I have written and reworked this post to within an inch of its life. I can’t seem to put into words my struggles without sounding like that one person who can’t stop complaining about her lot in life. That is SO not how I roll but it seems to be who I am right now. So, because I cannot escape her, I’m going to attempt to get her out of my system. I need a good emotional purge. I need to get my frustrations and disappointments out of my head and away from my hurting psyche. Call it complaining, call it a rant, call it whatever you want. I’ll call it an exorcism of thought and you may consider yourself thoroughly warned.
In recent years, as a society, we have become more emotionally aware than our predecessors. We have come a long way in our understanding of depression. Yet, it is still viewed as a taboo and out-of-bounds subject. Despite our best efforts, the myth still exists that depression stems from a weakness of the mind, something that only requires a strong constitution to overcome. Unfortunately a mind over matter attitude doesn’t always work when dealing with the kind of depression that many people are battling. I’ve also discovered that, for so many who live with chronic illness, depression walks hand in hand with battling that illness day in and day out. And it is no wonder considering what chronic illness does to your life.
So at the risk of complaining even more than I usually do, I’m going to write about this as openly as I can. I realize there are so many who are suffering much, much more than I in both body and spirit. I hope that I can be sensitive to that as well. I realize that I have a lot to be thankful for. That doesn’t seem to be the problem. I think what may be happening is that I’ve lost the ability to enjoy the things that I’m grateful for. Hmmm, I’m not sure that even makes sense to me. Let me see if I can untangle my thoughts.
It is time for some total and painful honesty. I think it is actually long overdue. I am so depressed I can’t see straight. I’m not talking about the “gosh I stubbed my toe and now I’m having a bad day” kind of depressed. I’m talking full on “don’t even want to get out of bed” kind of depressed that knocks you on your butt and kicks you while you lay there sobbing. This is an all-consuming, spirit crushing, emotional quagmire of deep, dark depression.
Ugh! I hate admitting that, especially on this forum. It feels like I’m admitting to a shameful secret that speaks to my inability to pull it together. I feel weak and defeated like I’m not measuring up to my own expectations of who I’d like to be. I’m loath to admit just how bad it has gotten. I have people telling me how inspirational I am, how strong I am, how much they admire my positive attitude in the face of suffering; so to admit that, in truth, I’m withering on the vine seems like an act of monumental failure on my part. While I appreciate the compliments of friends and family who praise me for my strength, resiliency, and a smile that doesn’t quit, I feel like a fraud. Up until recently I might have agreed with them but it pains me to admit that I’m done. I don’t want to be resilient or strong anymore. To tell you the truth I feel as if I’ve let everyone down including myself.
See what I mean about myths of depression? I’m even applying that stereotype to myself. Shame on me! But I’m exhausted in a way which is beyond description. Regardless of the sadness I’m actually too tired to smile anymore.
I DON’T FEEL GOOD…
I DON’T EVER FEEL GOOD…
And, barring some miracle of science, I’ve been told that this is the best I can expect of life for now. In fact, it will probably only get worse as time progresses. What exactly am I supposed to do with that?
A girl can only take so much, right?
I’m tired of always trying to be positive. I’m sick of smiling through the pain. I’m done being the pillar of strength that others have come to expect. I think I may have finally hit the bottom of my reserves. No, it feels worse than that. I’ve hit the bottom of the barrel and I feel like I’ve bloodied my poor, useless fingers trying to scrape through to the ground below. Like I said, I’m complaining, but I did promise honesty and no matter how much I wish it weren’t so, it is.
I’ve felt it coming on for some time now. A person can only take so much constant physical pain and the subsequent disappointment that accompanies the necessary life alterations that result from that pain before it takes its emotional toll. The insidious part is that I feel guilty about my depression like it is some flaw in my personality that needs to be corrected. Cognitively I know this isn’t necessarily the case but I also find that it is very difficult for my head to tell my heart how to feel. I know that is exactly what I need to do but having the energy to meet my own needs seems to be a bit of a challenge.
