Fibromyalgia and Broken Promises

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Her face falls and her shoulders slump.
“I’m really sorry, honey. I’m just hurting way too much.”
“Okay,” Rachael responds, shuffling away from me. She understands. That somehow makes it feel worse.

The annoyed sigh that I expected Mike to breathe comes through the phone.
“Okay.”
His response is terse. It’s not that he’s mad at me and is going to be a dick about me calling him to come home. Mike understands that a component of fibromyalgia is chronic fatigue and that, even though I said he could stay for game night, the day has become too much and I need his help. But it still doesn’t suck any less for him or make me feel any less guilty when I have to pull the rug out from under his feet.

Text to R:I’m sorry. I’m have to cancel today. Zoë was up half the night.

Text to J:I’m sorry, but I physically can’t keep my eyes open today. Mike is going to bring Rachael instead.

It seems that I’m always breaking promises and letting people down because of this damned chronic illness. I’ve learned to compensate by under-committing and making “hopeful” plans. I almost never promise my children anything anymore, just so I don’t have to break their hearts along with my promise. Language like, “We’ll try,” or “We’ll do our best,” has also become part of Mike’s vocabulary. He, too, knows better than to assume our plans won’t fall through at the last minute.

I hate breaking promises. I hate that, compared with my old self, I have become an unreliable, under-productive woman. Fibromyalgia recklessly rampages, unplanned and unannounced, not caring who is caught in its wake. I know that, for others, it must be difficult to separate fibromyalgia from me. I sometimes still have trouble making the distinction. But it’s not me who is letting everyone down; it’s the fibro.

I’m sure it may be difficult to understand that I can’t always manage my own illness. Surely, if I know flares are possible, I should be able to plan accordingly so I won’t have to break any promises.
That’s only partially true.
I know I need to plan on being wiped out for a week or two after a trip. I believe it took me 3 weeks just to recover from Christmas. I generally avoid planning more than one thing in a day. For instance, my trip to the dentist on Monday left me feeling as though I’d run a marathon, minus the shitting myself component. I avoid making plans with anyone after 5 pm. My body is generally done, physically and cognitively, by then. I even tend not to let my kids in on plans until they’re about to happen. Given the nature of this beast, it makes no sense to plan for a friend to come play after school ahead of time, as I’m usually useless by 3 pm.

Still, even with all this planning and compensation, I can be suddenly attacked with flares. Sometimes I can explain them, e.g. weather events. Sometimes I’m waylaid and left thinking, What the actual fuck? Where’d this come from? These flares are not simple mind over matter moments. I can’t overcome them by simply refusing to be a pussy and soldiering on. All I can do is take care of myself and let it run its course. And part of taking care of myself sometimes includes breaking promises.

Part of what prompted me to write this today is that Rachael and I have plans to go see Into the Woods today. Because of all the weather systems coming through, I’ve been in horrible pain this week. I feel like I’ve been walking on broken feet. My back and shoulders are compressed in a vice. And this morning I woke up feeling like my neck had been in a knife fight. The thought of holding my neck to watch a movie for 2 hours sounds like torture. But I took as many drugs as I safely could and hoped the pain would subside by movie time, because I’ll be damned if I’m breaking another promise to my little girl.

Spiced fudge

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I know posts have been sparse lately. Preparation for the holidays, recovery from the holidays, and the simple fact that it’s winter have made it hard for me to give two shits about the blog. I feel like I’ve been in a constant fight to stay awake for the last few weeks. My brain has also been extremely foggy, making it virtually impossible to make good words for those things that put good words together for the looking at words by the people. But I’m sitting on something that makes my body like an L and those pointy things on my hands are touching those squiggly things that make words. And I can’t close my eyes for sleepybys because I have to go see the lady who will fix the seeing part on my face because something is stuck and it gives me the ouchies. So let’s talk about yummy chocolate squares I make during the cold time, when people put up green, pointy triangles and blinky, shiny things.

(No, my fog isn’t that bad. But I did have a meltdown because I couldn’t remember what to call gelato bowls. So that was fun.)

