May 28, 2023

Posted bydaydreamer23Posted inUncategorizedTags:, ,

“I wonder if there’s a secret current that connects people who have lost something. Not in the way that everyone loses something, but in the way that undoes your life, undoes your self, so that when you look at your face it isn’t yours anymore.” – Nina LaCour

Time doesn’t move the same for me anymore. I think that happens to a lot of people who are chronically ill, especially those that become housebound or bed-bound. At some point, you just can’t measure time the same. I don’t measure it in days or weeks or months anymore, I don’t measure it in holidays or vacations or weekends, I don’t measure it in seasons. I don’t know how I measure it now, but it certainly doesn’t feel the same as it used to. Being stuck in this loophole of a life, especially one that is full of pain and suffering and agony, is disorienting. It’s funny though, being that sometimes the only thing I am keenly aware of in terms of time, is how much I’ve lost. And even then, there are times where it doesn’t feel real, like all this time can’t possibly have passed, as if there has to be another version of myself living out in the world, and one day I’m going to return to her body, pick up wherever she left off, and move on with my life. But regardless of how much I feel like my life has been frozen, the world has kept on turning, months have kept on passing, and years keep on coming. And I watch everyone else move on with it.

And yet, at the same time, I feel like I’ve aged lightyears – I’m exhausted out of my mind, I’m stressed beyond belief, and there’s never any break from this. It’s not like work or school, where you can go on vacation or take some time off and escape from the real world – being chronically ill does not work like that. It follows you everywhere. It latches onto you, it weighs your body down, it breaks your spirit. And it ages you. Being chronically ill, at this level, where you can’t leave your house, where you don’t get to enjoy a social life, where you don’t get a moment of peace, doesn’t just chip away at you – it decimates you. You’re not even left with a quarter of the person you were before getting ill. You’re ripped of everything. Your livelihood, your personality, your hobbies, your privacy, your dignity, your credibility. It leads to a lot of experiences that make you feel… not like a person. Your world will shrink, your pain will grow, and your life will unravel in ways unimaginable.

Published by daydreamer23

Gone through a little more in life than I probably should have at this point.

96 thoughts on “May 28, 2023”

  1. There are no words to express my feelings for what you are suffering through. I hope, with every breath I take, that science will find the cure and solution. My heart is with you. Always.

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      1. I’ve been bedridden and severely ill for about a decade. I identify with every word you wrote. Hang in there.

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  3. Your lines resonate with me. If I had to find a visual for it, it would be beddraps over unused furniture in a dusty house. We cannot use all its rooms and there are no pictures on the wall. Or frozen in time, like the Varykino estate in Dr Zhivago. My hope is with you

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    1. Thank you so much. Yes, that’s a great visual for it! It definitely feels like we’ve been frozen in time. 💔

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  7. This expresses beautifully, and accurately, the reality of chronic illness and how it alters your life in ways that those with no experience of it poorly understand. Many thanks.

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  8. Beautifully put into words.
    I hope that Science & time are kind to you, and that better times lie ahead.
    Catch hold of all the little things that can still bring you joy, use your gift of writing to record them.

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    1. Oh my word your words are so powerful! I’ve had seventeen years of it myself and this section completely stopped me in my tracks:

      “Being chronically ill, at this level, where you can’t leave your house, where you don’t get to enjoy a social life, where you don’t get a moment of peace, doesn’t just chip away at you – it decimates you”

      There is definitely something that connects people who have lost something (lost everything, in a way) and I want you to feel that connection from you to me. So much love to you x.

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  10. Very well written piece on the suffering you are going through. So sorry life is being this tough on you. I completely understand your situation, as my son is a very severe mecfs patient.

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    1. Thank you so much. I am so sorry to hear that your son is suffering as well. Hugs & solidarity 💙🫂

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  13. How wonderfully you describe what you are going through. Thank you for reaching out. Your experiences resonate for me, for I have Long Covid. It helped me to have you articulate how this all feels, and thank you for that, too.

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    1. Thank you so much for your comment. And I am so sorry to hear about what you are going through. Long Covid is a beast. Solidarity 🫂💙

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  15. This is devastatingly eloquent and hits hard. I’m very very sorry about the circumstances thst gave you reason to write it, and grateful to you for all the wisdom and life lessons it contains. You are brave. The most powerful authors and thinkers are those who expose their vulnerabilities- they are in touch with this life in a way that so many others never have been and never will be.

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    1. Thank you so much for your kind comment – thank you for everything you wrote. And I’m very sorry that you understand what this is like. Solidarity 💙

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  16. In bed three months after my worst crash. The symptoms don’t describe the experience, but this does. We are connected by the current. Thank you.

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    1. I’m so sorry to hear about what you’re going through. Crashing is a nightmare – I hope you are able to have some relief soon. And thank you for your comment.

