Social Issues

when life is really, really hard

shark week
[content note: depression]

I found that picture about a year ago. I’m not sure why, but searching for period-related humor when blood is coursing like a river out of my vagina makes me feel better. I try not to laugh too hard, because laughing hurts– instead I keep it to “dour chuckle” level. But, it’s coming again next week, and like always I’m running around simultaneously trying to ignore it while doing everything I can to prepare for it. It takes a lot of preparation– I have to write three posts and schedule them (I usually post things the day I write them), cook a few things that will keep me and my partner fed, and make sure that I have food I can eat while laying down. The house has to be spick-and-span because it turns into a nightmare that makes me feel even worse because I’m wandering around making messes that I don’t have the ability to clean up, and the night before it starts I put ginger ale, painkillers, poptarts, heating pads, books, headphones, and laptop next to the bed.

Every month, it feels like such a stupid thing to get stressed out over, but I do. I have to plan to be a bed-ridden invalid every month, and it drives me nuts. When the notification pops up on my phone that it’s time to take my NuvaRing out, the first thought that crosses my mind every time is shit that’s NOW how did it happen this fast?!

And then there’s also the itsy-bitsy part of it all that I’m going to be in literally mind-blowing amounts of pain. I am in so much pain there are moments when I cannot see, when I cannot hear, when I cannot breathe. And every month, everything inside of my brain starts screaming at me how in the world can you stand this every month, this hurts so goddamn fucking much. And I’m laying in bed, screaming, and all I can think is dear ever-loving fuck this is never going to end, is it.

~~~~~~~~~~

This winter I was diagnosed with costochondritis. I’d been experiencing low-level chest pain for about a year, but it finally got to the point where I couldn’t walk or sit up for extended periods of time without it getting more than just annoying. My doctor handed me the diagnosis and the only treatment: take ungodly amounts of Advil and lie still until the pain goes away. It’s gotten back down to manageable levels, but the past few weeks have really done a number on it– I’ve been traveling pretty constantly, and my chest is letting me know that it is done. I spent all day on the couch yesterday, alternating between heat and ice and playing Hearthstone, and when my husband came home I had to ask him to do every single little thing for me. Honey can you get me some water honey can you move this laptop honey can you . . .

And everything inside of my brain starts screaming you are a burden you are weak you don’t contribute anything you just take and take and take and take.

~~~~~~~~~

My mother, my maternal and paternal grandmothers, and my great-grandmother all have fibromyalgia. My mother was first diagnosed with it when she was about the age I am now, and I’m starting to notice things. Little things, like waking up in the morning feeling like I haven’t slept and I’ve been run over by a truck. Feeling like random spots on me are bone-deep bruised, although there’s nothing there and I haven’t done anything to it. Intense, vivid dreams. Mental fogs. This weekend I did all the makeup for the bridesmaids in my sister’s wedding, and that night I couldn’t move and could barely breathe– after doing nothing, or what should have been nothing, but is apparently now a big deal for me.

