QUIT: Being a Selfish Bitch About My Husband’s Illness

[Part of my mission to “live deliberately” involves ruthlessly cutting out anything that saps my time, energy or money to no good end.  I’m calling these things my “Quits,” and this is one of the many items that have found themselves on my Quits List.]


This is one of those posts that has the potential to make you hate me.

I hate myself for it.  But we’re all about the honesty here, and I’m hoping there might be someone out there this could help in some way or another.  I don’t know in what way, but something has been pushing me to write it for weeks, so I’m just going to write it.  It needs to get out, because it’s been a huge issue that needs dealing with.

So here goes…


 My Husband Has Mitochondrial Myopathy

You can read the full details on this condition (which was first diagnosed as Fibromyalgia) here, but the short explanation is that his cells don’t produce energy like they’re supposed to.  This means that:

  • He feels aches and pains all the time in random places.  We’re never sure if something’s actually wrong or if it’s just wonky nerve signals.
  • He’s sensitive to light and extremely sensitive to heat—which makes the summer an especially bad time for him.  He’s gone down a full clothing size this summer from not being able to eat since he’s had so many flare-ups.
  • He has trouble eating.
  • He has trouble sleeping.
  • He gets extremely tired after even a little bit of physical exertion and can be in pain for days after if he doesn’t take it easy.
  • He can’t stand for long periods of time (like at concerts).
  • He can go from feeling fine one minute to feeling like crap the next.  (If he ever really feels “fine” like you or I do.)
  • He has trouble concentrating and remembering things (the fancy name for this is “discognition”; the layman’s name is “brain fog”).

In spite of all of this, my husband is a saint.  He’s always thinking of other people, bringing me flowers spontaneously on his way home from work and asking how I slept the night before, even if he’s clearly had a horrible night of it himself.

He rarely complains, rarely gets caught up in self-pity, and he has such a warm and upbeat personality that plenty of people have trouble believing he’s even sick.  (Did I mention some people don’t believe he’s sick, but imply he’s just wimping out and not “toughing things out” like other people do?  Yeah, that’s also a problem.)

Yet, in spite of all of this, I am often a total and utter bitch to him.


Let Me Count the Ways…

I’ve been trying very hard lately not to vocalize or show my increasingly awful thoughts in my actions, so he may not think I’m as bad as I am.  (Or maybe he does realize it?  Maybe he’s just being exceptionally forgiving of me.)

But, inside my head, I am a selfish, resentful, bitter little child about so many things:


1. Total Responsibility For All Household Chores Falls On Me

Budgeting, cleaning, dealing with repairs, managing the calendar…Anything that could possibly need to be done to maintain a house, two dogs, and the life of married couple falls to me.

This is why I’ve given up on keeping my house clean anymore.  With so much on my plate and so little time for any of it, I have to let a lot (and I mean A LOT) of things fall through the cracks.  There’s just nothing else to do.  I feel horrible about this, then angry because everything is on me.  It doesn’t seem fair.  I am the hardest worker you’ll ever see, but carrying everything on your shoulders all the time can wear you down.  It makes your nerves raw.  It makes you start to resent every little extra thing that comes your way.  It makes you have a completely disproportionate meltdown when something breaks because How Much More Am I Supposed To Be Able To Deal With?

But: is being sick all the time the way my husband wants to be living?  Is that fair?  I don’t even need to answer that question for you to know how awful it makes me feel every time I remind myself of it.  Here I am grumbling over stupid things like laundry and bill paying when my husband is spending another night in bed just trying to make the hours to pass.  It makes me feel sick, when I stop myself long enough to smack some sense into myself.


2. We Spend a Lot of Time in Bed in the Summer

Our bedroom and my office are the only rooms with A/C’s, so as soon as my husband gets home from work most evenings during the summer, he goes straight into the bedroom.  Which means when I’m not working on my freelancing, my nights are usually spent lying in bed in the dark watching TV for hours.

This makes me extremely antsy.  I’m ambitious and curious, and although I almost always prefer spending the night at home to going out, months of spending the night at home can start to wear on you.  The weather is gorgeous, we’re young and supposed to be in the prime of our lives, and our city is filled with pretty parks and great restaurants and fun little main streets with shops to browse.  There are so many things we could be doing together, even once in a while for a change.  Instead, his being housebound makes me feel like I’m restricted to being housebound, too.

But does he enjoy being stuck in bed all the time?  Sure, he loves his Xbox and could probably watch TV for 24 hours straight and seem perfectly happy doing it, but it’s not because he’s lazy or that’s what he’d most love to be doing with his time.  It’s because he physically can’t do anything else, and he’s making the best of it.  I fall into the exact same trap as the people who fail to realize he’s really sick.  Our routine has become so set and “normal” for us that I fail to realize why it is the way it is.  I focus on all the things we’re not doing, instead of focusing on why it is that we can’t.

Instead of boohooing the fact that I rarely get a night out on the town, I should be doing everything in my power to make my husband as happy as I can with everything he’s dealing with.  I could go out on my own sometimes, even though I’m not a fan of it, just to relieve some of my stir-craziness so I can be a better wife to him.

I could, I could, I could be doing so many things better…but so far?  I’m not.


3. I Never Know When Our Plans Will Actually Happen

We had a disastrous trip this summer where my husband got sick and we spent the majority of the vacation watching TV in our hotel room, with me eating a reheated microwave “burrito” at a Target café at 9:00 p.m. because we’d gotten literally one block from the restaurant we’d been looking forward to visiting when my husband got sick.

It’s extremely rare that we can ever say, “Hey, let’s go get some ice cream!” or “Want to take the dogs for a walk?” spur-of-the-moment.  We used to be able to, when we were first dating.  But that’s not the way things are anymore.  Every plan we make to go out for dinner or hang out with friends, we both know, has a 50/50 chance of being cancelled.  This can get really disheartening.  It’s so rare that we get to step outside our normal housebound schedule that even I, the queen of anti-social homebodies, can start to feel depressed after enough nights stuck indoors thinking about the movie we could have been seeing or the reservation we had to cancel.

But how disheartening is it for him? I know he tries to do as much as he can, and admitting he isn’t up for something can’t be easy for him.  But am I sympathetic to that?  That’s the thing—I’ve learned to hold my tongue, nod my head, and say “o.k.” as matter-of-coursely as I can.  But in my head?  I’m disappointed.  I’m disgruntled, sometimes.  And that is a 100% selfish, unfeeling, and bitchy way to react to this.

