Fighting the She-Wolf: Fibromyalgia Painger Coping Techniques From a Weird Hippie

I had a great day today, filled with productivity, intimacy with my fiancé Bear, a side quest to find cake balls, and the two of us pretty much telling my parents I was moving in. They took it as well as you could expect a preacher and his wife could.

Bear and I celebrated all night long until it was bedtime. I was sure that my alter ego, the She-Wolf, would not appear as I had such a wonderful day. I was wrong.

What is the She-Wolf?

The She-Wolf is an irrational, bitter, negative version of myself that exists around sunset til 12pm the following day. Symptoms of lycanthropy include extreme anxiety, nervous chittering, catastrophizing, only seeing negative outcomes, thinking someone said horrible things, general paranoia and moodiness.

My mother coined the term lycanthropy two days before Bear and I initiated operation secret move out and called me a She-Wolf. As a Technical Writing major I wrote an actual step by step procedure on how Bear could deal with me as a She-Wolf. Becoming a She-Wolf with the onset of fibromyalgia pain worsening in the evening and realizing this made me and Bear realize I needed to book it out of the ‘rents place.

The She-Wolf Does Not Rest

As previously mentioned today was great, and I was not symptomatic at 5:30 as usual. She-Wolf didn’t come barging in until 10:30 and Bear and I were trying to sleep.

In Bear and I’s house we each have separate office spaces. Mine contained a new order of books, one of which was Heal Your Body by Louise Hay. I previously read You Can Heal Your Life by her and thought it was fascinating, a new viewpoint I had never heard before.

Hay’s book contains a diagnostic list of diseases and affirmations to be recited in a mirror. I went through and said anything that applied in the mirror by my desk and I felt She-Wolf backing off. This took about 30 minutes.

Next I brewed some chamomile tea and tried to softly sing a song in our kitchen. I drank it and went through the affirmations again after becoming thoroughly depressed while reading Being Well When We’re Ill by the theologian Marva Dawn. I’m sure I’ll sink my teeth into it later but when the She-Wolf is rising I need something fluffier. I think I need an All the Shit I Am Reading post soon.

Finally, I used my green aventurine stone and did a two minute meditation after playing with my crystals.

I felt safe enough to go back into the bedroom, but the She-Wolf came back after my rib cage cried out upon lying down.

I am back in my office and have just recited the same affirmations from Hay. This seems to be a rinse, lather, repeat thing. At least it keeps my She-Wolf away. But my lack of sleep is here. However, I felt a storm blow in so that may amount to something too.

My Identity Outside Chronic Illness: Simple Vanilla Cake

I’ve begun doing affirmations in the morning and evening. Finally, for the first time in weeks, I was able to do a yoga routine yesterday morning. The happy feelers were abuzz and I knew the sun was shining on me. I was absolutely not going to waste this gift of a day sulking in bed or in my armchair. Today I was going to create.

Today I was going to do something I truly loved.

I have been a vegan for 8 years. During college and my single years I would bake intricate vegan recipes and deliver them to churches and other charitable events. As I baked this cake I planned my married baker gal goals in my new house in my new neighborhood. Before my illness I baked too much to eat everything myself. Recent news of my gallbladder means I really shouldn’t eat much baked goods, so I’m researching organizations in my new area that could use an ever loving Spoonie full.

Without further adieu, may I present the debutante:

Simple Vanilla Vegan Cake

Ingredients

1 1/2 cups all purpose flour

1 cup turbinado

1/2 tsp salt

2 Tbsp rice vinegar

1/2 cup vegetable oil

1 Tbsp vanilla extract

2 Tbsp confectioner’s sugar

Directions

Preheat oven to 350 degrees.

Combine dry ingredients in a bowl and stir in the wet. I used an old hand mixer from the 1950s I picked up at a thrift store.

Pour into a greased 8”x 8” pan and bake for 30 minutes.

Remove and cool for 15 minutes. Sprinkle confectioner’s sugar lightly with a spoon as seen in the picture. Optional: top with blueberries and a mint leaf.

