It’s almost a month left until my wonderful, creekside spoonie wedding, and I’m left with some thoughts.
Communication is hard. Love is hard. It can be scary. Love is a literal battlefield, but as long as you and your partner are on the same team fighting for each other, it’s worth it.
To take someone as they are every day is a blessing and a challenge. My fiancé has Aspergers and cannot smile on command, as seen in the photos. He can smile in real life. When these photos were taken a few months ago, he was coming down with shingles and feeling sick.
He tried his best to smile. The next day when the shingles appeared I drove him to the doctor despite my own illness showing up and not being able to drive very well. But I cherish these precious photos – the colors, the lights, the way we accidentally matched.
I ordered my engagement photos dress from Chic Wish, which I was initially afraid was a scam. But the dress came in, and it fit! It was the most unique thing I had ever seen, and matched my fiancé’s seersucker and khaki ensemble. Plus it made me feel beautiful.
It can be hard to feel beautiful in my new body. I looked through my old photos of selfies over the years and I looked at my model days. I look sicker than I do now – face all hollowed out, giant under eye bags.
And with that, a recap:
Pocket full of starlight: loving yourself and someone else is worth it though not mutually exclusive.
Pocket full of darkness: all the things they tell you about love aren’t really true. The truth you find comes for your own self.
Work is therapy for me. Or rather, graduate school is. I wake up around 4am to 5am and throw myself into a school project. School projects are generally more relaxing than wedding planning crap because those are stressful as hell and I never wanted the big formal wedding I’m going to have. The man, yes. The hundreds of people and logistics? No. I am bad at logistics.
However I love creating. Whether it’s a piece of writing, a new website I’m building, or some new graphics (from looking at this website I’m sure you all know I’m not good at that) but I like taking a stab at it and making something from nothing.
In my foundations class in graduate school the point is to teach ourselves a technology. In 2011 I built my parents’ church their first website. As a kid I learned creative technology for fun. I know, nerd alert! But I fell into a deep depression and lost all of my knowledge of photoshop, HTML, and CSS. So I’m taking it all back. It’s been a fun, rewarding process.
The biggest part of work therapy is that it gives me a sense of accomplishment. I’ve been unemployed for over a year now. It left me with a great sense of unaccomplishment and lack of pride. However getting back into virtual, computer work – I know for sure I can work from home as long as I’ve got an internet connection. This gives me hope.
So, a recap:
Pocket full of starlight: when life gives you lemons, make a website about lemonade.
Pocket full of darkness: when life gives you lemons, it’s okay to make a website about lemons too.
After pushing myself hard last week, I found myself in a fibromyalgia
pain flare. Thankfully it lasted about 6 hours instead of a few days, at least
that I can tell. Fibromyalgia is pesky in that it’s nearly impossible to tell
how it will jump ya.
My fiancé and I were checking on our new house, which is undergoing renovations. We hired a contractor from my hometown to replace the carpet with tile floors. No way were we renovating ourselves with my fibromyalgia! By mistake one of the workers busted out the fireplace. Fiancé and I took this as a great opportunity to replace the builder grade tile that was there with mock marble. We will have a very classy house by the time renovations are done.
When we arrived at our house, we could tell that the garage door
was broken, and the vent above the garage that leads to the attic was knocked
out. My fibromyalgia pain level was manageable, but I was freaked out – had someone
broken in? Our packing boxes were inside.
After going inside and finding the packaging intact, my fiancé
climbed into the attic and nearly fell through the ceiling into the garage. I
about died. My dad was about to go up there after him. My friend had come over
with us to see the house expecting the renovations to be done, so we took her
car to go to the nearest grocery store to buy duct tape so my fiancé could duct
tape the vent back to the attic. I quickly developed fibro fog, so it took a
while to find the duct tape even though the grocery store was less than 5
minutes from our house and about a block away.
Once we got back with the tape, I sunk into the couch with
my friend. I hadn’t noticed it, but my fibromyalgia pain had crept up during
the car ride over to the house. Currently my fiancé and I live in separate
cities – when my fibromyalgia pain became severe, I left my apartment in the
city and stayed with my parents. My father is a minister and very old school. Despite
my fiancé and I being engaged with my father’s approval, he insisted that we
not live together. My fiancé, the sweetheart (sometime too much) that he is,
respected my father’s wishes as he wanted no bad blood. He is, after all, paying
for the wedding.
Which brings me to another point. The wedding.
My fiancé helped me off the couch after he and my dad worked
on the house for a few hours. On the car ride home, my fibromyalgia pain was so
severe that I had to lean the car seat all the way back. The town I’m living in
is 45 minutes from my new house. It’s a doozy with fibromyalgia pain.
During the last year, my fibromyalgia has taken from me something
I never thought I had: my beauty.
