the truth is

this will be my 3rd spring with severe ME.  each spring has found me in worse condition than the prior spring.

when i ended my marriage that 1st year, i knew it would leave me sicker.  & it left me with no safety net.  with no family to take care of me & no money for a caregiver, i told myself that all i could do is endure until i could no longer do so.  at which point i would take my own life.

i truly believed my condition would improve.  & there have been some instances of that – some reclamation of life.  the last being this fall.  but i lost it so fast & so easily when i relapsed.

i have steadily worsened since january.  i spend my days in blindfolded rest, emerging to do a bit of online communication, to feed myself, tend to basic needs.  i keep shedding things, a familiar process after living so long with this illness.  yet i keep sinking.

i am at that place now, the one i made my vow about….  of losing the ability to care for myself.  but though my quality of life is so low, i do not want to die yet.  not in spring.

i close my eyes again, grateful that today i can hear the rain.





11 thoughts on “the truth is

  1. Before you know what kindness really is
    you must lose things,
    feel the future dissolve in a moment
    like salt in a weakened broth…

    – Naomi Shihab Nye in “Kindness”

    Dearheart, I know how hard you struggle, and have gratitude for every moment you are still here, your soul shining so brightly.
    But I also understand that vow, understand how hard it is to stay.

    In October, I was watching, hoping, and praying, for my elderly dog, Kasha. She had developed degenerative disc disease of her spine, and was having trouble getting her rear legs under control, problems getting up and walking. I knew that if she got to the point of losing bowel control, then she was only going to get worse, and I would have to release her from this life. But that hadn’t happened yet, keeping hope alive.

    Then one morning I had a call from my doctor, telling me the x-rays of my spine showed that *I* too have “severe degenerative disc disease of my entire spine”… Not just a slipped disc, nothing so simple, and I was already in tremendous pain.

    I walked out into the living room, and discovered a very ashamed looking Kasha, struggling to get to her feet, and a big poop beside her.

    It was a moment of extreme clarity, “feeling the future dissolve in a moment,” but not just for Kasha – for me, too. She had passed her “red line” and I knew what I had to do.

    But I also realized that my own “red line” was now very clear, and closer than I thought: I will not, simply cannot, accept becoming so impaired that I need a wheelchair or even a walker to get around. I just can’t go there. It would be an “insult to my soul.” And I would cease to be me.

    It’s difficult enough as it is, just being out of bed off and on during the day, housebound, but still able to go outside on the deck a little each day. And, I cannot become an even bigger burden to my daughter – she deserves a life without me weighing her down.

    So I’m fighting, taking a crazy amount of supplements that support spine health and fight inflammation… But that line is very clear in my mind, the place I will not, cannot, go.

    You are heard.
    You are understood.
    You are so very Loved.
    And I will always carry you in my Heart, as you carry me.
    I Love you, forever and always.

    Liked by 1 person

    • my sister, i am crying. i had just read that EE cummings poem.. about carrying in the heart. i appreciate you sharing what you did. & i appreciate your understanding.

      the red lines. i understand. i’ve asked myself the same questions. this disease has taken almost everything but my ability to love. i’m already wheelchair bound. it’s taken away my ability to read or write much or communicate verbally. it leaves me mostly blindfolded in rest. it’s taken so much sensory from me – by making sensory excruciating. i still have touch & am grateful when i am physically well enough to pet trixie. & so far i have been able to get to food & feed self.

      but i realized the other day for the first time since going severe, that though i am worse now, this is my life. & i took suicide off the table. i don’t know how i will do this. but i realized i can’t kill myself. i may feel differently about that if we had legal death with dignity options available to us. but without that, i feel that i must somehow endure. the choice to stay. regardless of what is now or ahead.

      you & i have talked quite a bit in the past when i was still able to communicate & write more – you know how much you mean to me & that i understand. & that i will always carry you in my heart & love you forever & always. may our days ahead be kinder to us.

      Liked by 1 person

      • I’m glad that you’ve come to a place of semi peace with how things are. You are so very strong and courageous, much more than I think you’ve given yourself credit for. It’s why I’ve said for so long that you have such a bright and shining Soul, and you light up my life, even when darkness is trying to settle in.

        The wonderful thing is, we’ve grown so close that we can go days or weeks when we are “down,” without any communication, but I still feel you there. I watch every sunset, with sunglasses on, sitting on my porch, and think of you and send Love, Peace, and hopes and prayers for easing.

        What ME takes from us is so very hard to accept, and I think, for me, the sound and light sensitivity is some of the hardest. When talking to my mom on the phone a few minutes or hearing Kodi Dog bark causes acute pain, or I jump and twitch from the softest of unexpected sounds… That is hard.

        As is losing the ability to read books anymore. I really resent that, but I simply can’t follow complicated stories anymore – I can’t remember the plot from one day to the next.

        It takes so very much. It’s been 17 years since I was formally diagnosed with “CFS” and fibromyalgia (and much more later). Sometimes I can’t believe it’s been so long. Life since CFS is largely a blur.

        But we hang on as long as we can. That’s all we can do. That, and love each other.

        Liked by 1 person

  2. thank you for sharing all of that, dear sister. i’m not sure i am at a place of peace, though i sometimes experience it. i simply am where i am, though i’d love to be who i used to be. it’s not an option. somehow i have to live like this.

    thank you for your kind words. & yes, we are so close we can go long periods without communication but remain close in spirit.

    i’m sorry for all you have lost. & how life pre-cfs has become a blur. i have a feeling that will be what the pre severe/post severe is like with me, now so many years in & lucky to have made it as far as i did before having so much of what remained taken from me.

    i find myself asking – just a allow a little more of life… a sunset. some gazing out the window. a few words, like just now. petting my dog. i’m so praying i will be able to sit out for a few minutes in the summer. instead of spending most of my time blindfolded lying down.

    “But we hang on as long as we can. That’s all we can do. That, and love each other.” yes……… ❤

    Liked by 1 person

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