The True Mental Anguish That Comes From Chronic Illness

I had a blog topic all picked out to write on today and then I reconsidered. Normally, on FightingWithFibro, I always try to discuss meaningful topics and (try to) provide helpful ideas to manage them. Today, however, I’m deviating from that path, to talk about another important topic when battling chronic illness. The incredible toll it takes on your mind, body and spirit and the anguish that accompanies it.

I am always the first person to say that I choose to live with gratitude and acceptance; that despite all the challenges I live with, I instead choose to focus on accepting the life I do have and being grateful for the positive things in it. And that’s true. But want to know what else is true? Sometimes, gratitude and acceptance can suck it.

This past month, a Fibro Fighter like us, whom I greatly respect, tried to take her life. Thank God, she was saved, at the last minute, but the pain and despair in her heart must have been all encompassing to have done so. She is someone I never would have expected to attempt suicide and moreover, I had had a fun, light hearted conversation (via Facebook) with her, just hours before. Only proving how flawed the absurd notion is of “someone I would never expect” and how well we put on airs, despite our hearts being in the pit of despair.

That same week, I had a reader reach out to me, who was at her wit’s end after being cut off her pain meds. She was asking for ways to fight the providers who force tapered her and was facing a very serious decline in her overall quality of life.

With both of those strong, constantly fighting souls, weakened to such a state of despair, I’ve decided to write this post, instead of my original. Because, they, like so many others, who reach that level of desperation, are no different than the rest of us. Myself included.

So instead of writing my planned post, instead, I’m going to say that I’m a little bit broken right now.

  • I’m so tired from the Chronic Fatigue Syndrome that lifting my legs feels like I’m dragging cement shoes. It’s difficult to keep my eyes open or lift my arms to type. I can’t think because my tired brain is full of pea soup and all I want to do is sleep, again.
  • The Fibro has found all new and exciting ways to hurt, including my Achilles and pains in my toes so intense, I have to stop walking for fear of falling. Literally every bone, every joint and every muscle throb. Enough so, even the Tramadol barely takes the edge off.
  • I have had a headache or start of a migraine every single second, of every single day for weeks on end. They don’t always progress to the brain crushing full blown migraine, but the blurry eyes, noise & smell sensitivity and general drunkenness state are ever present. I go to bed with them, I wake up with them and at least three days a week they do achieve full blown brain bash.
  • The Dysautonomia attacks when least expected and levels me. I get light headed, then dizzy, then nauseous before finally giving in to laying down for hours to try to calm it. I fall over from standing, walk into walls and lose my balance constantly. My perception and depth perception have become so altered, that we’ve decided the safest and most responsible thing is for me to stop driving and sell my truck. (at only 45 years old)
  • The (what the Doctor now believes is) Polyneuropathy leaves my whole body vibrating, sometimes so badly, it feels like my teeth could chatter. It feels like an electric shock all over my body, similar to sticking your finger in an electric socket or that sharp shock you get from static electricity. The pain, burning, stinging and vibrations can last for hours, truly challenging whether I can survive even one more minute.
  • But mostly, 24 hours a day, 7 days a week, 365 days a year, I feel awful. It’s just the short reprieves, within those days, that enable me any life quality.

So you know what? That gratitude and acceptance and all that other happy positive unicorn stuff is making me want to throw up, at the moment. Because today, like the rest of the past week, I just do not have any of it in me. Which is precisely why I’m writing this post. Because it’s totally okay to not have any of that in us; even for those of us who normally do.

  • It’s okay to be pissed I got sick
  • It’s okay I’m miserable and sad and defeated
  • It’s okay that I’m jealous that I’m not living the life I want or that I’m forced to watch everybody else live the way I wish I could
  • It’s okay to cry, yell and feel sorry for myself and wonder what I ever could have done to deserve this life
  • And it’s okay that I cannot just pull myself out of it “this time”

Lately, I’m trapped in an endless cycle of run (errands, appointments etc), crash and rest, then try like a dummy to catch up, on all I had to let go. Run, Rest, Catch Up, Repeat. Run, Rest, Catch Up, Repeat. That cycle just seems to replay like a skipping record; because it’s all I’m capable of right now. And it’s nauseating. As if I wasn’t already nauseous enough.

And all that, is really the crux of it. I’m tired of that perpetual pathetic cycle and the lack of any ability to have a normal, fufilling life.

