Why I Take Selfies

Today, I had to take steroids. For the third time this week I ended up walking around the house using my wedding cane. It was terrible but the steroids helped and I’m keeping my legs elevated.

Another thing about today and the other days of the week I’ve used a mobility aid, whether I’ve left the house or not, I’ve done a full hair and makeup getup, and worn a pretty dress. Yesterday I tried the Pinterest listerine pedicure, which exfoliated my feet but turned them blue, and painted my nails red. I’ll probably stick to Korean feet masks.

Every time I make myself pretty, I take a selfie because of all the extra effort that went into it, especially if it was on a bad day. I am proud of the work it took to doll myself up, whether it’s a pedicure, skincare, an outfit, my hair, my makeup, or a mix.

Going back to being a child, I have found strength in my femininity. Many people denounce selfies as vain, but after my illness, it’s simply me saying, “hey, I did it!”

I’m not looking for attention or accolades. Just the fact that I did it for myself and have something to look back on is enough to help me fight my battle against chronic illness.

Do I always do this? No. But it helps when I do.

Whatever helps you take a step forward, do it.

Wedding Planning for Spoonies: Inspiration & tips for the chronically ill and disabled

My wedding planning book is going through a few iterations right now. I hope to still work with my editor after doing something really really stupid (in a pain flare I should never email people at night). The plan is to focus on mobility aid users and the chronically ill. It casts a wide net. There are many conditions specifically included, but a few from the categories can be chosen to apply to someone whose condition is not specifically listed.

I’m a bit nervous about the rewrite as it’s a blow to my ego, but I have to remember the point is to help people.

I do think this book could be a game changer if I work hard enough on it.

I’d also appreciate comments on whether or not excluding sight and hearing still makes the book marketable, and how much you like the new title.

If you’re interested in helping, email me at spoonielifestyle@gmail.com.

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.

Writer’s Block and Chronic Pain

For the past three weeks, I have been writing and revising a book. During this time the book was all I cared about. I didn’t eat or sleep – I could even ignore pain. Did I hurt like hell? Yes I did. But I put in 12 hour days working on my book in search of the holy grail of literary perfection.

I even hired an editor, who I start with in a week or so. But now the creative flow has ended, and my pain has hit me like a drunken bus driver with a load full of bricks. The stop sign was open, but he kept on driving straight into my measly Honda.

OUCH!

There’s nerves about the book. This time around I’m seeking to be professionally published. I want to know I can do it and there’s no guarantees. This is the bus full of bricks.

I also want my medical leave to be successful and I can go back to school when it’s appropriate – that is, when I have more answers and can manage my pain better – and also write this book to its polished shininess. AAAND this is the bus full of bricks slamming my Honda.

But if there’s one thing Disney movies have taught me is I can have it all, I just have to align the pieces in the balance of life. I don’t doubt Disney, y’all.

Preliminary Ebook Covers

Those who have been on this blog for any amount of time know that I suffer from PTSD. I also believe that it is the root cause of my chronic pain.

There is a lot of evidence that if one has untreated trauma, it explodes into fibromyalgia, and later other diseases. The therapist I work with now specializes in people with chronic pain and their trauma. I am blessed to have found her.

The year following my trauma I began writing poems. I have written poems since 2013 up until today. When I was in DBT I made a writer acquaintance who shared her writing resources, one of which was Scrivener. I got into the program and wanted to see how easy it was to publish on Kindle Direct Publishing (KDP).

It was very easy, however, there were some blunders. I will need to get better and this poetry book is my guinea pig book. Printed in a PDF it’s about 72 pages. I’m still figuring out how to create a print book through KDP.

Anyways, my poetry book It’s Okay, Magic Happens is on the Kindle store. I’m only not linking to it yet because I’m still trying to figure out cover art.

The magical cover
The blue Cover
The glitter cover
The flowers cover

Comment/tweet/contact me with your favorite cover (tell me magical, blue, glitter, or flowers) so I know which one to use.

Thank you so much and I hope you have a wonderful quarantine.