I wish I could go back to the beginning and do everything all over again the right way, but I can’t.  All I can do it try to make a total 360 going forward.


Trying to Grow a Heart That’s Gone Three Sizes Too Small

I’ve started reading books on what it’s like to deal with a nebulous, life-long condition like mitochondrial myopathy.  Some are geared towards loved ones and “caretakers”; some are written for the people who suffer these conditions.  Both kinds make me realize what a self-centered prick I’ve been and how hard every day must be on my husband, even though he rarely shows how bad it really is for him.

I want to start understanding more what it’s like to be sick, the kind of sick that will never really go away, and how people cope with that.  So I can help him cope with that as much as I can learn to cope with it myself (which I desperately need).  I considered starting a blog on what it’s like to go through all this, but I think I need to do some serious research and soul-searching before I start distracting myself with another fun, shiny blogging activity.

Because I promised to be with him through sickness and in health—not to be with him with secretly frustrated thoughts and dissatisfied grumblings, but with empathy, patience, grace, and positivity.

He deserves better than me.  He honestly does.  But I’m going to try to be more like that person…

Image: Frédéric Poirot / Flickr

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  • Nonononono. I’ve seen this before. This is caretaker’s burnout. You’re not being a selfish bitch. This is you trying to take care of your own needs that have been submerged under all your other responsibilities. Blaming yourself will only make it worse.

    I know it’s only one more thing for you to do, but look up some caregiver support groups in your area. It will help you, I promise.

    • Thank you, Shanna. That’s a really good idea. I’m trying to read up on this, but some interaction could be really helpful, too. I think that was part of what I was thinking of with the idea of starting a blog–having it be more of a forum for people dealing with similar situations so we could all support each other.

      I’m definitely going to look that up. Thanks a ton for the support. 🙂

      • nikki

        Always come out and talk to each other about each others feelings. I am in the same situation and it works out great!

    • Marie

      I agree with Shanna that this is burnout. And the thing to remember with burnout is that it happens not because you DON’T care, but because you do, passionately. If you did not start out on fire, you would not burn out.
      A few suggestions based on a husband who burned out recently:
      1. You can’t continue as usual. Burnout is your emotions telling you this.
      2. That doesn’t mean you can never do it again. But first, you need a break.
      3. Use your break to do activities that actively build you up, not just mindless ones. Make a list of those activities. Schedule at least one per week forever after.
      4. After your break, start taking on responsibilities again. Not all at once – one by one. This is not a short-term illness that will go away; it is a lifestyle. Your husband will also benefit if you make this lifestyle sustainable in the long term. So find a balance that works for you.
      5. Spend extra cash on paying someone else to do some of the things you can’t. Even if it’s a once-a-month half-day lady coming in to wash the floors and windows and then go. It will make you feel like you have some control.

      • Those are all excellent tips Marie, thank you.

        The way you call it a “lifestyle” is especially helpful–I’d never thought of looking at it that way, more like this problem that we constantly have to deal with that *interrupts* our “normal” lives. But you know what, this IS our “normal,” and I think coming to see it that way will help make it much easier to assimilate and work with.

        I’ve also considered the cleaning services issue. In the past, I couldn’t justify it, because I’m so budget-conscious, but there comes a time when the extra expense is worth the piece of mind. Definitely something to keep in mind.

        Thank you so much for the support and the awesome advice. 🙂

  • I love you too.

    • Sabrina

      Hey there, i just found this blog, this is the first article i have read and I can not help but ask what kind of food is your husband eating? Have you ever hired a chef that specializes in this kind of illness? Alternative foods tried? for what lengh of time? Of course im asking because this is what i do and myself waas diagnosed with fibro and it was total bullshit.

  • Nicole

    I’m sorry to hear that you and your husband are going
    through this. I hope that you seek out a support group. Women so often
    think they should bury their own needs to take care of someone else. First,
    there’s sacrifice, then anger at the sacrifice, then guilt at the anger, then
    beating yourself up for not being more sacrificing. It’s not OK for you to
    spend your entire summer in bed, watching TV in a dark room, when you want to
    be out enjoying life! I admire your courage and ability to face things
    honestly, Cordelia. That’s the first step. It sounds like you’re ready to
    address this. You can definitely make this better for yourself – and your

    • “First, there’s sacrifice, then anger at the sacrifice, then guilt at the anger, then beating yourself up for not being more sacrificing.”

      YES. You just described the vicious cycle perfectly. That is exactly how I’ve been feeling lately. But with all this amazing support and encouragement, I’m coming to realize that it’s actually perfectly natural and that there are ways of learning to deal with it.

      You’re right–admitting and addressing this is the huge, scarey but vital first step. Both me addressing my frustrations, and my husband and I addressing that this situation isn’t going to change and we need to learn how to cope with it in the long-term. I’m beginning to see that–thanks to all of you guys. You really do keep me sane sometimes. 🙂

  • Melissa

    What Shanna before me said. While online/books will help to a degree, there is NOTHING that can take the place of an outside support network of caregivers who get it.

    Having been on both sides of the fence (caregiver and the one needing the care), it is sooo important to make sure that you take time to care for you, too. No, you may not be the sick one, but you ARE the one shouldering an awful lot of responsibility and that is a huge thing. Don’t EVER feel bad that you can’t be Superwoman and take care of everything without batting an eyelash. No human can, and that’s why caregiver support networks exist.
    Much love to you and your husband. Living with a chronic illness is very much not an easy road for any of the parties involved, no matter what some people try to make us think.

    • Thank you, Melissa. We’re actually going to see a therapist later this week and ask about local support groups. I think it will do both of us a world of good.

      I hope everything is going well with you and your loved ones now?