I think that might be the issue. This feels like more than a dark mood that I can conquer using mind over matter. It feels like I’m hollowed out and drowning on the inside. I feel like all I do is complain about how I feel and how much I’m struggling. I have no life outside of the pain. I spend most of my days sitting on my couch planted firmly in front of the TV alternating between tears and trying to numb myself with mindless entertainment. I probably need to be on medication but I’ve gone down that road in the past and it did not go well. And by “not well” I mean disastrous. Besides, I think whatever is going on chemically has ultimately come from my endeavors to accept and deal with my circumstances.
I feel lost and hopeless. I don’t feel like myself. I can’t be myself with these limitations. For so long I’ve defined myself by my ability to run, my strength of body no matter how much it hurts, my strength of mind, and my ability to persevere through some really hard times but I’ve finally caught up with myself. I feel defeated on so many levels. Like my body does not allow me the freedom to be who I truly want to be in life. I am a highly motivated person, driven and successful and yet my body thwarts my every move. It has always been this way and I’ve forced my way through or around the pain anyway. Sadly I think I may finally be facing a mountain I can’t climb. Even worse is that I can no longer find the motivation I need to climb said mountain.
I’m finding this terribly difficult to explain properly.
I feel stuck in a never-ending spiral down the rabbit hole. From the moment I break into consciousness my day is an uphill battle and it all goes downhill from there. It is extremely difficult to motivate yourself to get out of bed in the morning when the first thought you have upon waking is “Oooouuuucccchhhh!” Yeah, not the best way to start the day.
Even on a rare “good day” by the time I get out of bed I’ve used up any energy I had just to roll over and force my feet to hit the floor. How does one recover from that? How do you muster the oomph you need for the day when it was never there to begin with? Depression is a tricky business that way. You think OK I really need to get myself up and out the door today but by the time you get dressed all of the energy you were prepared to dedicate to that venture has been spent brushing your teeth.
What frustrates me is that I feel like I’ve been here before. After my hysterectomy I was plagued with a deep, dark depression that had been building since my teenage years. I worked hard to pull myself out of that pit and yet here I am again. I feel like I’ve learned nothing, that I’m right back to square one. I realize that probably isn’t the case and that, if I could step back and look at it objectively, I would find that those experiences are helping me now. The problem? It is REALLY difficult to see things objectively through the dark sunglasses of a depressed state of mind.
I find myself wondering how in the world I’m supposed to pull myself out of this latest emotional death trap when just the thought of feeling the pain as my feet hit the floor makes me want to curl up in the fetal position and disappear. I know, I know. Many of you are sitting here reading this and thinking, “Holy cow what a defeatist attitude.” Yes, it is. The problem is that, when you feel lost in anguish, it is difficult to find your way to a positive attitude. I’m a big fan of positive thinking but there are times when you can exercise all of the positive thinking you can muster, it just doesn’t make a difference. Your mind becomes a hostile environment in which you want nothing to do but escape.
It is exhausting dealing with chronic pain and just as tiring to work through the emotions that come with a life of illness. And now you see we’re right back to the beginning. I realize what needs to be done but having the oomph to do it when all of my oomph is simply non-existence leaves me baffled as to how to proceed. And I HATE it! I hate how contrary it is to my nature. Sure, sure I need to go easy on myself, allow myself time to adjust and reconfigure my life around pain but it feels so contrary to my personality. The doctor says rest and all I hear is “lazy” reverberating through my head, an obnoxious reminder of my limitations.
I’ve got to figure out how to reconcile who I am, who I want to be, with what I am capable of doing. Finding ways to do this is proving to be more challenging than I could have ever imagined. If you would have said to me a few years ago that my health would continue to decline I would have smiled at you and said, “Ha, I can take it!” Oh the blind courage of the uninformed. I’ll tell you what I have learned is that I need to withhold any and all judgment. I thought I was a strong person, capable of handling whatever life threw at me. And maybe I still am but I’ll admit that my courage is waning, my smile is a little lopsided and, if I seem like I’m not quite myself, it’s because I’m not.
