I Want to be a Survivor, Not a Victim

lionness in the serengetti next to a tree  overlay text "I want to be a survivor, not a victim. My perspective on having internal power. spoonielifestyle.com"

Last night something scary happened. I had a two-hour-long panic attack. My mind’s eye kept reminding me of all the hellish states my life was in. My horrible, love-hate marriage. The crippling physical pain I experience every day. Coming to grips with my identity as someone who is sick, but only kinda sick, yet still hasn’t worked in two years.

Maybe this doesn’t sound like a nightmare to most people and that’s because I’ve redacted most of the information. I’m a pretty open book, but on this blog I still have to censor myself. My marriage is in a hell hole. Partially the hole is that my husband and I haven’t slept in the same room consistently since our second week of marriage. It sucks. It’s scary. I acknowledge that I write about this relationship in a very lovey-dovey way and then swing back around to clobber it with a hammer, and that’s just the way it is – it’s the most bipolar, pardon my french, young marriage you can have without signing on the dotted line to separate forever.

I still have hope it can be recovered, as I am in survival mode and can’t afford to think of the alternatives. What does a failed marriage say about me? What does it mean when it is such a young marriage? How will I keep myself away from my dad when he tells me I have lost the right to marry again? All of these thoughts and real-life conversations swirl over me in the night.

Then as a ghostly specter, my husband comes crashing through the guest bedroom where I basically hide/live with the door locked, and lodges a pitchfork through my chest. I wake up screaming. Where am I? How did I get here?

Not to mention my entire body is burning and I am numb in my hands. The dull ache in my shoulders is a good sign – it’s there but nothing to report back on. Then comes the migraine, then comes me texting all my friends in the dead of the night. The good ones text back.

At this point, I have had about 2 hours of sleep.

I don’t believe in victim mentality, but what what do you call yourself when you’re a constant target living in fear? Right now I aim for surviving in this environment until I can say, “That was the old me. That doesn’t happen anymore. We don’t live there anymore. We don’t talk to ourselves like that. I survived that. I am not a victim. I am a survivor.”

Let’s unpack these terms “victim” and “survivor.”

You can be a “survivor” still living in a “victim” situation. Likewise, the reverse is true.

Survivors are focused on tasks. They know what to watch for, have safety plans, battle plans, and self-care plans. I’ll refer you to this article on self-care for some ideas to pick and choose. The biggest thing is you maintain hope and a sense of self by keeping a tiny part of your soul in a pocket for only you to see. This could be something like a favorite book, a pocket bible, or a pocket journal that is easily accessible, hide-able, and portable.

Victims are focused on emotions and blame. They don’t necessarily pay attention to anything outside of their reptilian feelings and like to play the blame game – and that includes placing blame on themselves, thus engaging in the martyr game. There is no interaction with themselves, the situation, or their environment. The key difference is no self-introduced catalyst for care AKA change.

Victims beat themselves up. Survivors approach themselves with kindness and self-love.

So, today I’m going to be a survivor. If I find myself in Victimland, I’ll gently guide myself out and kindly figure out what to do about my situation, even if it’s something internal. Today I hope you are all survivors.

Fibromyalgia Awareness Day

Purple sea with the text fibromyalgia awareness day

Apologies for not writing this sooner, my fellow fibros. My life caught on fire again and I found myself trying to survive in more than just a chronic illness way.

I honestly don’t know what’s more responsible for ruining my life… fibromyalgia or myself.

That’s a very common sentiment with fibromyalgia patients. Doctors, take notes.

Really, I don’t want to make this a Whiner McBabypants post. But right now I will tell you what I am currently experiencing:

  • Numbness in my left pinky that has lasted for a week
  • Severe pain that has lasted in my shoulders for about a year
  • Tingling and stumbling of my fingertips

Basically fibromyalgia is weird and uncomfortable, like a sweaty kid at a high school dance that thinks it’s okay to use axe spray instead of shower. I don’t mean to diminish our pain, not at all, especially on awareness day. But for the nature of my sanity I have to. Which brings me to things that helps me with MY fibromyalgia:

  • Listening to upbeat EDM songs
  • Going outside and smelling flowers
  • People not giving me more shit than I can handle
  • EMDR (there are therapists that specialize in pain therapy and trauma therapy, these are great)
  • Reading books about strong females
  • Writing (as you can tell the writing is mainly bullet lists, but I have lack of coordination in my fingertips today)
  • Tai chi
  • People being kind and understanding, which means that yes, I look different than I do a year ago, it’s fine. No, I can’t do that thing. It’s not my fault. Thank you.