I’m tired of finally getting to clean the toilet, only for it to need to be cleaned again. All the while, never getting to the windows that are so dirty, they’re difficult to see out of. I’m devastated I can’t just go to a store to walk around and enjoy myself, because car rides make me violently ill, plus I need a chaperone to go anywhere. I’m overwhelmed I still haven’t cut my gardens down or that winter is coming and there’s a multitude to do before the cold and snow arrive.

I’m angry and jealous that my friends and loved ones still get to have a life. Be normal. Do fun, exciting, spontaneous things. And then I hate myself for feeling that way, because I wouldn’t wish this life on anyone.

I’m too full of anxiety to try to find another Neurologist, who may or may not diminish my issues, who will most certainly prescribe yet another drug, which will most likely make me sicker, most certainly not help, only to have to go to more appointments, before having them suggest yet another new drug. So I just choose to exist with a constant migraine.

Mostly, though, I’m tired of the loneliness and isolation. I’m tired of always feeling SO vulnerable and that my life is totally not in my control, but in the control of Doctors, who at any time might take away the only thing that gives me any semblance of a quality of life: my pain meds. I’m tired of being terrified to grow older with these diseases and think of how they’ll further cripple me with age. I’m furious that my Husband is constantly working to make up for my lost wages and stressed over how we can ever afford retirement.

And most, most, most of all, I’m terrified of losing my Husband (somehow), because for the only time in my life, I’m completely incapable of taking care of myself. And as a former vehemently independent woman, the thought of that is horrific.

What I hope and wish you would take from all this isn’t the heartache, pain and struggle that I just depicted…….what I really hope you will glean from all this, is that THIS is what it is like to live with chronic illness, at least sometimes. THIS is what we all live with and what quells, bubbles and boils right under the surface. So if we aren’t hiding our pain, we’re hiding the suffocating fear, anxiety and mental anguish that the pain and disease feeds.

Not just me. But so very many of us.

I have no real remedies for when the strangle hold finally cuts off my air. I’ve upped the frequency of my therapy sessions, I’m being honest with my kids that I am not in a good place right now, I’m taking the anxiety meds, I’m not a fan of and I’m feeling ALL this pain.

Because I’ve felt it before and gotten through it. I know I will feel it again. And maybe next time, I’ll be better equipped to weather the raging Tsunami of emotions.

But for those who feel like there is no alternative, but to end it; there is. Please don’t. For as much as we/I am struggling today, tomorrow is a new day. And every new day that we get up is a chance to fight again; to regain that inner resolve that gives us the purpose or hope or strength to continue again.

It’s another day when we may be ready to re-embrace that gratitude and acceptance.

I thank you all for giving me such a special platform to talk about some very serious topics. But most importantly, I thank you for the bigger opportunity to highlight that none of us are insusceptible to suicide or suicide attempts. It does not make one weak or pathetic.

It makes you one of us. A fighter who’s incredibly tired and feels incapable of fighting for even one more day. I’ve felt your pain. I’ve lived through it and I want you to know that as horrendously awful as it gets, that obnoxious gratitude and ability to see beauty in things can return. Please just give it the chance to.

This post is dedicated to all the fighters, who’s courage sees no bounds and especially to you know who-because I’m SO grateful you’re still here with me/us. <3

I love you all <3 Stace <3

If you are struggling or contemplating suicide, **please** reach out to the National Suicide Prevention Lifeline at 800-273-8255 or to someone you trust and love. Because you’re worth it and you belong here <3

Posted by

Fighting with Fibro and Living With Purpose. Mom, Wife, Blogger and animal lover. Fighting with Chronic Illness on a minute by minute basis; sometimes winning.

46 thoughts on “The True Mental Anguish That Comes From Chronic Illness

    1. That’s so true, Wendi. No one gets it, but us. And I think that really contributes to the isolation. I try to remind myself how could anyone, healthy, ever understand?…..Sometimes it doesn’t even seem possible to have such a broken body with *so* many awful symptoms…’s hard for me to comprehend.
      Thank you for your comments.
      I’m really glad you liked it.

      1. You got it sweetheart! That wraps up the entire post!!
        And on those days, I swear like a trucker, occasionally throw things (that won’t break or hurt anything), cry, stomp my feet, yell and pity myself.
        And then I get up again.
        But it’s the endless, day after day onslaught that makes it unbearable.
        And that’s when we lose people….people just like you and I, who are beyond swearing and crying….
        It’s those people I want to hear me and to know that none of us are very different who live with this nightmare.
        Thanks for contributing so much, Wendi!!