This was adapted from I Can You Can Vegan. I didn’t have all the ingredients, so I improvised. It turned out tasting a little bit like funnel cake. If you have Coco Whip available to you, it could also make a great topping instead of the confectioner’s sugar. The texture was spongy and this would be great piled high with plenty of fruit!

So, my fellow Chronic Illness Warriors, happy baking!

Grace and Gratitude

The Bouquet that started it all.

I never thought I would meet a nice guy. Or a decent guy. A kind guy. Someone who was sweet to his mother and animals. The kind of guy who had interests, passions, and hobbies. A real person that cared about things that mattered, who lived for a cause, and wanted things in the earth to grow.

This is, to many people, the definition of an interesting person. But when my fiancé went out of his way to meet my dog, get to know my roommate, FaceTime my father, all before we became an official couple standing in my doorway with a bouquet of wildflowers, wherein I made the move – I knew he was intentional. Nothing he did was by chance. He saw the world in a grand design of patterns, a graph of charts and maps to set upon to reach a glorious destination. His heart was tender but it’s beat was strong, rhythmic and deep, he was searching for someone with whom it could roam the forests with in the daytime and snuggle up with by the firelight after dark. That heart saw something in mine and it didn’t want to leave.

If I seem like I romanticize him here it is in part true. He deserves it because of what I’ve put him through, and the path that he’s chosen that I’ve so often warned him about: a life married to someone coming to grips with chronic pain.

Very often I flip flop between positivity and deep negativity on this blog. It’s hard to remain objective at age 27, engaged and not used to parts of yourself you didn’t know exist emerging in pain on random days of the week. My fiancé has been a real trooper in that he miraculously understands that when I try to rain on his parade, it’s my physical pain talking. This is why he is my Bear. He is strong and elusive, yet fuzzy, warm and a great comfort.

A few weeks ago I wrote Bear a letter and asked him to put it on the wall, somewhere he could easily see it, in case my pain took over and I didn’t behave how I wanted. In the letter I put a piece of myself that was still gentle and loving and would give him a kiss when he needed it if he would only look at it.

Maybe that’s marriage insurance, but I can only do so much for my dear Bear right now.

To my Bear, I give you all the tenderness in the world and I thank you for sticking by me through all my inexplicable suffering. I’m glad you’re the team optimist. Let’s make it to the wedding day.

Coming Back to Yourself

Since my fibromyalgia diagnosis, many terrible things have happened.

I’ve lost my job, I’ve lost most of my friends, I’ve lost my apartment and two cars. But I’ve found I’ve gained a lot, too.

I may have lost my mind but my heart’s come on pretty strong. The things I’ve loved have never left me. My closest friends are still here, as is my family and fiancé, no matter how many times I go Dr. Jekyll/Mr. Hyde at them.

My dream of going to graduate school came true. I read all the time; it’s my biggest solace. There is yoga every morning, a dog in my lap, a sketchbook on the table, a notebook in my purse, my collection of odd lipstick and my wearable glitter. I have, honestly, gone out in green lipstick and glitter on my face to the falafel stand. My fiancé has agreed to help me dye my hair purple after our wedding.

The love is all still there. It never went any where. It just takes some eyes to see it.

This love is what makes living with chronic illness possible. The yoga, the dog, the glitter, and the books are all coping mechanisms that help me block out the pain. Without me I would live in a rainbow free world in black in white where all I could feel is sorrow.

So when you see the things that bring you joy, take a little snapshot in your mind. Let the world know how grateful you are for dogs and books and glitter. Be annoying about your love. Let it overflow, because without it there is desolation.

This is how fibromyalgia brought me back to myself after a huge disconnect of trying to fit into corporate America and “the man.” I was forced to listen to no one but myself to live my life.

Is this a positive? Definitely yes.

Let the love flow through you, y’all.

And now, a recap:

Pocket full of starlight: all the positives in my life are all still there and some have come back to me in the wake of my illness.