I’m laying on my parent’s couch, hating every second of feeling so weak, and now I’m staring at a lifetime of constant, never-ending pain, and my brain starts screaming you will never escape this.

~~~~~~~~

While I deal with triggers and times that I refer to being in a “funk,” I’ve been extremely fortunate not to have struggled with serious depression. I’ve had suicidal thoughts, but not suicidal impulses, and those times have been brief and related to periods of extreme stress or emotional trauma. I’ve never had to fight a constant never-ending daily battle with mental illness, and I am extremely grateful for that; but because of everything I’ve just described I feel that I can understand what it could be like.

Every day I have to make a monumental choice about something that seems like it should be relatively simple for normal people. Because I have chronic pain and illness, I have to fight every day not to give in to it, not to let the FM and the costo control everything about my life. I do things, even knowing that they will hurt, because the alternative is do nothing. And I go about my life every day knowing that the same will still be true tomorrow. Tomorrow, I will hurt. Tomorrow, I will be tired. Tomorrow, I will not want to get out of bed. Tomorrow, there will be pain. Always.

And, I have to fight all the mental baggage that comes with it. I have to acknowledge things like you don’t contribute or you’re a burden as the lies they are, lies that have been given to me both by my culture and by a jerk-brain fed by insecurities and doubts. Lies that feel so true.

What I can’t imagine is going through something so painful while also having to fight the lie that suicide would be a release– a lie that my own brain is convinced is absolutely true. Those among us who fight severe depression– and if they are breathing, then they are fighting with all of their might– are dealing with the same things as I am, in a different way. But, I’m lucky. I wake up in the morning and even when I am in breath-taking pain I can feel my partner wrap his arms around me and I am happy. My friend comes over and we watch Rizzoli and Isles together while I’m curled up under a fuzzy blanket and high on painkillers, and I’m laughing because even with the pain, life is good.

I can’t even imagine going through life experiencing all the pain I do and not having those touchstones to latch on to.

Which is why I’ve been crying and shouting off and on for the past two days. When I heard that Robin Williams had passed . . . I’m not sure why his death has affected me so deeply, but I can’t help but think of all the ways his art has changed my life and then start crying. And then when I hear some of the stupid things that have been floating around the internet, I just want to scream.

My pains, because they are physical, would never be treated that way. I would never be called a coward, or selfish. If one day a cyst ruptures and it causes a systemic infection and I die, no one is going to hear about it and think what a selfish thing to do, dying like that.

 

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  • marciepooh

    Thank you. I saw a head-desk inspiring headline about Mr. Williams death a little while ago and your post (and another) helped restore my faith in people.

  • Another thing is that, if it were to come out that he killed himself due to having cancer or something similar, rather than depression alone, I think people would be more sympathetic. And that’s sad. Mental pain and physical pain can be equally unbearable, and I can’t imagine someone dealing with either every day without release. I’ve been lucky that my suicidal impulses were mostly medication related and eventually subsided, and that I did have periods of reprieve from them even at my worst. No one can judge the pain of having that day in and day out. And I imagine it’s in some ways worse to be a celebrity like him and know that you have tried everything. You have access to everything in the world and it’s still there. That has to feel so hopeless, even though I wish he’d chosen to get help. People love to judge pain, but it’s not something you can judge when you’re not the one in it.

  • Stephanie

    Forewarned is forearmed.
    I don’t know what kind of a doctor treats fibromyalgia (my sister has lupus and I think she sees a rheumatologist) , but if you need one I hope you find a good one. One who keeps current on all modalities of treatments, and has an open mind when it comes to any nontraditional strategies and therapies that might help.
    I think the reason why Robin Williams’ suicide has affected me so, quite possibly triggered me a bit if I’m honest, is because I struggle with depression, and I can confirm what you wrote here. The brain believes that death/suicide makes sense. I have a good psychiatrist who knows me well, and has found the right balance of meds and talk therapy and I still suffer through times where I honestly don’t feel strong enough to draw another breath, and I continually am surprised when I actually do. I’ve learned various coping skills – a safety contract, journaling, having pets who need me to get the hell out of bed in the morning, plus other mire complex but private internal strategies that I keep for my therapy sessions. At my worst, for years, I literally did not really see color. Everything was muted and grayed down, and when I started to stabilize, the right medication for me was kicking in, I literally could see more clearly, both physically and emotionally.
    But in the darkest of times, when the brain believe the lies of depression, it only takes a moment or two to slip after what may have been weeks, months, even years of coping, and I think that is what happened to Robin Williams.