Cookie-making is a big deal in my family. It was a fun tradition my siblings and I had with my mom every Christmas, and it’s a tradition I’m passing on to my girls. I feel horribly that I didn’t manage to make as many Christmas cookies as I normally do. I still have all the ingredients. Peanut butter kiss cookies in May? Why not?
One of the desserts I did manage to make was fudge from the recipe my mom gave me. It makes a lot of fudge, it’s edible straight out of the freezer, (and sometimes is even better that way) and it’s perfect for a nice, homemade Christmas gift for someone. A couple of years ago, I decided I wanted to give the fudge some more dimension. I took my cue from the ancient Mayans and added spices, specifically cinnamon and cayenne. It gives the fudge a nice kick and dials down the sweetness so you don’t immediately go into a sugar coma. I put in the amount of spice that makes me happy, but you may certainly adjust the recipe to suit your taste.

Spiced Fantasy Fudge
3 cups sugar
3/4 cup butter, softened and cut into chunks
2/3 cup (5 1/3 oz) evaporated milk
1 12 oz pkg milk chocolate chips
7 oz marshmallow creme
1 tsp vanilla
1/4 tsp cinnamon
Pinch of cayenne pepper

Combine sugar, butter, and evaporated milk in a 2 1/2 qrt heavy saucepan. Bring to a rolling boil, stirring constantly. Lower heat to medium and continue to boil, stirring constantly, for approximately 5 minutes or until a candy thermometer reaches 234 degrees. Remove from heat. Stir in chocolate chips until melted. Pour into a large bowl and add the marshmallow creme, vanilla, and spices. Beat the mixture until well-blended. Pour the mixture into a 13×9″ pan/dish. Cool at room temperature.

Once set, (it will take a few hours to overnight) slice into cubes. For less mess, easier slicing, and better structural integrity, freeze before slicing. Fudge is best stored in a zip top bag in the fridge or the freezer.

Fatigued or Lazy?

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Wikimedia Commons

One of the biggest worries a Spoonie has is that someone will mistake the Spoonie’s fatigue for laziness. Should the judging party believe fibromyalgia and CFS/ME to be a bunch of hooey, seeing the Spoonie during a bad episode, or flare, of fatigue may just provide the skeptic with a large helping of confirmation bias. I can see that, from the outside, we probably do seem lazy. Dishes aren’t done. The house is a wreck. You don’t always volunteer for things. You haven’t done a single Pinterest project with your preschooler today. You’re laying on the couch, trying to stay awake, yet again.

The funny thing is that there are plenty of times when we Spoonies assess our own situation like Mrs. Judgy-pants, from the outside. We survey our own behavior and the disaster lying around us and think, What is wrong with me? Why can’t I just push through the fatigue and take care of this shit? Maybe I really am just lazy. I had that fight in my head this morning. I was going to go grocery shopping this morning. I really was! I picked out the recipes, made the list, and everything. But as I began getting ready to go, I felt my body begin to fade. I could almost hear the sound of my energy draining, like the sound the tractor beam to the Death Star made when Obi-wan powered it down.

To put it another way for the non-geeks:
Every cell in my body felt as though it were being drained. My body felt heavier and heavier. If you’ve ever carried large buckets of water in each hand, you may know how I was feeling. You’ll just need to also add buckets around your knees, ankles, shoulders, and neck. And don’t forget the irresistible urge to sleep that you must resist.
I began to worry that I was, in reality, just having an urge to be lazy, an excuse to not go to the store. I wondered if I should just suck it up and push through it. Ultimately I decided to save my spoons and try to do some smaller tasks around the house.

This is the balancing act we Spoonies must do all the time. We must balance “doing” and “not doing” for the sake of our spoons, and we must balance “guilt” and a “clear conscience” for the sake of our sanity. Many times my mind has shrieked in frustration because of the things my fatigue has not allowed me to do, things that I used to be able to do. I liken it to someone in physical therapy trying to regain the use of a limb. And then then depression seeps through the cracks and whispers, Maybe you’re just lazy.

I don’t regret my choice to forego the grocery store and avoid risking a spoon deficit. I still needed to be able to take care of Zoë and stay awake through homework, dinner, and bedtime. As much as I hate to admit it, grocery shopping is really hard on me now. And it’s not because I’m lazy; it’s because I’m sick.

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!

Gluten free: Day 5 through 5 3/4

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Thinkstock images

So, I didn’t make it two weeks. Since I began eating gluten-free, my pain and fatigue had gone from bad to worse. I was used to having foot pain first thing in the morning and at night, but now it was all day. And it was unbearable at times. If I were reclined on the couch, I couldn’t lightly touch the top of one foot with my other foot without it feeling like my foot was being crushed.

On the positive side, I made a yummy “mac” and cheese. Mixing in the chicken meatballs added texture and dimension in taste. I didn’t measure the amount of pasta and cheese because I add cheese to the béchamel based sight. So these are approximations.