What makes fibromyalgia suck more:

  • Assholes
  • Being forced to do manual labor when I absolutely cannot do it
  • Being told to just do the magic normal able bodied thing and health will just fall from the sky
  • Being told to do some diet thing and the unicorn of health will bestow her grace upon me and I’ll be up on her like the Dark Lord out of a Harry Potter book
  • My PTSD being triggered like a shark smelling the blood of a newborn, panicked squirrel in the water
  • Basically, DON’T BE AN ASSHOLE. BE NICE TO PEOPLE.

IN CONCLUSION:

As fibromyalgia currently has no cure, the best thing we have is to love each other.

2 Traditionally Bridal Things I Didn’t Care About As A Chronically Ill Bride

Bride with sequin shoes. sign overlay 2 Traditionally Bridal Things I didn't care about as a chronically ill bride spoonielifestyle.com

When I was engaged to my husband, I was in the process of being diagnosed with lupus and fibromyalgia. During what should have been my time of joy, I was ridiculously sick. Therefore my wedding, although I tended to it the best I could, did not have all the typical girl-things most brides obsess about.

To most women, your wedding day is your most beautiful day – and that means your physical self. I had some radical self-acceptance when it came to my appearance. There were just some things I couldn’t control, some things I had no energy to control, and some things I knew would pain me to control to the point where the gain wasn’t worth the cost.

I wondered if other chronically ill brides had similar experiences, so I wrote this short listicle.

1. Losing weight

At the time I was a vegan, swimming for 2 hours each day, and doing 45 minutes of yoga. By the time the month of my wedding had rolled around I had astronomically gained weight from pain meds. I was also bed bound and couldn’t walk like I used to. When you’ve gone from standing unassisted to needing a cane, you’re gonna nope out of doing crash dieting, binging, and sacrificing your hate-selfies to the weight loss gods. I bought WalMart spandex to get into my dress and got on with my life.

After the wedding, almost immediately after the honeymoon, I was also diagnosed with hypothyroidism after about six months of looking for it. Chuckee darn, y’all, I could’ve guessed that!

Now Pinterest and any other god awful website (I’m looking at you, Instagram) shows me body shaming, hateful things that I wish I knew how to tell the website to block, because back when I was thin I didn’t have these problems. I wonder if it’s looking at me through the camera and going, “Oh, look, a fat girl. We have to make her hate herself so she’ll use the site more.” Kinda like the time Pinterest kept sending me suicide notes while I was starting therapy. Who writes these algorithms? Yeah, I don’t know either. I only use Pinterest to pin Chronic Illness Business stuff.

In all, I gave up on sweating for the wedding, because I couldn’t move. I don’t regret it. During the time I still had a gentle yoga workout regimen, but the cards weren’t in my hands.

2. Having perfect skin

I was super stressed out and so sick I couldn’t communicate to my doctors I didn’t deem essential. For my doctors I deemed essential, such as my rheumatologist and neurologist, I would create PowerPoints on my tablet. When it came time to talk, I would pass the tablet over to them. So when it came time to see the derm, I didn’t create one. I figured he’d look at my skin and be done with it.

Unfortunately I was expected to talk at the derm, and I was not coherent due to the pain I was in. I remember the smirk on the doctor’s face. Not to mention when I was prescribed an acne cream, I couldn’t remember to use it due to brain fog and constantly being on the go with doctor’s appointments sometimes at 8AM. I lived 45 minutes out from the city.

During this time, I was also watched for developing a lupus rash, which the derm didn’t seem to understand, and proceeded to tell me what allergy shots were and how they worked like I was in 5th grade.

Are you a fellow spoonie bride?

Don’t worry. You’re still going to be beautiful whether you labored over your appearance for months or years or not. You should be yourself on your wedding day. Whatever form that is, just is. Nobody owes the world a physical beauty that is strictly theirs to keep, not even on their wedding day. Sometimes we are all forced to be who we are. If you fall in that boat, don’t worry.