    2. Wow…this was much needed and perfectly written for those of us who struggle with chronic illness or illnesses EVERY SINGLE DAY AND NIGHT. Thank you so much Stacey – people will never be able to comprehend not only what it’s like to live in a body that doesn’t work right…but the absolute rage, anger, sadness, and devastating grief we also have to live with as we watch our peers living “normal” lives and doing all the things we thought we were going to do with our lives as well. You are an excellent writer and you captured the mental anguish we live with, sometimes daily, perfectly.

      1. Thanks SO much, Denise. And thank you for commenting. I’m really glad you could relate to the post.
        It’s really difficult to mitigate our own anger, jealousy and sadness with not wanting to hold our peers or partners responsible.
        It’s tough to struggle with mundane, rudimentary tasks, like food shopping or walking the dog and not be able to do such trivial things our selves. It makes me crazy I can’t just walk my dog and then I get upset if my Husband works late or doesn’t feel like a dog walk.
        So I just try to remind myself (vehemently) that he has his own life too and he can’t possibly support us, go to school, take care of him AND always help me live.
        It’s a super complex set of emotions, that’s difficult for other people to understand.
        But how could they?…..When I was well, I was constantly on the go. I never could have understood or related to someone like I am today, then.
        So, it’s a balance. A crummy, riding a unicycle, while juggling swords on fire kind of balance; but a balance nonetheless. So I think it’s normal to fall off the damn unicycle and sit for a while and cry.
        I ALSO try hard to live with hope, gratitude and positivity….
        I just wanted to let others know that no matter which way you’re feeling today, they’re both normal.
        Thanks for commenting ❤️ Much love ❤️

    3. Reading this almost made me cry. Not that that’s a bad thing – maybe I need to – but it’s so well-written and oh so relatable. We are warriors, aren’t we!

    1. Awwww thanks so much, Cheryl.
      That Blogger’s attempt really hurt and saddened me….I’m so grateful she’s alive and just heartbroken she was so desperate.
      My whole point in writing this post, is that as much as I choose to live with positivity and gratitude; sometimes it just isn’t possible. And that’s ok. But it isn’t something we talk about often enough.
      Even the strongest of us have our dark days and we’re no weaker because of that.
      Constantly fighting is hard.
      Thanks for commenting, it’s always such a treat to hear from you.

  1. Thank you so very much Stacey! This is absolutely the most beautiful post I have ever read about pain and depression. As I read it I could see myself and relate so easily. I’ve been feeling as you posted. I’ve been telling myself don’t be mad. I finally broke down and told my son 2 weeks ago I was angry I’ve been this way since age 36 and now I’m 61 and alone. He told me I didn’t deserve it, and hugged me. Then I felt guilty for telling him.
    You’re spot on about having our moments. But also looking for joy in small things and believing for better. You Stacey are a Lighthouse in the Darkness. I’m so grateful to you for your sincerity.
    Gentle hugs and love. 💜🌺

    1. Hi Lis, you’re so welcome and thank you so much, that is just such a huge compliment.
      I’m so sorry you’re in a rough spot and feeling angry. It’s totally normal though.
      Why shouldn’t we be angry?…..It stinks. It isn’t what we wanted. It certainly isn’t what we planned. How could anybody not be angry?
      But, to me, it’s feeling that anger, knowing it’s justified and then letting it go. Until it comes again. The trick is to not let the anger, sadness and fear consume you….to still be able to see the beauty in life and all we do have. Like my Daughter’s wedding or the way my Schnauzer’s ears bounce when he trots. That beauty still exists despite our broken hearts and bodies.
      And I’m glad you told your Son, Lis. That was incredibly brave and raw. You shouldn’t feel guilty, he’s part of your support system and in my opinion, being honest shows our kids that we’re human and that it’s okay to feel defeated and struggle.
      If anything, breaking down and telling him that and then him seeing you still continue to fight, still continue to live, proves that yes, maybe you can be weak; but more importantly, you’re strong, you’re a fighter and you’re honest. And you still continue to live, even in the face of great hardship.
      Personally, I think those are all great attributes, that only benefit your child seeing.
      I’m so grateful you read my post and for your comments. Hang in there, I’ll be sending you lots of strength, positivity and love.

