Tuesday, January 23, 2018

Dying Inside, Again

Diminished. Irrelevant. Unnecessary. Incapable. Right now, those are the words that describe me. My inability to engage in life, which I'm working so hard to change and thought I was improving on, is simply inadequate. Nobody's got the time or the patience to sit back and wait for me to get it together. And why would they? I've already squandered enough of both to suck up everyone's lifetime.

Is there a soul on the planet I can talk to? Because right now I feel alone and isolated, like a woman existing on an island of herself. But that island has no fruit left on her trees, and the wildlife have all swum or flown away. So I sit and stare out at the sea. Starving. Wondering if anyone is ever going to rescue me. Knowing full well they won't. I'm responsible for every ounce of my survival and can't even feed myself.

This is what year thirteen with an invisible, chronic illness has done to me. Annihilated my self-worth, estranged me from those I know and love, suppressed a life that was supposed to get lived, and turned a vibrant and capable woman into a blithering, pathetic pile of weakness.

It didn't have to be this way. It didn't have to get this bad. I could've gotten sick and not lost my mind. I could have, at least once on this thirteen-year journey, encountered a doctor who didn't treat my life-altering insomnia and muscular pain like a t-shirt I decided to don because I liked the way it felt. Is it a myth, or are there people who get this illness whose friends and family rally together and lift them up? Are those people accepted for who they have now become and not persecuted for never being enough?

I'm retreating further into myself. Every time I get this low, a piece of me dies and stays here. There's less of me to pick up and move forward with. Right now I wonder if I'll ever be able to move forward at all. Thirteen years ago my life splintered off into a parallel universe. Although it seemed like I was still part of the normal world, my truth no longer existed there. Now I'm floating in an abyss of madness existing somewhere between my truth and everybody else's world. My reality is pecking at my flesh, nibbling on my toes, eating chunks of the goodness that was once my soul. At the pace I'm going it won't be long before there's nothing left inside me at all.

Thanks for joining,


  1. Always here if you need a friend...You will survive, because letting Fibro win would be an even bigger loss then the life you had before Fibro!

  2. This really touched my heart. I feel exactly the same way. Thank you for sharing.

  3. You encourage me. Your page was the first place I found solace and courage.

  4. I thought I was healed. Silly me. Just diagnosed with my 4th auto-immune disease, Frontal Fibrosing Alopecia. This one will take my hair, no cure, no treatment. And I've developed Tinnitus. I don't know why I keep moving forward. Seems strange to keep going. This noise in my head will surely drive me crazy since there is no good news anymore.

    1. I I hear you martingale, the constant tinnitus can become wearing. Keep in mind in Australian Aboriginal culture we with tinnitus are wise! I have 3autoimmune conditions and fibro

  5. this hit deeply.im also fighting SAD with fibro and I'm lost.all I want to do is try and sleep but then I'm mad at myself for sleeping my life away.

  6. I understand...I am 12 yrs into Fibro. It sucks. Being that we have had a really COLD winter I have suffered so badly. Doc just upped my Gabapentin. We will see what that does. I did make it out last night to go to visitation for a friends mom and I road with a couple other friends, we talked about how I went from being a social butterfly to not being that in just the last couple of yrs. It really is not fair. Hang in there....maybe things will change.

  7. So sorry to hear that you are feeling this way. You have touched us with your honest description of what it is truly like to live with this.

    I have been sick since September and just finished the 5th round of antibiotics. My doctor made me take a week off and just rest. Hopefully this will end this for me.
    Sending you gentle hugs

  8. Thank you Leah, I am glad you are posting how you feel. Nobody understands unless they have a chronic condition. In my family they expect you to get better or move on from talking about it or being unable to join in. I understand how you feel and you express it beautifully. Please keep posting as we all want to keep reading. Sending you love from Australia. Xx

  9. Like the others who have commented, I appreciate your honesty in the ups and downs. I love hearing another's struggles and triumphs, and it gives me hope and also validates my experiences of successes and failures and that it is hard to get back up, but we drag though and keep trying even when we don't want to because we refuse to let this dang disease win the battle even when it does win some fights. You can do this - one more time. Thank you for documenting "our" journey.

  10. You have put into words how I feel but too scared to say it out loud. Thank you

  11. Sending you love and gentle hugs ❤