Fatigued or Lazy?

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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.

But, first…

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I began thinking about a nagging feeling on Sunday morning while I lazily drank my coffee. It wasn’t the first time I had felt it, but it was the first time I was able to snare it with words. Even as I write this, the feeling keeps trying to break free and elude me once more.

If we rewind, it actually began on Saturday. I was stuck in bed all day. I could barely muster the energy to get up and walk 12 paces to the bathroom to pee. At other times, I didn’t have the strength to lift the remote and re-watch episodes of Doctor Who. I felt sad being separated from my family. I wasn’t able to go to Family Day at Zoë’s preschool. I didn’t have enough energy to cry about it.
I was in bed because I hadn’t really slept the night before. Any fitful sleep I had was filled with dreams. In between dreams I would awake to toss and turn, marinating in hot and cold sweats. At one point Zoë woke me up by smacking her butt. She had gone potty and wanted help getting her undies and jammie pants back on. On top of that, I had spent the previous two days going whole hog on household chores. I knew I had overdone it the first day and was going to pay for it, so I decided to fly my damaged spacecraft into the mothership and take those sons of bitches with me. Although, in this case, those SOBs were laundry and dishes. Any spoonie will tell you that what I did was a bad idea. But I did it and paid the price on Saturday.

All of this left me feeling like getting out and spending time with my family on this gorgeous, fall Sunday morning. But, first, I needed to take shower.
Suddenly I realized that that was the frustration I’d been feeling lately. I always had things I wanted to do, but it always seemed that there was a But, first… requisite.

I want to spend time with my family. But, first, I need to rest so I can have enough energy.

I want to write. But, first, I need to clean up the kitchen.

I want to be able to put out pastry chef-quality desserts. But, first, I need to learn basic techniques.

I want to take off and travel, to experience the world. But, first, I need the time, resources, and a little courage.

I want to create an exercise program for people with chronic pain. But, first, I have to do the grunt work and dismiss the nagging fear of failure.

I want to break free from the reality of my broken body and monotony of suburban life and do something different, dirty*, and daring. But, first, I have to figure it what that something is.

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I just want to sing!

I realize that a lot of this is standard white whine. Some of it is depression. And some of this is strictly reality, and I need to suck it up and accept it. I don’t have any answers for how to deal with the frustration, nor a way forward. I can’t just break free of it through sheer force. Pulling with all one’s might AND winning the tug of war just leads to stumbling and falling. I have to get it to let me go. I knew that, as I experienced these feelings, I was going to have to battle them and quit ignoring them. But, first, I had to be able to name them.

*as in messy and complicated, not naughty

Mary’s Story

My friend, Mary Brünhilde, has been gracious enough to allow me to share her story of depression with you all. I have copied and pasted her story below.

Since Robin Williams’s death, I have a few friends who have posted some very sweet statuses, reassuring all their friends that if they are ever depressed, and need help, they will be there for them. This is a very admirable response to an tragic event like a suicide. But I want to put it into another perspective for you all now, by coming out of the depression closet.

I don’t remember a specific point where I became depressed. I remember feeling very intense emotions, and being a melancholy teenager, but who doesn’t? At that time those feelings only caused destructive behaviors, but not suicidal thoughts. The first time I felt bad enough to ask for help, was my freshman year of college. I got free counseling from graduate students in UNCG’s counseling program. It was enough to provide me with some coping skills, but never stopped the depression. There were good days and bad days. I didn’t want to believe that anything was really wrong.

After college I became increasingly volatile. I had no idea why I was so miserable, because if you looked at my life then, I had no reason to be. The sadness was a physical pain that I could feel, like a permanent body ache. I could function on a daily basis, but it was all an act, and a lot of work. I didn’t have money to pay for a counselor, so in desperation I signed up for a clinical trial of an anti-depressant that I saw advertised on TV. I figured it would get me some help for free, even if the drug ended up not working.

That clinical trial, and the doctor who treated me, probably saved my life. I actually was given the placebo (which I had a feeling I knew), and at the end of the trial the doctor said he would continue to treat me until I was better. He started me on a real anti-depressant, and counseling. I cried in the car after my appointments because I was relieved that someone actually believed that something was wrong with my body, and not just in my mind. After a few dosage adjustments, the medication worked really well. I began to feel happiness again when I smiled- it was like a plane flying out of the clouds, and like my lungs could finally fill all the way with air. Once my thyroid problems were diagnosed and treated, I felt like I had a new body and brain.

It would be great if that were the end of the story, but depression is not so black and white. I would feel good for a while, so I’d decide I didn’t need my medicine anymore. Then a few months later I would feel physically and mentally awful, and go back on it. Once I got pregnant, my new doctor at the University of Michigan spoke with me about weighing the risks and the benefits of staying on the medicine while pregnant, and nursing – so I just quit cold turkey (a big no-no). I suffered through, but this time the depression felt like I was standing behind a glass wall, watching the world happen around me. I used to call it my gerbil ball. I would laugh at your joke, and not feel any mirth. I would snap at people for the slightest annoyance, and become enraged at, well, anything. So I always went back to the medicine. Second pregnancy- did the same thing.

