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Spoonie Terms 101

Becoming  a member of a spoonie, or chronic illness community , can be overwhelming with all the jargon and lingo. So I’ve created a document to help you navigate your way through it. There are helpful links, etc. This was originally written for the Spoonies Without Judgment  Facebook group, and feel free to join if you’re looking for a place to call home. I help admin there and we don’t bite. Well, not too hard. Hee.

Terms:

Ableism: Stella Young said it best in her TedTalk. Basically, if it’s not something you would say to someone who is currently able bodied, don’t say it to someone with a disability. This blog post of mine sums up the problems with ableism and why it’s currently a problem. Not to toot my own horn, but I think it’s pretty stinking good!

Ablesplain: I’m just going to pull out a quote from this link because it says it far better than I could:

“In a nutshell, ‘splainin’ is an “explanation” which is put forward in the most patronizing way possible. The ‘splainer feels passionately that ou opinion and beliefs outweigh actual lived experience and wishes to inform everyone of this fact. ‘splainers are unfortunately especially common in safe spaces in which the voices of people living in marginalized bodies are centered, because such spaces are threatening to people who find our voices contrary to their worldviews.

‘splainers feel the need to put their oar in on conversations where they may not specifically be welcome or even wanted, often with an air of entitlement. They approach the conversation from the position that people must be ignorant if they think/experience differently than the ‘splainer does, and that a few rounds in comments will sort them out and bring them over to the side of right. One of the many reasons that this can be harmful is that often people are just starting to come to the place where they feel comfortable asserting their lived experience, because they’ve been taken in by arguments like those presented by the ‘splainer for their whole lives, and seeing those arguments again can set off a spiral of self doubt, confusion, and self loathing.”

Aspie/Autie: Slang for an autistic person. Some people like these terms, some people don’t. Choose to use them if you want, choose not to use them if you want.

Brain fog: “Brain fog”, also know as “fibro fog”, “pain fog” or “med fog” is the feeling when pain or meds make it hard to think. It kind of feels like you’re swimming through pea soup or mashed potatoes. You forget things easy, mix up terms, say the wrong thing, etc.

Bump: Boosting a post up if it has no replies or not a definitive answer. This helps it to come back up.

CW/TW: Content warning or trigger warning. A trigger warning is something that could case acute distress such as types of abuse. A content warning is something that may trigger a phobia and is considered more of a “heads up” than an actual trigger.

Crip: Slang from cripple. Many have decided to reclaim it as their own word and to use it for themselves. The choice is yours to use it or not. Do not use it as an insult – such as “you’re such a crip!” in a cruel way. However, it is often used in a tongue-in-cheek way such as “crip perks”, etc.

Flare: A flare is an acute acting up of your chronic illness. So, if you see someone saying “I am having a fibro flare” today, it means their fibro is currently acting up.

Gimp: See “crip”. Just another word for the same thing.

Image description: An image description is telling someone what’s going on in the picture. This is used for low vision/blind people, screen readers, low bandwidth, etc. If you aren’t sure how to write one, read this. It’s also perfectly okay to ask for help!

Muggle: Muggle is just a term we use for non-spoonies. It’s usually used in a tongue-in-cheek way or in jest.

muggle sick: “normal people sick”. So, if you have a cold, you’re “muggle sick”.

Signal boost: A signal boost is posting something in a group or on your timeline that needs attention. For example, a couple years ago there was a recall of epi-pens (something used for people who have severe allergies). People would post them with the words “signal boost”, meaning it’s important and something should read and share, even if it doesn’t affect them directly. This is mostly done for allergy warnings, med or food recalls, or things that could threaten a life.

Spoon debt: Reaching into your spare “spoons”, or energy, to do something but it means you won’t have said energy or spoons tomorrow. It can be near impossible to catch back up.

Spoonie: Taken from the spoon theory A spoonie is merely someone who suffers from chronic illness.
Painsomina: Pain + insomnia. AKA a living hell. You can’t sleep because of pain, even though you’re SO freaking tired.

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The warnings are not there for decoration!

So. You know those warnings on pill bottles? The ones that say things like “swallow whole – do not chew or crush”? The ones that give you instructions on how to take the medication? Well, here’s a novel concept for y’all: they aren’t there for decoration. This is the story about how my home nurse could have fucking killed me all because she didn’t read a label. All because of a choice she made.

