Insurance companies like to play doctor

On Sunday, Mike came into the kitchen with a piece of paper in his hands.  He said, “Now, Julie, don’t freak out,” which, as we all know, is the universally accepted way to guarantee that whoever is about to receive bad news will be totally calm and collected.  My body tensed up and I offered a wary, “Ooookaaaaay?”
The letter was from our insurance company, United Healthcare, cheerily telling me that in order to save money, they were no longer going to cover my Lyrica.  The medicine my doctor prescribed for me to treat my fibromyalgia.  The medicine that has made the difference between my ability to walk or not.  BUT!  Not to worry.  I would have the “opportunity” to try other lower-cost alternatives now!  Once I sampled at least three drugs from a veritable buffet of pharmaceuticals, I could then be allowed to resume taking Lyrica.

I began sobbing.  Once again, the insurance company presumed to know better than the doctor and the patient.  Profit shares were more important than patients.  While my body isn’t in perfect condition, I have finally reached a point where my functionality, pain, and energy are better than they’ve been in a long time.  A combination of physical therapy, acupuncture, therapy, and a truckload of medicine and supplements fit together in a Jenga tower of healthcare for me.  If one piece is removed, everything will come crashing down.  Additionally, Lyrica causes weight gain for patients genetically predetermined to gain weight on such medications, like me.  The last time I went off Lyrica to try gabapentin it was an abysmal failure.  The more I took, the more pain I experienced, to the point of not being able to touch my feet to the floor, let alone walk.  So back on the Lyrica I went.  My body went, Oh, gee, this is a new drug that’s telling me to give Julie an additional 20 pounds.  To try and fail with another drug would guarantee more weight gain for me, making my body virtually untenable.

I looked at the list of drugs I needed to try. It was laughable to me.  If ever there needed to be more evidence that so many believe fibromyalgia to be all in the patient’s head, this list of drugs proves it.

1. Cymbalta
An anti-depressant that I’m already taking.  While it is a drug that is specifically marketed to help with pain caused by depression, it stopped managing my pain within a few months of beginning the medication.  Anecdotally and according to doctors with whom I have spoken, this is common with Cymbalta.

2. Gabapentin (commercially, Neurontin)
It does work for some, but you have already read how it worked out for me.

3. Effexor XR
An anti-depressant.  I’m already taking an a anti-depressant.  Two, actually.  I don’t need a third.  It can be used off-label to treat diabetic neuropathy, but medications that are actually meant to treat that condition are preferred.

4. An anti-depressant, like amitriptyline
Again with the anti-depressants!  Oy!  Depression doesn’t cause fibromyalgia; fibromyalgia causes depression.  Wouldn’t you be a tad bit depressed if you were in constant pain, knew you were going to be in constant pain for the rest of your life, and could no longer participate in life the way you once did because of your pain and fatigue?  This is also a potential off-label treatment drug but, again, I don’t need a third anti-depressant.

5. Savella
What’s the problem with Savella?, you may ask.  After all, it’s a drug that specifically treats fibromyalgia.  Here’s the thing.  I am in fibromyalgia forums where people ask about experiences with Savella all the time.  Out of the hundreds of people who say they’ve been on Savella, two have had a good experience.  Two.  Noooooow, I’m not a bettin’ woman, but those don’t seem like terribly good odds.  One of the bad side effects of Savella is terrible nausea. I am a complete pussy when it comes to nausea.  Give me pain any day over even the slightest bit of nausea.

Once I was able to pull myself together, I began Twitter-shaming United Healthcare as quickly as my brain could think and my fingers could type.  On Monday, once I explained that trying new medications is not like sampling ice cream before you choose your cone, I was given the prior authorization number for my doctor to call, (which was conveniently left off of the letter) to tell insurance that I need to be on Lyrica.  Because the prescription wasn’t enough.

Via Garfunkel & Oates

Via Garfunkel & Oates

Namaste, Spoonies

 

Panda is more flexible than I

 

I had my first ever yoga class last night.  It’s supposed to be gentle yoga, but it smacked me up hard.  I am now becoming one with my heating pads.  I’m taking the yoga class through the nearby rec center.  It’s a really small class, only 7 of us.  And I’m not actually the youngest in the class!  Huzzah!

I laid my thin yoga mat down on the hardwood floor, sat down, and said, “Nope,” and grabbed a thicker communal mat to lay under mine.  I’ve always hated sitting on the floor, especially without something to lean against.   So I sat there, waiting for class to begin and trying to figure out how to position my body — Criss cross applesauce, butterfly, pike, bent knees, pretzel sit.  None of them felt comfortable, especially since I was also trying to hide how jacked up the bottoms of my feet were.