Pocket full of darkness: my computer crashes every 5 minutes so all my posts are written on a smartphone. That’s why this sounds like this was written by an 11 year old.

My Fibromyalgia Book List: The Fibro Book Club

It’s been a little while since I posted. Generally I’ve been a molten lava monster experiencing an existential crisis. Thankfully I found a book that helped: You Can Heal Your Life by Louise Hay.

I discovered this book by picking my chiropractor’s brain, a chiropractic doctor whose intelligence I respect, who showed me multiple books. My acupuncturist has also recommended a few books to me, and I have asked my fiancé, whose mother is a pharmacist, for recommendations. From now on, if I have the chance, I will ask my doctors for book recommendations.

Let’s return to You Can Heal Your Life.

The book largely focuses on mirror work and self-empowerment for physical and mental ailments. At first I was skeptical, but looking back on it I appreciated the idea of putting power back into an ill persons hands. The idea of mental wellness through an illness certainly can’t hurt. But the idea that it can cure cancer does. However I don’t think this is what Hay is arguing.

In order for her arguments to work, adopting her New Age worldview outlined in the beginning of the book is necessary. As someone who has more of that bent, this was easier for me to do than some. I like the idea of us choosing our parents and them choosing us. It’s a healing concept. Empowering.

Generally after my health downturn I have felt I have had no power. Power of the mind can be cultivated in any situation, which is why I have developed my fibro book list:

Just read:

– Herbal Medicine for Beginners

In the mail:

– Gray’s Anatomy

– Chinese Herbal Medicine: Materia Medica

– Heal Your Body

– Clinical Pharmacology Made Ridiculously Simple

– Medical Medium

– Stedman’s Medical Dictionary

– Why We Sleep

I recommend ordering your books off of Thriftbooks with a coupon code from Retailmenot. It’s cheaper than Amazon. Half Price Books is great too, but they don’t always have the selection.

After believing I was screwed over by the medical system, I realized I knew nothing about my own physiology. I wanted to order some books about the human body and make me more knowledgeable in my communication and what I put into my body.

There are a few books about herbalism. My fiancé’s family have been botanists for generations and he is a plant enthusiast. As someone leaning towards holistic medicine and wanting internal power, I wanted a hobby we could share together. Connecting through herbal medicine seemed like a good way to cultivate our marriage. Please note I do not reject western medicine.

I still read fun books, like The Sight, which is like badly written Game of Thrones with wolves. When I’m trying to relax this is what I read.

So, my fellow spoonies: what Spoonie related books do you read? I would love to know!

Mobility aid babe

As an anxious Spoonie bride, bewildered graduate student, and fearful sleeper, I own many titles. This weekend I tacked another on to my name.

Mobility aid user.

AKA

Mobility aid babe. It’s taken a good bit of mindfulness to come to this conclusion.

I had my bridal shower, and I was convinced I should not go if I could not do my makeup. I was able to prettify myself, but the problem remained that I was in extreme pain and lightheaded.

I decided to grab my dad’s hiking stick and use it as a cane. Thankfully everyone was understanding and only two people asked questions.

Today I attempted to see my friend and I had to use the same hiking stick to cross a parking lot. It was basically an instant KO. The poor hiking stick fell multiple times while we ate at a restaurant and strangers helped me pick it up as they spoke to me like a two year old.

I am not happy about this. Fiancé has been talking about getting me a motorized wheelchair for a while now. As for my opinion on this, it is still no. I have asked for occupational and physical therapy and am hoping it helps.

When my fiancé and I are together we like to dance – he scoops me up into his arms, I cling to him and we sway to our favorite love songs. Before my illness I went swing and salsa dancing. He took dance classes, and is a great dancer. But I mainly love the rhythm, the movement, and his arms.

I know that no matter what mobility aid I rock, he will still dance with me.

Pocket full of starlight: there may be times when you feel like other people define you by your illness, but the ones who matter won’t.