I have not gotten along with this nurse for, well, a long time. She had never heard of my particular eating disorder… despite working at one of the best eating disorder clinic in the country, if not world. She kept trying to blame everything on my mental health. She just realized I had had major back surgery a couple weeks prior to when I discovered what was happening. She gave me gross, in depth details about her sinuses and ear infections, complaining to the girl with a weakened immune system that she “didn’t like being sick”. Told me that I HAD (not should, not should look into, not it might be a good idea) to do yoga and mediate. Whatever. Annoying as fuck, but with some things you just gotta put up with it.

I had run out of my 50 mg tablets for the medicine in question, so she took it upon herself to cut them in half. Despite the HUGE warning on the label “swallow whole – do not chew or crush.” Even though most basic rules of medicine is you never cut an XR/ER tablet. This is a HUGE mistake – not a rookie one. Everyone I have talked to knows this is something you don’t do. It can either overdose or underdose a patient. If you suddenly change your dosage of an SNRI, you go through withdrawal. She caused Antidepressant discontinuation syndrome. Which can, in rare cases, be fatal.

She could have killed me. I could not be typing right now. I could be in the hospital. All because she didn’t read a label. The labels aren’t there for decoration. The labels aren’t there just because the pharmacist felt like slapping them on. When people say antidepressant withdrawal is a huge deal? It is a HUGE fucking deal. I plead with you because of this, NEVER split your extended release tablets in half, no matter what. And never EVER stop cold turkey – you get very, very sick very, very, quickly. I nearly went to the ER with my problems because I didn’t know why I was so sick. And now I do. And now I’m pissed.

What now?

First, I would like to some questions. Some that I actually got, some that I know people are wondering.

  1. Why can’t you do your meds yourself?
    1. In my state, I qualify for what is known as a CADI waiver which means I qualify for nursing home level of care.
    2. I am low vision, autistic, and have chronic pain. These things combined make it near impossible for me to manage my meds myself when the number tops one dozen.
  2. How did you not notice?
    1. First, I did suspect something was amiss just a few days prior. I figured I would find out the next time.
    2. I am low vision, as I said. My pills come out in a medicine cup from an automated machine like this and being low vision, I have trouble telling the pills apart.
  3. Why didn’t you confront her when she told you?
    1. I went into shutdown. I was completely overloaded and basically incapable of talking beyond basic “uh huh” and “huh uh”
    2. Even if I hadn’t, I wanted to talk with my case workers and doctors – I wanted any confronting on my end to be done with a paper trail. Although, my state is a single party recording state (meaning only one party has to consent) so I would be able to record any further interactions. I did block her  cell phone number and told my case manager she is never to set foot on premises again.
  4. What happens now?
    1. I don’t know. I am waiting for any legal action until I see my primary doctor next.

Second, I will be getting a new nurse soon. We are completely changing agencies. But… I am scared. I am terrified. Chronically disabled people often don’t trust their providers, with damn good reason. This has shattered my trust even further. We put our lives in the hands of someone else, and we are at their mercy. But if we don’t, then we get sick anyway because we cannot do it ourselves.

There is no fix. There is no way to make it easier. This is what it’s like living when you are chronically ill. You have to trust people who can kill you with one little mistake. And it’s utterly terrifying.

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I am not a tragedy or an inspiration

I am not a tragedy. There is nothing tragic about my life. I am disabled. I am autistic. And you know what? It’s all a part of who I am. It isn’t tragic. It isn’t a horrible fate. And no one is my voice. No one but me. Even when I lose my verbal speech. The only time I do not have a voice is when you try to silence it. The only time I am voiceless is when you refuse to listen to my atypical speech.

I am not a tragedy. I don’t suffer from autism. I am not a person with autism. I am an autistic female. Autism runs through my veins. It’s very much a vital part of my personality. It is as crucial to my personality as the fact I’m a sarcastic asshole and my affinity for puns. It’s just not something I can easily change. And to be frank, I wouldn’t change it. Of course there are things I hate about autism. It isn’t all sunshine and rainbows. But at the same time, to love myself and to hate my autism – like so many parents claim about their children – would be to hate the very core of my being.