Cheesy gluten-free “mac” and cheese

3 cups uncooked brown rice penne
1 cup skim milk
4 Tbsp unsalted butter, sliced in 1/2 Tbsp size pieces
1 Tbsp corn starch
~ 1 cup freshly grated sharp cheddar
~ 1-2 cups freshly grated fontina
Salt, to taste

Directions
Bring water to to a boil in saucepan. Season water with 1-2 pinches of kosher salt; add penne, cook according to package instructions. I used Tinkyada.

While water is coming to a boil, heat the milk in a saucepan on low to medium-low heat. Heating the milk will avoid clumping when you make your béchamel.

Melt butter in another saucepan on medium-high heat. Whisk in corn starch until completely incorporated. Allow mixture to simmer for approximately two minutes, stirring frequently to avoid burning. Simmer until mixture is a medium sandy color. Slowly whisk in warm milk, whisking constantly until milk is fully incorporated. Simmer mixture for a few minutes, stirring constantly to avoid scalding. Once béchamel has thickened to the desired level of thickness for your sauce, remove pan from heat and stir in cheese. Season with salt to taste, approximately 1/2 teaspoon.

Pour cooked penne into the cheese sauce and stir to combine.

By the end of the day…
With all the pain I was in and fatigue weighing down on me, this was my general attitude toward eating gluten-free by dinner time….
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So I did what was probably the worst thing possible after having been gluten-free for several days; I had a turkey burger and fries. After dinner, my intestines reciprocated that middle finger from before dinner. To be fair, though, this particular burger has always given me some amount of intestinal distress. It does the same to Mike as well. But flooding my system with gluten like that was stupid, I know. I ended up being gassy for a couple of days, but by the next day, the pain in my body and fatigue has eased up. They continued to do so over the course the next few days.

My takeaway
It may have been a coincidence that my pain and fatigue became so bad the week that I tried out going gluten-free. The only way to really know is to try it again at some point. Until then, I’m definitely going to cut down on the amount of gluten in my diet. Cutting down on the gluten, if nothing else, helped my sugar remain stable and potentially had a positive effect on my weight. Finally, living gluten-free obviously takes a lot of prior planning and energy. Convenience food, like fast food, was generally not an option. On the one hand, that’s clearly good for my health. On the other hand, I then have to have the ability to stand and the energy to cook which, as all people with fibromyalgia and chronic fatigue know, isn’t always possible. Clearly, I would need to make food with plenty of leftovers or freeze portions. (And I don’t really count the crockpot as a much better option since plenty of prep work is usually still involved.

So, is gluten-free for me? I think the answer is a clear, resounding, *shrug* I dunno.

Gluten free: Days 3 and 4

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Thinkstock images

I knew when I began eating gluten-free that I was going to make black bean brownies and breakfast quinoa. The quinoa is simple to make, so long as you don’t really follow the directions. Honestly, sometimes I feel like the laws of physics cease to exist in the Cooking Light test kitchen. So, let’s do this correctly, shall we?

Breakfast Quinoa

1/2 cup uncooked quinoa
3/4 cup light coconut milk
2 tablespoons water
1 tablespoon light brown sugar
1/8 teaspoon salt
1 cup sliced strawberries
1 cup sliced banana

Place quinoa in a fine sieve, and place the sieve in a large bowl. Rinse and drain quinoa. Repeat the procedure twice. Drain well. Combine quinoa, coconut milk, 2 tablespoons water, brown sugar, and salt in a medium saucepan, and bring to a boil. Reduce heat, cover, and simmer 15 minutes or until liquid is absorbed, stirring occasionally.
Serves 4.

Rather than eating this as a meal, I ate it as a protein-filled snack. It will fill you up quickly. It also freezes well, if you are inclined to make a large batch and freeze individual portions.

On day 4, I was pleased to find that I didn’t have to wrestle my jeans on like I have been lately. That, along with not being as hungry, were the about the only things that were better. My pain and fatigue were so much worse. My feet and legs hurt all day to the point that by nighttime, I was hobbling just 15 feet from the couch to the bathroom. Unfortunately, Mike and I have not reached the level of relationship synergy that allows him to pee for me, but he was able to fetch other things I needed that night.
That morning, I rated my fatigue level at about a 6 out of 10. (Which I would imagine would feel worse for people who aren’t used to this level of fatigue.) By 11:20 am, I wasn’t able to keep my eyes open. Normally I avoid taking naps so that I can try to keep my circadian rhythm in a normal pattern. But that morning, I was physically unable to avoid it.