  • christian

    That Husband O’Cordelia sounds like a great guy. Ahem, a “heart that is three sizes too small”? Beg to differ. Admitting that you sometimes are resentful doesn’t make you a bitch, Kelly. It makes you human. It is the push-pull of the caregiver. You adore your husband and truly care for him and his well-being. That is what being half of a couple is about. At the same time you are aware–and more important honest–about the consequences of this commitment you two share. Sometimes life sucks, or sucks for one of us, and sometimes it’s great.
    I believe the key is to gently but honestly let your husband know that sometimes it’s hard being his caregiver and sometimes you really miss going out. You’re not laying a guilt trip on him. You are being authentic and loving and communicating with this man so that his fibromyalgia doesn’t become a wall, built brick by brick, between you that ultimately ends your relationship. (I know from whence I speak. Walls are not good).
    I believe he is a big boy and is more aware than you give him credit for the impact of his illness on his loving bride. And I bet he appreciates your patience and caring and sacrifice. I imagine this is a common area of concern/difficulty for many couples where one member suffers from a debilitating disease.
    Talk. Talk. Hug. Talk. Cry. Talk. Watch tv. Talk. You know the drill.
    And if you guys need support, I’m certain there a few thousand of us CCIQ fans that will “listen” to you here if you feel like it. Just a guess.
    Life is full of suffering. And life is full of joy. You just have to savor the moments as they arise. Be a “bitch” once in a while and be the loving, caring wife you are 99% of the rest of the time and you’ll get through this fine.
    (Did I say, I know from whence I speak?)
    Be well.

    • You hit the nail on the head, Christian (as you so often do). Part of the reason I felt so awful mentioning my frustrations to my husband was because I didn’t want him to feel like I was “guilt-tripping” him. He has things hard enough, and for me to complain about not getting outside the house enough felt selfish and mean. But you’re right; honesty is the way to go. Honesty combined with patience and understanding, actually.

      I so appreciate all of your support and camaraderie. I don’t know how I’d get by sometimes without my awesome readers. 🙂

  • He loves you for you. You love him for him. The end.
    But in all honesty, I relate 100 percent. It’s not my (non-existent) husband, but my mom that has always been sick. She’s had 13 spinal surgeries and has a completely fused spine and growing up, my mom was always the one in a body cast or having surgery. It was just normal for me, especially seeing as she always made the effort to be the “cool” mom and did SO much more fun stuff with us than the other moms in the neighborhood. She was awesome, despite all her pain.

    But now she’s older and to be honest, she can’t do nearly as much. I won’t ramble, but we’ve never been able to do “normal” things and I don’t have a time in my life when I wasn’t aware she was constantly in pain. In hurts me to know this, and it hurts me to know that there were times I just wish she was “normal.” However, life happens–sickness and health and all of it in between–and we roll with the hands that we’re dealt.

    You’re a good wife. You’re a good person. You know this, and so does your husband. 😉

    • Thanks, Abby. I’m so sorry for everything you and your mom have gone through, but it means a lot to find people who have struggled with this, too. For the most part, I do roll with things as best I can–it’s just every now and then, it gets to be too much…And then I break down in a very public forum, and awesome friends like you remind me that things will be o.k. and that you’ve got my back.

      And p.s., from the stories I’ve read on your blog about your mom, she totally IS one of the coolest moms on the block, no matter what she’s dealing with. I’ve wanted to adopt her ever since I read about her escapades trying out pillows in the aisles of (was it Target?) 🙂

      • Well, I only share the “good” parts, which is something to keep in mind. Another thing to keep in mind is that physical illness isn’t the only hard thing to deal with in relationships, whether they’re with your husband, your mom or your friends. From all her pain she has severe depression she’s ignored and refuses to acknowledge. There’s nothing I can do about that other than know I have the genetic disposition for the same–as you know–and deal with my own mental health first and foremost.

        I know you can relate, but also remember that your husband has patiently dealt with your issues as well. 😉 We’re all in this together, my friend!

  • Agnese

    Thank you for this post.

  • I can’t even pretend to know how hard this must be on both of you. I get annoyed when my husband has a cold because that means he’s not going to cook for me. I’m a spoiled brat…you are most definitely not and you’re not a bitch either. Hang in there.

    • I will. All this awesome feedback and support totally helps. You guys rock.

  • Yes!Yes!Yes! All that ^^^ and a cherry on top!

    And, don’t just find a support group online – Get Thee To The Local Meetings! (bold,cap,underlined ITALICS!) There’s nothing on the interwebs like a real hug from a real live in-person person – even if you’ve never met ’em before.

    Plus, be honest with both yourself and your DH about *all* your feelings (and encourage him to look at and share all of his, too.) None of them are unique, and exploring them will *not* kill you – either one of you.

    I know that my marriage got better even as my DH got sicker, because we really talked about what was going on for each of us. We cried, we laughed, we raged about “the systems” – and we didn’t shy away from “gallows humor”.
    We found space in the house to talk where we were both comfortable and not distracted, that wasn’t either “his” space (the living room) or “my” space (the kitchen) or the bedroom – turned out to be the landing at the top of the stairs, but it worked!

    Also, check out Craigslist or Freecycle for another AC unit or two – surely, being homebound sucks, but being restricted to only a couple of rooms is even less pleasant.

    We love you, he loves you, the Cosmos loves you. Please allow yourself to love you (all the parts of you) too ~

    • You are so right. We had a real open, messy talk last night about how much this sucks and how hard it is on both of us, and I feel like we’re so much stronger because of it. We’re going to look into local support groups ASAP, because I think they would both do us a world of good.

      And yeah, I think central A/C is going to be our gift to ourselves next summer. Much like getting a dishwasher, it’s moved from “luxury” to “necessity to keep us sane” at this point.

      I hope you and your DH are doing well. It sounds like you’ve got a solid, strong relationship and have really learned how to handle such a tough situation with grace and humor. I hope to one day be at that place myself.

  • Cordelia’s Mom

    Hey, hon, the conflicting emotions you’re feeling are perfectly normal. I know. Someday I’ll tell you what a horrible mother I felt like when my kid was so sick for so long. Call me any time you feel overwhelmed. I called my mother a lot. Heck, even my mother-in-law helped me get through. My love to both of you.

    • Thanks for the call last night. I guess even 30 is never too old to still need your mommy sometimes. 🙂

      • Cordelia’s Mom

        Any time. I’m always here for you and your sisters.

  • Esther Goh

    I … can’t even begin to understand. Sure, we had a rough patch dealing with unemployment (in which I was also often a hella bitch to him) but this pales in comparison. Marriage is in sickness and in health, but do we really consider what that might mean? Can we even comprehend what it might mean?