I am not a tragedy. My disabilities are not tragic. Sometimes they suck – getting sick so easy sucks. Having disabling migraines suck. Being in pain all the time sucks. But you know what? Some very good, very not tragic things have happened as a result. I have an amazing circle of friends who would move hell and high water for me. I have friends who have done little things for me, just to make me smile or to hear my laugh. I’ve made friendships I wouldn’t have had. Is the fact I’m a college drop out tragic? Absolutely not. I am simply making the best of my situation. There is nothing tragic about it. The only tragedy is people who try to silence me, because they think I should be a good little crip.

I am also not your inspiration. I do not exist to inspire. I do not exist to teach you. I do not exist to make your life better. There’s nothing inspiring about me doing my famous hobble-hop on days when I don’t want to use my crutches or walker. There’s nothing special about me being able to balance crutches and a cup of steaming hot coffee (well, okay, it is kind of impressive I don’t spill it down my shirt, but that’s because I’m an absolute klutz not because I’m a crip).

I am not your inspiration. I am not inspiring because I simply go about my daily life. To call me, to call your child, to call your sibling an inspiration just because we’re disabled and for going around our days is ableism, and turning us into inspiration porn. Don’t do the thing. Don’t demean us. Don’t objectify us. Don’t tell us that we exist to inspire, that we exist to teach. We don’t. We exist to life our lives.

I am not your inspiration. I am just like you in many ways. I love Firefly and Doctor Who, the Avengers and Pirates of the Caribbean. I’m snarky, sarcastic, cynical, bubbly, and happy go lucky. I am a mix of Luna Lovegood from Harry Potter, Kayle from Firefly, River Tam from Firefly, and Silica from Sword Art Online. I just have disabilities.

Do not turn me into a tragedy.
Do not turn me into an inspiration.
For I am none of those.

I’m simply Nora.

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Allodynia Sucks

I have AllodyniaIt sucks. And by sucks, I mean it really and truly, totally, 100% sucks. You know the feeling when you have a still healing sunburn? You know that feeling when the slightest touch makes you recoil in pain? Yah, that. You know the relief you get once the burn has faded? Yeah, I don’t get that.

I haven’t had it my whole life though I’ve always been hypersensitive to touch. I’ve never liked being touched, never liked hugs. As long as everyone touches my clothing and not my skin, it’s fine. But living with it day in and day out is exhausting.

Some people only experience it when they have a migraine. Others, like me, have it 24/7. It restricts my clothing choices – some of them are literally painful to wear if they aren’t made of the right fabric. It means I have to use a blanket year round to sleep under – I absolutely require the soft touch against my skin because the feel of the room air on my skin is painful.

Just imagine.

Imagine enjoying the feeling of a breeze, but at the same time it’s painful because ANY type of touch hurts.
Imagine craving physical touch and affection, but not being able to enjoy it, because it hurts. Imagine not being able to enjoy cuddles… because they hurt.

The worst part is for me, there is no treatment. Sure, they can take the edge off.

But I’m still going to live in pain.

Simply by being touched.

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SMILE

Something I have been told my entire life is “the only disability in life is a bad attitude”. Not in those exact words, though. “Smile! Your face will break!” “You’ve got to keep smiling.” “Keep your chin up!” “Don’t let it get you down!” “It’s just a bump in the road.” “It’s not that big a deal.” “Other people are more disabled than you.”  “She would want you to smile.” “She wouldn’t want you to be sad.”

You know what? Sometimes attitude doesn’t do a thing. I can have the best goddamn attitude I want, but Beth isn’t coming back from the dead. I dearly loved Beth and Beth dearly loved me. I am grieving. To tell someone who is grieving how they should feel, and even further – to use their departed loved one as a tool how to feel, is unintentionally cruel. We know they would want to see us happy. We know they loved us. We know all that. But knowing doesn’t take away the hurt.

Contrary to popular belief, I’m actually a happy-go-lucky, bubbly person despite being shy, autistic, struggling with anxiety, and having depression. I crack jokes at the worst times and I’m the person you will find cracking up for no reason at a funeral. I laugh to cope – I laugh instead of cry which has created some really awkward moments in my life. But I’m also cynical, sarcastic, and scared. But when you tell me my disability is my attitude, you’re implying that my attitude is the problem when you know nothing of my attitude.

