Beauty can come late

Pink roses with pink text "Beauty can come late"

I have a jar of wilted roses in front of my happy light. It’s a wonder my office doesn’t smell like roasted roses, because the happy light has been on for about 12 hours. By the way, a happy light is artificial sunlight, and if you don’t turn it off after 30 minutes, it can catch fire. Maybe it’s the cold or maybe it’s luck, but my flowers (that I’ve had since August) haven’t caught fire yet. Or my house. It’s all right, it’s all good. Have a good time.

And I think about my roses not catching fire, and what it means from a metaphorical standpoint, because I catch on fire frequently. Right now my shoulders and right knee are on fire. But it’s all right, it’s all good. Have a good time. I guess. As far as mornings go this isn’t too bad even though my dad broke the coffee pot. I guess it’s a penny arcade.

But I guess if you’re a rose, even when you’re really dead, long dead, you’re beautiful. And I think about all the times I’ve felt dead inside for years, such as wasting my childhood and teenage years feeling empty inside – and not in the emotional sense. I couldn’t feel anything. Until I took yoga in college for three semesters, I couldn’t see anything. I wasn’t aware of the world around me. It was like having tunnel vision. What I saw was a laser focused object right in front of me in order for me to move. Other times, when I didn’t have an object, it was all a gray or black blur.

See, the beauty was still there for me, even after I came back to life and gained my vision back. The wilted jar of roses is still beautiful, though not socially acceptable, although my fiancé has not said anything about it.

I’m on The Latest Kate’s emailing list and today’s illustration really struck me. It was a pink dragon (!favorite! thing!) that read “Sometimes all we can focus on is making it through the day. And that is enough.”

Just make it through today and you can still have your unburnt jar of dead roses that are still somehow beautiful, and make it to the next morning to have a pink dragon cheering you on (and a plethora of other blessings).

So, a recap:

Pocket full of starlight: there’s lots of beautiful things to see in this world, even if you arrive late.

Pocket full of darkness: you might set your house on fire in the process.

Fibromyalgia pain and loving yourself

Your fibromyalgia body still loves you. Please love it back.

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!

Looking Back on Fibromyalgia: One Day at a Time

Believe in the sparkles and look at this nice graphic I made of leaves.

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.

Let’s recap:

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.

You Spoonie Bard!

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.