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

“Just be positive”

If I had a dollar for every time I’ve been told to “stay positive” I would have been able to leave the shelter a long time ago. I always get this when I express any feeling other than absolute fucking joy. Do people not understand that after being kicked so long it’s hard to just believe things will work?

When I went into the shelter almost five years ago, I was optimistic. I was on my own with a baby and scared. However, I just knew things would work out. I just had to believe and I was positive things would go well. After going back and forth from a hotel to the main office while they found a domestic violence shelter that would accept me, I was positive. Every day, several phone calls to different shelters, and I was there positively positive.

I’m placed in a domestic violence shelter but told it’s only a 4 month stay. If I’m not accepted into low-income housing, then I have to go back to the office and start over this time in a regular shelter. But I was positive. I would be placed somewhere.

I wasn’t. And so I had to take a two-hour train ride in the middle of Winter during a particularly cold day with a baby back to the office. Then wait and wait and wait for a new shelter. But it was OK. Things would work out. I was positive they would.

But then TJ got food poisoning from the lunches they served at the office. Things would be OK though. I just needed to remain positive. Hadn’t things worked out so far, albeit with a few hiccups?

I was finally placed, but I had to get there myself. The drivers were out and they didn’t know when they’d be back. If I wasn’t in the shelter in four hours I’d lose my placement. That was OK though. I was a little worried having to carry a suitcase, a stroller and a sleeping baby to the train which had no elevator at 11pm in NYC but I’d be OK. I was positive I would be.

The stroller got stuck on the platform. No one helped me. The train was coming. I missed it. I was still stuck, wanting to cry. But I wouldn’t. I would be OK. I just needed to remain positive.

I got lost on my way to the shelter in a strange neighborhood in NYC. But I would be OK.
I was in that shelter for two years. But I didn’t worry. I was tired and the word “positive” made my eye twitch but I still clung to it. If I lose this, I’ll lose everything. I was always hearing how hope is the last thing you lose. I didn’t want to lose hope. I had already lost so much.
I get an opportunity to leave the shelter. I was ecstatic. TJ could start kindergarten as a non-homeless kid. I could have peace of mind and go back to school. My mental health would improve drastically. I was excited! I rarely ever got excited about anything anymore. Positivity had worked.

Two months later we were back in the shelter.

More misery. More tears, more failure. But why? I had been so positive.

I realize this all may sound a lot like faith and isn’t that weird because I’m an atheist? But no, not really. I wasn’t praying to a god. I was just hoping that I’d finally catch a break. I was just hoping that once, just once, the system would help me. But the system isn’t there to help you. The system isn’t broken but it does break you. I had been broken.

So, I kept living and surviving like I always did. I had no other choice. But I no longer had any dreams about my career or schooling. I wasn’t fooling myself into thinking I’d get out of here soon.

So it’s more misery and suffering and failures.

Along the way though I’ve met some wonderful people in online spaces. They care about me and TJ. They’re affirming and gentle and loving. If I’m in a tough spot they rally around me and help. But I was hesitant to accept that at first. I didn’t believe I deserved it. Hadn’t I been suffering alone all this time? Why were these people here trying to help?

I’ve recently found an apartment and my friends helped me share my fundraiser for moving expenses. We reached our goal within a day. But the idea of my having an apartment; of finally leaving the shelter is scary beyond hell.

The apartment has been on my mind nonstop since I found out I was accepted. I go through feelings of happiness, to anxiety that it’s happening, to disbelieving it will. Then I remember that I just need to give them the money. I signed the paperwork already. Then I get this really calm feeling and think “what if this is the break you’ve been waiting for? What if this is it?”

Then I panic because I don’t how to live other than being scared and panicked. I don’t know how to live without feeling like I’m constantly on the edge of disaster. If it isn’t one crisis, it’s another. I don’t know how to relax.

I go on these emotional roller coasters and my friends let me vent and validate me. Then the well-meaning but misguided “positivity preachers” show up. They tell me to relax and calm down. I just need to be positive.