  2. Thank you so much for your open honesty! It really hit home with me today as the Autumn chill is wreaking havoc on me sending me spinning in deeper pain again. I’m so sorry to hear about your friend and another warrior soul lost to this dreadful condition.

    1. You’re welcome, Sherry. Thank you so much for reading and commenting.
      Ugh, the Fall is always the worst. Like you, I can’t pull out of this spin. Not even with a Prednisone blast. It can be so suffocating to drown in so many symptoms and the constantness of it all. So, I’m sorry to hear you’re with me on this spin.
      I always hated roller coasters you know. Hardly seems fair I get to spend a lifetime stuck on one. 😉

      Thankfully, our warrior was not successful and she is still here.
      It was just a sharp and painful reminder that we don’t talk about the dark side often enough and that even if we’re strong, it’s easy to become overwhelmed.
      So as much as I try to live with gratitude and I always talk about that-it was time to talk about what it’s like when I’m low.
      I’m hoping you get a reprieve from your symptoms soon. Sending you lots of love and strength.

  3. Great post Stace, Your right about everything! I’m feeling the isolation and concern about losing my husband. I wrote about it earlier in the week. I like you had a career, traveled, did everything by myself and now I can’t go anywhere. My new car is six months old and has 100 miles on it. I’ve probably driven 20 of them. That is one of the biggest issues for me. the loss of independence, the fear of growing oler, sicker and not being able to or affford to take care of myself. I think we all feel it. Like you said, we have periods where this is controlling our brain and we have to hold on somehow. For us we pray and wish like hell. If I didn’t have God, I would be in a very bad place! I’m not I’m feeling pretty good right now, even though the doctor says I have several new things wrong, they haven’t hit me hard yet. I’m lucky that way and the new pup has really helped my mental health. When I’m feeling down and alone that little wagging tail loves me unconditionally and it brightens me up. I don’t recomment you get a pet, not even a fish! I hope you friend gets some professional help. I’ve tried to commit suicide many times and you live with a shame that’s hard to put into words. Talking to someone about why and how you feel afterwards will really help. Please know!!!!!!!! I’m alwasy here or you. I know we don’t talk that often but i do think of you and I’m alwasy here if you need to let off steam. Sending hugs! Gentle ones of course and lots of them. M

    1. Aww, I love you Melinda, you’re the best. Back at you, sweets.
      I think the fear, like you said, is one of the biggest things for me. It paralyzes me. I picked up and moved out of state at 19, not knowing anyone. I had my first Son, two days shy of my 21st Birthday and three kids under 3, before I hit 24. At 31, I divorced, moved back to my home state and was a single Mom for years. And I did all that alone, too. I also built a very successful business on my own….Now, I can’t work, can’t drive and need chaperones any where I go. It’s so demeaning and absolutely terrifying to be so dependent on another person.
      I try to focus on being grateful to have that special person most days……but its still tough.

      The weeks, on end, when you feel your worst, that’s when the mind becomes your enemy. It’s tough to separate logic and emotion. And the two, combined, are not as fun as chocolate and peanut butter.

      I’m SO happy to hear you’re having a quiet period. That’s outstanding!! Especially when you have a new fuzznut. Animals are just the best. The best everything. I’d be lost without my two dogs and grouchy old lady cat. So I’m totally with you!! I LOVE that you have such a playful boy to distract you and keep you moving! Plus, puppy breath is THE best!!!

      It hurts me to know that you too have attempted. I’m so sorry you were led there. As for the shame, I’m sorry for that, too. While I cannot directly relate, I have been surrounded by several people, close to me, who have tried and that deep seeded shame is something they seem to always be left grappling with.
      My Uncle was so desperate and so ashamed, he killed himself on the grounds of a church; terrified of his judgement at the gates of Heaven.
      It’s only my opinion, Melinda, but you should not be ashamed. You were pushed to a point where you thought you saw no alternative. To me, that denotes a need for sympathy and empathy; not shame. And that goes for all those I know.
      I’m beyond grateful you’re still here and here to help all of us. Thank you *so much* for contributing.
      Lots of Love (and puppy jealousy)

      1. My father commmited suicide, my first attempt was at 9 years old. I almost made it at 12 years old but saved by the hospital. I’ve been there emotionmally as an adult but not to the point of calling it in. I know the pain and guilt is leaves behind, guilt that never goes away.