Pocket full of darkness: it’s hard to come to grips with needing a mobility aid, especially if you were once a fit, active person. It’s okay. Feel all the good and bad feelings and take them at face value. I’d worry about you if you weren’t a little freaked.

Green Light Therapy

As I am suffering from extreme pain right now, unable to do anything, my fiancé suggested I build a green light therapy chamber. In the linked article, researchers found evidence that if one bathed in green light for two hours a day regularly, it has significant pain reduction and no side effects and is intended to treat those with fibromyalgia and migraines.

My diagnosis is complex and I am treatment resistant. All the meds thrown at me have harmed me in some way. Eager to begin this treatment, I DIY’d a green light chamber for about $16 USD.

Please note the pain relief comes after a duration of time and regular use for about a month. Last night was my first time using my chamber to battle Painsomnia.

With that in mind, if you’re willing to experiment with me, I will gladly help you DIY your own Green Light Therapy Chamber!

DIY Green Light Therapy Chamber

1. Purchase green LED light bulbs

I bought a pack of two off of Amazon here.

2. Put the green LED light bulbs in a normal table lamp without a cloth shade.

The picture used in this blog post is a real image of my finished product. I took an antique desk lamp I already had and put a bulb in it. If you already have something, no need to buy!

3. Put the lamp with the green bulb in a dark, windowless room.

I chose our guest bathroom as it can be made pitch black. I put the lamp on the bathroom counter.

4. Bring in a foldable, portable, comfortable chair.

I suggest a canvas camp chair like this one.

My camp chair I already owned and did not have arms, which made it perfect to squish into my little bathroom.

5. Bring water and a paper book.

No smartphones allowed in the chamber and remember, you will be in here for 2 hours so you need to be able to entertain yourself. I read The Sight aloud until I felt able to fall asleep.

6. Set a timer for 2 hours and set it directly outside your door so you can hear it.

It will take some practice to get up to the full 2 hours, but if you bring a book, a craft project, or your sketchbook (maybe all 3) you may be able to get through the entire process on your first try. I made it an hour and a half reading my novel.

Tips and tricks

Make sure your chair is comfortable, supportive and flexible. You can use a bean bag chair, an office chair, whatever makes you feel good, but you must be comfortable otherwise you won’t last 30 minutes. It is important that you don’t try to sit on a toilet if your chamber is a bathroom. Try your hardest to find something comfy that fits, even if you have the tiniest of bathrooms.

Your green light therapy chamber does not need to be a bathroom! It can be a closet, a pantry, an internal office – it just needs to be a windowless room that can be made completely dark!

The finished product

This is my handmade DIY green light chamber. In the bottom right corner is my camp chair, which was previously mentioned in the tutorial. On the counter is my book to read and water to drink. The green light lamp is made from an antique desk lamp given to me by my mother which cost nothing, with a green LED light bulb from Amazon.

Takeaways

I did find relief using this last night. It was about 10:30 and I was crying from the physical pain I was in, so I asked my dad to bring in a camp chair. I attempted to use the green light therapy chamber earlier yesterday, but I had to sit on the toilet because I could not fit my office chair inside. This caused me to hurt myself. Everybody, please say no to toilets.

And now, a recap:

Pocket full of starlight: there are lots of ways we can combat pain ourselves, and some of them are very creative.

Pocket full of darkness: fighting pain takes time.

How Acknowledging the Good and Bad Helped Me Cope With Fibromyalgia

Have you ever been told “focus on the positive, eliminate the negative?” Do you have a problem following through on that advice?

That saying is almost like trying to ignore a tree that fell through your roof and now it’s raining. It’s also freezing outside, and outside is now inside your house. How are you to ignore the hole in your roof, the tree blocking your way, the rain on your floor, and the freezing temperatures, while somehow making it go away by focusing on the fact that at least the tree didn’t land in the master bedroom?

This is how I often felt when people told me to focus on the positive when I expressed being in pain after my fibromyalgia diagnosis, or the years of suffering leading up to it. I believed I had to acknowledge my suffering as well as the happy parts of my life in order to be productive.

