Keep Fishin’

Usually, no matter how bad my pain flare is, I wake up at 5am at the latest, do Tai Chi, have a blog post out by 9:30 edited a few times with a graphic, have eaten breakfast and downed 3 cups of coffee by 10am.

Presently I’ve been in a stress-induced pain flare. The pain has been worse than when I’ve first been diagnosed with fibromyalgia, when I would scream at night, sob while I read the bible, all because of the physical pain I was in. It was a nightmarish experience. Once I started the meds and began to get better, I thought that would never happen again.

The past 3 weeks I’ve had horrible insomnia, which has been a plague for me on and off for about two years. Last night I slept 12 hours.

Normally, this would not be a problem. But I’ve been applying for virtual volunteer positions, and I had an interview at 10am, and woke up at 10:55am.

Well, I may have missed an opportunity to make the world a better place, but my body feels much better and I may actually be able to do Tai Chi today.

What I mean to say is, for anyone else going through this, don’t give up, or as my favorite band Weezer would say, Keep Fishin’:

You’ll never be
A better kind
If you don’t leave
The world behind

Waste my days (Waste my days)
It drowns aways (Drown aways)
It’s just the thought of you
In love with someone else
It breaks my heart, to see you hangin’ from your shelf

You’ll never do
about:blankThe things you want
If you don’t move
And get a job

Waste my days (Waste my days)
It drowns aways (Drown aways)
It’s just the thought of you
In love with someone else
It breaks my heart, to see you hangin’ from your shelf

Oh girl when I’m in love with you (Do wah)
Keep fishin’ if you feel it’s true (Do wah)
There’s nothing much that we can do
To save you from yourself

Waste my days (Waste my days)
It drowns aways (Drowns aways)
It’s just the thought of you
In love with someone else
It breaks my heart to see you hangin’ from your shelf

Oh girl when I’m in love with you (Do wah)
Keep fishin’ if you feel it’s true (Do wah)
There’s nothing much that we can do
To save you from yourself

You’ll never be
A better kind
You’ll never be
A better kind

Waste my days (Ohhh)

Keep fishin’ y’all.

(Yes I know these are super lazy posts but I’m trying to still crank something positive out every day. Wait, that wasn’t a positive statement. It’s okay. I’m doing the best I can, me.)

It’s OK

I wasn’t sure what to write about today.

I woke up at 2:00AM in extreme pain, but that’s okay. It went away eventually and I fell back asleep.

As I erroneously look forward in my life, ever playing the fortune teller, I see black clouds hanging ahead. But I know that this is false thinking, and not what is actually true. Life can be hard sometimes, but it’s our perspectives that make seeing visible. If you purposefully put a towel over your eyes, you cannot see anything in your world. The world is dark and precarious. However, you are responsible for this. You can realize you have something covering your face and take it off, or you can see it in your hands and not put it on.

I juggle with the face-cover, sometimes blinding myself and sometimes enlightening myself within the cycle of minutes throughout the day. And that’s okay.

I’m human. So are you. We all are.

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.

Vegetarian Quorn a la Culinary What?

Behold the cubes

My poor husband has to go back into the office tomorrow. He was worried about what he was going to have for lunch, and I decided I was going to roll up my culinary sleeves and give him the meal of a lifetime.

I grew up eating Chicken Cordon Bleu. My mother made it from scratch. She hand breaded, stuffed, and baked the chicken herself. After discovering Instacart last night, I found Quorn, a vegan chicken-style meat substitute, in cutlets. However in what I would find was typical Instacart fashion these days, they substituted it for cubes of Quorn.

Because of new doctor’s orders, I am now a vegetarian, though I prefer to be a vegan. With this new turn of events I turned to my fridge and found my vegan Chao Greek-Vietnamese cheez. Below it was a small box of mushrooms. In the pantry I had a can of cream of asparagus and some veggie broth.

Hmm, I thought. How can I make a man’s meal out of this without wasting my spoons?