Fibromyalgia Comfort Wear Wardrobe

Disclosure: Bear in mind that some of the links in this post are affiliate links and if you go through them to make a purchase I will earn a commission. Keep in mind that I link these companies and their products because of their quality and not because of the commission I receive from your purchases. The decision is yours, and whether or not you decide to buy something is completely up to you.

If you’re anything like me, not long after you were diagnosed with fibromyalgia, you searched for answers. From everything from diet to treatment, to bras to footwear. You soon discovered that your body was ultra-sensitive to fabrics and you’ve probably ditched a bra by this point. I’m here to share some Holy Grail products of mine that I’ve found work like a charm.

The products below are enough to give you an entire wardrobe of comfort – I even included a bra! All of the items included come in multiple colors and patterns, so you can order multiple and mix and match for instant Spoonie Style, my Fibromyalgia Fashionistas.

1.Old Navy Jersey Knit Swing Dress for Women

This essential T-Shirt dress comes in 10 different patterns and colors. When I was first diagnosed with fibromyalgia, my mom took me to Old Navy and gifted me 3. I later thrifted 1. These are comfortable enough to wear without a bra. This is my favorite Fibromyalgia Fashionista find on this list.

My Pick: Old Navy Jersey Swing Dress for Women

2. Old Navy High-Waisted Leggings 2-Pack for Women

These are my favorite pair of leggings – a pack of one black and one gray, and there’s a plus size version too! My weight fluctuates with fibromyalgia and I am bottom heavy, so finding leggings to keep up is difficult. I find these are the Elastigirl of leggings at a great price.

My Picks: Old Navy High-Waisted Leggings 2-Pack for Women

3. Juniors’ Joe B Paperbag Waist Wide Leg Pants

Now I will admit, these Paperbag Waist Wide Leg pants aren’t for everyone, but they will snazz up an outfit. These are for real Fashionista Spoonies looking for Spoonie Style! They’re fresh, they’re funky, and they’re soft as yoga pants with more breathing room and style. The Paperpag pants come in multiple colors and patterns from Kohls.

My Pick: Juniors’ Joe B Paperbag Waist Wide Leg Pants

4.Amazon Brand Daily Ritual Women’s Jersey Short Sleeve Open Crewneck Tunic

This soft tunic available in multiple colors is long enough to be a dress on some people – if you’re under 5’4″ – but makes an extremely comfortable shirt. Comfort like this is perfect for Fibromyalgia Fashionistas. Nothing scratches against your chest and it makes excellent street clothes or pajamas.

My Pick: Amazon Brand Daily Ritual Women’s Jersey Short Sleeve Open Crewneck Tunic

5. The Genie Bra 3 Pack

For those of you with fibromyalgia who cannot go without a bra, this is for you. The Genie Bra is comfortable, breathable, and supportive. However, use the sizing chart and order one size up as it runs small in the band, which is a no-no for costochrondritis and rib cage pain. As long as you order one size up, you will have perfect Fibromyalgia Fashionista comfort. The Genie Bra is a type of sports bra and you will have to pull it over your head, which I can still do. Unlike many sports bras, it is a low V-neck, making wearing low-cut shirts possible. Look out for a full review from me on the Genie Bra soon.

My Pick: The Genie Bra 3 Pack

On Footwear

Your mileage may vary depending on what your symptoms are. If your fibromyalgia involves swelling like me, you may find yourself living in boots all of the time. I always wear high quality Chelsea boots, right now my brand of choice is Franco Sarto. Others have fallen arches and must wear orthotic shoes – I used to do this until my feet became too swollen.

For most Spoonie Fashionistas, I would recommend something soft with arch support, like a running shoe specifically fitted to your foot at a running store, or high quality boots that are expensive. Spend at least 30 minutes in the store trying on the boots. The boots should have a low heel, low height and have a zipper. If you’re in Texas, cowboy boots could work fine – take it from a Texan. However, your leg could get stuck in the boot if you swell while wearing the cowboy boots.