You see, when you say “the only disability is a bad attitude”, you are essentially saying if I tried hard enough, I wouldn’t be disabled. That’s not true. I can try as hard as I want, but I will still have metal in my back. I can try as hard as I want and be as perky as ever, but it doesn’t change the fact my immune system is at war. I can happily bonk you on the head when I have a deliberating migraine, if you insist I keep up a good attitude though… but I don’t quite think that’s what you’re going for.

Shocking, each one of us disabled people has our own personality. I know, novel concept eh? But we’re all unique. We all use our attitudes in different ways. And if someone choose to be bitter toward having a disability – that’s okay. If someone chooses to be angry, that’s okay. It doesn’t make them better or worse than anyone else with a disability. It doesn’t mean they’re a “bad crip” or anything.

It seems that just because we have disabilities, we’re expected to be perky and happy for YOUR benefit. Because YOU don’t want to see us suffer. Because our loved ones who have gone before us wouldn’t want to see us suffer. You know what? Life fucking sucks at times. Life fucking isn’t fair. People die too young, people get illnesses ‘too young’, people are born with disability. Life happens.

I will choose to live with my disability with the attitude I see fit. Today, I may be advocate Nora. Tomorrow, I may be educating Nora. Next week, I may be bitter and cynical Nora and in a month, I may be bubbly and cheerful Nora. Just like an able-bodied person, I have feelings and emotions too. Just because parents of disabled children seem to think we should be happy and their children should be joyful, doesn’t mean we have.

Disability isn’t merely overcoming what our disability throws at us.

 

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Why I Am Not Your Inspiration

Left and right, I see disabled people like me being called an inspiration. I see us put on a pedestal, for simply going about our day to day lives. I see us treated like we’re doing something amazing, for merely living! Gasp! How dare we actually, you know, do normal things!

I don’t want to be an inspiration.

Let me rephrase that.

If you’re inspired by me, be inspired because I’m compassionate, loyal, funny as hell, and an advocate.

Don’t be inspired because I’m disabled.

I am more than my disability. 

Behind the crutches, behind the walker, is a person just like you. I do the same things you do. So why am I an inspiration because of it?

There is nothing inspiring about living with a disability. To think as such as demeaning and belittling to us. To act as such is to treat us like we are less worthy, simply because we’re disabled.

We don’t exist to inspire you.

We exist to live our lives. We deserve dignity and respect.

Not bullshit, wishy-washy inspiration.

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The Delicate Balance

Something many people don’t realize about chronic illness and/or disability is that it’s a full time job in and of itself. There is so much EFFORT you have to put into it and it’s about things you really would never think of until you’ve lived it. It’s a delicate balance – a terrifying walk across a tightrope trying to get everything to be just so.

For example, doctor’s appointments. Don’t dress too nicely, or you’re not that sick. Don’t dress too grubbily, or you’re merely depressed. Find the balance between comfortable and too nice, which is hard. Don’t put too much effort into it, but don’t be completely lazy. Don’t be too honest and open about your symptoms, or you’re drug and attention seeking. And don’t try to brush it off, or it isn’t that big a deal.

Choose what you’re doing today. Going to send out some emails? Make some phone calls? Do some paperwork? Clean the apartment? Visit friends? Cook supper? Chances are, you can’t do it all. You have to decide what needs to be done, and what can wait. And even if it all needs to be done, it often just isn’t possible.

Use your mobility aid and get stares, comments, and judgement. Don’t use your mobility aid and get stares, comments, and judgement. Take your medicine in public and hear the whispers and comments about the druggie. Don’t take your medicine in public and get hella sick.

Go to the ER and get treated like shit. Don’t go to the ER and get sicker and sicker, but you just can’t deal with the judgement. It isn’t so cut and dry when you’re chronically ill. It isn’t so simple when your life is doctors and illness.

You sit around playing video games, watching movies, and reading. You’re lazy. You’re not really sick. You go out and spend time with people. WOW NORA, STOP PUSHING YOURSELF. YOU REALLY NEED TO TAKE CARE OF YOURSELF.