Belly breathe

Class began with diaphragmatic breathing, which is easy for me.  As long as I didn’t have to do anything else while doing this deep breathing, I was golden.  But, of course, yoga doesn’t work that way.  Very quickly I found myself trying to remember to breathe, rather than hold my breath, as we did core exercises and my body melodiously chanted, Fuu-uuck youuuuu.  For the most part, I had to modify the poses.  Each time I lifted my arms toward the heavens, I felt like Winnie the Pooh doing his daily exercises.

It was like a sauna in the room before class began, so I was drenched in sweat by the time we were doing mountain pose — I was a strong, sweaty mountain.  I’m pretty sure I lost a pound just in water weight.  The skinny woman next to me was wearing long sleeves and wasn’t breaking a sweat, while I was wiping my face and fanning myself.  (I probably could have used a squeegee.)  I felt like offering her some of my body fat to help insulate her, so she too could sweat out her stress, toxins, and the Easter candy she ate.

As the class stood, doing tree pose, I started feeling really good.  I stood there, staring at the fuzzy, tan room divider and felt fantastic.  My body was calm and my mind was quiet. I was a joyous tree, swaying in a gentle breeze.  Of course, I didn’t have my leaves up while I was doing this swaying, but that just means that I was joyous to the very core of my trunk.  So really, if you think about it, I was the best a tree pose because I didn’t need leaves to show how good I felt through swaying.

As class began to wind down, we made our way down to our mats.  From a seated position, we engaged our core by slowly lowering our bodies to a laying position.  I was immediately reminded of one of the reasons I had quit aerobics and strength training; the fibro tender points on my butt were pressed.  I did my best not to yelp in pain, and adjusted my breathing to the rhythm of Fuck.. fuck.. owwwww, fuck.. fuck.. owwwww.  But I had finally made it to the end — deep breathing while lying on my back. I was a little annoyed that I had to relax with my palms facing the ceiling, which isn’t a relaxing position for me, but ¯\_(ツ)_/¯ .  So I breathed and stared at the dim ceiling and listened to Enya’s May It Be and thought, That’s right, Enya.  I am like Frodo.

Talking calmly through emergency room-level pain

Today, I’m pretty sure I was stabbed with white-hot pokers while I slept.  I talked to my family normally through, what would be for a “normal” person, pain worthy of sending them to the ER.  This is slightly inconvenient, as Zoë’s birthday party is this weekend, and the house is a complete wreck.  (Although the house isn’t as big of a deal, so long as my father-in-law doesn’t mind stepping around boxes, toys, and crushed goldfish crackers and a kitchen that smells like a restaurant dumpster.)  I know the more I do this, the easier and less painful it will become.  And anyway, you know what they say:
Whatever doesn’t kill you makes you die a slow, agonizing death in the alleyway where it shivved ya.

Maybe Mommy Should Have a Time Out

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Image via Shutterstock

I’m sure that my mornings are no different than anyone else who has kids in school. They are stressful, hurried, and full of yelling. My girls and I have an arrangement: they give me reasons to lose my temper and I, in exchange, give them plenty of material for when they’re in therapy as adults. While the specific material varies, the skeleton of each morning’s script remains the same. Since we rehearse this almost every morning, I’m fairly confident that we could make a good showing on Broadway.

Off stage: Rachael plays with her sister, rather than brushing her teeth and getting dressed. Mother enters, stage left, and finds that Rachael is just now taking off her pajamas.
Mom: Why are you just now getting undressed?
Rachael: Zoë distracted me!

Zoë pulls her heart blanket from the hamper. It needs to be washed because she spilled nail polish on it and was treated with acetone. Mom takes blanket away. Zoë has a meltdown.

Zoë visits Rachael while she is supposed to be brushing her teeth. Rachael chats with Zoë. Mom yells from off stage.
Mom: Rachael, stop talking and brush your teeth!
Rachael: I am!

Zoë runs away and refuses to following instructions. Mom is helpless, as she is on the toilet. Mom commences pointless yelling.

Rachael has a difficult time putting on her socks. Mom grabs socks and puts them on Rachael’s feet.
Mom: If you were paying attention, you wouldn’t have so much trouble.
Rachael: I was paying attention out of the corner of my eye!

On the way to the bus stop, Zoë squats and declares that her shoes hurt too much. Her posture resembles that of a donkey that has refused to move.

Zoë refuses to remove her hat and coat upon returning home.
Mom: Zoë! Now! One…
Zoë: Two…..

And, scene.