Recipe modified from Cooking Light

Gluten free: Day 2

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Image credit

Me: If I do this for 3 days, people will say that I should have done it for a week. If I do it for a week, people will say I should have done it for 2 weeks. If I do it for 2 weeks, people will say I will have to do it for a year before I see any benefits.

Mike: Even a juice cleanse takes at least 3 days. Be thankful you’re not having just lemon juice and anchovies.

Me: Anchovies? A cleanse is lemon juice and cayenne pepper.

Mike: ……..in England they use anchovies.

Day 2 began with Kashi Indigo Morning cereal, which is cornflakes with freeze dried blueberries and blackberries. I weighed out the serving size on the nutrition label, thought, Aww, that’s adorable, and poured some more. The flavor of the cereal was decent and it has a good crunch. It left my hunger somewhat satisfied, but definitely not full. Fortunately, a cup of coffee finished filling me up. The flakes left kernels stuck in my teeth like I had eaten popcorn, perfect for second breakfast later.

At lunchtime, I tried the brown rice pasta and chicken meatballs. The pasta was a bit chewy, but the taste and texture wasn’t really different from regular pasta. It also reminded me that I really need to bottle my own sauce. Bottled is okay in a pinch, but it always seems to have an aftertaste to it.

That entire day, I felt like a shell of a person. A very, very fatigued shell. On the plus side, my hunger wasn’t as bad as it normally is. The food I ate seemed to sustain me for longer periods of time, and when hunger came, it didn’t suddenly crash.

The magic of elves

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I, like most people, get songs stuck in my head. It’s not only that, though. I also tend to get words or phrases stuck in my head. Sometimes it’s the name of a place, like Macchu Picchu. Sometimes it’s lines from movies or a tv show. For reasons unknown to me, when I read the Body Science book to Rachael, the term vas deferens made its home in my mind. The rhythmic squeaking of the girl’s LeapPads when they erase something conjures up the words hush puppies, said in time with each squeak. My bizarre masterpiece thus far, though, is when octogenarian was stuck in my head. Somehow, the Uruk-hai in The Two Towers insisting, “They are not for eating,” when the other orcs wanted to eat Merry and Pippin wandered in. It was closely followed by Winnie the Pooh lamenting, “I wasn’t going to eat it. I was just going to taste it.” The result?

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Yeah. I know most of you are backing away slowly from your computers right now. This has a point, though. I promise.

I’ve been having a hard time lately. I’ve been running on empty. I think my medication for depression and anxiety isn’t working as well as it used to, which my doctor warned was a possibility with Cymbalta. The pain and fatigue of fibromyalgia has left me feeling hopeless and helpless. The likelihood that I will live with this for the rest of my life, and I’m not quite 33, makes me feel trapped. Yesterday was particularly bad. Fortunately a nap helped make things feel less desperate.

Today, my energy is alright and my pain is mostly in my feet. Even so, today, just like every day, is a battle to not give in to the fatigue and pain. To not give in to the depression and resign myself to being listless on the couch. To not give up the hope that I still have good days ahead of me and that I could possibly get better some day.
It’s actually kind of hard to keep the fight in me once I step into the warm, relaxing embrace of my morning shower. As I stand there with my eyes closed, letting my muscles relax, it’s easy to say, Fuck it, and just give in. Today, though, I was saved by words suddenly springing to mind. At first, I just heard the voice behind the words, pleading. Then the words formed, “Don’t give in. Not now.” The words Lady Arwen said to Frodo as he began to pass into The Shadow. For some strange reason, I felt bolstered by these words. I know it’s weird, but whatever works, right? As they repeated in my mind, they became a small mantra that helped me refuse to become a shadow of myself. At least for today.