I never told people about my depression, because they were so judgmental. I’ve even heard a family member say the words “they need to just get over it” after hearing a commercial about depression on TV. I thought if I told people that I had depression, they wouldn’t want to be my friend, or wouldn’t hire me for a job. They would just think I was not tough enough to handle everyday life. Or just complaining about nothing. So it stayed tucked away in that one pill I took everyday….or almost everyday.

My current doctor looked over my health history, and had a stern talk with me about my pattern of deciding I didn’t need the medicine. I told her that I don’t want to be dependent on taking a pill everyday for the rest of my life, and she asked if I were a diabetic, would I refuse the insulin too? She explained that my brain needs this medicine to correct an imbalance- and it’s not shameful or anything I’ve done wrong. It is just how my body works- and if one pill a day is all I need, then I’m comparatively lucky.

I’ve never tried to kill myself, but trust me when I say that I understand why someone would. When your body and your brain hurt so much, and nothing you do makes it better, you just want it to stop.

So- why am I telling you all this? Why put all my dirty laundry out for all my friends and family to see? Because you need to know this about me. I’m not ashamed. I’m telling my truth, so that you can all keep your collective eyes on me. My village is spread far and wide- you are not my next door neighbors anymore -so from wherever you are, just know, and understand. God forbid one day I need serious help, someone will see it, maybe even before I do.

Lastly I have a challenge. This is not a bucket of ice water, or even donating money. I just challenge all my friends and family who have depression, to tell your truth. Notify your village. Help me help you. Share this last section with your story, and maybe if we all just keep an eye on each other, we’ll all be okay.

When it comes to mental illness, your words matter

Several nights ago, Mike and I were watching Who Do You Think You Are? We have gotten into the show because Mike’s been working on tracing and establishing our roots. The episode featured Gwyneth Paltrow tracing both sides of her family. What grabbed me in particular was the story surrounding her great grandmother, and what led to her neglecting her children. (The untimely deaths of her mother, brother, and 3 year old daughter. The death of her daughter was followed three weeks later by the birth of her next child.) I was disheartened by Gwyneth’s initial responses to this information. She laughs upon learning that her great grandmother was a hoarder. She goes on to refer to her great grandmother as “crazy” and “ambivalent” toward her children.

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What Gwyneth said troubled me in a couple of ways. The first involves how I identify with her great grandmother as a mom. I constantly struggle with the guilt and shame of not always being there for my girls because of my pain, fatigue, and irritability. Fibromyalgia causes pain that can prevent me from getting on the floor to play. The fatigue from the fibro and depression leaves me unable to keep my eyes open to read a book and slow to respond when they call out for breakfast from downstairs. The irritability from my fatigue and depression sends me seeking refuge from the noise and literal tugging from two different directions. If I don’t get away, I may lose my shit over something insignificant again.
The thing is, I want to be there for my girls all the time. I want to be a lucid, fully present super mom. Unfortunately, I can’t. The body is unable and, quite frankly, the spirit isn’t always willing. I wonder how much of that was present in Gwyneth’s great grandmother. I wonder if she ever looked at her kids and wished she had the strength to bathe them or clean up all the piles of newspaper. I wonder how often she wished her children and the world would just go away so she could have some peace in her mind and soul. I wonder if I will be misunderstood, if my mothering will be viewed through a lenses of neglect, ambivalence, and “crazy”.

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The next thing that troubled me was the language that Gwyneth used. The word “crazy” is used so casually in our world, without a thought to its implications and destructiveness. But for those who live with mental illnesses, the language and attitudes of others could literally be the difference between life and death. I’m sure you can imagine how hearing words like “crazy”, “unbalanced”, “weak-minded”, or “insane” coming from someone you trust would put a full stop on revealing to them the darkest, most vulnerable parts of yourself to ask for help. When people feel like they aren’t safe in turning to anyone for help, it could ultimately lead to a downward spiral of self-destruction that only stops when they can’t go any lower and/or they are tired of the spinning.

How do we fix it?
The stigma of mental illness must be wiped out! The stigma of mental illness is born out of misinformation and ignorance. This leads to fear. And what do people do when they’re afraid? They shut it down. They trivialize the thing they’re afraid of and push it away with words like crazy and “get over it” attitudes. During my freshman year of college, I admitted to a guy I was with how depressed I was feeling. His response? He basically told me to buck up, suck it up, and get over it. Just be happy.