After all, how are you supposed to get out of the freezing rain and turn your house warm and cozy again if you cannot admit that a tree fell through your roof? No one wants a hole in their roof caused by a fallen tree, but if it is ignored, it cannot be helped.

Growing up, I often felt deep emotions. Soaring happiness, rapid excitement, hollow darkness, and deep sadness. I had the entire spectrum of feeling. Usually, no matter the situation, I had complex emotions that confused me. At my grandfather’s funeral, I attempted to help serve food, set up tables, and had no idea I was supposed to sit with my grandmother. Her sisters were there, and as she never saw them, I thought they would be a bigger comfort to her than me. As someone who frequently helps at funerals, I had only rarely been part of the grieving family to be supported. I did not cry when my grandfather died, even though I missed him and loved him. The night before his funeral, I saw a silvery image of him come to hug me as I tried to fall asleep. My grieving process is still going on, and he died five years ago when I graduated college. After the initial numbness passed, I was greeted by regret, anger, and questioning.

This is just an example of how I experience emotions. Another is disaster planning. I have a bad habit for looking at a situation, seeing what could go wrong, and planning for the worst proactively. It’s not an entirely bad trait. But sometimes I will be excited about an idea, will have already run my disaster planning algorithm through it, only for my mother to shoot it down with extremely shallow disaster planning that was, well, preschool disaster planning, telling me I don’t think through things and proceed to forbid or simply kill my vibe. If I’m honest I think the fact that I am expressive and have more of an emotional ecosystem than my parents lead me to believe they think I cannot be rational, so when I am excited, I must have a bad idea.

The truth is, we all have emotions. Some people simply wear masks, like my parents. I am a bit too honest for facades and my feelings give me intuition that I operate out of. It also gives me a holistic approach to situations.

Growing up and today, disaster planning while feeling a positive emotion and not experiencing a total eclipse of the heart when tragedy happened prepared me (somewhat) for my fibromyalgia diagnosis.

When I was first diagnosed, I knew that not everything made sense. I fought for answers, found community, and researched coping skills. My previous posts outline some of these.

However, my greatest teacher for managing fibromyalgia is the yin-and-yang concept.

There is some good in the bad and some bad in the good. The light side and the dark side complete the whole.

Basically, imagine walking into a lit room with a couch in it. The light casts shadows in the room and on the couch you go to sit on.

Your depth perception as you walk to the couch and how you see the couch would be way off if you couldn’t see the light or the shadow. You may not possibly be able to make it to the couch!

When it comes to chronic illness and chronic pain, it is ridiculous to ignore our suffering. However we will not make it out alive by merely focusing on the shadows.

This is why I typically end each post with “pocket full of starlight” and “pocket full of darkness.”

With that said, a recap:

Pocket full of starlight: darkness has a friend, it’s name is light, and they rely on each other. For every pain you feel there is something lingering within waiting to shine on you.

Pocket full of darkness: in order to take the good, you must take the bad. Sometimes even with all the disaster planning in the world we cannot avoid disasters.

How to Make any Man Think You are Irresistible in 12 Easy Steps

Ladies, have you ever dreamed of a man who simply stares at you and says, “wow,” every time he sees you? I know I did, and it happened to me. I’m here to reveal my feminine wiles to you so you too can bag your dream man.

12 Steps to True Love, by Dr. Spoonie Love

1. Be yourself.

2. Develop a debilitating chronic illness that erases all of your precious hard work and goals.

This is the super fun part where people who don’t know you at all may start thinking you’re some poor dumb lazy loser who didn’t achieve the thousands of things you accomplished. You will need to remember these people are idiots, but at this step in the process you have amnesia. The idiots have stolen your brain. It’s not your fault.

3. Make sure you gain 100lbs. Really turns those men folk for a ride.

4. Become so inflexible you cannot scrub your tub or clean your shower.

5. Lose the ability to shower and remove those unseemly leg hairs.

6. Make sure your hair looks like a poodle on a muggy beach.

7. When your hands start to hurt applying makeup, this is perfect, as men prefer a natural woman. You will never have to worry about swimming dates again.