A Disabled Body is an “Every Body”

I love my beta readers. Without them The Disability-Friendly Wedding Planner would not exist. Most of them are my family, so I owe them my life. However, I struggle with my beta readers from an ideological standpoint. This is something very real.

Before the book changed its name and content, my beta readers were great. They still are great, but with much crappery.

When the book transitioned to The Disability-Friendly Wedding Planner, things changed between me and my beta readers. I told my beta readers I wanted to include men, they responded men weren’t to do any wedding planning. Then, when I said I wanted to include genderqueer people, they responded with, “But they already have wedding books. Everything is already about them. You see them everywhere.”

Them. Them should be a curse word, unless you’re referring to gender-neutral pronouns.

We live in an Us vs. Them world, where many people see themselves as an US, while everyone else is a THEM. Thems are subhuman, immoral, and undeserving of what US have. Us are kind, intelligent, noble, moral, and good. Us deserves their rights and protection.

Ultimately, Us does not understand Them.

There is a way to be a Them on multiple levels, an Us on multiple levels, or partially an Us and partially a Them. This is called intersectionality – the blend of a person’s social identities that either brings them a cocktail of power and/or submission.

For queer disabled folx, they have many blends of social identities that make them a big ol’ THEM to the white, cisgender, Christian folks that have been volunteering to read my book.

Not everyone like that THEMS folx, but a few do. I hope with my book, the thems of the world are exposed as US to somebody – a lot of somebodies – and eventually everyone.

Good day.

If you are a good person, hit me up in the comments. Please help me with my project. Please please please. Even if you aren’t queer, if you have chronic illness or a disability, this project can help you. This book is a traditional wedding planner for everybody – and I mean every BODY. A disabled body is an every BODY. People never realize it, but in the blink of an eye, the progression of age, anyone and everyone eventually becomes disabled. Just think of your 80 year old grandma, or how I went to athletic and active to occasionally using a mobility aid and unable to walk my dog.

A disabled body is an every BODY, so the book includes everybody.

5 Tips For Reaching a Diagnosis

Experiencing bodily discomfort can be scary, especially if it’s new. At first, you may have no clue what to do. You start out talking to family and friends. Eventually, you consider a doctor. The first visit is more confusing and angering than you expected. Aren’t doctors supposed to be like vending machines? You get the sniffles, you go in and out comes an antibiotic or nasal spray? Why is this so complicated?

That’s because the journey to a diagnosis is a long, hard one. If you’re reading this I can guess you’ve been on WebMD self-diagnosing yourself with everything from leprosy to cancer. You may have even come across fibromyalgia by this point, and you might want  to ask your doctor to test you for that. Don’t do that. Fibromyalgia is a diagnosis of exclusion, to be explored in later blog posts, as this is a somewhat controversial statement depending on where you live. It’s basically what you end up with after about a year of tests for everything but fibromyalgia. But there is a way to streamline your diagnosis journey.

For example, I have a severe form of fibromyalgia. It developed over a series of 3 years. There is, honestly, no use in me railing against the medical neglect I received that led to the lack of catching it before it progressed so far. Who knows what might have happened if doctors had seen the tan, fit, blonde pretty twentysomething with a mental health record’s complaints as valid back in 2016? I may have ended up just as severe as I am now. What I do want to do is give you a short regimen for gathering data should you find yourself in a similar predicament.

  1. Know what pain is.

I honestly didn’t know what pain felt like. As a small child, if I fell down and scraped my knee, my mother did not come over, pick me up, and kiss my booboos. Even when I developed endometriosis at age 14 I thought I was just sick to my stomach, light headed, and bleeding like crazy. I could describe what was going on poetically: “Something is clamping on me,” “this burns,” but I never thought of it as pain, because I was taught to ignore, belittle, and never admit pain from a young age. If you can describe what you feel in metaphors, think about people in movies or books experiencing similar situations and if they were described as being painful. If painful doesn’t work for you, think of “this hurts!” Answer “yes” when the doctor asks you if you are in pain if you can pass the metaphor, movie, or hurt test.

2. Keep a log of symptoms.

Buy a little pocket journal. When you get up every morning, write the date. Whenever you experience a symptom – nausea, vomiting, tingling, bowel movements – write the time and the symptom next to it under the date. Repeat. The point of the log is both for you to show the doctor and for you to learn patterns.