Mix and Match to Build Your Wardrobe

Have some cardigans laying around pre-chronic illness? Pair it with a tunic and some leggings for some cute laid back street style. Add a beanie or beret for some artistry.

Pair the tunic of a corresponding color with the Paperbag pants for an instant Fibromyalgia Fashionista “wow!”

The little knit dresses go with everything, especially the solid color ones, so have fun with those, Spoonie Styler!

Taking Care of Yourself With Chronic Illness

Every once in a while, a well-intentioned family member, a friend, or a medical professional will tell me I’m not fighting hard enough, that I’m not taking care of myself, et cetera.
The opposite used to be true – I would receive compliments from my doctors for the presentations I would make each time I came in. One nurse said she could tell I was not succumbing, and complimented me for my strength, saying this was why she wanted to help me.

There’s a few things I want to say here. First, all people with chronic illnesses deserve help and respect, whether you perceive them to be weak or strong. Secondly, when it comes to battles, you win some and you lose some. Wars fluctuate, and health is a journey – it isn’t linear. When I was first diagnosed with fibromyalgia, I was exercising at least an hour a day, every day, sometimes two hours, and had a strict vegan diet. Then winter came with worse symptoms and I was planning a wedding with in-laws I had issues with. My mental health was in the toilet, and as Bruce Lee wisely said, “The body follows the mind.”

My mind worsened as my PTSD triggered and my marriage fell apart before it really even began. Again, the body follows the mind, and I got knocked off of my pursuit of physical health horse in pursuit of improving my mental health and my marriage. Once again reiterating, the body follows the mind.

This is not to give a laundry list of excuses. I merely want to extrapolate a bit that the body and mind are connected, and if the mind suffers, the body usually does too. I’m in more stress than I ever have in my life. My fibromyalgia is kicking it in to high gear.

So yes, I may not be taking as good care of my self physically right now, but I am trying to invest in my mind to get to that point. The only way out of hell is through. A marriage being under the gun takes precedence over buying organic food, especially if you can’t afford it and the two of you are $3k over in medical bills. Could the organic food prevent the medical bills? Possibly. Could a gym membership? Possibly.

This is the crux of it: health being accessible and affordable. Many low income Americans suffer the most from health maladies because they can’t afford preventative care and the care they need from not being able to take care of themselves.

My husband and I aren’t low income, but the two of us on one salary with all of my exorbitant medical bills puts us in a bind.

And I am fighting in other ways – I still stay organized with my symptoms, I’m still productive, and I annoy my doctors if I think something is wrong. I read literature on health subjects. I hope to have a book review or two coming out soon.

Please remember that when people say these things to you, they’re probably trying to be helpful. No one can truly understand anyone else. Take heart.

2am Pain Flare Prayer Time Reflections

Crown of thorns with text “Exploring faith and pain”

Very often I wake up at 2am in intense pain. The pain continues until sunrise; I’m unable to fall back asleep. I do many things while the pain has set on. Mainly I read, write, and design. My largest comfort by far is prayer and some light Bible reading.

I wrote a piece for the Mighty entitled How My Faith Gives Me Comfort and Companionship With Chronic Illness about this phenomenon, how I read through the Gospels aloud and cry, knowing the Savior himself also had chronic pain for his last time on Earth. We serve a God who was disabled in the flesh for a time as a human being, yet was still perfect. I can’t think of a greater comfort.

Tonight I started out by thanking God for the gift of his son Jesus, for giving me someone I could always relate to. Someone who could show me I did not have to strive to be accepted, to be loved, to love myself back, even in the midst of all this pain I was in in the middle of a world that did not understand me.

Perhaps this is something of what it means in John 1 where it is written: “The Light shines in the darkness, but the darkness has not understood it.”

Possibly very obviously so, as no one understood Jesus and he understood what was in a person, so he understands us when no one understands us.

As I contemplate these things after my prayer of thanksgiving for the Christ and the intricacies of my husband, I felt the pain lift a little after a while. Miraculous healing or redirecting of the mind? Probably both. God gives us peace and hope when we focus on Him.