I tend to lose my patience easily, especially when it’s the same bullshit day after day. I could honestly pre-record the top ten things I yell and go to a spa; it would be as equally effective. I do need to find a way of controlling my temper. Not just for them, but for me as well. With fibromyalgia, my body feels the stress and anger. Most people experience increased heart rate, blood pressure, tension, and quickened respiration. I experience all those things too, but the stress manifests itself within my muscles. My skin. My bones. Even though regular body responses have returned to normal, the skin in my right arm is still on fire. Sometimes it means that muscles in my legs will begin to feel as though they are being stabbed, making it difficult to walk. Pain that tingles and rips through my chest used to worry me that I was having a heart attack. Now I know that my chest is just pitching a fit because I’m upset. My favorite, though, is when I think I doing alright and have come back down, but sudden numbness, tingling, and burning in my face informs me otherwise. Even while writing this post, I realize that my body believes me to be a cunt for stressing it out, and so is giving me all those things at once.
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Image via film, Camp Takota

I don’t have any great solutions or wisdom to impart to other parents facing the same problem. If I did, I’d bottle that shit, charge $75, and get a book deal out of it. I suppose that I just wanted to commiserate with my fellow Spoonies and to share with others what it’s like for me and others like me. It really is best to remain as calm as possible in order to avoid pain flares. Oh, and I guess it’s important not to damage your child’s little spirit. When you’re unable to maintain control, then you end up like my girls and I this morning- girls crying because their mom lost it and said that, with as much as I yell, the neighbors are going to call social services and take the girls away. Damaged spirit: check! Mom, knowing she’s gone too far, apologizing and hugging her girls close, telling them that no one’s taking them away. Mom, still in pain hours later because she lost her temper and was a complete and horrible asshole toward her children.

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.

A Spoonie Does Disney: Part 3

This is part 3 of a long post I’ve broken up, detailing my experience at Disney World resorts and parks as a spoonie. Here are parts 1 and 2.

Swedish massage
With the exception of the massages I received in the hospital after my girls were born, I’d never had a real full body massage. Mike suggested that I get one, and I’m not one to argue when encouraged to pamper myself. I opted for the Swedish massage, as it seemed to be the less intense of the two types that were offered.
On the afternoon of my appointment, I walked into the bright lobby of the Ship Shape Health Club & Spa and was led by the receptionist to their massage waiting area. Once we walked through the door to the massage area, I was instantly transported. It was as if I had stepped through a wormhole into tranquility. The light was a soft turquoise and dim, the room gently lit by candles and a beachy chandelier. In the waiting room were several high-backed chairs that I could have easily snoozed in. I was encouraged to partake of the fresh fruit and orange-infused water on a counter in the room.
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If you ever go and decide to book a massage at the Ship Shape Health Club & Spa, ask for Mary. She was my fabulous masseuse. I told her that I have fibromyalgia, and she knew exactly what I lived with and needed because, as it turns out, her mother also lives with fibro. Over the next 50 minutes, she was able to help me relax and work out a good deal of the pain I’d been dealing with lately. She was able to unlock my hip, doing so without further aggravating the pain in my back that was causing it. (She told me she could tell my hip was bothering me by how I was laying on the table.) And, can I just say, warm, wet towels wrapped on the feet….heaven! By the end I had to keep reminding myself where I was so I wouldn’t think out loud, because of how relaxed I felt. I was also proud of myself for not having farted, drooled, or snored.

During my time there, I never felt rushed. In fact, I was encouraged to take my time and relax. Once my massage was over, Mary gave me more water and led me back to the massage waiting area. She made sure that I felt as though I could stay there and rest as long as I needed. I definitely felt as though I was the only customer who mattered, and that my individual needs were met while at the spa that day. I’m pretty sure that I need to get my rheumatologist to write me a prescription for massages so I can try to get insurance to pay for them. I’m thinking a dosage of 1-2 per day should do the trick.
I left the spa feeling loose and light and almost daydreamy. The people who walked past me and squealed at the pool were just fuzzy background noise. My mind was quiet; I wasn’t having to think about any pain that was plaguing me. I felt ready to take on the convention event at Universal Studios that night and the Disney parks in the coming weekend. I mean, I was fixed! She cured me, especially of that pesky hip!

Naturally that meant I had to go and break it again.

To be continued…

A Spoonie Does Disney: Part 2

This is part 2 from a really long post about my experience at the Disney World resorts and parks as a spoonie. You can read part 1 here.

Speaking of food, plenty of it was available during my stay. There were several restaurants within the hotel itself, (which is attached to the Beach Club Resort.) Just make sure you have reservations well in advance if you don’t want to risk having to wait to get a table. Several mornings I popped down to the Captain’s Grille to get breakfast. While they had a well-stocked buffet, I opted for ordering from the menu all but one time. My hip, legs, and feet had been killing me, so I had no desire to get up and go get my breakfast. The food was pretty good and, considering it’s Disney, wasn’t horribly overpriced.
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Citrus-scented challah french toast with fresh strawberry compote, white chocolate drizzle, and lavendar-infused syrup anyone?