    You are human. He is human. You are going to say and do mean and messy and ugly things. Hang in there, hang in there, hang in there – and I hope you can find a great support group as others have suggested.

    • “Marriage is in sickness and in health, but do we really consider what
      that might mean? Can we even comprehend what it might mean?”

      That is so true. Life is full of so many curve balls we could never expect. Rolling with them together is really the best any of us can do.

      We are definitely looking into the support groups. (Although I’m already lucky enough to have one here, as all of these amazing comments so clearly illustrate.) 🙂

  • Julia Hristova

    You are human, it is normal to feel bad when your needs are not met. You know you shouldn’t do this, but it is okay to want something more for yourself. But, you are trying to be nice and more understanding and eventually you will figure something out – you already have great suggestions – find some support and be kind to yourself.
    Also, I am not a doctor or something but I have heard that in America there are many foods (probably all junk food) that contains aspartam, flavours and other stuff that can cause fibromyalgia and chronic pain and fatigue syndrom. You can try to incorporate more organic produce in your diet and see if this alleviates his pain. I have seen miraculous results from people with serious illnesses who have started a raw food diet which is not too high on fats. I have heard that enemas work wonders as well, because our bodies cannot handle the junk we put in our mouth and we get sick. Try lowering sugar and salt intake and replace them with stevia and probably sea salt. Avoiding junk food is always a good idea, probably meat and dairy as well. I hope this helps.
    I send you lots of love and mental support. You rock! 🙂

    • Thanks, Julia. You are always full of so much wisdom. Diet is definitely something I’m sure we can control, and it might make a world of difference. We’re actually thinking of going to see a specialist out of state pretty soon, and I’m hoping he’ll have some great advice like this that we can implement to make things easier for my husband on a daily basis.

      Thanks a ton for the awesome suggestions. YOU rock!

      • Yep! Yeppers, even…
        “What’s IN what you eat” = incredibly important!
        My-personal-bias alert: Take what many MD’s (and dieticians) say about “diet” with a grain of salt (heh). They may be so steeped in the mainstream, med-school, allopathic world view that they don’t even recognize *their own* biases against non-patentable life-style changes.
        Happy Navigating your own path…

  • Julia Hristova

    You are human, it is normal to feel bad when your needs are not met. You know you shouldn’t do this, but it is okay to want something more for yourself. But, you are trying to be nice and more understanding and eventually you will figure something out – you already have great suggestions – find some support and be kind to yourself.
    Also, I am not a doctor or something but I have heard that in America there are many foods (probably all junk food) that contains aspartam, flavours and other stuff that can cause fibromyalgia and chronic pain and fatigue syndrom. You can try to incorporate more organic produce in your diet and see if this alleviates his pain. I have seen miraculous results from people with serious illnesses who have started a raw food diet which is not too high on fats. I have heard that enemas work wonders as well, because our bodies cannot handle the junk we put in our mouth and we get sick. Try lowering sugar and salt intake and replace them with stevia and probably sea salt. Avoiding junk food is always a good idea, probably meat and dairy as well. I hope this helps.
    I send you lots of love and mental support. You rock! 🙂

  • I’m so sorry for what you are going through. I can’t imagine what it must be like to deal with so many different issues. You are an incredibly loving and giving partner to have stuck by through it all, and you definitely have my thoughts and empathy. Knowing that you’ve been able to make it through is a big encouragement to me. Make sure you’re following your own excellent advice and taking some time for yourself, too. Hugs back. 🙂

  • I am so sorry for what you’re going through with your husband. Being BP myself, I know how completely disruptive it can be–not only to your own life, but to the lives of all those around you. I sincerely hope he’s able to find a good doctor, therapy, and medications that can help him get on the right track. I can tell you from personal experience that it IS possible to through hell and back and come out on the other side. My symptoms are under control now and my life feels totally different. My heart is so with you and your husband as you both deal with this.

    I’m beginning to realize the wisdom (and necessity) of an “F off” attitude when it comes to MANY the things that have been overwhelming me. I may not like that things have to fall by the wayside, but there are more important things in life, and I’m beginning to realize that.

    Going on a road trip with my mom this Sunday, actually, so that’s a step in the right direction. 🙂

    Thank you so much for the words of support, and I give them right back to. I’ll be thinking about you and your husband and hoping all works out for you.

  • Yep, you get an awful lot when you start reading CCIQ. 😛 Some of it work-related, some of it TMI, all of it guaranteed to be interesting if nothing else. (And thank you for the lovely compliment, that totally lifted my spirits.)

    You’re right–I need to learn to take a little more “me” time than I’ve been taking. It feels strange for me to do things outside the house on my own (I’ve tried reaching out to friends, but they all have their own lives and I shouldn’t depend on anyone else to “rescue” me). But I could have enjoyed a lot more of the summer weather if I’d been willing to take that leap and learn to be o.k. just being on my own. I try so hard to be “productive” in my “me” time (yeah, working on my freelancing probably doesn’t *really* count as “me” time), and I think I need to learn to actually give myself some dedicated down time just for relaxing and enjoying the things around me.

    Glad to have you along for the ride, Omar! 😛

  • Thank you. I can’t tell you how much all this support means to me. 🙂

  • Keisha Douglas

    Admitting that you’ve been selfish is always a good sign that you are a good person. Just sometimes we all get a little selfish because, hey, it’s nice to think all about ourselves from time to time. Not as an ego boost, but as a way to keep our sanity. And I agree with the others, you are human and you are definitely burned out. But the fact that he hasn’t told you you are selfish, makes him awesome too. Virtual hug for you both.

    • Thanks, Keisha. You make some awesome points. 🙂

  • Oh, do I feel for you, Cheryl! I hope things get better for your husband and that he has a good psychologist/therapist to help him (and you!) learn to deal with his condition. Depression pervades every aspect of a person’s life–and the lives of those around him–and I know this all too well. It can be so draining. I’m thinking of you and wishing you both the absolutely best.