Here’s what people need to understand. Mental illness is just that: an illness. The only difference between it and a broken leg is its location. You would never tell someone that they’re crazy and to walk off a broken leg. No one tells someone with cancer to just get over it. And just like with cancer, some people are lucky and make it through alive. Others are not so lucky.
Some people, like Robin Willams, lose their fight with mental illness and take their own lives. We must be careful in our attitudes toward suicide. Of course, suicide is never the best option, and it should never be made out to be as such. Many people, including me, believe it is a choice. But what is so often misunderstood is the kind of choice it is. It is not lucid. It is made under an incredible amount of duress. It is never made lightly. It is not made with a mind that is whole and well. And when you’re to the point of making that choice, you feel as if there really isn’t a choice at all.

We must not be glib with our words and attitudes toward suicide, especially if you have never experienced depression yourself or been close to someone who has. Saying that it’s a permanent solution to a temporary problem or that someone is a coward for contemplating or committing suicide will just hurt those who are already hurting and send them deeper into the darkness.

With the death of Robin Williams, depression and suicide are at the height of consciousness. Please, let us take this opportunity to be more understanding of others. Be slow to speak and quick to listen. Learn what causes depression, (Hint: it’s not a lack of faith or joy) what perpetuates it, and how to best help someone when, and even before, they ask for help. Realize that your words carry weight; an off-handed remark or pointed conversation can cause irreparable damage. Do not presume to know how someone is feeling or know their story simply because you experienced depression. And if you do hurt someone, make amends.

To those who live with depression: know that you are not alone in the world! We are many, we who suffer in silence for fear of being vulnerable, misunderstood, ridiculed, judged, rejected, and silenced.

If you are brave enough to share your story, share it! For all you know, you could be the faint light in the crushing darkness that saves someone’s life.
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If you would like to share your story here, please let me know. If you wish to remain anonymous, I will protect your identity.

There is no shame in depression

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

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

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

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

(Ending a sentence with a preposition? Maybe.)

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

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

Motivation is a double-edged sword

I’ve been more depressed lately. I could tell because I was becoming more withdrawn, more exhausted, and more screamy. My motivation to do anything had also taken a nose dive. I knew it was time to see the doctor again to increase or change my meds. First, I saw my primary care doctor, who had prescribed Cymbalta in the first place. She told me that studies show that the efficacy of Cymbalta didn’t change with an increase in dosage from what I was taking. I also asked for, and received, a referral to a psychiatrist. It was time to take it to the next level.

When I met with the psychiatrist, I mentioned what my primary care had said about the efficacy of Cymbalta in dosing. She screwed up her face like it was the dumbest thing she had ever heard, (in response to my primary care, not me) and said that it does work past where I was, otherwise they wouldn’t make doses that go up to 120mg. So, she increased my dosage and got me set up with a therapist in the office for talk therapy.

Holy crap, was my primary care wrong. Increasing my Cymbalta has been a big ole bag of helpful. I feel happy and the desire to be engaged again. I’m less fatigued and a little more clear-headed. My patience doesn’t deteriorate to shrieking flying monkey in 2.3 seconds now. And I feel motivated, whether it be to engage in relationships or do things around the house. Yesterday I finally took the initiative to clean up our basement steps, where everything to go downstairs gets dumped, and put together the shelving I bought.

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This is what classy, non-hoarding organization looks like.

This motivation to engage in normal life comes with a price, though. While the increase in Cymbalta makes me feel better, the fibromyalgia is still ever-present. I’m still fatigued and I’m still in pain. The newest incarnation of pain is in my feet and ankles. Everything is swollen, it feels as though my legs are crushing my ankles, and it feels as though the bones in my feet are slowly breaking every time I try to stand and walk. The pain reminds me of the time Mike and I went to see Spamalot in DC. I had fantastic shoes to go with my dress. Unfortunately, what I didn’t realize when I bought them was that they were so fantastic, the pain of wearing them would leave me standing barefoot in Metro Center. It’s too bad I can’t hang my feet on my fingers like some cute, strappy sandals.

I’m sure this has been made worse by all my Cymbalta-assisted flurry of activity. It’s really hard to see all that there is to do, have the motivation to do, and force myself to sit and rest because my feet are being little cunts. But that’s exactly what I’m trying to do today. I have pain patches attached to my legs, ankles, and feet, and I’m taking breaks from being on my feet. So far, it seems to help if I do chores in short bursts; I’m accomplishing tasks without over-taxing my body. At least, that’s the status as of now. We’ll see if that continues throughout the day. The goal is to have the ability to stand long enough to cook dinner at the end of the day.