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  19. Thank you for expressing your situation so clearly, and I hope you will climb out of this pit of illness soon. And that you have the support of family and doctors that are supporting and helping you.

    I am living with some post-Covid issues, although not nearly as severe as yours. But I think it has allowed me more empathy and insight to understand the difficulty of chronic illness.

    Sincere best of luck to you!

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    1. Thank you so much for your kind comment 💜 And I am so sorry to hear what you are going through as well & I hope you are able to find some relief in the future too.

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  22. Physically limited people make some of the best writers. Laura Hillenbrand came to mind as I read your information. Writing may be your therapy. Each day, consider spending a moment imagining successfully overcoming your illness–one step at a time. Prayers help. I will include you in my prayers that you gradually and fully regain your health. BTW, someone told me I would never overcome a major issue–physical and mental–but I did it. You’re stronger than you know. Believe.

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    1. Thank you so much for your comment and thank you for your prayers – I appreciate that tremendously. 💜

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  25. My 44 year old son had a devastating traumatic brain injury 9 years ago, and is living a life with way too much suffering, and isolation, and precious little hope. His injury renders him unable to express himself as articulately or poignantly as you. In your words I can hear some of what I believe he would say about his life now, so it struck me deeply. I am grateful for that interpretive bit of contact with him. Thank you, for speaking for yourself and also for others, and for the understanding that brings to others who love people who are profoundly suffering.

    I do wish you much greater peace and comfort.

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    1. Thank you so much for your beautiful comment – I’m moved by what you wrote and my heart goes out to you and your son. Thank you for sharing – I am so sorry to hear about what he’s been through & what he has to endure. I am sending my love & support to you both.

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  27. I hope you keep writing, about your experience, about “before” times, about what you think, how you cope. It could be a gift to you and others. Your mom said on Twitter that this piece was very difficult to write so maybe it’s not practical to write more, but I hope you can. ❤️

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  28. I remember so vividly what it was like when I was housebound for so long, over the last 15yrs I’ve started to manage a day out with a few days complete rest as recovery price. It’s not perfect, but it’s something. Sending you heaps of love and hugs xx

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    1. I’m so sorry to hear of what you’ve been through. Thank you so much for your comment
      – sending you love & hugs as well! 💙

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  29. Your writing conveys strong elements of courage, honesty, and intellect: rare qualities that are always of great value, particularly in difficult situations such as your own. I commend both your writing and you. Best wishes.

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  30. Wow, that was so beautiful and eloquently written. I’m sorry you’re going through the limbo and pain. Thank you for sharing your thoughts with the world. I’ll share it on Twitter – a few of my online friends will more than likely relate.

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    1. Thank you so much for your kind comment & words. And thank you for sharing it on your Twitter! I’m sending my love to your friends who can relate. 💜

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  32. The light is darkest before the dawn. You will get through this, you are not alone and we are rooting for you. The medical world is racing towards solutions and so it’s only a matter of time until you will be back to living your old life. Stay strong, it’s not long now!

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  33. Yes, every word of this short essay hits close to home! It’s devastation beyond what healthy people can imagine. But there is hope, now that Ron Davis and his team have good theory, let’s just wait and see what can they do with it.

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    1. Thank you. I’m so sorry to hear you’ve been going through this as well! My mom & I are hopeful for what he has in store too.

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  35. I am just over 20 years of experiencing chronic illnesses which took my career, family-life, hobbies, friends and all my passions. I don’t think I have ever read such incredible descriptions of how we experience the world. I’ve tried for decades to tell family and doctors what this is like. Thank you for expressing it so well. I just stopped and immediately felt like someone understood. I’m so sorry for your loss. It is a loss of huge consequences. It is a daily challenge to figure out what our meaning is or how we can contribute to the world. You have made a big contribution and I am so grateful. Keep writing, keep expressing your thoughts because you are helping others with your special talent.

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    1. Thank you so much for your kind comment and kind words. I am so sorry to hear how long you have been suffering & I’m sorry that you understand what this feels like – my heart goes out to you. 💜

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  37. The impact of an “invisible” illness is so hard to express, and you’ve nailed it. I thank you for using precious “spoons” to write this eloquent description, I hope it connects not only with those of us who have experienced it firsthand, but also with the oblivious people to spark some understanding. Take care, sending a gentle hug.