What I am grateful for are friends and family who see this drowning ship and still want to jump aboard to help. Thank you for that. Thank you for not trying to tell me it will all be ok; it is nice to know that you understand and validate my sorrow. Thank you for recognizing that it isn’t ok. Thank you for understanding when I don’t return your calls right away. (I’m thanking you in advance for that so that you’ll know it has nothing to do with you and everything to do with my inability to be social right now.) Thank you for not telling me that I just need a little more faith. I have faith otherwise I think I’d be catatonic. But it is nice to know that you have faith in me. That is what I need most is your faith in my ability to recover… eventually. Most of all, I’m thankful for God who I know has faith in me or he wouldn’t have placed these challenges in my path. I’m going to hold onto his faith in me knowing that he loves me even when I can’t seem to give him anything in return.
Well? I’m not sure if that helped or not. Maybe it helped one of you, my readers, knowing that you’re not alone. I’m afraid this can’t be fixed in one blog post. Maybe I’ll just swallow my pride and blog my way through this next chapter taking you with me on a journey through some emotional healing. On the other hand I’m feeling a bit non-committal these days so we’ll see…
Thanks for reading, hope you survived!
Does Your Journey Seem Long? 
I hear you. I am there with you. I have nowhere near the amount or severity of the physical ills you have but I do have lots of things wrong with me physically and mentally and emotionally. I am quite a bit older so one expects things will get worse. I fight myself. I have no answers. I, like you, are blessed with a loving husband but they can only take so much and listen so much. Yes, we have many blessings and I feel ungrateful and lazy and on and on and on. I will not even say what I pray for because it is so much of a sin of despair. All I can say is I hear you. You are not alone. And I am glad you wrote this piece. You remain in my prayers, Ellen xx
Ellen, I am so sorry that you are experiencing such a dark time yourself. You are always in my prayers and I’m grateful for you and all that you do to send love and support my way. Thank you for letting me know that I’m not alone! Love, Stina
Like I say, I do not have the serious diseases and ailments you have. You are not alone though. I will step up the prayers. It is too bad you are too sick to do exercise because that elevates the mood some. Even just stretching. And I cannot take any antidepressants but what has helped me is RESEARCH GRADE St. John’s wort. I get it from Hypericum Club. See: hbcprotocols.com/sjw-clinicalevidence.html Though I don’t sound undepressed now taking it, I would be far, far worse if I were not taking it and it did help me a lot. But only this brand. I have tried others and they don’t work at all. Maybe it might help you. Meantime, sending hugs, however lame that sounds.
Ellen, that is not lame at all! I love your hugs and I know that one day we’ll meet, most likely in the next life, and it will be my great honor to give you the biggest hug ever!!! I will definitely try the St. John’s Wort. My body doesn’t react well to antidepressants so this might be a good option for me. I’ve got to try something.