    As for the employment issue, that’s something we’ve been considering, too. Right now, my husband plans to work for as long as he’s physically able–but we can see a day coming down the road when he will most likely have to apply for permanent disability. I can only imagine how sick you must be of dealing with questions about your husband’s work situation, but I think you’re handling it well. “Semi-retired” is fine if you don’t want to get into his issues–it’s no one’s business what the details are, and you’ve got enough on your plate without having to deal with people’s nosiness. If you’re willing to say he’s “on disability” and leave it at that, you could do that too, and if anyone rudely wants to know why, just say you’d rather not talk about it. But I think your answer is fine. You don’t have to divulge any more than you’re comfortable divulging.

  • Kitty

    Hey Kell,

    Just browsing the blog and saw this. I can relate from the husbands end.

    As someone who is sick all the time I understand your husbands feelings. As a married person I also understand yours. You can be frustrated and upset by his limitations because, by marrying him, they have become yours. And nothing is more frustrating than being limited by your own, or your partners, body. It’s hard, it’s exhausting, it’s annoying. I know he wants to do things and just can’t and I know you want to do things with him. There are a lot of emotions on both ends of the spectrum and you need to feel okay with having all these reactions. They are natural and normal.

    Just, try not to take it out on him and ask him to do the same for you. Call a friend or family member, write more blogs like this (you don’t necessarily have to post them) or walk the dogs on your own (they like the exercise) to blow off that frustration. When you get back to him you’ll both feel better.

    • Thanks, Kitty. Very wise words. I especially like the idea of writing more posts, even if I don’t publish them.

  • Cat

    Wow… I just discovered your blog today…and I’m not quite sure how I ended up on this particular post, but I just wanted to say that I can really relate to the feelings you describe.

    My partner of 20 years has a chronic pain condition, so I know what it is to never be able to make plans… or to know that any plan has a good chance of being called off, and to feel like your own life is curtailed because of his condition. It’s hard not to be bitter sometimes – and then feel guilty about being bitter – and then feel angry about being guilty…etc, etc, etc.

    We actually have a very unique way of dealing with it… we don’t live together. His condition is the result of an accident that he had more than 10 years before we met – so his systems for dealing with his condition were pretty well set before we ever met. He has a live-in caregiver, and a home that is crafted around dealing with his situation – so, unconventional as it is, we decided that it would be better for both of us if I wasn’t in the middle of trying to deal with his day to day pain struggles. I have a certain amount of guilt about that, but it works for both of us. BTW – I’m not suggesting that as a solution, because I think it would be totally different if the accident had happened after we were already together – it’s just the way things worked out in our situation.

    All I can say is that over the years it has gotten easier for me. It took me a very long time, but I was finally able to let go of my picture of what it is to be “a couple” and just accept the reality of what we have. I think that watching a few friends lose spouses to horrible illnesses really helped me to put it all into perspective and see each moment that we have together as a blessing rather than cursing all of the things that we are “missing.”

    Don’t get me wrong… there are plenty of times when I get grumpy because I have to deal with my own house myself, or because I need a talk or a hug in the middle of the night and can’t have it, or because I wish we could do things like take vacations, or go out, or whatever. But strange as it may seem – our situation also provides us with many more opportunities for closeness and intimacy than lots of couples who see each other all the time.

    I’ve also learned that it’s OK to have my own interests and to enjoy my own life too – even the parts he can’t be a part of. I used to feel like it was some sort of a betrayal if I enjoyed something without him, but I’ve come to see that I need to “fill up my own tank” too.

    Sorry to blather on so long… just wanted to say hang in there and hopefully provide a word or two of encouragement.

    • What a beautiful solution to a difficult (and not all that uncommon) situation, Cat!
      Redefining both “problems” and “solutions”, and “let(ting) go of (our) picture(s)” of the right way to do things are the most freeing steps to finding solutions that work for all concerned.

      Bright Blessings ~ Karen

    • Oh, wow. You just made me feel so much more grateful for my situation. I can’t imagine living apart from my husband, but a million kudos to you both for making the arrangement work for you as best you can.

      Life really is all about making the most of whatever circumstances we find ourselves in. It is a huge testament to you both that you’ve been able to keep your relationship strong over 20 years in spite of the obstacles, and it really inspires me to appreciate what I have and enjoy the things we ARE able to do as a couple, rather than focusing on the things we can’t do.

      I will be thinking of you and your partner and sending you the best of wishes. It sounds like you’ve learned to handle a really tough situation with as much love and grace as possible, and I can’t say how much I admire you for that. Tons of love to both of you!

  • I found this Lady (Crowing Crone Joss) via a heart-catching-comment-trail – It may be encouraging to you and your sweetie…
    She was diagnosed with fibro 20 years ago.

    Love and (very gentle) Hugs ~ Karen

    • Oh wow, Karen. That such a moving and heartbreaking (and yet, also comforting) story! Thank you for sharing it.

  • Tyson

    Kelly, I just found your blog today. Someone in a LinkedIn group I’m a member of shared an article you wrote on businessinsider.com which had a link to your profile on brazencareerist.com which linked back here to your blog. Interesting how social media works.

    I can understand somewhat how you feel. As a caregiver it is very important for you to take time for yourself to relax, take care of yourself, and do something you enjoy. It will do your husband no good if you hit the freakout point. You need to keep yourself healthy and strong so you can be there for him when he needs you.

    My Dad has had multiple strokes throughout the years. In fact his first one was at age 13. He recovered well and kept on going. He is a fighter and is determined to keep on keeping on. Very inspiring.

    But now he needs full time care. He can still stand and walk, but only with assistance. I live with Mom and Dad and help take care of him. Mom works part time, and I’m with Dad when she is at work. I’m building my own business, my hours are flexible, so I work around her schedule.

    Mom has fibromyalgia and arthritis. She is in continual pain. I don’t know what it’s like to feel what she feels. But it is difficult for her sometimes. It’s not as debilitating as it is for your husband. And of course I hope it does not progress to that point.

    I try to do as much as I can for them. I’m thankful that God has blessed me with a patient and easygoing personality, but there have been times I felt like I just needed to back off. Sometimes I really feel like I just want to get out and live my own life. But I am living my own life and taking them along with me on the journey. I love them and want to be there for them.

    Actually, we recently got my Dad on Medicaid and got a home health aid who came in the first time yesterday. It will be nice once we get all established so that we are comfortable leaving him alone with her. Then I will be able to go out on my own time.