Peace be with you,

M. O’Shea

How to Feel Gorgeous on a Bad Pain Day

Bring the spa to you on a bad pain day when you have chronic illness!
Disclosure: Bear in mind that some of the links in this post are affiliate links and if you go through them to make a purchase I will earn a commission. Keep in mind that I link these companies and their products because of their quality and not because of the commission I receive from your purchases. The decision is yours, and whether or not you decide to buy something is completely up to you.

I’m a big believer that you should feel fabulous all the time, even if you don’t think you look it or feel it. As someone with a chronic illness, particularly a stigmatized chronic illness like fibromyalgia, this can be hard. A large obstacle to me feeling like I’m gorgeous or believing I’m fabulous is when my pain levels are high. Nothing can make me hate myself more when my body leads me to believe it hates me – even though from a logical standpoint, I know it doesn’t.

Removing myself from my chronic pain is impossible on bad pain days, nor should I do so completely. But there is a way to be friends with yourself and your body to feel gorgeous on a bad pain day with chronic illness.

Listen to a lighthearted audiobook

I especially enjoy Rainbow Rowell’s audiobooks, and right now a favorite is Eleanor & Park. A good, girly audiobook to transform me into the Chronic Illness Warrior Princess of my dreams is just what I need to feel gorgeous on a bad pain day.

Bestsellers to help you build your reading list.

Soft, fabulous blankets

Help your body feel gorgeous with luxury fabrics in – and this is important – your favorite colors! Looking at your favorite colors will remind your mind of pleasant things, and the wholesome, needed comfort of the blankets will bring your body back to a sateen Earth, where you are queen of your own world. A mind-body tactile connection is perfect for conquering all kinds of chronic illnesses and the pain that comes with them.

Stick-on nails

I’m the kind of girl who has to have her nails done, but was a budget bride and is a thrifty wife short on cash. Any day of the week can be manicure day with imPRESS Stick-On Nails available on Amazon or at your local drug store. Even on my worst chronic pain days, with swollen hands, I can maneuver these easy to use press-on nails for a glamorous from the spa manicure. (They’re better than the spa manicures I’ve gotten, honestly.) If one falls off, simply pick it up and gently press back on.

Scented Lotion

Lotion is one of the many ways I cope with chronic pain and anxiety. I’m a big believer in aromatherapy, which will be outlined further below. My holy grail lotion is Dream Cream from Lush. It’s lightly scented with rose water and is a cult favorite for those with eczema and psoriasis. The lotion is extremely decadent and creamy, making you feel as if you deserve this luscious treatment. You do, my fellow Chronic Illness Warrior Queen! This is an excellent, simple way to feel gorgeous on a bad pain day.

Bring the spa home with these skin care products.

Candles

Bring the outside in or travel to exotic destinations with your candle scents of choice, or if you are sensitive to smells, simply watch a flickering flame. When my chronic illness keeps me from traveling I love to imagine a high desert sky with a tuberose scent or trekking across Morocco with sandalwood. Please note that like unscented candles, there are also unscented lotions to help you feel safe from migraines and luxurious.

Create Your Own Story

If you absolutely can’t move or get out of bed because of a flare from your chronic illness, record a video of yourself telling a story about your day from your imagination. Perhaps you are an enchanted knight, a princess in disguise, or a fairy queen out for revenge. Or maybe you’re just out for morning coffee. Make it as simple or grandiose as you want. Maybe just vent! Be your own best friend. It can be lonely trapped inside because of fibromyalgia, lupus, rheumatoid arthritis, or any other chronic illness imaginable.

Remember, it’s just one day.

No matter how long you’ve been in a chronic pain flare, don’t let your mind extend the pain into tomorrow. We only ever have now. Feel what you feel now, and honor yourself by saying, “I’m in pain, and I can handle this,” or if you can’t believe that, try “I’m in pain, and I am not alone.”

My Chronic Illness Warrior Queens, we are never alone when we have bad pain days. We find fabulousness in ourselves and in each other.

Remember you’re gorgeous,

M. O’Shea