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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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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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.