I had once been a model for a photography class and a size 0
for all of my life until this past year, due to fibromyalgia and fibromyalgia
medications. As I am a lady I will not disclose my size. Once I searched for
plus size wedding dresses on Pinterest, only to find trolls commenting on beautiful
women saying they were stuffed sausages, or too well fed, or that they ate too
much. As someone who went from a size 0 to a size whatever, I can say it was
not because I stuffed myself because I felt like it. My precious metabolism disappeared
and the fibromyalgia drugs packed the weight on. And can all of us with
fibromyalgia say pain eating is real?
But even when I was the social norm for beautiful, I never
felt beautiful. I feel wretched looking back on how I didn’t love myself as a
model, didn’t love myself as an Audrey Hepburn lookalike…
My biggest fear is that I will look at my wedding photos and
cringe at how I looked. I am afraid of looking the worst I ever looked on the
most important day of my life because of fibromyalgia.
But I know I have to love this body, this painful, plus size,
chronically ill fibromyalgia body. It has carried me through so much. Even
though I wasn’t aware of this before, it has always been there for me. Maybe I
don’t register this, but my body doesn’t want to be sick, it wants to be healthy
too, and it’s in this battle with me. She deserves my love and respect the way
I deserve love and respect, whether I have fibromyalgia, a pain flare, a fit
body, or not. Because we are not our bodies, and that includes me.
So, a recap:
Pocket full of starlight: Your body still loves you, even if
you hurt. It doesn’t want to hurt you, it hurts too.
Pocket full of darkness: You and your body both hurt!
With the winter winds coming into my neighborhood, I was struck by how unpredictable Fibromyalgia can be.
I was diagnosed less than five months ago. In these five months, I’ve discovered that it takes about 5 hours for me to wake up every morning. This is after my daily yoga routine, which I have admittedly neglected. My goal for yoga is 45 minutes, and I usually only do 15. Then I throw myself into a combination of wedding planning, school work, and website management.
The more I work, the better I feel. But around 8pm, I am a raving, ranting, screaming hot mess. I think of myself as a molten lava monster – my pain is in the 6-8 range, and my irritability is at an 11. But I have wonderful Epsom salts, and a 30 minute soak in the tub usually manages things.
Throughout the day, I do have “jumping pains” and “lava snakes.” These unpleasant sensations teleport around my body like an extremely unfair alien in a bad science fiction movie, but as long as my mind and emotions are engaged in an activity, I can cope. At least that is today, and yesterday, and the day before that.
Earlier in my fibromyalgia journey, I was a ten-thousand foot tall volcano every day, all day. My pain was at a 72 but my anger was more like a 7. I’ve often wondered why the irritability still lingers despite my body holding up with the cold weather. Because I’ve generally suffered from Seasonal Affective Disorder, I assumed winter would kill me with fibromyalgia. But the summer months wrecked me fiendishly. I haven’t been bedridden in a month, back when the temperatures were still in the 90s.
Someone explained to me about living with chronic pain, is even when you find relief and things get better, it’s like living with a horrible person. You know anytime they could come home and ruin things, so you’re constantly on edge.
As I’ve suffered through this grieving process of dealing with chronic pain, it’s nice to know that for once, some of my emotions are justified. Validation is a good word to use here. I find validation in other people with chronic pain, and in my family who deal with the sick, grieving, and disabled.
Pocket full of starlight: I’m not alone, and neither are you, whether you’re in pain or sparkles.
Pocket full of darkness: sparkles are generally not biodegradable and they can stab you in the eye unpredictably if you don’t have the cosmetic grade kind, like fibromyalgia.
There is an old Final Fantasy meme that comes from a translation error. In every Final Fantasy game, a character uses the insult, “You spoony bard!” The internet took off running with it, and so did my fiance when I was first diagnosed with Fibromyalgia in August 2019.
I was suffering for months and losing hope. Once, in one of our stay-in dates, we talked about what we would do if we could design a videogame. I suggested we create one about a girl whose power was music. In the beginning of the game, she loses her powers, but not her voice. The goal of the game is for her to take down an evil ogre and receive her powers back.
When I was diagnosed, my fiance suggested I start a blog called “The Spoonie Bard” to cheer myself up. When I asked why, he showed me the Final Fantasy meme on Know Your Meme.
Christine Miserandino’s famous “Spoon Theory” essay, in which Christine, diagnosed with Lupus, teaches her friend about life with a chronic illness using spoons at a restaurant. The friend was given twelve spoons, and for each action a spoon is taken away. It’s an excellent illustration for those recently diagnosed who wish to explain their new predicaments to their loved ones.
The Spoon Theory is where the term “spoonie” comes from. Spoonie refers to a person with a chronic illness. So my fiance, upon learning about the Spoon Theory from Jenny Lawson’s funny books, applied the meme to my situation – the falling star he had put in his pocket was applied to my starless night.
So, welcome to my blog, where I, the Spoonie Bard, offer you my pocket full of starlight, and all of its darkness too. Because let’s face it, chronic illness is hard.