    In addition to the national suicide hotline, there are the organizations TO WRITE LOVE ON HER ARMS and RAINN that offer help and in Rainn’s case hotlines that can truly help those who are that depressed who may not have any other reliable source of help.in their lives. Rainn specializes in helping individuals who have been raped, physically and mentally abused, victims of incest and/or neglect.
    I think what kept me going, to try again and again until I found the right doctor was that I needed to know what went wrong, because the only message my fundamentalist indoctrination could offer was that I wasn’t faithful enough, I wasn’t pure enough, I was failing God and was not a good enough Christian and that “if only” I would do better, I would be “healed” . I was told psychiatry was the Devil’s work, and that by seeking therapy and medical treatment for my depression was inciting demons to control my life and my mind.
    I apologize for rambling on so long but I guess some of the hurtful and cruel things some people are saying about Robin Williams’ suicide are prompting me to say those people are wrong and those things are not true. Don’t give up, don’t give in, those suffering can and will find the help they need. Call a friend, call a hotline, please do not give up.

  • Don A in Pennsyltucky

    Costochondritis. My wife has had that diagnosis for at least 15 years and before that when she had unexplained pain in her chest area the medical community seemed to think that it was some sort of hypochondria and “all in her head”. What we know is that it waxes and wanes. Sometimes it seems to be correlated with stress. NSAIDS can reduce the inflammation somewhat.

    But we also know that she has a hereditary defect which affects the blood vessels — mostly in the sub-cortical area of the brain — and makes them weaker. There are also lesions in the sub-cortical area which mimic the appearance of MS. For nearly 30 years her various peripheral symptoms — including costochondritis — were pretty much ignored as some sort of idiopathic “woman’s problem”. Doctors still don’t take women seriously — not even women who are OB-GYN specialists.

  • Beroli

    I can’t believe how selfish so many people are. Dismissive of physical problems they don’t have, judgmental toward depression…

    I hope you can find a treatment that makes the pain less bad. My wife has similar problems related to we’re-not-entirely-sure-yet-but-it’s-probably-related-to-fibromyalgia; the good (?) news is that they should be treatable, if she can manage to get treatment for them.

  • I, too have been mourning the loss of Robin Williams.

    Who knew there were so many people that loved him. I hope he knows how many of us were blessed by his zany wit and the lessons we took to heart in his more serious performances.

    I, too, have a life-altering condition and it’s hard to not get frustrated by both the situation and the people that haven’t a clue.

    I hope you can get a grip over this situation as well as finding other people that can relate and help without the snark and finger-waggling.

  • Crystal

    Dear Samantha,

    I am deeply touched that you can write for others when you suffer so much. I might have my problems, but they are nothing compared to yours. If only there was some way I could help you!

    My deepest sympathies lie with you and your nightmares.
    Crystal

  • beckycastlemiller

    I’m so sorry. I can’t fix it, but I am giving you my empathy, feeling just a little bit of this with you.

  • Crystal

    PS: I think women, babies, and animals don’t get helped because people (meaning men and those others trained in a male, animal-controlling, don’t care for babies mindset) couldn’t be bothered. The world is filled to the brim with benefits for male humans!

    If there was some way I could help you, please let me know.

  • Crystal

    I mean everything I say. YOU ARE SUCH AN INSPIRATION TO ME!!

    Crystal

  • I’m so sorry you’re going through such a hard time. If there’s anything I can do besides offer sympathy, let me know. A good friend of mine suffers from fibromyalgia, and I know how wretched that family of illnesses can be (incidentally, she’s found a substantial amount of pain relief through the use of medical marijuana– if it’s legal where you live, you might consider looking into it).

  • [Warning: In Which I Admit To Past Assholery]

    A few months ago, when Philip Seymour Hoffman died, I was riding in a car with one of my friends and said, “You know, it’s probably wrong of me, but when people die from drug overdoses, I just don’t feel that badly about it.”

    She, somehow, managed to not drive us off the road and asked me why I felt that way. For some reason, I continued to talk. “Well, it’s just that there’s only so sorry I can feel about someone who kills themselves, you know? Especially on something as wasteful as drug addition.”

    My friend informed me that what I had just said was profoundly insensitive and hurtful, and as she was actually already upset over Mr. Hoffman’s death, she requested that we continue the conversation another time. And we did. We talked at length, but only after she gave me several rather good articles on the subject to help educate me on the realities of the situation.

    I say this here in part of a thank you to Samantha and others like her. I used to be an insensitive jerk. I used to blithely say things that hurt others and, cocooned in my own privilege, I wasn’t even aware of the damage I caused others. Thankfully, I am no longer unaware of this area of failing, and that’s because someone took the time to educate me. They didn’t owe it to me, they didn’t have to, but my friend did because she cared enough about me to fight through my stupidity.

