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

Why Body Positivity is So Hard For Chronically Ill Women

I had my first EMDR session yesterday, and it went… badly.

In EMDR one of the first things you do is create a safe space for yourself, and I could not visualize myself as I am in that space. I kept seeing the old me, the beautiful former model me, and I began to sob.

As someone who attempts to champion body positivity and beauty is every-ability, I was ashamed at my reaction. I knew that my issues ran deep, but I didn’t know they were this invasive. I saw the girl who I once was in my head and longed to be her. I felt that she as lightyears away, a completely different person from me, and this person existed only a year ago.

Grieved by the fact that I was two different people in such a short amount of time, the tears came. Pain shot up my esophagus, and my shoulders ached.

What’s important to remember is that I am a completely gorgeous, unknown sized, purple haired, green eyed vixen with glittery pink catseye glasses. My double chin? That is fucking gorgeous y’all. My acne? Sexy as hell. My swollen hands and legs? Hot, even if it is part of my disease.

My therapist taught me the Vegas Nerve Stimulator for times of distress, and I must say, it works. She instructed me to put my thumb on my clavicle and my other thumb below my rib cage, and silently repeat to myself “I am a beautiful human being.” I almost believed it, which was better than being in the negative hit points.

I am sexy as hell, and I believe it.

So, why did I have this problem? Why do so many women who go through life altering events, and body altering events, have this problem?

As women we are taught we are our bodies, and that our bodies do not belong to us. Someone else gets to decide if we are sexy as hell, not us. And if that is decided, they have the opportunity and the right to act upon their urges.

But at the same time, beauty is a sacred thing, like art. I believe all life is a form of art, which is a reason why I enjoy painting and drawing nature. There is inherent divinity, and therefore beauty and light, everywhere and in everyone.

When a woman becomes sick, it’s as if that divinity and light is becoming assaulted, because society says sick isn’t beautiful. But real beauty is still there. No other person can negate her divinity and inner light, even if she becomes bitter.

I’m here to tell you to all my ladies down with the sickness, you never lost your beauty.
Now I’m reminded of the Alanis Morissette song that goes, “I’m sick but I’m pretty, BABY, and what it all goes down to my friends, is that everyone’s gonna be QUITE ALL RIGHT!”

My fellow gals, you are sick and you’re pretty, you are beautiful and divine, own that acne, own that messy hair, YOU ARE SEXY AS HELL.

List of all the ways I’ve been loved TODAY

When a person comes around to recognize their blessings, they need to record them. It’s like taking photographs of favorite destinations, making a collage, and displaying it teenager-style like your soul anthem on your bedroom wall. There, your memories wait for you each time you go to sleep.

I’ve been suffering on multiple fronts lately and I want to acknowledge the ways people have loved me TODAY, even if it was part of their job description:

  • The librarian who showed me Convenience Store Woman, recommended it to me, and had a conversation about it with me after she noted how much I read in a short amount of time. Thank you for your book love that is a part of your job description but still needed.
  • Sayaka Murata, for writing Convenience Store Woman, so that I could find it today and laugh my ass off when I asked the librarian for the happiest book in the library
  • Bear, for buying me books, queso, and enchiladas. Money can’t buy you love but they can buy you comfort. Thank you for loving me in this dimension today.
  • Bear, who shows genuine love and concern by answering all of my phone calls at work despite our current living situation, who truly does care, and won’t let me forget it. Thank you for loving me genuinely and unconditionally.
  • Bear’s friend, who was asked by Bear to check up on me, and did even though she didn’t have to. Thank you for being a friend of Bear and consequently, of mine, even if you may have gotten more than you bargained for.
  • My friends, for periodically checking on me, texting and calling throughout my day.
  • Random person on roll20 who noticed my distress at being unable to dungeon my dragons, thanks for reaching out to a freaked out person going through a DBT skills breakdown.
  • Mom, for driving me to DBT and the library because the doctors say I can’t drive right now.
  • Mom and dad, for driving me to meet Bear tonight for our date.
  • Dad, for trying to fix the record player so I could experience vinyl and not rely on digital technology to listen to music.
  • Indoor plumbing, for giving me a hot shower and a soaking bath. You do you man!
  • Me, for taking time out of my day to try to learn some new ukulele songs, devote time to music when I haven’t in years, and feed my brain. Learning to love you too boo.

Feel free to share ways that you felt loved TODAY in the comments! I would love to feel the love, and I’m sure you would too!

Reflection

I follow the Memes for Jesus page. One time I actually messaged them and got no response.

Recently I thought of a meme about PKs, or preachers kids. Often times in the comments of the Instagram page people seem to have the idea that the PK does whatever they want. That wasn’t my experience.

My idea was that PKs on the inside were the song Reflection from Mulan. In the song, Mulan expresses sadness and anxiety for perceiving to not live up to her family’s expectations. Generally all PKs I know are balls of perfectionism and anxiety, whether they end up functional or heroin addicts, Christian or otherwise. This is a mix of expectations from their parents congregation and expectations of their parents to be perfect examples of Jesus to the community.

I still grapple much with my upbringing and my faith. There’s a lot I wish were different, but you do the best you can with what you have.

Sometimes all you have is six chords and the truth or a bible and your tears, and that’s enough.

Whatever enough for you is, know that you are worthy, no matter who your mother or your daddy was.

The choices we make

Throughout history, different people have come up with numerous ways to determine how to define a human being, or rather, a person’s worth.

The most common in the west is money, that ones value is determined by what a person gives to the economy. I tried so hard to give to the blessed mother economy that has given me so much. Say what you want but in the end I was its slave. A marker of adulthood is being a willing one, and I was, but I had fallen down and was thrown to the side with the chaff.

