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.