Patience is a virtue I can’t wait to have

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The Goldbergs

If someone were to describe me, “patient” would not be anywhere near the top of the list. I would probably also say that I’m just a few turns short of tightly wound. These traits are not ones that predispose me to mother of the year. The universe, being the jackass goofy, fun-loving prankster it is, threw in fibromyalgia on top of those traits. The chronic fatigue that comes with it just drags any patience or composure I have down and repeatedly kicks them in the nuts. The result is a bear having been poked one too many times.
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My self-control has been tested a lot lately, especially in the mornings before school. This morning, in particular, was epic. Rachael isn’t really a morning person. Much like me, she’d rather snuggle under her covers or stab you in the face than bounce out of bed with a smile. This morning, however, she was out of bed before I was. She came in to snuggle with me for a few minutes before walking downstairs for breakfast. As we began to head downstairs, she complained of her legs being cold and wrapped her blanket around her waist to keep her legs warm. It dragged on the floor in front of her. I told her I was afraid she would trip on it and asked her to pick it up and carry it normally. She whined and said she wouldn’t trip. We repeated ourselves a couple of times before she drama queened out, turning her back to me and shoving her face in the corner. She cried that it was her blanket and she’s the one who decides what to do with it. From there, she flopped to the floor in the fetal position on top of it. I firmly told her that if she didn’t get up and stop whining, she wouldn’t get to take the blanket downstairs with her at all. For some reason, she took this as her cue to get up and try to flee to her bedroom. I followed through on my threat and chucked the blanket down the hall. Much ugly, hysterical crying ensued. As she sat crying tears into her waffle, I tried to explain to her that it was a consequence of her choice. Eventually, because he speaks Rachael, Mike got her to calm down.
The rest of the getting ready process went smoothly until what is usually the worst part of the morning: getting out the door. This is the time that I have to scream at Rachael to put on her coat as she argues that she doesn’t have to wear a coat because she has on long sleeves. (It was 26 degrees and windy this morning.) This is the time when both girls become incapable of finding their shoes because they suddenly begin laboring under the misapprehension that their shoes are located on the ceiling. This is the time that Zoë believes I am violating the Geneva Convention on torture because I insist on her wearing gloves. All of this while we were supposed to be out the door three minutes ago. I am convinced that our neighbor is going to call social services on us at some point.

This evening, Zoë refused to eat her dinner. Instead, she insisted on only drinking her milk out in front of the tv. Being the horrible mother I am, I countered with eating her dinner in the kitchen or nothing. I did eventually get her to eat dinner; I had to bring dinner to an abrupt end when she decided to smear peanut butter everywhere and purposefully let milk spill out of her mouth.
Rachael, on the other hand, did a spectacular job eating her dinner. Her meltdown came later, when I prevented her from moving the trash can as much as she wanted. She’s been crossing days off her calendar, which hangs from a cork board above our kitchen trash. As she was moving the can, I became concerned that it would get knocked over, (it’s almost as big as she) and told her she didn’t need to move it anymore. Holy screeching crying fit, Batman! She screeched that dad didn’t do it that way and continued to scream incoherently through her tears. I sent her to her room to calm down. She walked to the stairs and continued screaming at me from the stairs. I told her again to go to her room, and that she could come back down when she was able to talk calmly. This was when she unleashed words which I thought I wouldn’t hear for at least a few more years: I’m the boss of me! You’re always telling me what to do! You’re just trying to make me like you!

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“I’ll never be like you!”

Now, let’s rewind… fwurp fwip wup squip squeeeeeee wheep wurp…. and do that again. This time, let’s add in an unhealthy dose of soul crushing fatigue and hyper reactivity to stimuli, such as loud noises. Trying to handle such drama and shenanigans is hard enough when you feel like you have the resources to be an adequate mom. Remaining calm when you almost can’t catch your breath because your fatigue makes you physically feel like a human pretending to be Atlas is something the IOC should make an Olympic event.

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Theory: Atlas dropping Earth because he has to scratch his balls is the real cause of earthquakes.

I’m sometimes successful in using what Mike calls your NPR voice to coax the girls into doing what they’re supposed to do. In fact, I prefer to remain calm so as not to wreck my voice and avoid pressure in my chest. But when you’re on your third or fourth time of asking your child to do something like, come here, you’re going to lose your cool a bit. The best part is when they say, Okaaaaaaay!, in an exasperated tone, like you’re the unreasonable one. If you weren’t so aggravated, you’d think it’s funny that you’re basically living out a scene from the Cosby Show. Come here. Come heeeeeere. Here. Here. Come heeeeeere!

I wish I had some sort of wisdom to share with others who live with fibromyalgia and ME/CFS and also have children, but I don’t. All I have is my hope that tomorrow will be better, that the kids will be more cooperative and I’ll be less screamy. Oh, and that their visits to the therapist when they’re older won’t be too expensive.