    My brother is bipolar, so I’ve seen how that can be. I’m sure you know that bipolarity is different from person to person. Some are helped by medication, and some are not. My brother tried many different kinds of medicine, but all made him worse. Some made him downright straightup psychotic. We had a lot of difficult times with him too. But he has been married for a year and a half and they’ve lived in their own place for a year. He is doing a lot better now. Keeping a regular routine helps a lot. Eating at set times; getting to bed on time every night.

    It is very important to take time for yourself. Find something you enjoy doing away from the computer so you can relax. I enjoy being outside in nature. I love gardening (you may pass on that one). I like living out in Amish Country Indiana, surrounded by fields and trees. I would not want to live in the city. But for you Kelly, find your own comfort zone, and take the time to breathe.

    • Oh, wow. First of all, thank you so much for sharing your story. If there’s one thing I learned from posting this, it’s that so many people are struggling with ill loved ones themselves, and the more we share our stories with each other, the less alone we feel.

      Second of all, my heart goes out to you. You are dealing with so many things all at once, and I can only imagine how exhausting it must be. Definitely take advantage of having the home health aid around to (as you so wisely advised me) take some time out for yourself. You’ve got a lot of weight on your shoulders, but you are being an incredible son and brother, and your family must appreciate you SO much.

      I can feel for your brother, too. It took me a while to figure out what worked best to regulate my BP, and it was a rough ride at first. But, once we figured out the best way of treating it for me, I can honestly say I forget that I have the condition most days. I hope your brother is on the path to that place. Just knowing you have the condition and seeking help for it means that he is.

      Hang in there!

  • kevvy

    Hi. Your blog has resonated with me greatly. My wife had fibromyalgia and it’s been a struggle for me as well. I feel burned out and close to leaving. It doesn’t help when there are things she could try such as changing her diet (she eats mostly sugar and carbs) or seeing a natropath perhaps. I try to work out if i would still be here if she didn’t have fm and I’m not sure i would be around still.i find myself speaking badly to get, becoming resentful of my life and feeling trapped. I’m damned if i do and damned if i don’t. I’ve thought about topping myself.I’ve thought about running away. I’ve thought about affairs. I’m still here. Just. Thank you

    • I can understand the frustration you’re going through. My husband is a very picky eater, and it’s so hard to see him making his symptoms worse when I know that just eating better and exercising a little would make a huge difference. But we can’t change other people; the best we can do is try to help them as much as we can.

      My heart goes out to you and your struggles. It’s exhausting to be a caretaker for someone with fibro, and it can take a real toll on you. Would you be willing to do me a favor? Please (and I can’t stress this enough) find a professional you can talk to about what you’re going through. We may not want to burden our loved ones by talking too much about what we’re dealing with, but you desperately need someone you unload to who can also provide you with wisdom on ways you can cope. Would you do that for me? I hate to see you in so much pain.

  • forevertrue1

    It was like you invaded my brain and stole my thoughts. It’s like you knew exactly what I was going through and wrote it out. “Killing me Softly”. I am in the same identical situation (just a different condition my husbands in). I literally feel the exact way you’ve explained here. My hubby’s a para T12. I wouldn’t trade him for the world, but it gets so frustrating, and flowers would be nice every now and again. But he’s a special soul that loves me so much, and ditto. I’m “the perfect wife” so to speak, but so resentful because of it. Your post was a bit much for me, let me soak it in. Thank you for sharing. 🙂

    • I feel for you. Being a caregiver and loved one of someone suffering from a condition like that can really take its toll–I know. But don’t feel bad for the resentment and frustration you must be feeling. It’s only natural. You’re human, and feeling those things doesn’t mean you love your hubby any less.

      Do you have a support group you can turn to to help you through this and to vent to when needed? Friends, family, a counselor, etc.? That’s been a huge help for me. Don’t think that you have to go it alone–caregivers need to be taken care of, too. (And, of course, you’re always welcome to email me at kelly@cordeliacallsitquits.com if you need some fellow empathy.)

      Sending huge virtual hugs your way.

  • illuminati

    i am Mrs mercy i am hear to give testimony of how i got back my husband, we got married for more than 2 years and have gotten two kids. thing were going well with us and we are always happy. until one day my husband started to behave in a way i could not understand, i was very confused by the way he treat me and the kids. later that month he did not come again and he called me that he want a divorce, I asked him what have i done wrong to deserve this from him, all he was saying that he want a divorce and that he hates me and do not want to see me again in his life, i was mad and also frustrated do not know what to do,i was sick for more than 2 weeks because of the divorce. i love him so much he was everything to me without him my life is incomplete. i told my sister and she told me to contact a spell caster, i never believe in all this spell casting of a thing. i just
    want to try if something will come out of it. I contacted DR. omoba for the return of my husband to me, they told me that my husband have been taken by another woman that she cast a spell on him that is why he hates me and also want us to divorce. then they told me that they have to cast a spell on him that will make him return to me and the kids, they cast the spell and after 3 days my husband called me
    and he told me that i should forgive him, he settled to apologize on phone and said that he still love me that he did not know what happen to him that he left me. it was the spell that the Dr omoba shrine casted on him that made him comeback to me today,me and my family are now happy again today. thank you DR. omoba for what you have done for me i would have been nothing today if not for your great spell. i want
    you my friends who are passing through this kind of love problem of getting back their husband, wife , or ex boyfriend and girlfriend to contact dromobaspellhome@gmail.com and you will see that your problem will be solved.

  • tess

    I am glad this popped up in my search. I am in this same spot right now & feel so torn. Thank you for posting this.

    • And I’m glad you posted this comment — I needed to re-read this post myself right about now! It will be OK; we’re all in this together. Reach out if you ever need some moral support. 🙂

  • marsali

    Dear Cordelia, I’ve just come across your blog and happened upon this post. My mom had fibro, and you have described so much of her life. Just earlier this evening, I was thinking about and missing my mom very much, wishing that I could talk with her, and then here is your blog! There wasn’t much known about it most of her life, so she too was rarely believed (even by my dad, and eventually by me, sad to say). I had so much anger toward both of them. Then, most recently, that whole cycle thing “Nicole” talked about. Mom had other autoimmune issues as well, and emotional things. As I read about you and your husband it brought me close to Mom for a few minutes and gave me an opportunity to “talk with her” and heal and say sorry. She really did try the best she could. So, thank you! Your article HAS helped someone.