        It’s hard to talk about but when my dememtia gets to the point I don’t know what’s going on, i do plan to commit suicide. My husband and therapist know. They know just like I do you can’t talk someout out of doing it. I hope I don’t reach that point but I won’t live and die like my granny did from her dementia. It’s the worst and a torchered way to live. If I go that way, it’s between me and God and I’ll have to make my peace.

        I think the best thing we can do is keep talking and being honest. That is one of the greatest things abou tmy marraige is I can be honest and at times it’s been tough. I do get insecure about being alone, lately I’m worried about him dying and me being left alone to care for myself. Money isn’t the issue, it’s taking care of myself. How would I. Somehow God would give me what I needed to make it thru. I pray it doesn’t happen while I’m this young. When I’m older, the dogs are older or gone it might be easier.

        Crazy talk, not really.



      2. My goodness, Melinda. I’m at an utter loss for any meaningful words for your comments.
        I’m so sorry for what happened with your Dad and for all the ensuing struggles you experienced thereafter. For what it’s worth, I think you’re incredibly brave and strong.
        I live with the same fears about losing my Husband. The horrifically sudden loss of my good friend, Scottie, at only 67, only heightened that terror. I rely on Bri for absolutely everything and I cannot imagine living through this life without him.
        We take financial precautions, like you mentioned, but it’s the care and growing old that terrifies me. I never want to be a burden on my kids. Especially not when I’m still young.
        As for the Dementia, Melinda, I’m sorry. I don’t really have any good words.
        It makes me sad to think of and hear your resolution, but I can understand it. I’ve watched the ravages of Dementia myself and my Mom has it.
        I will hope that research will have a huge breakthrough, I know they’ve already made some and that every Pharmaceutical company is trying to be the first to have the drug that stops it. So I will pray that that is your resolution.
        But if not, I don’t accept that God will damn you if you choose to take control of your fate.
        I’m not sure I could live with the end stages myself.
        For now, I’m just glad we have you and hope that there’s a breakthrough before any of this really becomes a decision to make.
        Lots of love,

      3. I pray to not have to make the decision. Luckily, my husband completely understands and I don’t have any close fmaily to be impacted. I’ve been taking two types of medications for years, the only two availabel right now. There could be advnces at any time. The brain is avery difficult thing to figure out.
        Thanks for the kind words. I thing what I’be been thru and continue to go thru make me more empathetic and caring.

  4. I needed your post! Thank you for opening your heart to us! There are days that I am just mad! The only body parts I absolutely didnt want to be less mobile (my hands) are affected now . I am a painter (making detailed paintings). I agreed with myself to allow myself 1 hour of f@#$£₩₩ raging madness and then start to think of a solution.
    And it worked! Its not perfect, but I dont feel the need anymore to be (my) perfect. My goal was to enjoy painting and I do!

    1. Nellisa, I wish I could reach out and hug you. So I’m sending those hugs and a ton of love via this comment.
      Oh God…..I am so sorry about your hands.
      I really have no eloquent words for how sorry I am or how sad and mad that makes me.
      It’s like we wager with God or the Universe or whomever we pray to or beg from…..anything but my hands (or insert another body part here). Grrrrrr. Howcome those begs or barters never seem to work?
      That is a whole lot of unfair #%~$&.

      I think your approach is bloody brilliant. And I commend your strategy and getting through it.
      We each need to figure out ways to cope, manage and get through this. Hopefully, while still having a piece of the lives that once were.
      It sounds like you’ve done that and I’m humbled by your courage and fortitude that you’ve been able to continue to paint. How awesome!!
      It’s stories like yours that keep me going (and I’m sure others).

      As much as we all live through, we really are an amazing bunch to rise above our ruins and still live with purpose and love.

      I am so grateful you commented today. Thank you for reading and sharing.
      What a gift you have to be a Painter.
      ~All my love~

    1. Well I certainly appreciate the “likes” and I understand what they mean.
      I will get through this flare, it’s just a particularly long and powerful one. But the mind is a tricky and dangerous thing, as we all know.
      It’s easy to think of how strong we are, yet amazingly can crumble just as easily.
      I wanted to bring light to struggling itself though; because so many fighters take (or attempt to take) their lives. And we don’t talk about that enough.
      As much as I choose to live with acceptance, gratitude and a splash of smart alecked humor; I also experience some pretty dark times.
      It’s important to highlight that both can coexist.