My Fibromyalgia Story

I feel honored and lucky to have been asked to share my fibromyalgia story over on Julie Ryan’s blog. She, too, is a fellow fibro warrior and an advocate for those who also live with chronic illness. I haven’t taken the time before now to share my entire story of how I came to a diagnosis of fibromyalgia. My hope is that my story will help someone else who is now in the position that I was once in: knowing something is wrong with my body, but not being able to name it. I believe that as more stories are shared, fibromyalgia will become less nebulous and individuals will be able to better advocate for themselves with doctors so they may get a correct diagnosis.

The Lightning Strike

BAM!

That’s how suddenly my headache hit. Like a lightning strike to the right side of my head, it was sharp and insistent as it cleaved my brain. I grabbed my head and groaned. Then, as suddenly as the pain came, it vanished. Unfortunately, it left a trace of it having been there: numbness on the left side of my head and face. My left arm also didn’t feel right. While I still had control of my muscles, it didn’t feel like they were responding normally. If I scrunched up the left side of my face, it seemed to take forever for the muscles to relax once I had released them. The best way I could describe the feeling is if you stretch out silly putty, it will not snap back into a lump like a rubber band once you let go. Rather, it slowly re-forms with some resistance.
Obviously alarmed by what was happening to me, I called my doctor’s office to see if I should come in. I was advised to go straight to the emergency room. I asked a coworker to drive me. Unfortunately, I couldn’t leave the office without minimal drama because: 1) Word always traveled faster than gasoline on fire when something was going on in that place, and 2) I couldn’t walk without the help of co-workers and the wall because of how woozy I felt. After a few hours in the ER I came away with a big shrug and an order to follow up with my doctor.

Well, we know what it’s not

Thus began months of trying to figure out what was happening to me. I continued to have sharp headaches and facial numbness. On top of that, my limbs always seemed to be on fire. My primary care doctor was concerned about MS and blood clots. As a precaution against blood clots, he had me stop taking my birth control pills. Once the blood work came back normal, I was referred to a neurologist. The neurologist sent me for an MRI which, after having to badger the office for the results, came back normal. I was unhappy with this doctor’s unresponsiveness, so I moved on to a new one. He sent me for another MRI. This one was more thorough, to include other places on my spine and contrast.
A word about MRI’s: I never considered myself to be claustrophobic. That was, until, I had an MRI. I was inserted into a tube with very little room around me. It felt like it was about to be sent into cryostasis. The process seems to go on forever. And holy fuck, is it loud! Fortunately, I was given headphones with music and there was a mirror strategically placed so I could see my feet and out of the chamber. So my only real problem was feeling the need to pee really bad. I was stuck, so of course I had to pee.
The second MRI wasn’t quite as……pleasant? I had had more blood work done recently, so I had a massive bruise on my right hand. My veins like to play hide and seek with nurses and phlebotomists. More often than not, they end up needing to draw from the back of my hand. The nurse trying to find a vein for the contrast on the day of the second MRI also had a problem tapping a vein. She tried and dug around in the crook of both arms and failed. So she did the only thing that made sense; she beat the shit out of the hand with the massive, very visible and painful bruise to get the vein to show up. That vein was tapped. This time I had neither headphones nor a mirror. Panic settled in my chest and my hand held the panic button tightly. I made it through without pressing the button, but it was a horrible 45 minutes. The icing on the shit cake that was that day? It was Mike’s birthday. While I had my MRI, he watched the memorial service for the victims of the massacre that had taken place at our alma mater, Virginia Tech.

I had looked at the comments on my copy of the MRI cd before I had my follow up appointment with the neurologist. I knew my results were normal. I felt depressed and defeated, not knowing what was hurting my body. I tried to explain this to the neurologist when he expressed surprise at my disappointment. That’s when he cut me off and yelled at me. He yelled that there were plenty of people out in his waiting room who were sick and wished they weren’t. With a heavy amount of disdain, he wrote an order to be tested for Lyme’s Disease and left. After that and all my experiences leading up to it, I was super excited and ran right out to have more blood work done so I could get back in the neurologist’s office faster and have more interaction with him!

Yeah……no. I gave up.

At that point, the symptoms had seemed to subside. So I let it go. We wondered if it was my birth control that had caused all of this. A few months later I had a miscarriage. I decided to try birth control again. My symptoms came back almost immediately. That settled it for us. No more birth control. The next July, we welcomed Rachael into our family.