    I am also a recently….”re-retired” (don’t ask, long story..lol) counselor, and yes, you were (I hope you have found what you need) burned out. I went through this as a counselor. Actually, I think I would say, I am still going through it. Most of the time I am better, but went back to my old job to help them out for six months, and well, let’s just say I can relate exactly to most of how you felt here, even toward my own children, and the anger at mostly myself is almost intolerable. (Of course, this week I am also…um..hormonal and trying to transition back into mommyhood, and bumping up my writing is kind of freaking me out a little). Anyway, peace to you, Cordelia, and may you find exactly what you need when you have your burnout moments. It is normal, and is okay that it happens sometimes as long as you don’t stay there. Keep your open communication with your husband and keep taking care of you (of asking someone else to once in a while…like getting a massage or something). Many blessings to you both!

    • I am so glad this post touched you like this, and so grateful you reached out to share your story as well. Living with illnesses like fibro (and living with those who live with them) can put you in a shadow world where you feel so isolated from “normal” people going about their “normal” daily lives. Just realizing that other people are going through these same struggles (and that the emotions you feel are a kind of normal themselves) can be such a huge comfort.

      Since writing this post, we’ve managed to hit on a work/life balance that makes things a little easier overall. My husband is no longer working (trying to apply for disability benefits), which means he has plenty of time to rest up and cope with his symptoms. I’m working from home, self-employed, which allows me to still take care of the household without feeling quite so frazzled and boxed in. Financially, it’s a struggle, but it’s worth it for us because overall we’re able to be a lot more patient and cheerful about things, even when they get bad.

      Sending tons of love and support your way. 🙂

  • erianna32moric

    My lover dumped me for any another woman, and i was divorce by my husband with my two son after 8 years of marriage, and also i really love him, so i contacted Doctor Akim for a love spell to get my Husband back, to my greatest surprise he cast a love binding spell to get him back for me and my lover came back after 48 hours. i will advicde you anyone looking for any kind of spell should contact Doctor Akin via email address: {bestlovedoctor@yahoo.com}

    From: Ontario

    Name : Erianna Moric

  • nikki

    I know how you feel. My boyfriend has fibro- and its hard on me. Some times I thought that he was being a wimp and it took me a while to finally understand the disease. You are not a bad person. I’m stuck right now trying to make a decision on whether or not I should have a baby early (I’m 17 now and just graduated). I’m scared that if i wait too long that his condition will get worse and he won’t have much play time with the baby or anything because he hurts too much. I don’t know what to do. I want to go to college and work but then again I want to have a child at the end of the age of 18 (turns 18 in 3 months) and having the baby at 19. As I said I don’t want to wait too long and I feel like as long as I have him with me during the whole pregnancy that things will be okay. We will be okay but everyone around me says otherwise. My parents disagree because its before college but I feel like even telling them about my bfs conditions they don’t understand. He and I have been dating for 2 years now almost 3 and I’ve been best friends with him since we were kids. I really need help, some advice, opinions. Having a baby feels right to me.

    • I’m not a relationship expert or Miss Manners or anyone with any life coaching authority, but as someone who’s concerned about you having the best life possible, I would absolutely advocate that you NOT have a baby right now. You’re still young and deserve to go to college, explore your career options, get married if that’s in the cards for you and your bf, and figure out the direction you want your life to go in before you bring a baby into the picture. Babies are huge emotional and financial responsibilities, and while I’m not saying it’s bad to have one, I AM saying that you don’t want to restrict your opportunities so early in your life when you still have many years ahead when motherhood will be an option for you, and when you’ll be more financially stable and emotionally ready to take on the enormous life-change that a baby represents.

      Also, and I think this speaks more to the heart of your personal situation: fibromyalgia is NOT a death sentence. I’m not sure how bad your bf’s fibro is, but many people live with it for years and years before it gets so bad it starts restricting their lives. In many cases, even if symptoms get worse, they can find medications and coping mechanisms and lifestyle changes that still allow them to live a full and happy life even though they need to rest more, can’t do certain things and have good days and bad days. Once my husband stopped working (he’s now applying for disability), he found his fibro much more manageable and we still feel we lead a happy life together — we just have this obstacle we have to deal with, but we deal with it together just like you deal with any of the “baggage” you and your partner bring to a relationship.

      You have no way of knowing a) what your bf’s condition will be like in the future, and b) if you’ll be together with your bf for the rest of your lives (that’s harsh to say, but it’s true. A lot can change over the years). I believe you should live with someone and be married to them before you commit to raising a child together, and right now you’re putting the cart before the horse because of worries over what MIGHT (but very well might not) happen in the nebulous future.

      Again, I’m not a psychologist or an expert in any way, and it might actually do you some good to sit down and talk with a counselor about the struggles you’re having — your boyfriend could join you, as this is just as much his decision as it is yours. Getting some professional advice from an impartial third-party could really help you straighten out all the things you’re thinking about right now. PLEASE make sure to really think this through 170%; it’s not a decision you want to make without doing at least that much.

    • CobraCatcher

      I have to agree with Cordelia on this one. You are so young and as a Fibro patient myself (who also desperately wants a child or two and I’m 30!) I think you should wait at the very least until your mid 20’s. No matter how much my Fibro is bothering me, my nieces and nephews bring so much joy to my life that it doesn’t matter how terrible I am feeling……they bring me so much unconditional love, joy, and happiness that I would ignore my own pain and suffering just to spend time with them because I am so afraid of never having my own children and they are the closest things to my own children. Trust me, he will be just as happy and loving towards your children if you waited as if you were to have them now.