But positivity won’t make the anxiety go away. Positivity didn’t get me the apartment. Positivity didn’t get the money raised. Sometimes “be positive” just sounds like, “Shut up. You’re making me uncomfortable thinking about the hardships people face”. It feels like a silencing tactic.
I’ve found that the people who go on about positivity are either privileged people who’ve never experienced much oppression, or people who are like I once was. People who haven’t been kicked enough times. This is completely cynical on my part, but I do believe that they’ll eventually come to my realization that positivity is bullshit. Whatever good things I have haven’t happened because I was positive. They happened because the friends I have are kind people, and because I’m slowly learning to accept people’s affection and help. Positivity, in the sense that’s it’s some wish granter, hasn’t helped with that. That has been a lot of work on my part.

I’ll tell you though, one thing I am positive about is that I’m lucky to have these wonderful people in my life. I’ve survived this long and that’s a positive thing. TJ is thriving and that’s positive.

I am OK. I do worry. Sometimes the worry is justified, others it’s just my anxiety getting the best of me, but I need to be able to vent these feelings.

Whether things go smoothly or not has nothing to do with my thoughts. If I could so easily control outcomes just by being positive, I would have left the shelter long ago. Unfortunately platitudes don’t put bread on the table.

“Just be positive”

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!

Help me end my homelessness! (Update)

Update: We did it! Thank you all so much!

My daughter and I have lived in homeless shelters since she was a year old. She’s now five. I finally found an apartment in a low-income building but in order to actually move in, I need to pay first month’s rent, security deposit and a fee for fire and carbon monoxide alarms. We have until Friday July 24th to come up with the money, if not I’ll lose the apartment.

We became homeless when we lost our apartment because the City cut the housing programs citing a lack of funds. Since then, TJ and I have gone from shelter to shelter. We’re always placed in a tiny room without much space for a kid to play. Each room we’ve been placed in has been smaller than the last.
The room we’re in now isn’t big enough to have a table, so we ate our meals on the floor. A friend was generous enough to send us a bed tray, so my daughter could at least eat and do her homework somewhat comfortably.

 

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The picture above was taken from the front door of the room. The bathroom would be on the left hand side. Our beds are just around that corner on the right.

 

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This is our “kitchen”. On the left hand side, a box is visible. I use that as a makeshift counter top. The stove has two burners but only one is functioning

 

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This hole has been there since I was placed and they haven’t fixed it.

 

I’ve already seen the apartment. It’s a one bedroom. So it isn’t huge but it is a mansion compared to this room. If I’m able to move in, I’d have space for a dining table. My daughter would have space to play. I’d have a full size kitchen. I miss having a real oven and fridge. I want to cook a real meal. My daughter and I have shared the same space for long time. My daughter would get her own room and be able to decorate how she wants. We’ll have actual storage spaces for our clothes and belongings. She can have a sleep over if she’d like. She’s grown up in the shelter so she didn’t think this was out of the ordinary. But once she began school, she realized something was different. She wasn’t allowed to have sleep overs. She wasn’t allowed to go to sleep overs. Per shelter rules, visitors aren’t allowed here, and she isn’t allowed to spent the night out. She’s realized that this is not ideal or “normal”. I’d like to be able to celebrate her next birthday and Christmas at home. She’s excited about having her own room because she’d like to decorate it with glow in the dark stars (she’d liked to be an astronaut when she grows up).

I’m disabled and cannot work at the moment, but would love to go back to school. Having a stable home would be a huge first step for me. It would help so much with my mental health to know that I and my daughter are somewhere safe and stable.

If you can donate, please do. If not, please share. Every bit helps! Thank you so much!

*link to campaign used to be here, removed since goal was reached*

Sunflowerpunk <3

Help me end my homelessness! (Update)

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.

Continue reading “HOW ADHD SHAMING ALMOST KILLED ME”

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.

Continue reading “THE BEAUTY AND THE BEAST OF ABUSE”

THE BEAUTY AND THE BEAST OF ABUSE