Worse of all, I am now applying for disability. I am asking money from the government, an act considered so heinous by many people I know I don’t deserve the donated clothes on my back.

Many conservative people will tell you a woman belongs with a man. I will not disclose why but I have decided my husband and I cannot do this marriage journey in our short time together. This will bring me shame from my surrounding conservative community.

Oftentimes when I volunteered to cook at funerals people would ask when I was going to get a man because my food was so good. It took me six years to find one, but it turned out to be a bad love.

At first I thought I would be relieved, but then the tears started coming every day. I’ve been listening to “The Redheaded Stranger” album by Willie Nelson on repeat the past two days.

I am afraid I will lose my sense of personhood through all of these losses, but I am doing what I can do hold on to Christ and what he says, that I am God’s child and his princess. I am royalty, even if the world says otherwise. No one can take my crown. If it needs adjusting then I do and keep marching on.

Does this all go down to the choices we make consciously?

Could I have foreseen being rejected by a dollar, or what was to go down with my husband?

I don’t know if I could have at all. But there were points where I could have demanded more or walked out. And I did try that, to no avail.

You end up where you are and there’s no use reminiscing. You straighten your crown and march on.

That’s a crown from God that no illness or man can take away, ladies and gents, and it’s on your head whether you believe in it or not.

Dinky little word castle

There are days when I feel things more than most. When everything seems more pronounced. Sometimes, I can’t pinpoint the reason. Today the reason was obvious: either this new steroid pack works on my mysterious “autoimmune problem that [I] have” or I get an injection with a 20mm needle into my right hand.

This was daunting for several reasons. One of them was that many parts of my body are ridiculously swollen, and a giant needle going into each of them seemed insane. Another was, “What is my autoimmune problem exactly?” Then there was, “I’m only 27. This can’t be Rheumatoid Arthritis. That’s what my 61 year old mother has. Even if I have something like lupus that younger people tend to have, that’s still terrible!”

So, today I am feeling everything, from my eyes catching pollen to my fingers aching as I type this. My toes ache in my shoes from their own swelling. My brain aches from tender thoughts, hurtful thoughts, mournful thoughts.

But then there is this recurring thought that is oddly grateful for the suffering I have endured.

If my mind wasn’t set on fire from the medical catastrophes I endured over the past 3 years, I would not have any of the material to write from that allowed me to become a published writer on the Mighty, and soon to be on Offbeat Bride.

These stones thrown at me by life have allowed me to build a dinky little weird word castle and enabled me to culture a strange confidence.

I may have been forced to take medical leave on my master’s program, but I am going to dedicate time to writing. I will continue to publish, and I will dedicate headspace to my memoir.

Now is the time to read all those books on my shelf, live at the library, and try to heal through the written word.

I can do it because I’ve been doing it.

Graduate School Tubthumping – I Get Knocked Down, But I Get Up Again

When I was a little girl, I dreamed of having a Ph.D. in English. This past year part of that dream came true as I began my degree in Technical Communication in the department of English at my local university.

My degree program quickly became my happy part of my day, and consequently, my year. As my body deteriorated my brain was polished squeaky clean and I was learning. I earned As in my classes and for the first time in forever, I felt like I had something to show for myself.

I have always been a nerd and the bookish schoolgirl. Academia was the goal and I knew this was where I belonged, what I was meant to do.

However, my body was a medical mystery. Doctors became more perplexed as time went by over winter break and I was bed bound or horizontal couch bound most of the time after my honeymoon. Most of my writing on this blog was done on my smartphone because I can’t sit upright in a chair for more than 30 minutes.

Can you see where I’m going?

School started, and I had a 3 hour long debate and lecture class. Not to mention my incompletes I needed to make up, and a 3 hour long lecture class every morning, four days a week. I was in too much pain. I couldn’t work on anything. I would go to class and not say a word, giving me a zero in the class for that day despite doing all the reading.

Distressed, I forlornly considered withdrawing. It seemed like the world came up to swallow me. Before I did, I called my academic advisor who was sympathetic to the fact that I had a problem sitting upright. (I often excused myself and laid down somewhere for 30 minutes.) She guided me in how to take a medical leave of absence and that my incompletes could be turned to W’s with her help with a doctor’s note.

I am extremely thankful for her kindness and willingness to help me.

Through being open about my struggles, I was able to get help. And I’m down, but not out. As the wise Chumbawamba say, “I get knocked down, but I get up again.”

Recording the Moment

When you feel happiness, it’s just as important to write it down as sadness.

Sometimes we’re all too tempted to stand out in the rain and put it down as inkblots on a page than let the sunlight bathe our journals in warmth.

Life as newlyweds has been uncharacteristically hard for Bear and I. We have both been grieving my illnesses. It can be hard to forget that my sickness is just as hard as him as it is on me. But Bear is a strong and mighty bear, and he fights for me. He may not fight in all the ways I thought he would, but he does so much more than I expected.

In the morning before I wake up, he kisses me. While my hair is still crazy and he changes out the coffee filter for me as I’m standing in my completely unsexy pajamas half awake, he worships me. From my head to my toes he caresses me, telling me how beautiful I am, how smart I am – this translates to me, how worthy I am to be on this planet even though I can’t do all those wife things and we’ve only just started. In the corner of my eye I notice a dozen of red roses, one of my favorite flowers, on the kitchen table he bought for me last week.

There’s a bag of oatmeal in a recyclable bag on our white Formica countertop in our lovely sea-foam green newlywed kitchen he claims he bought for me but he picked out himself. The large bay windows over the breakfast table bathe us in pure morning light as we flirt with each other.

Moments like these make me realize that life may be full of pain and anger, but it’s also full of love and hidden rainbows at 7am. If I’m going to live fully, not just survive, I need to continually take mental photographs.