      Thanks for commenting Mark!!

  5. Polyneuropathy, anther name to put to the awful symptoms you experience. Ugh.

    I’m SO glad someone else is on my wavelength with the positivity toxicity issue! I think positive thinking and affirmations and gratitude all have a place, but too much of it is sickening and it can be very damaging. It makes you feel like you’re failing when you don’t feel positive, like you can never live up to the standards when you hear so-and-so has achieved so much despite their illness, and so on. Some days are just hellish and there’s nothing that will change that.

    I’m not too sure what to say here. You have done a tactful job of covering what is a very difficult topic when it comes to suicide. Knowing folks that are tough warrior women (and men) at such lows that they come to that point is incredibly unnerving and upsetting. I don’t talk about it much but I’ve been there, I’ll be there again I’m sure, and each time it gets that bit harder to pull yourself back up.

    The mental toll of chronic illness and pain should never be underestimate, and yet it is, all the time. Until people like YOU speak up and show the reality. It’s almost like it’s not popular to be honest anymore, like people don’t really want to hear how you are when it’s not a happy answer or they don’t want to see the truth of how shitty times can get. But bollucks to that. I think we need to see this stuff more, because it’s authentic and it’s what too many of us experience. I’m sure there are plenty of people feeling less alone right now because of reading your post 🙏 I know I am. I’m just so sorry for everything you go through. I can empathise and relate on some parts, like chronic migraines, fibro, Tramadol, pain. It’s overwhelming and some days you need to step down and give in, because you can’t fight all the time.

    You have ROCKED this post, Stace. Thank you for writing it. Thank you for voicing what any of us are thinking and feeling. Thank you for being vulnerable.

    Sending lots of love & gentle hugs your way  ♥🤗

    1. Well that’s only, this week, they’re thinking Polyneuropathy…..tests always come back negative, making me look like a hypochondriac. Thankfully my Primary Doctor knows I’m not. Time to find another Neurologist. Ugh. Is it only me or are they the worst Docs to see? This will be my 4th. I only liked my first one-maybe I should have followed him to Hawaii 🤔

      I love the term you’ve coined “toxic positivity” and it’s perfectly suited. And I AM positive. I DO believe that being positive helps and being grateful counteracts self pity. BUT for God’s sake; I’ve had enough with the constant onslaught of it everywhere.
      It’s like we aren’t allowed to give up and say I can’t do this anymore or I cant’t/don’t want to live like this anymore.
      The constant barrage of pain is sometimes so overwhelming, how can our minds *not* go there?….
      So it’s no wonder, at all, when the struggles just become too much and someone takes control of a life they have no control in and choose suicide.
      It’s heart wrenching and it hurts me. And I’ve been there-I’ve been at the end of my rope and struggled to get up.
      This doesn’t make us weak for Heaven’s sakes, it makes us damn warriors to live through this cycle repeatedly and to get back up, at all.
      Enough with the sugar coating it.

      And you’re so right-people don’t want honesty. I’ve lost people I considered friends, because of my honesty.
      But if you ask me how I feel and the answer is like microwaved dog poop, then that’s what the answer is. And truth be told, most days, that’s the answer. So enough with the “I’m fine’s” or “I’ll be ok”.
      I choose to live my life with truth and authenticity. That same approach applies to how I choose to live with constant illness.
      And I think the more of us that say it (like you, like so many other strong Blogging forces), the tiny bit less alone we may all eventually feel.

      This life is so isolating. How is it there’s SO many of us and we all feel so flawed and alone?…….

      Thanks for your thoughtful and (SO) strong comments, Caz. I’m glad to have found a Blogger like you, to have guided how I write.

  6. Thank you Stacie for writing this post. I really needed it today. I can relate to almost everything. Thank you for letting us know we don’t have to feel guilty or bad for feelings we are going through. I thought it was just me. This was a big help. Thank you for your help for everyone.