    That’s one of the things I love about this blog. It’s incredibly kind. And, it’s loving. And because it’s both of those things, Samantha says hard things that need saying.

    Thank you for that.

  • You’re an incredible writer. I love your brutal honesty and the use of the word fuck. That may sound so stupid but I was raised in a conservative home and church (they were super legalistic) and if I were to say that I might as well board my hand basket to hell
    and yet as I go through counseling and face some crazy traumas my parents put me through I am finding the freedom to say what the fuck are you up to God! and I feel closer to God now because I am finally getting the freedom to ask honest questions! You do that so well in your blog. I love it! I grow from reading it. You are an inspiration and I hate you are dealing with incredible amounts of pain. I’ve only started working through my traumas and often I struggle with such intense anxiety or migraines i end up in bed all day and I feel like such a burden! And then on top of that I am bipolar so I have moments where, yeah, suicide kind of makes sense in my head (more on my experience with bipolar: http://www.saturdayafternoonphotography.com/2014/07/09/am-i-crazy-part-5-bipolar/) I love what you wrote in this post. I read something yesterday written by Matt Walsh on suicide and I thought I was going to be sick! uhhh. ppl do not understand sometimes and no one has the right to speak on his death right now, especially those who were not close to him. Ok so I am rambling… I just love your writings and think you have sooo much to offer!

    • Crystal

      cboetcker, I’m so sorry for your suffering. May God heal and strengthen you, my dear.

  • Holy shit, I’ve had moments of that cartilage stuff, when my rib shifts or something, and I can barely breathe until it shifts back. That is such physiological bullshit.

  • I lived for a solid decade with terrifying amounts of depression. I call it my decade of suicide ideation as a lifestyle. I’m very fortunate – I started seeing an endocrinologist about something completely different, and in the process of fixing my pituitary hormones, the depression lifted, and has not been back in six years. Pure luck, and I count my blessings daily that a) I survived, and b) the depression is genuinely gone, having been a side effect, rather than the primary illness.

    Now my husband has stage 4 kidney cancer. It’s tough going on a daily basis, it’s emotionally rough, and he may yet be taken from us way too soon. But it’s real to other people in a way my depression never was. We get incredible amounts of community support, and people are helpful and sympathetic. I’m genuinely grateful for this – it makes this scary journey a lot more bearable. But it makes me a bit wistful that this kind of support is generally not the experience of mental illness.

  • My thoughts and prayers are with you Samantha.

  • J. Rachel

    hope you’re able to rest and know that’s OK… to have some peace

  • wbgl0

    I am in awe of you, Samantha. I don’t know how you can be so productive and write so much great stuff when you’re in so much physical and emotional pain. And then to care about stuff like racism on top of it. You’re amazing!

  • Rubi

    On periods, if you’re on BC anyway, and they’re horrible, have you thought about not taking a week off every month? Maybe just do it a few times a year?

    • I’ve tried that a couple of times … Unfortunately it doesn’t work for me. :/

  • Kathleen Schwab

    I also live with chronic pain. The not being productive part of it is really really hard. I can’t have a regular job, because no one will hire someone who can’t drive and needs an unspecified number of sick days.
    One of the very difficult things for me is trying to explain that many poor people and homeless are that way because they have health conditions like mine, but are not lucky enough to have a husband with a nice income. I volunteer at the local homeless shelter: I know how much of this stuff is health related. But when people talk about how the poor make bad decisions, are lazy, are unproductive, are freeloading off society, it is painful for me because it sure sounds like they are describing me. I don’t accomplish much. I have a home business, and work about two or three hours a day. Sometimes i lose a whole week to a bad pain spike.
    I am in my late 40s, and from what I’ve observed, the church has gotten meaner about poor people in the last 25 years. Even leaders in ministry will go on rants about the food stamp freeloaders. When confronted, my experience is that they double down, and insist poor people are making their own problems. It is painful, because all that is different between me and those people is a husband with a nice paycheck.

  • I know this is an old post, but hopefully you’ll get a notice of this comment and see it. I too was diagnosed with costachondritis & told that the solution was ibuprofen. I hate taking medication, and really hated taking that much ibuprofen. I did some research on the Web, and on the Mayo Clinic site found info about other options. So now I take an herb called Devil’s Claw – 1 cap twice a day manages it really well for me. I don’t feel ill, my energy is good, and I don’t feel medicated. YMMV – my husband has fibromyalgia type pain and it didn’t do anything for him. But I wanted to pass that along.

    Ann