You feel bad for not Doing The Thing with your friends. You feel bad for Doing The Thing because you feel like a party pooper and an inconvenience. Do I tell them about my allergies and places I cannot eat, and look like a pain in the ass, or do I keep quiet and just eat when I get home?  Do I take care of my mental health or my physical health, which sometimes overlaps and sometimes doesn’t?

Do I take the meds that make me feel better, even though I live with horrid side effects, or do I forgo the meds because the side effects are unbearable?

And the other aspect of the job is juggling all the things. Doctors. Therapists. PCAs. Homemakers. Nurses. Some come to your apartment, some don’t. You get judged because “someone with THAT many appointments shouldn’t have this much time to spend online”. (Clearly, you haven’t been in a doctor’s waiting room. You NEED something to do). You get judged if you pull back because people get worried.

Do I try to knock out the appointments at once, or break them up? Do I get up early to get in sooner and then be out of commission for days, or do I wait months for an appointment? Do I try to balance a job with all this, or am I forced to live a life under the federal poverty line? Do I try to go to school and get an education? But that opens a whole new can of worms with disability accommodations.

How do I find the balance? What if something happens and throws it off? Then what do I do?

 

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I’m tired of talking about ableism

I’m tired of talking about ableism.

I’m tired of waking up and seeing stories in the news about people treating people with disabilities like people. I’m tired of seeing it treated like the exception and not the norm, and people deserve a motherfucking cookie for being a GOOD PERSON who is SO KIND to the disabled person when we’re just living our lives. McDonalds. Meyer’s. Everywhere you turn and it’s even worse this time of year, which seems to be “take pity on your resident crip.”

I’m tired of talking about ableism.

I’m tired of people telling me I don’t look sick. I’m tired of being told I’m too young to have these problems. I’m tired of juggling my life around a PCA, homemaker, various social workers and case managers, doctors appointments, home nurse visits, and more. I’m tired of waking up in pain and going to bed in pain. I’m tired of doctors not taking me seriously.

I’m tired of talking about ableism.

I’m tired of seeing bullshit like Kylie Jenner. I’m tired of people thinking of me as an inspiration just because I’m a gimp. I’m tired of taking medications day in and day out that I need to function. I’m tired of not being capable of using a stove on my own. I’m tired of being terrified that before age 30, I will be in assisted living.

I’m tired of talking about ableism.

I’m tired of the looks. The stares. The comments, both to my faec and behind my back. I’m tired of being doubted. I’m tired of being treated as a child. I’m tired of being forced to be neurotypical – maintain eye contact when I say. Don’t do your stim. Don’t think about that thing. Don’t do that thing, don’t do these thing, we don’t like it. You’re weird. You’re not good enough. You’re too good to be disabled. You pass as normal too well. You’re so embarrassing to be seen around.

I’m tired of talking about ableism.

I’m tired of being held up on a pedestal, as some poster child for my disabilities. Of being told I’m brave for merely living my life. Of people telling me they’d kill themselves if they had my disorders. Of people telling me I should kill myself, because my life isn’t worth living. Of being judged for doing what I do. Of never being a good enough crip.

I’m tired of talking about ableism.

I’m just tired in general. I sleep too much. I don’t sleep enough. I graze all day instead of eating regularly. I don’t eat at all. I don’t eat enough. I drink too much and get bloated. I don’t drink enough and wind up in the ER. I am juggled from specialist and specialist just trying to figure out what the fresh fuck is wrong with me.

But yet…

I can’t stop talking about ableism.

Not while we wake up to some so-called inspirational story about a person with disabilities. Not while we live in a world where people think it is okay to say things to a disabled friend that they would never utter to an able bodied friend. Not while stories catch on like wildfire around social media, not even thinking about the feelings of the DISABLED person. Oh no, we are focused on how KIND and GREAT the OTHER person was.

I can’t stop talking about ableism.

Not when we live in a world where people out people without their consent about their disabilities, and then expect back pats for being so kind to the disabled person. Not when we live in a world where it’s considered AMAZING to be nice to a disabled person, when it just should be human dignity. Not when it’s considered “cute” to have OCD quirks, autistic quirks, all these little quirks when they’re NOT quirks, dammit, they’re who I am and I can’t control it and to brush them off as quirks demeans me.