Ingredients

1 small box of mushrooms

2 cloves garlic

1 tsp lemon juice

1 tsp black pepper

3 tsp rosemary

3 tsp paprika

1/4 tsp salt

1 can cream of asparagus

1 package frozen Quorn chicken substitute

1/2 cup veggie broth

Field Roast Chao Cheese Slices – Creamy Original

Directions

  1. In a crock pot, dump the Quorn and place to one side.
  2. Dump the cream of asparagus to one side.
  3. Mix the mushrooms into the cream of asparagus.
  4. Sprinkle the spices over all of the ingredients in the crock pot.
  5. Cover the Quorn with as many Chao slices as you need.
  6. Pour in the veggie broth.
  7. Cook on low for 5 hours.
It was actually delicious, husband loved it.

Please note that this was inspired by my mother’s Chicken Cordon Bleu, and is obviously nowhere near that! As your Quorn cooks, your cheese will melt. The broth is to add flavor and to keep the food from burning.

Enjoy!

Quiet Mornings on the Patio

Yesterday, my family helped my husband and I build a pergola. It’s beautiful, and I only have a few awkward photos, most of which involve the garbage can. It’s red cedar, and small like our little misshapen patch of concrete.

The awkward pic my dad took of the pergola.

My husband labored over the perfect pergola plans for months. I mean months, ever since we bought the house in November. His grand scheme for the yard is finally beginning to come to fruition. I was getting so annoyed with his obsession over the pergola that I would refuse to look at his pergola design books and his drawings. As an engineer, he knew how to build things. And build something, he did!

A few years ago my parents thrifted the patio furniture for my first grown up apartment. It’s a pretty Parisienne set, at least to an American. Bear and I intend to have a Provencal Potager garden. My father lived in France for some time and I always wanted to visit. So Bear is bringing the French countryside to our backyard.

We will have two rose teuteurs (French trellises) in our tiny garden, as well as two raised vegetable beds made out of red cedar fence pickets so I can have easy access to the garden. In the photo you can see the accessible herb garden, and there will be another on the left side past where we are growing a lemon verbena and a moon garden.

Our backyard is the smallest we’ve ever had, but I wanted it that way. I wanted it to be low maintenance, low stress. But my husband is a civil engineer and knows how to plan spaces. I’m pretty excited about the garden. Does that make me old?

Keeping Myself Writing Via Flash Fiction

a dip pen writing in cursive on a lined page, with the text keeping myself writing via flash fiction

As I am awaiting to hear from agents and my freelance editor, I’ve heard the old advice to move on to my next project. But which one? I have half a dozen projects the way I read half a dozen books at once. I wear out easily, and then the soul-consuming anxiety sets in again.

What if I get rejected again? What if this initial contact is all a ruse? What if the direction my editor wants me to go is not what I originally intended?

So, I’ve discovered flash fiction. I know, most of you in the literary world may be rolling your eyes at me, going “How does she not know about flash fiction?” Well, I had my head in the sand for a long time when it came to my natural talents. For example, I made all A’s in my English classes from Kindergarten to Graduate School but never really put much stock in being a writer, excluding my Technical Writing master’s program of course. And when I had a horrible boyfriend tell me I was too fragile for the art world, I gave up my art dreams to be with him. I ended up with PTSD from that relationship and a blackened inside because of that.

Enough about all this emo BS. What is flash fiction?

Flash fiction is fiction under 1000 words. It’s the perfect thing for me to work on for a day or two and then hop on to something else. Right now I’m working on some sci-fi. Only having a 1000 word count makes me feel accomplished once it’s done, and then I polish it up over a day or two while working on another flash fiction project.

If you find yourself stuck in the writing world, I suggest reading about flash fiction and trying your hand at it.

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.

I Got Cinderella’d and It’s Not All Great

My husband and I come from two different worlds. He comes from a different stratosphere than I do. I don’t get along with his family, even before I ran away twice. They mistreated me while we were just dating, and I never really understood why until I looked at class differences and ableism.

