No one ever expects the mole!

When I suspected, and was finally diagnosed, with fibromyalgia, I thought I knew what that meant. I was going to be in some amount of pain for the rest of my life, along with an extra helping of mind-numbing fatigue. I checked with my Parents with Pain group, and it seems that I am not alone. We were all completely blindsided with various bizarre symptoms. It’s a cruel game of Whack A Mole; different symptoms and disorders pop up when you least expect them. And at times we feel like the moles have revolted, grabbed ahold of the mallet, and start to beat us back.

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Image by ccc7ccc at Deviant Art

Here is a list of just some of the bizarre indignities and medical nightmares we fibro people are forced to endure.

Muscle spasms
I think it’s safe to say that everyone has experienced some sort of muscle spasm at some point in their life. They range from tiny twitches in one’s fingers to backs seizing up, because you didn’t have anything better to do that day, did you? In hindsight, I realize that I experienced my muscle twitching years before I even knew that fibromyalgia was a thing. They start small, almost indiscernable, just a thumb barely moving involuntarily. When you try to show someone else, they don’t see it. You feel stupid and they decide you’re an attention-seeking idiot.
But now, there’s no denying the sudden moves my fingers make. Sometimes they keep me up at night. All to often, I’ll have almost drifted off into dreamland, when my index finger decides that it would rather point at my headboard. The stomach spasms are ones I never expected. It feels like being pregnant all over again, or like I’m incubating a tiny kick boxer.
It’s also way too easy for my muscles to spasm and stay locked so that I can’t move. I have literally looked the wrong way at the wrong time and landed myself in bed for two days because moving my neck was impossible without screaming bloody murder. On the plus side, it gave me time to watch and become addicted to Sherlock.

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I’m so glad Molly is also sick of my muscle spasms.

Night Sweats/Temperature Sensitivies
Sometimes I wonder if I should just bring a squeegee to bed with me. It doesn’t matter if I’m barely dressed and uncovered, I will still wake up in the middle of the night, drenched. Once I’m able to peel my face off my soaked pillow, I wipe off the small lake that had accumulated between my legs. There are plenty of good reasons to be wet in between your legs. This is not one of them.
To go along with the night sweats, sweating in general has become a thing. My fellow fibro folks have recounted tales of walking from their car to inside of a store and finding themselves turning into puddles. For me, the best part is stepping outside and immediately having a sweat mustache and soaked hair all around my hairline.
We also deal with sensitivity to cold. Along with being in more pain when it’s cold outside, my body has now decided to freeze at 73 degrees like it were 33 degrees in the house. I have heard other spoonies say that heat and humidity make their pain worse. Some of this is due, no doubt, to…

Swelling
The only time anyone should wake up and not feel alarmed by their giant hobbit feet is if they are, in fact, a hobbit. Tight, swollen feet are uncomfortable all by themselves without adding the enormous feat, (see what I did there?) of walking. Normally slender fingers also turn into sausages, making it difficult and painful to engage in normal activities…like picking up a cup to drink.

We can’t stay in one position for too long
One of my spoonie comrades said that if she stays sitting for too long, her tail bone swells. Sometimes with fibro, you just can’t win. If you lay down and rest for too long, it’s murder to get up and put weight on your feet. I have seriously felt like I was in some sort of physical comedy show where they immediately collapse upon standing. It’s so funny that you laugh until you cry….and cry….and cry until you ugly cry so that snot is all over your face and now you have a massive headache and have to try and stand up yet again. Ahem.
So, just don’t lay down, you might say. That’s all well and good, except, after standing for awhile your legs become tired and sore. Perhaps your back also gets in on the action. Soon after, your hips are like, Fuck this, I’m out, and give out on you so that you’re unable to put weight on them, which forces you to limp everywhere.

Neurological issues
Dizziness is pretty common. Fortunately for me, I don’t experience it constantly. But when I do, it is one of the worst feelings. Have you ever seen someone swirl soft serve ice cream or frozen yogurt onto a cone? When I’m dizzy, I feel like I know what it’s like to be that ice cream. I feel a sudden whoosh upward, starting at the bottom of my head and quickly swirling upward, so that my whole head is engaged before it’s over.
I consider myself to be a decently intelligent human being. However, all too often you’d never know it because of how stupid fibro makes a person. As a dear friend used to say, I can’t brain today. I have the dumb. Everyday, we wend our way through thick, goulash fibro fog. Once upon a time we may have been able to organize our thoughts easily. Now, they flutter out in foggy space as we try to corral them with slow-moving nets. We have difficulty finding, (or as I say, making) words. Sometimes we’re like a fibro-ridden Tantalus; words are there, just out of reach, and we are unable to grab them and send them to our tongues. Other times, they completely elude us.