    1. I’m really glad you liked it and that the timing was well placed!
      And you’re welcome, thank YOU for your kind words.
      It makes me sad that so many of us constantly feel guilty for giving up or admitting we can’t handle living this chronic life any more.
      Our thoughts reflect how our bodies feel and what they experience with the constant onslaught of horrible symptoms. It’s okay to give up, pity ourselves, get angry…’s normal! And I think it’s safe to say we’ve all done it.
      Giving in to our feelings isn’t giving in; it’s saying I’m tired of always feeling like I could die.
      You are NOT alone in feeling this way, just as I am not…..look at everyone’s comments.
      It’s just about getting back up again after all these dark thoughts. It’s an ongoing battle-but one worth fighting.
      You are not alone Lydia ❤️❤️❤️

  7. Thank you so much for this post. This is the real truth that no one ever writes about. I truly thought I was the only one that had these thoughts and felt guilty for it. It means a lot to me to know it’s ok to feel so much anger and thoughts of I can’t do this no longer. This is definitely a post that I am saving so I can go back and read it when I get to my lowest. Thank you Stacey for being so honest.

    1. Hi Kim!
      Thank you, I truly appreciate your comments and feedback. (I hope you’ll follow my Blog!)

      And you are certainly not the only one. It’s crazy how I can think I’m in a good place and how very quickly that can all unravel when the pain/symptoms/frustration become too much.
      It’s frustrating, to me, that we don’t talk about it, yet it’s totally normal and most of us experience it.
      I think the biggest point I was trying to make is that I’m a positive person. I still really try to live with gratitude and appreciation for all I (still) have.
      Experiencing dark times doesn’t mean I’m not positive. It just means that constant illness and incapability of living the life I want becomes depressing and overwhelming. Especially when the symptoms swallow me.
      And that was what I was hoping to accomplish with this-to reach out to those who feel swallowed and say they/we are not alone. It’s okay to feel like this.❤️

  8. Stacey
    Thank you for this important and amazing post. First I want to say how thankful I am to hear that the friend who tried to kill herself is safe. My prayers are with her for sure. Secondly I want to thank you as always for writing about things that we are all experiencing. As you said there are days you feel optimistic and thankful and others where you are feeling the darkness and dragging. I can tell you without a doubt that the past 4 mths have truly been extremely difficult for me as well. Everything you’ve described in this post is a reality we live with and while others can’t see it or understand it We are all living it every day. My prayer is that each of you and all who are dealing with aches and pains and uncertainties know that you are not alone. Reach out to any of us here and know that you are loved and understood. We are truly in this together and we are thankful to you Stacey for you truly do unite us and make us stronger. My love and prayers to all of you.

    1. Awwww, thank you, Sandy. What a beautiful and loving comment, especially to all the other Readers. Thank you.
      And I would also like to say how deeply grateful and humbled I am that you feel my Blog is a safe place to reach out… me OR to any of you. That is a beautiful and empowering statement, Sandy. One I am honored to hear…..and YES!!! That statement is true…..we are ALL in this together and for that, I am tremendously grateful. I hope any and all of those who read this post know that an understanding ear and heart is only a contact away ❤️
      I never want any of my Readers to give up or think I have…..Instead, what I want them to know is that we all, occasionally, feel like giving up. We get tired, worn down living in constant pain, exhausted by ALL the Doctors, live in fear and sometimes become desperate…..
      How could we not? But what I want people to know is that that is all okay. It’s normal, especially with all we live with.
      And when we spend four months down, like you, it’s hard to still cling to that gratitude and hope.
      BUT….none of us is alone, this disease is ravaging us all. And while we may feel like we just can’t get up again……we’ve done it 100 times before. We only have to get up one more time to keep going.
      And every time you get up, you’re a hero.
      Thank you for being a beacon of hope and a hero.
      Keep getting up……Sandy. If only for an hour at a time. Your life is worth it. ❤️
      Thank you for your courageous comments ❤️❤️
      Love Stace

  9. It does take another chronic pain person to understand and you nailed it. I haven’t been grateful since I’ve been in almost unbearable fibro pain of diverse and widespread types for eight years. Just saw another pain management guy who agreed there’s nothing for me and the 350 mg tramadol stopped working years ago. Today I have every pain and spasm I’ve ever experienced all at once. I’ve thought about tapping out dozens of times as the pain can be unbearable for hours at a time. I always wonder what other people do when they’re in this state;I know some do tap out, not from depression, it’s just that we weren’t designed to cope with cancer-level pain (both my parents died of cancer) without dying. I never write on blogs but this came up and my wife doesn’t want to hear this for the millionth time.