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  40. Hi Friend, fellow chronic fatigue/mystery illness sufferer too. I’m so sorry to hear you’re suffering. It’s devastating and finding answers is like looking for needles in haystacks. I want to share some hope with you. In 2013 I started a business . I was so poor I had $5 to ny name at times. I was hungry and I said God if you’re real I need a miracle badly. I wasnt religious , went to Catholic Church once in a while bc that’s what you do when when your Italian / Peruvian culturally. I felt promoted to look in an old pair of pants and there was money. I got fast food. Another time same thing, God I’m broke again and hungry. Walked out and there was money rolled up. Another time, God my rent is due in two days and im broke. It was around $722. I had under $100. I took my self to chipotle bc I felt so depressed and bout one taco. I went back to my car and there was a note. It said sorry I hit you.me car. I looked and the dent was minor, least of my problems. I called and I thanked him and he said something bad would have happened to him if he didn’t leave the note and to take it to an auto body shop. I got a quote the next day $724. He said great, I’ll PayPal. My rent was $722. It clicked I could pay my rent on time now. I was shocked. This is crazy. These things happened dozens of times. I never starved and I never missed rent ever. So I concluded God you must be real. Months later I met some Christian friends and they were the kindest of the kind. I gave my life to Jesus and went to church and my life dramatically changed. I healed years of childhood verbal abuse and trauma . I started reading the Bible and becoming encouraged, I was a new person completely. I couldn’t stop reading. I met a girl in my late 20s in 2015. We got married. It was the happiest I’d ever been. I had also started a second business. Still broke, but God always provided. Suddenly ny business partner became toxic . Wham it’s like a fuse blew with my health. Fatigue brain fog panic attacks. Recovered after EMDR . 2018 had my first daughter and became sleep deprived, wham bed bound now. Best time of my life to one of the worst. I used to be an avid athlete and now I could barely get out of bed and had crippling anxiety . Most doctors had no answers. I cried a lot and asked God to heal me. I read a lot and prayed. I had some miraculous days with semi ok energy where I could do stuff and others where I was stuck in bed. I saw a naturopath , did several protocols . Improved 20%. I could semi function. Several doctors later and I hit a wall. Everyone said sorry we don’t have answers. I was getting tired of hearing this. I went rogue and felt like God wanted me to find people with similar issues that beat this since. I was convinced God was going to heal me through natural means or super natural means. So I went on a journey and searched online and in Facebook groups. Fast forward to today and I’m 85% better. I have 2 kids and one on the way. i can do every thing guy play basketball as that still crashes me. Working toward 100%, almost there. I believe there was purpose in my suffering and that I can now share hope with others. When I just prayed for you the words that popped in my head were keep going. Here’s a list of people and things that beat CFS/mystery illness/long covid/etc :

    -Mike Kredder , food for your jeans , generic approach
    -Ken Lassensen , CFS Remission . Com , gut approach
    -Dawn Wiley , bed bound 30hrs to up 10 hours now , A vagus adventure Facebook group (truvaga or amofit S vagus nerve device )
    -Infraslow Neurofeedback , this typo of NFB was a big help mental and calms the nervous system
    -Borne free community , great community and protocol that gets how to fix this www. Borne free. Life (google website)
    -Find a Christian church online , some have healing ministries. I’ve heard of so many people being miraculous healed .

    Will be praying for you! God Bless 🙌

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  41. All the best. There’s people out there still doing the right thing, still making the right choices; and we haven’t forgotten about you.

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  42. Thank you for sharing this. We have a child with a life -limiting disease and I think that if she could speak she would echo your words. It takes all kinds of people to make a world. I bet you enrich the world for the special people in your life, like our daughter enriches our world. It’s not the life we thought we’d have but it’s still a life. I hope writing what you’re going through helps you. It certainly helps those of us who read your words. Thank you.

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    1. Thank you so much for your kind comment and your kind words – I am touched by what you said.
      And I am so sorry for what your daughter has to experience and endure – my heart goes out to her & you & your family. 💜

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  44. Thank you for sharing this. I’m so sorry for what your illness has stolen from you. Yet you still retain your personality, your talent, your imagination, and I think perseverance. I read about research, especially all the buzz about Long COVID, and I am encouraged that many of us will benefit from what is learned. Wishing you all the best.

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    1. Thank you so much for your kind words & for your comment. I am hopeful that something will come out of all the Long Covid research too!

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  45. Poignant, beautiful and absolutely heartbreaking all at once because every single word resonates with fellow ME warriors. Love & light to you. Stay with hope.

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  46. It feels aware of aging and suffering through time Like aging x1000. Like getting old suddenly.. It is always too soon. But your text makes it real and so painfully done ,too soon. .

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  47. You have written the clearest most honest description of what chronic illness is like and all it steals from you. Thank you for giving voice to the desolation. Hang in there even when it feels there is nothing to hold onto. The illness and your body have derailed your life in a way that a 24 should never know but your spirit is luminous. Please keep writing and reach out as there is a whole community of us struggling along with you. even when you feel most alone, you truly are not as so many people identify with what you have written and together we will make lives worth living again. God bless.

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    1. Thank you so much for your kind words & for your comment! And thank you for taking the time to read it. I sincerely appreciate everything you said. 💜

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  48. You write so well and describe your situation clearly. Perhaps soon you will measure time as the space in between blog posts. Best wishes.

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