Pain is my Reality

I think what people fail to comprehend is that I exist in a state of constant pain. I literally cannot remember what it feels like to not be in pain, assuming such a moment ever existed for me. I even experience pain in my dreams.

When I say that I am doing well, or that I am feeling good, what I mean is: my symptoms are currently in a consistent enough state to not register as especially noticeable.

I think an inability to understand that is part of the massive divide between medicine and patients. If a doctor doesn’t understand that this is what I mean when I say I am feeling ok, then how can I explain anything else? When I’m dancing and singing, and laughing, and loving, and teasing, I am doing all that while also being in pain.

The realities of someone who lives with a chronic illness, where pain can just as easily be replaced with nausea or some other symptom, is impossible to conceptualize for someone who hasn’t experienced it themselves. It’s antithetical to the way humans comprehend our reality. We can’t grasp of infinity so trying to comprehend constant unending pain, it’s impossible.

When people try they immediately get overwhelmed with the futility of it all and feel despair. So the assumption is that our lives must therefore always be despair and if they’re not, then we’re lying, but if they are, why don’t we just end it all?

When I say that I have to embrace the reality that I might never get better and see a cure, I’m not being negative. Accepting that reality lets me survive because otherwise, it would be overwhelming despair. It’s not a personal failing, it’s not that I haven’t tried hard enough to get better. This is just my reality.

I understand that for you, that sounds like giving up, but accepting that limitation has been the biggest step in being able to move past. Accepting that this is my reality makes it possible for me to make the decision to self-care. It makes it possible for me to accept that my illness, my existence, is not a personal failing. It is just the way things are.

Sometimes hope kills.

I don’t have the time or energy to spend hoping that I will get better someday. Energy spent hoping of a someday is energy that could be used to improve my circumstances as they are rather than how I want them to be.

It means accepting that “toughing it out” is a waste of energy that could be better spent medicated and doing something I enjoy.

Pain is my Reality
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Post Hospital Syndrome

NB: This post is supposed to be an overview of what it feels like post admission, and not a description of any specific condition which may or may not be known by this name.

As those who follow my Facebook feed might know, I spent the last few days admitted to the hospital. The persistent Crohn’s flare which has been plaguing me for the last few months finally wore me down to the point that I went to seek help. I wasn’t expecting to get admitted. The medical marijuana I have been smoking has been keeping me from getting as bad as I have in the past. Mostly I was hoping to get some prednisone, go home, and hope things improve.

Then, something unexpected happened, they actually took me seriously. The ER doc called for a GI consult and the moment she saw me throwing up bile into the garbage she told the nurse to give me some gravol and admit me. They would put me on IV steroids until I was stable enough to take it orally.

I was in the hospital for five days and now I’m back home.

Coming home from the hospital is always an experience. After days of being locked up in a little room with no privacy and yet insufficient human contact, it feels like you are somehow outside the flow of things. Like you exist in a space outside of the rest of the world, and your day is spent trying to figure out how to rejoin the flow. It always such a surprise at how exhausted I am post admission.

I laugh that I feel like a day old kitten, but the truth is that it’s not a joke. My hands shake, and I can barely carry my own bag. The doctor once told me that it takes about one week to recover for each day you spend in the hospital. It seems like a lot. After all, didn’t I just spend the last five days sleeping most of the day?

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Post Hospital Syndrome

Help me end my homelessness!

We Did It! We raised the money she needed for the deposit. Thank you so much to everyone who shared and donated.

I am reblogging this so that our viewers will also see it. Alyssa is a dear friend who has been there for us in times of trouble. She is an amazing person. Please share this fundraiser widely and if you are able and willing, donate a little to help her finally get out of homelessness.

Help me end my homelessness!

WHY YOUR ADVICE TO CHRONICALLY ILL PEOPLE IS CONDESCENDING AND VICTIM BLAMING

It’s inevitable, if you are chronically ill people can’t seem to run over themselves fast enough to offer some advice regarding what you should do to get better. Whether it’s family, friends, coworkers, or perfect strangers, it seems everybody has heard of some amazing new miracle cure that is sure to help you. Even if they hadn’t heard of your condition until five minutes earlier.

“Crohn’s? What’s that? Oooooh. Hey I’ve heard that people fix digestive issues with by giving up gluten, have you tried that?”

We know you mean well. It’s instinct, you see a problem, and you want to help fix it. But it happens time and time again. What started out seeming sweet soon becomes just a constant reminder that everyone thinks we’re incompetent.

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WHY YOUR ADVICE TO CHRONICALLY ILL PEOPLE IS CONDESCENDING AND VICTIM BLAMING

HOW ADHD SHAMING ALMOST KILLED ME

TW: Discussion of Depression and Suicidal Ideation, descriptions of self-harm.

Just getting diagnosed with ADHD was a struggle. I remember the doctor I was seeing at the time giving me a lecture about drug seeking behaviour. When I pointed out that there were easier ways to get drugs than trying to get an appointment with a psychiatrist she relented but asked me why I wanted to be diagnosed if I wasn’t in school anymore.

The cultural perception of ADHD is that it is just a matter of too much energy. You hear all sorts of people extolling the virtues of good old fashioned exercise, or warning people about the dangers of giving children drugs similar to amphetamines. No one takes the time to think about how medications work. This is evident when they start talking about Ritalin or Concerta being the sit down and shut up drug.

ADHD changes the way you think. Not what you think, but rather how you think. It falls into the category of brain conditions that are considered neurodivergent.  It also has a high rate of comorbidity with autism. It’s not just “undisciplined” or “lazy” kids who need more exercise, it causes structural changes in the brain and can even impact how you react to different medications.

Most people however still have a hard time believing that the condition even exists.

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HOW ADHD SHAMING ALMOST KILLED ME

THE BEAUTY AND THE BEAST OF ABUSE

TW: Discussions of Abuse

A graphic related to Beauty and the Beast has been making the rounds again. It discusses a different perspective of the movie, which suggests that rather than a representation of domestic abuse and Stockholm syndrome, that the movie represents the force of finding that special someone when you are socially outcast and isolated. It describes how both the Beast and Bell exist in social isolation. In the case of one, because of his monstrosity and in the case of the other as a result of being an avid reader and thinker in a town in which the social convention is for women to avoid books.

This graphic has some interesting ideas, but I think that even while what it said there is true, it is also important to discuss how that truth doesn’t invalidate the legitimate criticisms regarding the abusive elements of the Beast and Belle’s relationship.

The beast might be a social outcast because of the way he looks, but the way he looks is a result of his refusal to give shelter to an old woman for the night. It was meant to teach him not to judge people based on their appearance, and in the older stories it was also a punishment for being a mean-spirited and selfish brat.

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THE BEAUTY AND THE BEAST OF ABUSE

Sun and Skin

I spent most of the day in a padded bikini lying on a towel over sand at a river beach, collecting overcast sun and reading a collection of transgender-themed fiction.

I got a few stares as I walked to and from the bathroom and a few other times. I looked down at myself and kept spotting the hairs in my erstwhile cleavage that I missed on my last 20-minute tweezing session, and frowning at myself.

But then I looked down at my long, hairless legs finally getting some sun, such as it was on this cloudy day; and the fuchsia-and-teal of my finger- and toenail polish; and the accent of my navel ring; and the increasingly adept gaffing behind my bikini bottom; and the gentle curvature of my testosterone-addled breasts behind this triangle top. And I felt the breeze over my bare skin and the warmth radiating up from the sand and down from the sky, and watched a mom introduce two little girls to dip-netting for minnows nearby after a duck with ducklings came to visit us and wandered off when we didn’t feed them.

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Sun and Skin