    1. Alan, I’m sorry it took me a couple days to respond, but your comment has been weighing heavily on my mind since I initially saw it.
      I’m so sorry you’re in so much pain. I’ve often panicked, thinking about the day coming when/if the Tramadol stops working and it’s a terrifying thought.
      Have you tried stronger opiates?….
      It’s a tough decision, for sure and some Doctors are ignorantly resistant to the idea, so it can be a huge challenge. But I know I need Oxycodone and am grateful to have it when necessary.
      You’re right, though, our bodies AND brains were not designed for the pain that they’re put through.
      I once had Doctor of Physical Therapy point out the way the physical structure of my body has changed, as a result of living in chronic pain.
      I’ve screamed for hours, while my Husband begged me to stop and have had to bang my head (gently) on the cabinets to stop myself from losing my mind and to distract myself from the pain I literally didn’t think I could survive another minute of……
      I’ve sat and thought I literally couldn’t endure another night and then of course, the fear always comes what if this new level becomes the new constant norm.
      And I think that’s where it becomes complicated and difficult for others to comprehend.
      We live with SO much physically, but it isn’t even JUST the pain…’s the loss of life, loss of functionality and loss of independence that ALSO deeply affects us.
      It isn’t strictly depression, it’s the inability to continue living a life like this. And as you said, there’s a distinct difference.
      I’m sad and sorry you’re at this place. It’s a place most people here can relate to.
      Not to minimize or over simplify, but, sometimes, I just look at it as a matter of getting up one more time or fighting for one more day, minute or hour.
      I pray you can keep fighting with us. But you are not alone ❤️
      I will be thinking of you and sending you strength, hope and love.
      ❤️ Stace

  10. Hi Stacey, I too have been where you are. I am going through a better spell right now and I wanted to share with you and your readers what has helped me. First, for the migraines, I got my daiths pierced on both ears. I’ve had 2 migraines in the last year. Worked wonders for me. Second, I take Biote hormone pellets. That has helped so much with the fibro pain. It took a couple of months, but now I feel like it is in remission. I also don’t have the chronic fatigue like I used too. I still stay tired, but nothing like it was. I really hopè this helps. God Bless you all!

    1. Hi Karen, thanks for commenting.

      I tried the daith piercings years ago (against advice).
      Boy those piercings hurt! Youch!! They didn’t help and got badly infected (my body is so sensitive) but it was totally worth a try!
      I am glad they worked for you though. Whatever helps, right?!!
      Remission sounds like a beautiful thing. I’m so happy for you!!

  11. Wow ! I related to every word. I was diagnosed with FMS in ’96, a few months after I’d had to give up my job because I couldn’t cope any more. I’m 77 now and with an accumulation of added complaints I still have to pace myself but shorter moving times and longer rests more frequently. Despite everything I am still not ready to end my life because I still find interest, joy and love to counter the crap, you see I found my “right pebble on the beach” in 1989 and we are still together and he looks after me where and when I need it, we share the chores and he never judges me. I am very fortunate to have him so I would have to be really, really desperate to die and leave him alone. However I have told him that if I have a stroke and I can’t wipe my own bum I will depart this mortal coil. That said I wish you and everyone all the happiness they can grab and interesting lives. Hugs, close your eyes and my arms are around you all

    1. Thank you for the comments and especially, the hugs, Carole. We can all use them. ❤️
      I’m so glad you have your pebble. Me too. And I cannot imagine being sentenced to this life without having him..he’s my world. He, my kids and my fuzzies.
      Their combination keep me going, when the battle becomes too much.
      I wrote this post, because I felt it was impotent to highlight what the pain and mental anguish can do to us and that it’s normal to endure that.
      Sometimes, it can be really tough to get back up again, after the millionth time and it’s okay to admit that……
      I just also hoped to instill that as many times as we think we cannot endure, miraculously, we get up again. I think that bravery and perseverance is equally as important to highlight.
      God love you that you’re 77 and still going strong, despite the Fibro. I know many people suffer more with it as they age. That gives many of us, I’m sure, hope. You are a warrior for sure.
      Thanks SO much for reading and commenting!
      Much Love ❤️ Stace

    1. You’re welcome. Thank you SO much for the comments and encouragement!!
      I am surrounded by the world’s strongest fighters…..we always get through; one battle at a time.
      I appreciate your support ❤️

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