Oh, your comment brings tears. But I feel the same way. I really, really hope the SJW will help you like it did me. It brought me back to doing art years and years ago. Don’t expect miracles and it may take awhile. For me, I am ultra sensitive to antidepressants which is one reason I can’t take them and I noticed the difference right away. But that brand I sent you the link to is the only research grade SJW I know. All the others, who knows what’s in them. Okay, so praying you will get that boost. And the biggest hug ever right now! ((((0))))
Hey, part of depression is feeling like people are sick of you and judging you and pitying you (some of them are) but for the most part nobody is actually feeling negatively towards you–least of all people who read your blog! I need to identify with other people who are living with chronic illness, and you have more than your fair share of it (chronic illness). I’m glad you’re talking about being depressed (feeling oppressed by disease) and your struggle to reconcile the life you envision with what is realistic for you right now. I have to do that too, and it’s frustrating. Last year I was feeling how you described above, for most of the year–I wish I would’ve had a blog back then so I could reflect on it now and appreciate that I’m feeling better at the moment. It’s good to keep a record of our lives, both the good and the bad times. It’s good to share it with other people, so that we don’t feel alone–so that YOU don’t feel alone. You’re still an inspiration to me, especially when you’re coping. Because coping is hard. Feeling good and kicking ass is easy. XO
Also, I’ve been taking Welbutrin XL for years, and it REALLY helped me. It mediates your norepinephrine a bit, so it actually gave me back some energy in addition to the serotonin that I desperately needed (did you know that most of your serotonin is produced in your intestines? Hence why people with IBD are VERY prone to depression). I know pills aren’t the answer for everyone, and I don’t think I’ll ever be able to wean off of it (I tried once) BUT my quality of life improved remarkably when I started taking it. So, it’s a choice of “what are the consequences of this drug long term (liver probs, etc.) versus the quality of life it has offered me. And for me it’s a no-brainer, I’ll continue taking it. XO
Thank you so much for the support and advice. I know I probably need to go down the road of exploring meds again. It was so terrible last time, several drugs they tried caused me to hallucinate and one even made the depression much, much worse. Sometimes it is hard to find the energy to do even what I know I need to in order to feel better. I realize that sounds like a lame excuse but it is how I feel. Thank you so much for your kind words, you give me hope!
I wish more people would talk about this more openly! Mood disorders make the sufferer feel so isolated but more people, including myself, are in the same situation than anyone realizes because nobody talks about it. This post was like a description of my own life. I take both pain management and mood maintenance medications but I still have days, weeks, months like this. I try to be open about my situation and the way that I choose to manage it so that others will know that they are not alone and that they have choices. Thank you for sharing in such a public form. I hope it helped you and I’m certain it will help many others!
Thank you for reading and for your words of support and solidarity. Sharing this way was scary but I’m glad I did it knowing that I’m not alone. May you also find peace of mind and comfort in your dark days and thank you so much for commenting!
I am stunned at your honesty and very appreciative that you had the courage to do so. I suffer from a hormonal depression and although I blog as well, and I’ve written countless rants such as yours, they sit in the draft pile. Reading yours astonished me at how genuine you allowed yourself to be, to share that part of you with the world is so brave, and makes you human and I’m guessing very relate able to anyone who’s even had smidgen of depression. What do they say in AA? Admitting is the first step? I think that applies here too. Thank you for sharing, I’m sending well wishes your way.
Anya, you are too kind! Reading your comment makes me glad that I finally did just post it. It was scary but your words give me courage to be honest. Thank you for reading and for your lovely comment, it gave me just a little more strength to face the day!
Life is so hard sometimes and sometimes life stinks. Why is it so hard to give ourselves permission to grieve over our losses? Why can’t we admit that sometimes life is too hard and we need time to process where we are at and where we can go because our previous options are no longer available to us? There have been times when I have wondered “what is the point?”. I have learned in the past and I have to keep relearning that the only way I can dig out of that hole is to do something, no matter how little, for someone else. It may be as little as smiling at someone (which isn’t easy when you feel like you do). But it has amazed me how that little thing makes a difference because sometimes they smile back. A simple positive interchange gives me a little boost. That boost doesn’t get me out of the hole but sometimes it is enough to let me know there is light at the top.
Thank you for your honesty. Your honestly may be helping someone else out of their dark hole.
Thank you so much! I love your suggestion. I was just thinking that I need to find some way to reach out to others, even if it is small and simple. Sometimes I’ve had someone, a stranger, just smile and say hi and it has made my day. Thanks for the encouragement, I truly appreciate! I’m off to offer someone a smile! 🙂
I am so sorry for your pain. I have not experienced anything close to what you’re going through. The closest I can come is when I was pregnant with my first child and felt sick constantly for 8 months. And yes, it does make you depressed. So I can only guess at what you must be feeling with real pain. I am keeping you in my prayers.
Thanks for the prayers, they help more than you know!