It’s baaaaaaa-aaaaaaaaack

In January of 2012, I started having burning pins and needles in my head and limbs again. While I had had some fleeting episodes in the intervening years, (including a three week episode of debilitating back pain) this was the first time since the initial onset of symptoms that they were consistent and lasting. After a few months, back to my primary care doctor I went. This time I happened to see the head of the practice. She took me seriously and offered a few suggestions as to what could be happening. I had more blood work done, to include the test for Lyme’s. Once again, all normal. She gave me two options: a nerve conductivity study with a neurologist or taking Neurontin to make the pain stop. Having no desire to go through more dead end testing, I chose the drugs. I asked her if it was something I could take as needed, since my symptoms weren’t happening every day. She said yes. And then I did what most people do these days, I looked it up on the interwebs. Things like don’t suddenly stop taking Neurontin and could cause sudden, violent death did not make that option sound appealing. So I turned to chiropractic.

Sniffin’ on lemons and spittin’ in vials

“We believe the body heals itself. Do you believe that?”

Um, way to put me on the spot. They’re both looking at me. What am I supposed to say? Sure, tell that to anyone who’s died of cancer? Of course the body doesn’t always heal itself. Shit. It’s the voodoo I was afraid of. What do I say? What do I say?
“Um, no? Not for everything. I mean, maybe for some things. But not for…um….I don’t know. I’m open?”
Fuck.

This was my second visit to the chiropractor. In my first visit, I gave my history, had X-rays taken, and was told I needed to break up with Diet Coke. He believed it was possible I had aspartame poisoning which could, in part, cause the neurological symptoms I was having. At that point, I was so fatigued that I was averaging 4-5 12 ounce cans per day.
The X-rays showed that that my spine right at my neck was slightly out of alignment, so I was to start with two sessions per week. The chiro also agreed with my suspicion that it was hormones causing my neurological symptoms and wanted to do a month long test of my hormones. This involved a month long of spitting into little vials and freezing them. He explained that since a blood test is only a spot check of your hormones, submitting a month long sample would give a more accurate picture. (My OB/GYN said hormones wouldn’t cause these symptoms, but I was still suspicious as they seemed to spring up again around the time that I started having irregular spotting and bad cramping in between periods. That whole set of mess led to a diagnosis of adenomyosis.) You guys, you have no idea how hard it is to spit when it’s on command. Apparently sniffing lemons will help you salivate. So many a night there I was, parked on our couch, deeply inhaling over half a lemon and subsequently spitting.
As the weeks progressed, things did not getting better with the soreness I had come to experience in my neck and hips. In fact, in began feeling worse after sessions. In the evenings I walked around our house like a marionette because of pain in my hips. And then one day I was introduced to, dunh dunh duuuuuuuuunh, the Table of Torture. Supposedly it was a massage table. Supposedly for others, it’s five or more minutes in paradise. For me, it was pure agony. Rollers undulated up and down my back. It was tolerable, albeit still uncomfortable, in the middle of my back. But once it hit my lower back/top of my toush and my shoulder blades/neck, it felt like I had sharp boulders under me. When I said how awful it had been when my time was up, the assistant was genuinely shocked. It had been on the lowest and easiest possible setting.

I have a diagnosis

Not long after the Table of Torture, I stopped going to the chiropractor. I had been trying to stick it out, but the pain was getting to be too much. In addition, it took about an hour of travel each way and I had both girls in tow for each appointment. The stress of it all became too much for me. At the beginning of June 2012, I had a D & C to remove excess uterine lining that wasn’t expelled because of my adenomyosis. I thought that after surgery I was feeling better. That, however, was short lived. It was getting harder to participate in aerobics. The workout seemed to exacerbate my symptoms. It was also really painful in my lower back/butt to do sit ups or any kind of crunches. I couldn’t place my weights on my shoulders because of how tender they were. I noticed this at other times, too. Carrying in heavy grocery bags was murder on my shoulders and in the crooks of my arms. It was awful when I rocked Zoë to sleep at night. (And plenty of times it was all night. There was so much night waking, screaming bloody murder, and refusals to go sleep back in her bed. And, of course, more often than not, no one but mommy would do. More nights than I care to remember, I slept in our rocking chair because it’s the only place any of us could get some sleep.) I could barely play with Rachael and Zoë anymore because of how much it hurt when they climbed on me. And if I was on the floor with them, then they were climbing on me. I knew how bad it was getting when Rachael kissed me hard on the cheek one night and it made me scream in pain.