I can’t stop talking about ableism.

Not when people talk around me or about me, but not to me. Not when even disability conferences and college disability services cannot get their shit straight. Not when it’s considered amazing and inspirational I got so close to graduation but had to withdraw for medical reasons. Yes, I’ve made the most of shitty situations but we ALL do.

I am so fucking tired of talking about ableism, but unless I want things to get better and to finally get a rest from talking about it, I can’t stop talking about ableism.

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From fear to hope

Something that is a regular part of my life, and has been for all twenty-eight plus years of it, is being in and out of doctor’s offices. Everything is intertwined and, as my primary care doctor put it, “Well, your body doesn’t always read the textbook.”  Which, you know, while it’s a difficult pill to swallow at least I’m unique, right?

But what I find most terrifying out of all my medical issues isn’t what I have. While a lot of them suck horrifically – NF1, fibromyalgia, and over a dozen more – what I hate even more is the disorders that we don’t know why I have. We don’t know why I randomly can’t eat for a week, and every attempt ends in me puking. We don’t know why while I’m in these flares I can barely leave my bed and I’m not even strong enough to play video games. We don’t know why despite throwing every nausea medication in the book at it, it’s still not enough.

Because, you see, I would rather have something scary that I know what it is, then something mild and easily that I don’t know. The unknown is one of the scariest parts of being medically fragile. Knowing, at least, would give me a definitive answer.

For now, I live every day in fear. For now, I live in fear that my stomach will stage a mutiny again and I’ll be back into the vicious cycle of the stomach issues from hell. For now, I live in terror that the GI will brush me off again. I worry and worry and worry that every test will turn up normal and we’re back to square one.

But this doesn’t mean I’ve given up hope. I know there’s a diagnosis out there for me. I know there’s an answer to why I’m like this. And even though right now it feels like there’s no hope whatsoever, I know there’s still a flicker of hope out there. I know that one day, my fears will melt into hope again and I will have the answers I need for my medical crap.

 

2

A difficult pill to swallow 

Recently I had my reassessment for my state waiver that pays for my in home services. It’s always a difficult time of year. In some ways, you want to fail the assessment because it means you get the help you need. In other ways, it’s disheartening to gradually with your health fall apart.

I had been assessed in 2013, and was deemed to not need further care after my back surgery. By fall of 2014, I had been accepted into the waiver program and fall of 2015, my services were even further extended. Anyone who knows me will tell you I’m fiercely independent,   stubborn enough to give a mule a run for their money, and have an irrational hatred for asking for help.

But I now have multiple providers coming to my home a week. And while part of it is a relief that I’m not juggling everything on my own and I have the help I finally need, it’s so incredibly hard to accept that age 28, I need nursing home level of care. It’s terrifying that I’m so young. So many fears play tag with each other in my head – will things get worse? Will I need actual assisted living? Will I ever improve enough to get the degree to be a hospital chaplain that I’m just one and a half semesters away from? At that, will I ever get the seminary degree I outrifht covet at this point? Above THOSE, will I ever get a job?

My renewal paperwork also stated that I don’t want to work. That’s the furthest thing from the truth. I find that it’s those that actually cannot work that desire to work the most. I would love to have a job. I would love to have a life outside of video games and Facebook and movies. It isn’t how I saw my life 10 years ago, as a senior in high school.

But I’ve come to realize these aren’t the things that define me. The fact I have a great need for care doesn’t mean there aren’t things I still can’t do for myself. The fact that I cannot work does not mean I am not a productive member of society. And the same goes for you if you’re reading this. You’re not a failure if the most productive thing you do today is get up and go to the bathroom. You’re not a burden on society if you need extensive in home care.

You’re still funny, beautiful, and enough. Some days, it is enough just to say “I woke up this morning and I made it through until evening.” Some days it is enough to say that yes, I had extensive supports today but they helped me make this day the best I could. Some days it is okay to say that wow, today sucked and was the worst day in a long time, but I made it, and that is enough.

It’s a difficult pill to swallow. It’s difficult to leave my hopes and dreams behind. But instead of leaving them behind, I’ve watched them morph into something new and something I still never dreamed of. And that’s what life is – making the most of the unknowns and going forward every day.