A boat ride away were Boardwalk-style cart vendors with hot dogs, corn dogs, margaritas, pizza, and funnel cake and more sit down restaurants. I was disappointed that Cat Cora’s restaurant was closed for renovations.
And if you can’t leave your room because you can barely walk, there’s always room service. Yes, it’s a bit overpriced, but the prices aren’t bad considering that it’s Disney room service. And the food you receive is actually good.
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Oh, nothing. Just pan-seared chicken with butternut squash pureé, pomegranate reduction, pumpkin seed pesto, sautéed squash, and fergola.

A Spoonie Does Disney: Part 1

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Last week I got what I’ve needed for a very long time: a vacation. Mike had a conference for work down in Orlando, so I tagged along. The plan was that Mike would do his conference thing, I would do my sleep in as late as I wanted, order room service, get a massage, and adopt an almost monk-like vow of silence thing, and then we’d hit the Disney parks on Friday and Saturday. As I prepared for the trip, I wasn’t quite sure how I would handle Disney as a spoonie and what sort of accommodations Disney would provide, should I need them. Now that I know, I thought I would share them with the rest of my fellow spoonies.

On Tuesday afternoon we left our loud, needy, and whiny quiet, well-behaved, lovely children in the capable hands of Mike’s dad and my mother and flew down. The Disney Yacht Club Resort was one of the hotels that the company who put on the conference contracted with, so we decided to stay on property there. Because we stayed on property, we were able to ride on the Disney Magical Express from the airport to our hotel and Disney took care of picking up our luggage and delivering it to our hotel room. As a spoonie who had just had a really uncomfortable flight and wanted nothing to do with lugging heavy bags around, this was a fabulous free service. It did take longer for us to get to our room and for our bags to arrive than we had hoped. Fortunately, we were prepared and had packed a change of clothes in our carry ons so we were dressed appropriately for our dinner reservation at The Yachtsman steakhouse.

Once we stepped into our room, (and I flopped on our bed) I knew I was going to be really comfortable in the coming week. The bed was soft, but firm, and I had access to several pillows, as we ended up having two queen beds in our room. My only real complaint was that there wasn’t really an accessible outlet to plug my heating pad into while laying in bed. Our room overlooked a lawn and small gazebo that was used for weddings. Across the lawn was the lake and dock where boats ferried visitors across the way to the Boardwalk and to both Epcot and Hollywood Studios.
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It’s impossible to wake to a sunrise like this and not feel peaceful.

Serenity Now
With the exception of some busy times in the lobby, I never felt overwhelmed by people or noise. Even their expansive pool never felt crowded, nor filled with too many sounds of screeching children. If part of your exercise routine, as someone with chronic pain, is swimming, you’ll definitely be able to do that here. Actually, there are two pools: the large Stormalong Bay and the smaller and more secluded Admiral’s Pool. Dotted around the pools were one of my favorite features, the hot spas. For me, the hot water and water jets were perfect for relaxing my muscles. (Especially after Mike talked me into swimming in the pool one night when it was only in the 60s. I may have waddled quickly to my towel mumbling, Coldcoldcoldcoldcoldcold, a la Anna after tumbling into the stream in Frozen.)
Located at the pool was quick service food and a fully stocked bar, so I didn’t have to go far to have a yummy lunch and scrumptious adult frozen drink. Any spoonie knows that, the less energy you expend, the better. It was nice to not have to leave the pool, go to my room and get dressed, and then find some lunch that was worth eating.
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My view as I ate my lunch.

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Other peaceful places…and a Mai Tai.

The post was getting too long, so I’ve broken it up into 5 parts. More A Spoonie Does Disney to follow, including my thoughts on food, services, and accessibility and mobility to follow.

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.

Tell Tales: A great game for spoonies and their kids

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Rachael has always liked making up stories. Lately, Zoë has fallen in love with it, too. In particular, she has become enamored with fairy tales ever since Mike made up a story for her one night before bed. Princess Zoë not only saved Prince Stuart from the dragon, also named Stuart, she also engaged in diplomacy with extremely large beavers whose dam was preventing water from getting to her palace garden.

So I’m glad that we gave Rachael Blue Orange’s Tell Tale Fairy Tales game for Christmas. The girls are able to make up stories based on the pictures: a pirate ship; a fire-breathing dragon; a magic carpet; a woodland cottage, just to name a few. They can sit quietly and insert themselves into their own traditional fairy tale. Or they can play together, layering pieces of the story on top of one another, making each and every story unique.
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What’s great about this game is that it’s also an easy game for us spoonie parents to play with our kids. All it really requires is that you be conscious and are able to open your eyes long enough to see which card you have to play next. Yesterday I laid on the couch while Zoë and Rachael sat across the table, and we wove fun, quirky stories together. I loved hearing their imaginations at work. It was wonderful for them to be excited about something other than tv and that I was able to engage with them without having to exert energy I didn’t have. I always feel guilty for having to say I can’t when they ask me to play. Fortunately, with this game, I won’t have to say no nearly so often.