Wow Girl, I feel you. I really really do. This has been my life some days, especially with the dark cloud of depression and the exhaustion that seems to come with Endo. I’m not sure why…but when you are in pain and have no energy, you just start off from a terrible place and it makes it so so hard to climb back out. I have had these days and my endo is not nearly as terrible as yours is at the moment…but it has been my fear that it will continue to escalate which is a terrifying prospect. I have a few small words of wisdom that may or may not help. I haven’t read your blog yet (just found it through this post) so I am not familiar with your situation, so I apologize if you’ve blogged about this already or already tried these ideas…but I thought I would reach out because your post is so well written and describes my exact mind set on several occasions.
First off with Endo, I have found that eliminating certain foods has been helpful in feeling better. I no longer drink milk or eat red meat and all other meat that I eat is hormone free. I have enough hormones in my body to start with and eliminating all the excess ones has been helpful. I also try to eliminate high frucose corn syrup and I do seem to feel better without that in my diet. I’ve also tried to go all natural in products that I use on my skin (makeup, lotion, etc) and avoid things that like toxins. As far as the exhaustion…I have not found a way to combat that. And it’s so hard to explain to someone how run down and tired you feel. Like you, I feel lazy and like I should be productive, but all I want to do is sleep or lay around. I hate it and people don’t understand!! It’s like this tiredness that reaches right into your soul, it’s so deep. I guess working out can help, but when you are tired, it’s very hard to have the energy to do so! Plus I find that when I’m really tired, exercise just makes me even more tired. Naps do seem to help to revive me some, especially in the afternoon and I can get a second wind and sleeping in a bit later in the morning helps too. I work full time though, so that’s not always an option. I am currently on the continuous BC pill which is sort of managing the pain for me (my endo is on my bladder which is interesting) and so I can go a few weeks without pain and exhaustion…but it does come back. I hate being on the BC pill all the time, but at the moment it seems to be the best thing for me.
Secondly, I have had depression for much of my life and trust me, when I started to feel weird and suspected Endo, it wasn’t fun and only increased my depression. I have had those days where the future seems bleak and scary. I wonder if I’ll always be able to hold a job or if the Endo will continue to get worse. But recently I have done a lot of growing and learning about myself and about how the human mind works. I highly recommend reading: Eckhart Tolle, A New Earth, or An Untethered Soul by Michael Singer or getting this workbook: Get Out of Your Mind and Into Your Life. I have learned that the little voice inside my head isn’t me and it doesn’t always want the best for me. That is the part of you that obsesses about how you feel or worries about the future. I’ve learned that worry is useless as it is just a waste of energy (and energy is precious to us!). And being present in the moment is all we have. It’s been very freeing and I find that I am happier now than ever before. If you want to check it out…I’ve written some posts about it on my blog that you might find helpful. The other thing I’ve learned is that the more we struggle against something, the worse it gets. It’s this paradox. We think that struggle is how to fix something…but really it’s the worst thing we can do. Acceptance is a big big thing for me right now. Trying to accept all the circumstances of my life. It’s hard…but I guess if Endo is the worst thing I ever have to deal with…I’ll be okay.
I really wish the best for you. I know how this is…I have been there. And it often does feel like you are stuck in the dark in a circle of never ending misery…but it can get better. There are ways to change your thought patterns. It’s funny because I never believed it before, I thought my thought patterns were part of me, who I am…but now I am finding that it’s true. You can change your thought patterns. You can realize that you are the awareness inside you and not that little tormenting voice that makes you unhappy. And you are more than your body too…I think meditation might help when you are feeling particularly horrible.
I hope this has been somewhat helpful! I want to reach out and hug you Sister!!
Thank you so much for your kind words and for reaching out to me! I love your suggestions. I see from another comment that you’ve had a chance to browse my blog a bit. I’m not sure if yo’ve read the part about my having a hysterectomy way back when but since that time my body has continued to go haywire, manifesting some pretty nasty chronic illnesses. I thought endo was bad, and it was, but this stuff is worse. I tell ya’, life certainly gives me a run for my money! I loved both of your suggestions and I’m especially excited about the books. I’ve tried changing my eating habits to help with my Crohn’s disease but Crohn’s is nasty and my body didn’t respond well to the changes I tried, I keep trying though. I’ve heard of both of those books before and been told by so many people how great they are. I think I’m going to acknowledge that nudge from the Universe, God and go ahead and read them!