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We become hypersensitive to stimuli. Screaming children pierce our eardrums. Too many people talking or things going on at once overwhelm us and make us want to cover our ear, close our eyes, and shut down. Sensitivity to light, smells, and startling events just add to the cacophony of stimuli issues.

Itchy, itchy, ITCHY!
I’m highly allergic to poison ivy. At Rachael’s first birthday I had it so bad that it almost took over my eye. I’ve also been introduced to the misery of PUPPPS. I had it for 20 weeks, (no, that’s not a typo) while I was pregnant with Zoë. Rather than just being confined to my belly, it was all over my body: my face, my neck, my arms and hands, even my butt.
None of this prepared me for the ridiculousness that is fibro itching. Without warning, it will suddenly pounce, sending you on a scratching frenzy. And it doesn’t stay in place. Oh no. It likes to play itchy tag. Now I’m on your leg! Yoohoo! Over here, on your butt. Ooh, I haven’t been to your palms lately. My itch attacks generally strike when I’m trying to go to bed. They also really like to torture my feet, which makes quietly scratching so as not to disturb Mike as he’s falling asleep nigh impossible. I’ve broken the skin from the intensity of my scratching.

Costochondritis
Costochondritis is a comorbid disorder that manifests itself by the swelling of the muscles in your chest. If you’re not familiar with the pain, you will worry that you’re having a heart attack. In fact, I feel like I’m playing heart attack roulette every time I have an episode. I worry that one of these days it will actually be a heart attack that I have written off as costochondritis. Moving and breathing during an episode intensify the pain. Stress also makes it worse. I take prescription strength anti-inflammatory twice a day to stave off the pain. And now I worry that some day my wrecked intestines will bitchslap me for it.

Interstitial cystitis
Imagine feeling like you have a urinary tract infection all. the. time. That’s the awesome that is interstitial cystitis. I feel like I live in the bathroom with the number of times I pee in a day. I just peed five minutes ago, and my bladder is already hurting. I often sit on the toilet for several minutes, just waiting for my body to let it go.

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Original image by lollipop at Deviant Art

Seriously, you could create a fade time lapse sequence while I sit and wait to pee. First, looking around to see what’s new in my bathroom, (nothing) and deciding if I want to paint the walls a new color. Fade to clipping and filing my nails. Fade to checking Facebook and Twitter. Fade to rage posting something from Jezebel. End sequence with me pushing out the pee like I’m giving birth. Aaaaaand, scene.

There you have it, folks. A not even nearly comprehensive list of all the extra BS we spoonies get to endure along with the pain and fatigue of fibromyalgia. I’ll end it here because I don’t want to bore you to death. Also I have to pee….again.

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Just an itsy bitsy, teeny weeny bit of shame

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I came across the following video yesterday. Although it’s not new to the internet, it’s new to me and it made me ragey. Go ahead and watch it. I’ll wait.

On the surface, it seems really great. Cute swimsuits where I don’t have to worry about showing off my everything. But when you stop, really pay attention to what Ms. Rey is saying, and think, you realize she is simply a participant in conservative evangelical, patriarchal culture. She invites you to buy into the lie, (and one of her bathing suits, while you’re at it) that if a man sexualizes and doesn’t respect you, it’s your fault that you didn’t wear a modest enough swimsuit.
The talk’s tactic is simple. In fact, I learned this is social psychology in college. What we have here is a false dichotomy facilitated by the “door in the face” technique.

SLAM! Bikinis should be as skimpy as possible.
SLAM! Men’s brains shut down when women wear bikinis.
SLAM! Women used to wear bath machines so no one would see their bathing costumes.
SLAM! Women’s swimsuits used to be measured by the lifeguards on the beach.
So, see guys? By comparison, my message and what I’m trying to sell you isn’t so bad. You should now be adequately shamed and on board with giving me your money.