I can understand not liking me after what happened in January, but the hate I received before my wedding day didn’t make much sense to me. I was threatened with a letter from a church to stay away from my husband because I was “depressed.” Not to mention all the snide remarks about me being a bed warmer and my husband needing a vasectomy.

Unfortunately most of this was communicated to me through my husband, so it was all secondhand information. But it took me to the point where they have to ask permission to come into my house (which I usually do allow because I was raised to be a hospitable southerner) and I will never, ever voluntarily go into their homes.

In rich families, children are investments. Not in a way that children are investments for the future, but in that they can make money for the family. Who they choose to marry has a direct impact on how much cash the child makes for the family and how much of a financial burden they will be.

I was developing fibromyalgia and lupus symptoms while dating my husband. Most likely I was seen as a money pit. My husband told me his family was afraid I would drag him down.

Let me stop right here with this gosh darn ableism. An able bodied person can drag any slooshin person down. Anybody can drag anybody down. I have some friends I cut out of my life who were nightmares. And dragging someone down is cyclical. I most likely will reintroduce those negative friends again once I feel I can. We’ll start out positive and go back down the negative gravy train eventually, then it’ll get too much. But a marriage is commitment. Part of commitment is saying, “I will love you even when I think you suck.”

People fall down and then they come back up again like a dolphin out of water, complete with sex for pleasure and all.

Rich people tend to hide these basic life lessons from their kids by controlling them with gifts that come with invisible strings only made visible when the kid steps out of line. Basically, rich people scare me.

Mental Health Awareness Month AKA My Life: Why I Am Thankful For Every Night I Spend With My Husband

I suffer from an extreme form of fibromyalgia, which gives me constant pain and even worse pain flares, and post-traumatic stress disorder, which can turn ordinary life experiences into nightmares. Because of this living my life is a bit like Russian roulette: you play your cards but there’s always a price, no matter how they’re dealt. You’re never sure when you’ll get shot, either.

My husband and I have an extra bedroom, and during pain flares I often find myself retreating there to avoid skin-on-skin contact. Even worse is when my PTSD is acting up, or when my pain and PTSD are going bananas at the same time. The spare room is my hidey-hole. It’s right next to my office, and it makes a sort of blanket fort.

After beginning EMDR, my marriage with my husband has significantly improved. The best thing about EMDR for me is the use of imagination to cope with daily life. That’s me in a nutshell. If I feel scared by a loud noise, I can escape to my private worlds and receive comfort instantaneously.

I’ve been in a pain flare for a month, and have spent most of my time in my figurative blanket fort. One time the pain got so bad I started crying. I wanted a friend. Anyone who could acknowledge what I was going through.

I plodded through the house in tears, calling my husband’s name. I knew he was my friend. He was and is my best friend. It was midnight, and I was afraid he would come out of our bedroom in a huffy attitude. But I was met with buttery, gentle sympathy. He caught me in a warm, tender embrace as I cried, and I knew I wasn’t alone in this battle.

“Do you want to spend the night in bed with me tonight?”

I didn’t hesitate.

“Yes. Yes, yes, yes.”

We went off to bed and I slept hard, for the first time in a month. I woke up in time for breakfast with him. My pain flare wasn’t gone, but it had abated a little. But I was happy to see his face next to me in the morning.

Marriage gives you a guardian angel to watch over you, someone to fight with you and for you, and you likewise, when it’s a good one. I just needed to remember to reach out. My husband had been shelved by my physical and mental turmoil, and I merely had to remember he was my friend to find peace and solace.

Spending the night with my husband is not something that happens every night, and I don’t think that’s a doomsday marker for my marriage. It’s not because we fight. It’s not because we don’t love each other. We are learning how to cope with my physical and mental ailments together, and we will spend the night together every night as I improve and we both learn to communicate. I have hope and gratitude for us. This is why I am thankful for every night I spend with my husband.