8. Begin to worry about swimming dates due to lack of coordination.

9. Experience an influx of extreme emotions as you realize you have developed a chronic illness and will never be deserving of love or a swimming date.

P.S. You are very wrong about this, which is the point of this ridiculous listicle. xoxo

10. Sit back as the people who already love you continue to love you, and attempt to explain things as needed using any method but interpretive dance.

Should interpretive dance be forced upon you, quietly excuse yourself to a nice couch and use one of your spoons for self-defense.

11. Realize that some people, especially yourself, aren’t going to leave you.

12. Understand that things will be okay, and you are worthy of the people, male and female, who love you.


Going against all common sense, I cut my hair into a curly pixie this past weekend. Stranger still, my fiancé stares at me in awe and breathes “wow.” I think it’s because I followed my 12 step program. Fellas, am I right?

Linguistics, Identities, Marginality, and Chronic Illness

Recently I had a class in which I looked stupid. This is normal for most people but as an introvert who hung out in the back of the class in class sizes of 300 people I usually didn’t have to talk, being put in the spotlight was never something I was used to. I am a graduate student now and my average class size is 10.

My class centered around interviewing the author of a social justice work book we read for the course, and I was very excited. I loved the book, and as someone who was a communicator for a church and trying to empower women and people in general in the chronically ill community, I had a lot of questions for her.

I am not articulate, so I wrote my questions down in advance. It had been a while since I finished reading the book and I wrote my questions that day so this was my likely faux pas. My questions to her centered around racial and gender identities and how they related to chronic illness and disabilities. I explained I was working on trying to make a positive difference with a somewhat girly chronic illness blog about personal identity, self advocacy, and empowerment. The author retorted that tutorials on how to look pretty for doctors appointments and individual activism was not how we overcome systematic injustice.

I have a few thoughts here. First, it is correct that individual activism is not how the chronically ill and disabled overcome systematic injustice. We must all share our stories honestly and openly with bravery. This is how we can seek each other out and join forces. However, I do not write tutorials on how to look pretty for doctors appointments. This blog does not exist to make a chronically ill or disabled woman conform to societies standards, it is to help her remember and have her feminine identity, if she identifies as feminine, be accessible within her new body. It exists to let those with real physical pain and limitations know they can still express themselves, just with some changes, and still accept themselves whether they have a buzz cut or want to learn how to maintain their hair that they love (not that society loves).

A diagnosis or disability is a traumatic life event that can make a person feel as if it is their only identity. I did not feel I had the time during class to explain that many chronically ill and disabled women wish to maintain who they feel they truly are after their diagnoses.

During the class I mentioned that it felt strange to me that I had to identify, or claim my identity as, a chronically ill person. I explained that I knew I had to use this language in order to find others like me to join forces and educate, and I believed it was the English language that forced me to use these labels. I also feel it is the medical system being controlled by pharmaceutical and insurance companies that pushes me into labeling talk and a lack of holistic care. I have noticed that other countries with other languages and cultures have different ways of seeing and talking about people of different abilities, genders, illnesses, and sexuality.

I know from a sociological standpoint an identity is not the personal identity from a more psychological standpoint I work from on this blog. Here I try to provide avenues to deal with the trauma of an illness. Even if society were different, the physical ramifications of illness and the emotions that come with them are things that no one outside of the group understands, even advocates. This is not something often talked about: trauma, self esteem, feeling worthy of accessible spaces and healthcare.

This large part is crucial to social change because in order to have change the community must be united. Within the chronically ill, mentally ill, and disabled communities, people are prejudiced against one another within their own groups and there is a lack of unity. People finding worth and confidence in themselves may help them find the same for their fellows. Their paths and struggles may hopefully produce the understanding needed to lift each other up.

This is just my theory. Feel free to disagree.