In the beginning, Ms. Rey sites a Princeton study which showed some men’s brain scans revealed no brain activity in the medial prefrontal cortex, (the area responsible for empathy) when they were shown pictures of “scantily clad” women. The study’s analysis stated that “it is as if these men are responding to these women as objects.” The conclusion Ms. Rey makes is essentially this: if you want to be empowered, you need the respect of men, and men don’t respect women who aren’t dressed modestly.

First of all, that doesn’t make too much sense. Self-empowerment doesn’t come from an external locus. Secondly, DUH! Of course men’s brains are going to react that way. We, particularly men, have been trained to objectify women. Think about it. Who decided, and why, that men’s chests and nipples are not inherently sexual and, therefore, able to be exposed at places like the pool? Why are women’s chests and nipples deemed inappropriate for public exposure? It’s because a patriarchal society decided that, because breasts turn men on, they are inherently sexual and have no other purpose. On the other hand, men’s bare chests don’t do anything for heterosexual men, and they have historically been in control of what is and is not acceptable. Therefore: men’s chests=innocuous, women’s chests=drool, honka honka, *motorboating*. I’m not suggesting that women now walk around like Scout Willis, but I am pointing out the absurdity in logic and double-standard that we so easily accept. Just like men have been trained to objectify women, so too have women incorporated this into their worldview without even realizing that it was really forced on them. It is the world’s most elaborate joke, without anyone yelling Sucka!

Aside from nipple double-standards, it is easy to find the objectification in our culture. From advertising to Sundays at church, it is clear that this training is pervasive. Beer commercials have women partying in swimwear in the snow. Or this one, where the woman is straddled over and melding into the bottle of piss beer bottle.
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Men’s cologne is advertised with a naked woman’s body as a mere background prop.
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This study suggests that even women view other women as objects when they are sexualized in advertising. Not only do men not hold the monopoly on objectifying reactions, it demonstrates the problem in our culture is indiscriminate. This is learned, not inherent.

This sort of objectification is not just learned within the confines of secular culture. Conservative evangelical culture also treats women and their bodies as either stumbling blocks, (how much more “object” can you get than a block which causes you to stumble?) or things which should be made available to their husbands. From an early age, girls in the church are taught about what is and isn’t appropriate attire around the young men of the church. Mission trip lists tick off the many rules for what the girls can and cannot wear: shorts at least fingertip length; one piece swimsuits only; no spaghetti strap tank tops, (because heaven forbid you see belly buttons or skin close to the breast.) The dress code for guys? *crickets* The reason for these rules is that dressing “immodestly” would cause the guys to think about us sexually and give them impure thoughts.
Once we grow up and get married, women are told that sex is so important to men that they should make themselves available so that their husband’s needs can be fulfilled. The Gospel Coalition printed an article which argued that when women aren’t submissive sexually, it ends up causing sexual violence because the way the world is supposed to be has been thrown off kilter. Even women make it abundantly clear to other women that if they don’t put their boobs away where their husbands can’t see them, it will cause significant problems in their marriages. The message is clear: the purpose of women is to sexually gratify men.
This is a Madonna whore culture. While we should be “sluts” in the bedroom, we had better not be seen as a sexual creature outside of it. If we are, it is our fault. Just like Hester Prynne was labeled with a scarlet letter, so women today are judged by what is worn on the outside. We are labeled as “sluts”, “whores”, “asking for it”, or “immodest” if our outward attire does not conform to what is deemed acceptable by the viewer. Meanwhile, our Reverend Dimmesdales slink by unnoticed or, when they are caught, simply place blame on who we all know is at fault after all: the slut who wore the immodest bikini.

Naturopathy is Trisha’s weapon of choice

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I met Trisha when I first began blogging last year. Like me, she also lives with fibromyalgia, and was the first spoonie blogger with whom I connected. It’s been a pleasure getting to know her, sharing “Me too!” moments from opposite ends of the country, and having an opportunity to learn about natural remedies that ease fibromyalgia symptoms. Trisha lives in Washington with her husband and two sons. She blogs over at Notes from the Fog.

1) So, what ails you?
I was diagnosed with fibromyalgia, but I’ve often wondered if I actually have Chronic Fatigue Syndrome instead. Or, if I have fibromyalgia and a mild case of Chronic Fatigue Syndrome. Or, if they are two slightly different manifestations of the same illness and it doesn’t really matter which one I was diagnosed with. The two illnesses are so similar it can be confusing.