3. Exercise

Track your exercise in your symptom journal. Do you feel dizzy or lightheaded? How long are you able to exercise? What type of exercise are you doing? Even if you’ve never exercised before in your life, do this anyway. It will give you a more accurate depiction of your endurance. You can even start off just walking at your local mall or around your neighborhood.

4. Food

Log what you eat, when you eat, in your symptom journal. Your symptom journal should be written chronologically.

5. Clothing

When you write your date in your journal, record what clothes you are wearing and when. Make sure you write down the fabric type of the clothing. This can be found on the tags inside your clothes. This can help you see if there is a pattern between what you’re wearing and whether that triggers a symptom. Numbers 2, 3, and 4 are good things to do post-diagnosis as well.

This 5 step list is great for any diagnosis journey, no matter what the diagnosis may be. Remember to be patient and kind to yourself, because most diagnoses take quite some time. It’s okay, many people have been there before, and get off of WebMD!

3 Mental and Spiritual Ways to Cope With a Pain Flare

When you’re stuck in a pain flare, it’s hard to envision the light at the end of the tunnel. Here are some small (albeit unorthodox) ways you can keep your head above the pain for perhaps a little while.

I’m keeping this list short due to the nature of pain flares. Some of you might be frustrated with all the multitudes of things you think you have to try to get out of a pain flare. I will tell you that some of these might help for only some of you, but these are generally good practices. There are no magic wands to make pain flares go away, but there are ways to make us feel more comfortable.

Why I’m Using Spiritual and Psychological Techniques

Generally, pain flares affect your mood, and your mood affects your pain flare. It’s like a dog chasing its tail that catches it and devours itself. Without cultivating positivity, escaping your pain flare is postponed.

Using Your Mind and Spirit to Escape a Pain Flare

  1. Write down (or tell Siri) 3 things your grateful for.

Each day you’re in a pain flare, take out your journal, your phone’s notepad app, a video or voice recording app, or if you can’t move, tell Alexa, Siri, or Google Assistant 3 things you’re grateful for. Pain flares are tiring, and 3 is all you need right now. No need for pages of gratitude to cultivate it.

2. Read your favorite book with a character you relate to the most. Let yourself cry.

If you relate the most to Jane Eyre and her suffering, read it. Relate to how tragic her life is. Throw a pity party and sob. You need the emotional release, but above all else, you need to relate to someone on an intimate, internal, mental level. Your friends may not understand, but you can make a fictional character understand.

3. Connect to a higher power.

This can be your version of God, the Buddha, Jesus, or the Universe. Connect with the energy around you with meditation, prayer, bed yoga (you can find videos on YouTube), coloring mandalas on your phone, or reading holy texts. Knowing there is something bigger than you gives you the peace that you are taken care of and that the pain flare will go away.

This is a little list, and I wanted to keep it small – pain flares can be overwhelming, and someone on the internet screaming at you to do 12 things might make you upset because you can’t get out of bed. You’re most likely phone surfing from your bed. But pain is cyclical, and this too will pass. Hugs to you.

Self-Encouragement

I’m not looking for feedback but I feel this is the classiest one, as the watercolor accessibility symbol is gone.

In the past, I was an art student studying graphic design. It was my dream to create beautiful things for others. But then I dated some jerk who told me I was too fragile to spend time in the studio without him, and I switched to the liberal arts.

It was the greatest regret of my life. I vowed that I would never let anyone or anything keep me from achieving my goals.

As some of you may know, I’m in the process of being published. I will be talking about this a lot for more than one reason, namely because it’s an emotional rollercoaster, and anyone who reads this blog knows I am pure emotion. I am 100% F in the INFP.

My post yesterday revealed the staggering amount of rejections I received in a month as well as someone attempting to con me. I’m not giving up, but I do need self-encouragement on my journey.

A weird thing I like to do is go back to my art roots and design dummy covers. Every morning I design about 6 and choose one to three that I like best. I choose my favorite to be my wallpaper on my phone and computer, and the grand slam of the week is printed out and taped to my desk. It helps me imagine a book on the shelf.

I have a creative vision of what the book will look like: delicate, cute watercolors. Because the book covers so many different types of conditions, I wanted a classy way to be inclusive. No bodies will be represented with images. No mobility aid depicted in a pictorial form. Just symbolic representations of what it means to traipse along the wedding planning process in a whimsical way. The book is full of whimsy.