  • CobraCatcher

    Fibromyalgia is the reason I’ve lost two significant others. The first I had initiated the divorce because I knew how he was feeling about my having this problem. He would blame me for his stress and anxiety, which I understood to an extent, but he just became very unpleasant to be married to because he blamed me for all of his problems, yet he was able-bodied and could actually have held a job if his ambition were to be employed, but he much preferred being “self-employed” and not making much money at it. After having been together (dating through marriage) for almost 7 years, I completely fell out of love because I never felt loved by him anymore, yet I was constantly offering what little help I could give (massages, making him something to eat, just whatever I could do), but I could never make him happy because of the amount of time I spent in bed mindlessly watching TV trying to ignore the pain. The second man I loved the most, but he also had no college education and therefore no career ambition. I had warned him completely of what he would be in for if he wanted to be with me, but I think he thought I must have been exaggerating. After 2.5 years he just could not deal with it any longer. What angered me the most about him was that he constantly pressured me to get a job, especially after he was fired from his (and mind you we were now living with my parents because neither of us had a job at the time), but I did get a job and it was something I actually really loved doing mentally, but physically I just could not keep up and within 3 months of my being hired I had started to get really sick (nausea and vomiting for 12 hours straight and sometimes having to go to the ER, and also don’t forget about the fact that I NEVER slept well) and I was written up twice at my job because as someone working part-time, I didn’t have the luxury of any type of sick leave and so I quit rather than being fired. With him being an able-bodied person, I only saw him turn in ONE resume since he’d been fired from his previous job. Yet he was so upset with MY “lack of ambition or drive” that it really upset me that I had warned him all about what he would go through if he wanted to be with me. The best I could do is get a LITTLE bit of house cleaning done and that’s about it. Sometimes I had to miss our friends’ parties because I was too sick in one way or another, but we did manage to go out at least twice a month, maybe more sometimes. The only thing I will say is that he was pretty kind to me and did not act like I was such a burden during the times that I was really super sick……the 12 hour vomiting ordeals, but as I did with my first (and only) husband, I constantly offered massages and to get him something to eat when he was feeling just a little low himself. He never once bothered to care how much I would go out of my way to help with whatever I could physically handle. After that relationship ended, I just kinda gave up on ever being married again. I have so much love to give, but of course no one seems to want it because of how sick I am. In fact, today my own brother accused me of doing nothing all day, every day just because I got a little annoyed that he left a dirty dish on the counter after I had just unloaded the clean dishes, quick-washed and rinsed and loaded the dirty dishes back up ALL after feeding our cats and dogs and washing their dishes by hand and having spent about 5 hours in a courtroom for Jury Duty yesterday, which absolutely killed my back. I can’t tell you how many times I’ve thought about committing suicide in the last year or two not only to ease my pain, but also to not be such a burden to others. Fibromyalgia is the one of the most difficult illnesses to deal with in life because there is no cure and the only thing that is remotely helpful are narcotic painkillers. I don’t know what your husband may be on for pain, but I can tell you that the Fentanyl patches have been pretty helpful, but even with those you still have to be careful how much you do physically, otherwise they may not be as helpful. My hope for you and your husband is that he has not felt like enough of a burden to you that he would be thinking of suicide. I realize how selfish suicide sounds, but no one wants to be a burden to others and to be resented for something they just can’t help.

    • I can’t begin to imagine what it feels like to go through you’ve gone through and are still going through, although I do know quite well the toll it can take on you and on your loved ones. And my heart goes out to you so much.

      First off, please NEVER act on those suicidal thoughts. Find a counselor, call a hotline, do whatever is necessary to avoid taking that path. I know fibro is exhausting mentally, physically and emotionally, but you are loved by more people than you know (including this random stranger on the Internet), so surround yourself with that love as much as possible to remind yourself, strengthen yourself and keep yourself going

      Second, I’d highly recommend connecting with others who are suffering with chronic pain conditions. My husband recently met someone else suffering from fibro, as well as a new friend with a mitochondrial disorder that has all sorts of similar symptoms. Just being able to talk to people who know what you’re going through and who are struggling with the same things can be such a comfort and relief, even if it’s just connecting with them online rather than in-person (which can be hard for people with fibro anyway given their fluctuating energy levels and pain levels).

      What you are dealing with sucks, and it sucks balls. (Pardon my French.) But don’t give up and don’t focus on those people who don’t understand what you’re going through. Focus on the awesome, the love, the good people, the days when the pain isn’t quite as bad. Hell, focus on one minute of sunshine if that’s all you’ve got that day. And keep fighting, for all of us, please?

  • CobraCatcher

    I also want to add one more thing: it is TOTALLY ok to go out and enjoy yourself with or without friends as long as he is able to take care of a few necessities like heating up some food, going to the bathroom on his own, and taking his meds. I never had a problem with my significant other going out on his own to spend time with friends as long as I could take care of myself. It was quite nice some days that I could be alone and ok enough to spend some time alone since I didn’t always need a caretaker. Oh, and one more thing that is different from your husband and myself is that cold weather is the thing that bothers me……warm, dry weather is better for me, but I know each patient has a few different experiences as far as that goes. Don’t stress too much if you need some away/alone time. If you are really that worried, perhaps you can call on a family member or friend to come stay with your husband during his times of bed rest just to keep him company so that you don’t feel obligated to always be around because thankfully Fibro is not life and death situation. I hope I helped a little as I always have been such a loyal and helpful person. Please message me if you would like to talk about anything, though I can’t guarantee I will be able to answer within 24, but I will try my best! Sending some love and prayers and please tell your hubby a Fibro friend says hello and that I hope he will have some better days! 🙂 <3

    • Speaking of fibro friends, if you ever want to connect with one, I’d be happy to share your email with my husband. He’s collected some awesome “sick friends” lately and I know that talking with each other about what they’re dealing with has helped all of them greatly. Shoot me a line at kelly@cordeliacallsitquits.com anytime. 🙂

  • Alfred Peters

    As a husband of a wonderful woman with fibro I’m right there with you…

  • Jess

    I know this is super old but Thanks so much for writing this. My fiance suffers from Fibromyaglia. I often get angry and upset when he does not do certain things, then I take a step back and realise he can’t help it. It kills me to watch him suffer everyday and the doctors just ply him with different drugs to make him out of it. It kills me to hear him say he doesn’t know how much longer he can take this. He does his best to be happy and act like everything is okay but I know he isn’t. Thanks for writing this, it is nice to hear from other partners and wives of fibro patients.

  • casey doyle

    I can relate, and thought I was a selfish ass for thinking all the same things. I feel trapped as well and at a young(er) age it scares me to death that this may be my future. Not sure how I feel about it to be honest, still trying to work through a lot of mixed feelings on the matter. I hate feeling chained to the same illness and circumstances, but I also want to be there for her too. There are needs that are not being met. It’s not her fault (it just is what it is), but it’s still an issue nonetheless. Glad I’m not the only one with these feelings and struggling to work through them.