2) When did you receive your diagnoses? How long was it from the onset of symptoms before you had a diagnosis?
I got the diagnosis of fibromyalgia in 2003. I’d had increasing fatigue and a generalized all over achiness for a couple of years. I thought I was just tired because I had a baby who never slept. Then, in the spring of 2003, I had my first massage, which triggered a major flare up. That’s when I knew something was definitely wrong and I went to a naturopath. I received my diagnosis a few weeks later.

3) How does your illness manifest itself, (symptoms)? Does it or has it manifested itself in a way that is atypical? Did that delay receiving a diagnosis and/or does that require you receive different medical treatment?
That first major flare up consisted of severe fatigue and kidney pain, which did delay diagnosis for a week or two while my naturopath checked out my kidneys. It probably would have delayed diagnosis for a lot longer, but I happened to look up the symptoms of fibromyalgia and realized it fit with what I was experiencing, (aside from the kidney pain.) My naturopath reluctantly tested my tender points and seemed really pissed off that they were, in fact, tender. I guess she wanted to be the one to come up with a diagnosis! These days the kidney pain only flares up occasionally. Most of the time the fibromyalgia manifests itself as all-over achiness, pain from “weird spots” in my muscles, headaches, mind numbing fatigue and brain fog and dysfunction.

4) Have any unconventional or naturopathic treatments worked for you? What are they?
The naturopath I was seeing a couple of years ago recommended the anti-inflammatory diet and I have found some relief from (loosely) following it, especially after cutting gluten, corn, dairy and refined sugar from my diet. I’ve found that 200 mg a day of CoQ10 really helps with energy and that a liquid extract (tincture) of valerian root helps with sleep. I recently started taking Siberian Ginseng and find that it helps with the fatigue too. I also use essential oils topically, mostly doTERRA’s Deep Blue, Plant Therapy’s Pain Aid and a combination of lavender, marjoram and chamomile at night. I think acupuncture would help if I could afford to do it regularly. I felt it doing something during the few treatments I had.

5) How has your illness affected your daily activities? How has it affected you long term? Are there things you used to love doing, but can no longer do?
My illness has forced me to slow way down. I used to work full-time and take care of my home. Now, I don’t have a job outside the home and I still can barely keep up with housework. I have to keep my life very simple and quiet or I end up crashing. I don’t see me ever being able to work full-time, unless I experience a miraculous cure. There are many things I used to love doing that I can’t now. The first one to come to mind is hiking. I really miss that.

6) How has your illness affected your mental health?
In one way, it’s had a positive effect. I’ve had to really get to know myself, to know what’s truly important to me. All the time home alone allows for a lot of soul searching. On the other hand, I talk to myself a lot now, so maybe I’m not as sane as I’d like to think.

7) How does your illness affect your family and friends? Have they been supportive?
Friends and family have had to get used to me not doing a lot of things I used to do. Some have been supportive. My husband is supportive most of the time, but he doesn’t really understand. My mom is as supportive as she can be, and she definitely understands because she has chronic pain and probably fibromyalgia too. A couple of friends are understanding and supportive. A few people have made it clear they don’t get it and others just exude skepticism without saying anything.

8) What do you wish people understood about your illness?
I wish they understood how hard this illness makes it to keep up with the daily things that need to be done, like dishes, meals and laundry. I wish they understood that those things take all the energy I have and some days I don’t even have enough energy to get through them. I wish they understood that I have pain every single day of my life and that when I say I’m doing good, I’m still in pain and battling fatigue.

9) What do you wish people understood about you in light of your illness?
I wish people understood the sensory processing issues and overstimulation that can come with this illness. I wish they understood how hard it is for me to be around people, to be out of my house, to be surrounded by noise and movement. That it doesn’t matter if I’m just sitting – it’s still exhausting. And I wish they understood that I do wish I could do more.

10) What has pissed you off the most during your journey with this illness?
I get really pissed off at life for continuing to demand so much of me when I feel so awful. I get pissed off that people continue to have so many expectations of me. Again and again, I explain how difficult driving is for me and I still get pressured to do it. I get pissed off that I have to do anything for or participate in holidays that don’t mean anything to me, just because it’s what everyone does.

11) What has been the most helpful?
The thing that has been the most helpful in my partial recovery is avoiding chemicals and food additives. Switching to a natural laundry detergent and not using any kind of fabric softener or dryer sheets made a huge difference in how I feel. I’m also discovering that even innocuous sounding food additives such as “natural flavor” increase my pain. If I could figure out how to make everyone else give up their fabric softener and perfume, I’d be in pretty good shape!

