March 10, 2018

Demon Monkey and other imaginary creatures

I wonder

how many times they told her

“nothing is wrong”.

How many times she second guessed

herself, even when,

she couldn’t get out of bed.

How many times did she

feign laughter when someone joked

“must be so nice to just lounge on the couch”.

 

I wonder

how many time she lay awake

in pain;

in worry;

in an exhausted insomniac stouper.

Crying to herself and wondering

Why will no one help me”

 

I wonder

how hard she pushed,

how deep she searched,

how she continued to turn over every

stone left unturned.

Even as she dissolved before my eyes.

 

I wonder 

how she pushed through

when every tendril of her

body was revolting,

when every system

was betraying her.

 

I wonder

how she held her head high

when she felt alone,

when she knew something 

was terribly wrong.

 

I wonder 

how she felt as she slipped away

a shell of herself, sent home by the doctors,

to die in her own bed.

Was she afraid?

Or was she defiant?

“See I told you it was not

nothing”.

This poem, written during the worst weeks of my recent flares, is not only a reflection of my own pain and fear, but also a meditation on my aunt Chris. She suffered from similar issues (such as chronic mono) and died of strep throat at the age of 56 which is basically unheard of. I was in high school at the time and while we were close, she never discussed her health with me, although I now wonder what she was going through. I wonder if she could have been saved. 

 Strong AF. Photo by Kim Gaylord

Strong AF. Photo by Kim Gaylord

Acceptance

I have Hashimoto’s Thyroiditis and hypothyroid (the later which I have known/been medicated for 10 years)

I have chronic/reoccuring mononucleosis (EBV) & am currently fighting an active flare-up.

I have Celiac (which thankfully has been controlled for over 10 years through a gluten free diet).

I have extremely low gut immunity/other stomach problems and am currently teaming with numerous bacteria and viruses many of which are closely associated with other autoimmune disorders and cancers (including ones that run in my family) and wreck havoc on my digestive system.

It is a lot. And it is life-changing. And this is my reality now. Health and illness are no longer secondary thoughts if thoughts at all. They are primary and dominate and will remain so. My life is changed by these things and so I must build a new reality around them. First, I must get healthy enough to not be fighting fires, flare-ups and uncertainty. Then, I have to settle in to a different life. I don’t just get to go back to regular life when the mono recedes or the thyroid meds get regulated. I have to change my life and accept chronic illness as part of it. But not as a burden or a badge of honor either, but as a companion, one that must be accommodated to be controlled. I don’t just get to eat the cheese or forget my medicine or push myself too hard for too long. I may never get to have another egg or cookie or slather nut butter on top of a gluten free waffle. I have to accept that parts of me are sensitive and fragile and that that is ok. Being sensitive doesn’t make you weak. None of this makes me weak or broken, or even alone.

It also doesn’t define me. Just like being a sexual abuse survivor doesn’t define me, I will not let this define me. It is a part of me and just makes me that much more of a warrior. If this journey to diagnoses and through disease has shown me anything, it is that I must not, cannot give into the grief. I must fight for myself, I must mentally be my own biggest advocate and caretaker. I must show myself loving kindness and forgiveness. I look at the lessons I learned in Leadville: that running as my happiest self makes more my strongest best self. Now, as I undertake this knew path I know that what must be done to heal and be healthy is to live my life with joy and happy determination.