As August came to a close, I knew I needed to go back to the doctor. I was withdrawing from my family. I barely paid attention to my girls during the day. I lost patience so easily. I felt I was constantly screaming at them. I felt so exhausted all day, every day. The pain was becoming intolerable. After Mike had to work from home two days in one week to take care of the girls and me, I called the doctor. The doctor I had seen before had me see a different doctor. I hobbled in for my appointment that day, hardly able to look up. I had both girls with me, which made focusing extra difficult. When the doctor came in, I begged. I begged for help. I cried over how much pain I was in and how I just wanted it to stop. I said that I suspected fibromyalgia, that it all seemed to fit. Then my doctor said the words that I was dreading: How do you feel about going in for an MRI and evaluation with a neurologist and then reevaluating? I said no. I told her I had already been through two MRIs and they found nothing. I told her I had no interest in going through that again. She hadn’t realized I’d already had MRIs done. (Read the history. Come on.) But at least something different was happening in this appointment. This doctor who didn’t look much older than I listened to me. Not only had she asked how I felt about the MRI, she understood why I had no interest in repeating those steps. As she sat there, really looking at me in the eye, she asked me if I felt depressed and anxious. Well, yeah, I said matter of factly. Of course I was depressed and anxious. Starting to feel pain and knowing that it means I’ll be on the couch for the rest of the day with no means of alleviating it is depressing and anxiety-producing. My doctor was unwilling to call it fibromyalgia right away. First she wanted to see how I responded to medication. She explained that if I’m labeled with fibromyalgia, then doctors tend to be dismissive of other problems you may be having, simply chalking it up to fibro.

Where am I now?

I now have a rheumatologist to help me manage the fibro, while my primary care doctor manages my depression/anxiety. My cocktail of medications prevents me from having cocktails. Why they made medicine that prevents you from drinking when stress is a primary trigger for flares is beyond me. All of us are still getting used to this new normal. Mike has to remind himself that there are just some things I can’t handle anymore. It’s not a matter of sucking it up. While Zoë is old enough to understand pain and asks me if I’m okay, she can’t begin to comprehend that this illness is chronic. Rachael, on some level, understands that this is a chronic illness, but doesn’t really get how this affects me every day. She is frequently upset with me for not being able to handle having someone over to play after school. In one moment she’ll be the epitome of the oldest child, helping and caring. Quite often, she’ll offer to help me walk, (which is just holding my hand as we walk.) In the next, she’ll hang off of my neck in her hug or jump on me in a burst of exuberance. In the next, she’ll be whining and pitching a fit over why we can’t do this, that, or the other, not understanding that I’m not choosing to ruin her day by laying on the couch. Even I have to remind myself some days that I am sick. I wonder to myself why I’m so exhausted. Then it’s like, Oh yeah. Fibro. I have to force myself to pace myself and not overdo it. I have to force myself to forgive myself when the house is falling apart from a lack of clean dishes, laundry, and bathrooms. I have to ask for help. I have to fight back the notion that this isn’t real and that I’m over exaggerating; I have to fight back the thought that I’m just lazy or a hypochondriac, like my grandmother.

It’s not easy. Some days are better than others. Some days I get to experience a fresh new hell. Yesterday I spent the day with chest and back pain that made me worry about having a cardiac episode. Fortunately, I had seen on Twitter about costcochondritis, whose name makes me feel like it should come at a bulk discount and cheese samples.

Days like yesterday send me into fits of tears, but on the whole I try to stay positive and not let this define me. I’m not fibromyalgia woman. I’m Julie. I get stupidly excited over finding the right pattern of chevron for my friend’s baby shower. I’m Julie. I adore sweets like a Pooh Bear, but will also growl at you like a dog if you try to take away a good steak. I’m Julie. I’m a post-evangelical agnostic whose politics lean left of center. I’m Julie. I will correct you if you quote Star Wars incorrectly. I’m Julie. A gorgeous pair of shoes will make me say, Hello lover, like Carrie Bradshaw. I’m Julie. I’m a sarcastic introvert who screams at the tv when the Hokies are epically failing and they need to break the other running back’s knees. I’m Julie. I like tabletop gaming and am a terrible loser. I’m Julie. If I believe you to be a douche canoe, I will not be able to help antagonizing you so that you come down a peg or two. I’m Julie. I have never learned the girly art of tact and have therefore offended a lot of people accidentally. I’m Julie. The words I say when I offend those people usually end up haunting me for years. I’m Julie. I’m a college educated wife and mother of two wonderful girls, who I hope grow up to pursue what they love and kick ass while doing it. Oh yeah. And I live with fibromyalgia.