12) If you could shoot one of your doctors/healthcare providers out of a cannon because of their asshattery, who would it be and why? About two years ago, the clinic I went to put me in with a different doctor than I requested. I was not pleased and this doctor, who I call Condescending Bitch, was even more unhappy to have me as a patient. She was very rude, basically scoffing at everything I said. She refused to order blood work and sneered when I asked about trigger point injections, saying that “no one did those anymore.” She made it clear she felt nothing but contempt for me, and I’d love to shoot her out of a cannon!

There is no shame in depression

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Thinkstock images

Recently, I joined the Parents with Pain Facebook group. It is so wonderful to have another positive way to connect with people who are in the same situation. During one of our discussions, several women shared that, in addition to their pain, they lived with depression and, at times, suicidal thoughts. This didn’t surprise me, as chronic pain and depression are typically comorbid conditions. What did shock me was how unsupportive their husbands/partners tended to be with regard to my fellow spoonies’ physical and mental pain. This seemed especially true whenever this involved sharing the experience of depression and suicidal thoughts with others. Words like “ashamed”, “pride”, “stigma”, “embarrassed”, and “mental cases” stood stark on the page, pushing aside the other words to reveal sorrowful secrets. They described the reactions and perceptions of these partners. I was shocked because I had never experienced this in my marriage; Mike has always been my biggest cheerleader. We’ve had plenty of bumps on the road of sorting out this new way of life, but Mike has always been beside me as we were shaken and jostled about.

Allie Brosh and NPR
Last year, I was excited to receive Allie Brosh’s book, Hyberbole and a Half, in the mail. I loved her web comic, (Adventures in Depression and Depression Part 2 are a must read) but her interview with NPR made me want her book all the more. In the book, she shares her journey with depression.
(I say “with” rather than “through” because, as anyone who has experienced long-term depression knows, it’s not some horrible houseguest who wrecks your weekend and grocery budget. It’s more of a permanent travel companion who wants to listen to horrible emo music and cover your eyes while you drive. Sometimes you can relegate it to the backseat or the trunk, but it’s always with you.)
During the interview, Allie explained that, at her lowest, she no longer wanted to exist. She didn’t necessarily want to kill herself, just somehow fade from life.
This so perfectly described me at my lowest. Because of all the physical pain, stress, and fatigue of fibromyalgia, I colorlessly admitted to Mike that I wished I could just blink out of existence so I would no longer feel the pain and hopelessness. I’ve wanted that option mostly because I’m too scared to actually kill myself. (It also takes the responsibility out of my hands.) I’ve stood at my sink with the sharp knife I’ve just washed. I’ve held it over my wrist with the faucet still running, recalling from The Craft the proper way to do it. And then I wonder how far I’d actually get before yelling, Ow ow, fucking ow!, and then just have a bloody mess, a big ER bill, and an exclusive, one-way trip to the psych ward of the hospital. I’ve thought about overdosing and stepping into traffic. I’ve laughed through tears that I wished I were dead because, then, I’d get some good sleep.

Through all these things, Mike has been supportive. He’s listened and understood. He’s urged me into therapy and reminded me to see my doctor to adjust my meds. Not once were words like get over it, all in your head, or don’t tell anyone uttered. And thankfully, he’s never given me any articles or books about the 5 Habits of Happy People or some other nonsense, otherwise I would have smashed his Adam’s apple when I throat punched him.

He never said anything like that because of one simple fact:
Depression and suicidal thoughts are not things anyone should feel ashamed of.

(Ending a sentence with a preposition? Maybe.)

They are not things that are fixed by Cher yelling, “Snap out of it!” It is not your fault that your brain chemistry works this way. For me, the thought of dying allowed me to realize that I don’t want to miss growing old with my husband, taking over helping with the planning of my daughter’s weddings, and spoiling my grandkids. Going to that dark place, without fearing shame or stigma, was a chance for me to sort through those thoughts and feelings head on and get the help I so desperately needed.

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If you are in the grip of depression, please please PLEASE do not let the fear of shame prevent you from seeking out the support you need. If your partner won’t help, see your doctor, talk to a friend, or join a support group. There are more of us than you realize. You are not alone. When more of us emerge from the shadows, more light is able to pour in and drown all the lies of suicidal thoughts and depression. And if someone tries to shame you for your depression, tell them to just get over themselves.