I loved that you reached out to me. I loved that you care enough to offer help and advice. I love that you are willing to share with me so that I know I’m not alone in my battles. I’ve taken a quick look at your blog and I’m excited to read more. I always have a tender place in my heart for any woman who suffers from endo. It is a terrible, nasty disease that is greatly misunderstood. It’s effects on the mind and body are more far-reaching than modern medicine truly understands at this point.
Thank you for the hug and right back at ya!
Thanks for replying back! And I’m glad the universe has nudged you enough to try out the books I mentioned! They are truly great. A friend nudged me toward them and since I’ve been trying to nudge others! haha. I agree that it’s sad how little docs really know about Endo or how it feels to deal with endo. My thought is that it could be caused by toxins in our food and environment. Maybe it’s caused by microwaving plastics or by using plastic cookware? Or maybe it’s from pesticides on our food or hormones that are injected into animals? I feel like that is a biggie. We are ingesting strange hormones whenever we eat meat! What can that be doing to us? It’s scary to think of. It’s also pretty hard to go “natural” completely because of the time/energy involved, but I think any small changes could make a difference. I have a hard time believing that these cellular changes where uterine lining cells migrate is something genetic. I feel like it has to be all this scary stuff we’re introducing to our bodies! I mean before there were the chemists we have today, this stuff was not seen in our environment! It could also be our individual tolerance to such things. I notice that I am very chemical sensitive when not on the BC pill. So my endo seems to be related to chemical sensitivity. I’ve been allergic to deodorants, soaps, detergents, even toilet paper! For a while there I had to carry my own TP with me wherever I went. (I switched to the non-bleached which seemed to help). Anyway…just some food for thought about what might be causing some symptoms for you. Of course, no one really knows….but it’s a start to think about everything that goes into our bodies. I actually don’t write too much about Endo on my blog at the moment…but I’d like to touch on it more. It’s hard to have an “everything” blog…but honestly, I want to write about whatever I want to write about and I like your idea of having it out there for posterity. That’s cool. Like an online journal. Anyway…thanks for chatting! If you ever want to email, you can find me here: victoriaangst@gmail.com
Oh thank you! You are awesome. I think a lot of those same things when it comes to our bodies and the environment we are currently subjected to. My Rheumy and my Obgyn both speculate that Endo could be related to autoimmune issues as well since soe many with Endo end up like me, dealing with other autoimmune diseases. Who’s to say that our environment and what we put into our bodies doesn’t play a huge role in how our immune systems behave. We live really close to a plant that disposes of medical waste and I’ve wondered if that correlates to my symptoms getting worse over the years. It is too bad that it takes so much time, energy and money to extricate ourselves from all of the yuck out there. So nice chatting with you as well! It’s nice to hear from others who are on the same page!
I understand way too well. I was in that place recently, and I felt like I couldn’t tell anyone because we’d just bought the house, and shouldn’t that make me happy? I knew everyone would say “Oh cheer up! Remember how long you saved for that house? Doesn’t it make you happy?” Well yes, it does, and no, it doesn’t. I know it should. I am pleased with it. But my heart is shattering for a million other reason, and the vague happiness in the things I’m grateful for is just…distant and unrelated. I felt like no one would understand that. Luckily I had an online friend reach out and validate all my feels and got me through the deepest worst saddest parts. I feel to be on the upswing, at least at the moment. I hope you are too.
It is so nice to hear I’m not the only one who gets depressed even when everyone else thinks I should be ok. I wish people understood what chronic illness does to your life, it seems to rob us of what should be or happiest moments. Thank you for this lovely comment! Glad you’re on the up swing!