The book needs to communicate that the differently abled, disabled, and chronically ill are people who are loved. People love us. The world needs to know that.

And with my pep talk, I hope you are looking forward to the weekend, and have a happy Thursday.

Not Giving Up

NOT a novel

When I first shared my covers on Twitter, there seemed to be some confusion about “the brides different ability.” This discouraged me a bit about my communication skills. I think this is partially because I am keeping this project a little bit under wraps.

The Differently Abled Bride Guide is a wedding planner book for women with chronic illnesses and disabilities. Differently Abled is the PC term for those conditions, as either of those groups can define themselves as disabled, not disabled, or differently abled.

I am trying to create a one-stop wedding planning resource for women with conditions ranging from fibromyalgia to paraplegia and everything in between. This is why I have been conducting so much research. I want accurate and inoffensive information.

Yesterday, I had some discouragement. I was approached by a publisher who asked me for $20,000 dollars to publish my book.

I’ve never even spent that much on a car. That is a fancy car to me.

This came immediately after my favorite publisher rejected me. So far I have 12 rejections in a month.

I know what I am doing is risky and out of the ordinary. My friends were so encouraging. But I’ll stick to it.

Don’t give up y’all. Some day we’re all gonna change the world. We’re gonna help people.

My PIXAR Movie PTSD Metaphor

rainbow background with text"what's your metaphor? my pixar movie ptsd metaphor. spoonielifestyle.com"

You live in a black and white world except for four colors: red, green, yellow, and blue. As you look around in your periphery you see patches of green, yellow, and blue if you don’t have trauma. If you do have trauma, you may sometimes see a spot of red that engulfs your vision. When that happens, you collapse backwards.

Every day of your life you wake up a new person. For every past day of your life you have been a different person tainted with the different colors of that day. Each time you wake, you are a grey, blank slate ready for the day. Your past selves wake too and follow you in a line in chronological order.
Let’s say you and your past selves get on a yellow bus with mostly blue passengers, but you pass a red building. Suddenly, you collapse backward to the person who saw red in that building on one particular day. Your present day self is gone, and you begin to shake.

This can happen for other memories too – perhaps autumn leaves make you see green, and you acquire green for that day and all your past selves with green autumn leaves collapse backwards and you collectively enjoy the leaves together.

See, I always thought people were always more than just who they are when you meet them or greet them for the day. They are moments upon moments of themselves. This is how I’ve tried explaining PTSD to my husband. I think it’s working.

Do you have any PTSD metaphors?

Taking Back Your Power Before Power Takes You

I notice a trend in my life, in other blogger’s lives, and in human beings in general. It’s of helplessness and hopelessness: being a victim of who you are and your circumstances.

I created this blog to take the stones thrown at me by life and create a castle out of them. For now, it’s what serves me – telling my story not to inspire others, but so that others in similar situations don’t feel so alone, that they may find strength in solidarity.

Oftentimes in the chronically ill community it is said that you have to cut out negativity in your life, and this includes friends. I recently did this with a particularly demeaning and diminutive friend.

She had always struck me as a snaggle-toothed, mousy girl who was kind-hearted but self-absorbed. Day and night she would text me her problems, but didn’t have time for mine. She belittled my diagnoses and insulted my wedding dress.

Eventually she turned out to be racist, sexist, and homophobic. This led me to the ethical questions of being so close to her. Was it wise to be associated with someone who thought such hateful thoughts and assumed they were mine as well when I couldn’t be more different? Is it okay to let yourself be friends with people who are so prejudiced? Does that mean you condone that line of thinking?

Ultimately, a racist statement and her general selfish mannerisms led me to cut ties.

She lived her life thinking she was a victim – always a problem, never having the power to solve it. While demeaning socialism she was a job hopper on minimum wages living with her parents and had a bachelor’s degree from a supposedly reputable private school.

Everything always happened to her. This was how she went from being a newspaper journalist to working at a Goodwill. She didn’t take back her power before power took her.

As for me, I admit I fall into the power trap as we all do at times. Sometimes I curse my pain and how I have no control. We may not have a say in the hands we’re dealt, but we can learn how to play them.