A thrimple is just about right

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I haven’t been blogging too much lately. I’m in a pretty negative place, overall, right now. Right now, I can’t see past the darkness of my depression and the crushing pain of my fibromyalgia. Because of this, I haven’t felt like blogging. It’s hard to find something you want to share when you feel joyless and detached. I almost get angry when we have beautiful spring days like yesterday, but I’m too fatigued and in pain to be able to go out and enjoy them. I say “almost” because I feel like I should be angry, but I can’t work up enough of the energy I need to care that much. Also, I haven’t wanted all my blog posts to be whiny and negative. I want to write about it a little bit today, though. I feel like, if I don’t, I’ll be all Elsa with a “swirling storm inside.” And then I’ll set off an eternal winter, which will just end up leaving me trying to find snow boots in April that fit the girls.

So, Julie, whaaaaaat’s happening?
This past weekend was nice, in that our family traveled to Yorktown for the baptism of our goddaughter, Rosalyn.

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The godparents.

It was lovely to see our friends and our other goddaughter, Elizabeth. And the excitement of the girls upon discovering that the Easter bunny had visited our hotel room was pretty magical. Rachael literally woke up and gasped.
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And then she pestered us all day to eat her chocolate bunny.

But the trip did take a lot out of me. I was so sore, I could hardly move yesterday. The fatigue left me feeling nauseated. I couldn’t take Rachael to the bus in the morning. I think all I really managed to do yesterday was feed myself and the girls and put Zoë down for bed. It’s always frustrating, no matter how used to it you may be, when you have a flare that bad. Fortunately, someone else was leading the Girl Scout meeting we had last night, otherwise I don’t know what I would have done.

I’m also feeling pretty discouraged about my weight. I know my medication got me to this place, but eating bags of jelly beans and other junk as comfort is certainly not my medication’s fault. I’ve been able to lose weight before, but now I have no idea what to do because I can’t exercise like I used to. I was finally able to sign up for a gentle yoga class that was at a reasonable time, but it was canceled for lack of interest.
The bonus feature of this low body self-esteem is having acne worse than I did when I was a teenager. I mean, Sunday morning, I woke up with a thrimple! That is, a throat pimple. Seriously. Dead center, right over my esophagus. If that isn’t the universe saying Fuck you!, I don’t know what is.
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Real no makeup selfies. I KNOW! The resemblance is astonishing! So glad that Gwynnie is also keeping it real!

I went for a follow-up with my rheumatologist today. She had me re-test my thyroid, since my T4 had been at the lowest end of normal at the last visit. Today had the same results. T3 and TSH normal, with T4 being as low as possible while still within normal limits. She’s going to have me try the lowest dosage of thyroid medication to see if it helps, as she feels I’m headed toward hypothyroidism anyway. At the end of the appointment, she told me to cheer up. In that moment, I wanted to smack the caked-on makeup off her collagen-injected face so hard. CHEER UP?!?!? If only it were that fucking easy! I would love nothing more than to feel optimistic about finding treatment that will work well enough for me to not feel like shit on a constant basis. I would love to be able to just snap out of the funk which has enveloped me. Honestly, even with all the painful hugs, swollen chest muscles, and feet which feel as though I’m walking on knives, sometimes the thing that hurts the most is the inability to cheer up.

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.

Spoon shortage

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I’m running a major spoon deficit this week. I did my best to pace myself in the lead up to Christy’s shower last week, but I knew the fall out would still be bad. I don’t think I anticipated it being this bad, though. I’ve been fairly useless since Saturday night, with a small rally on Tuesday. Dirty dishes are stacked in the sink. Laundry, both dirty and clean, are piled precariously in their respective baskets. My days have been spent on the couch or in bed, using any energy I have to take myself and Zoë to the bathroom, (she’s back in a pull up today so I don’t have to be as vigilant in getting her to the bathroom) putting together lunch, and trips to the kitchen to get leftover cake gluten-free Brussels sprout surprise.

The fatigue that makes me feel nauseated not only affects my body, but my mind. The previous sentence took a few minutes to write simply because my brain could not pull up the necessary words. Rather than being able to easily pull up the language file like FitzSimmons scrolling through holographic images, I stare into space and push through the gray sludge to the words I need. The negative correlation between my patience and the girls’ whining is on a steep decline. It is so easy to become overwhelmed by the needs and noise my girls insist upon. And then, there’s the depression. In the midst of my darkest moments, the depression lies and pushes my head back under the water before I can gasp for air. It says that maybe my girls would be better off without me as a mother after I have yelled at them for bad behavior and acting their age. It says that the fibro will never get better and I am bound in this way of life forever. It says that the rest of my life will simply be existing within the pain and fatigue and that there isn’t anything better for me to look forward to or for which to hope.

In those times, I’m grateful to have a partner in Mike. I’m thankful for his gentle reminders that I have good days, and that not all my best days are behind me. And there I lay, physically exhausted by the tears and heavy breathing through my mouth. My mind, ravaged by the mental assault, is left with a dense blankness. I relax and hope tomorrow is a good day. I hope to find some of my lost spoons.

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.