What it feels like when things go wrong

I have been having severe psychiatric symptoms and have been asked to describe them, and am finding it to be difficult.

Yesterday I told my husband that it felt like the emotional equivalent in intensity and horror to the pain I would feel if one of my eyelids had been pulled around my head, down to my neck, leaving behind my skinned, painful head, unable to see anything.

I know that is not physically happening to me, but it’s the emotions and the pain that I suspect I would feel if that happened to me that I am trying to encircle with words.

It’s really important that I describe it in a way that make sense so the doctors will know what kind of drugs to give me. I guess whether I need to keep taking anti-psychotics or switch to mood stabilizers.

There are at least two parts of this emotional crisis:

One is this emotional pain described above. Another way to describe it would be to compare it to how I might emotionally feel if my fingernails were being pulled out slowly, one-by-one, only worse.

So this is constantly going on, and it manifests as my own screams and shrieks filling my head. I want to go through the house screaming and shrieking out loud, but I hide myself away from everyone else and it feels like my head is going to explode with the constant suppression of the screams of emotional pain.

The other part of this crisis is like a cloudy, smoky feeling of doom that washes in and swirls about while the first part is going on. It does not use words, but it communicates to me that I cannot handle much more of the first part, but warns that it may never stop. In fact, it could get worse and I could spend my life trapped in the first part with the second part swirling around. And that adds more panic and hopelessness.

Since I have been in crisis, these two parts have always been actively going on but I notice that it is quieter and easier to tolerate in the morning. It gets louder and more painful and harder to bear throughout the day until the evening when I run up to my bedroom, strap on the bipap (sleep apnea) machine and take deep, deliberate breaths until I fall asleep.

I hope that this description, along with a doctor’s visit, will result in some new meds and an end to this crisis.




10 thoughts on “What it feels like when things go wrong

  1. Thank you Sarah for being able to put to words what you are going through with HD.

    Your stories always increase my compassion for HD sufferers exponentially.

    With love and kindness,



    Liked by 2 people

  2. Dear Sis sis
    Any window I can get into your daily life experiences I always so greatly appreciate! I always say and feel ….. you are the bravest person I know! That never ever changes …. No matter what. My heart is open to you always in all ways. Luv your sister sister

    Liked by 1 person

  3. I am so sorry this is happening to you my friend. I hope your suffering has only started recently. I cannot imagine myself in your shoes. I have no idea if i will be able to be as brave as you in dealing with your HD. Remember we are here for you. God will be watching over you too. Hope your visit to the doctor will be beneficial for you that you will be able to find some new medications. Always loving you


  4. Thank you for posting what it feels like. I recently connected with a friend of mine I lost touch with for many years, only to find out he’s had HD for almost ten years, and he’s spent most of that time isolated from the world, and very depressed — mostly from being intensely lonely and having trouble coming to terms with HD. He’s very high functioning for having it as long as he’s had it, but he’s very frustrated with it.

    I’ve been visiting him every day and taking him out, which has greatly improved his mood, but he’s struggling and I wondered what it might feel like to be in his head.

    Liked by 1 person

    1. Your friend is very lucky to have you in his life. I seem to avoid leaving the house at all costs but when I am persuaded to go out I am glad I did. I rarely regret it and should remember that next time I try to avoid going somewhere. It’s like a day’s no longer wasted on ruminating about HD. Say hello to your friend from me and let him know that he is definitely not alone.

      Liked by 1 person

      1. Yes. I’m a bit upset with his brother who is his caregiver, who has done little to make sure he gets out and does things. He used to take him out once a week for coffee, but they barely spoke and he quit doing it years ago.

        I think of all those years he was much more mobile and had better cognition that were basically wasted and lost. I’m trying to make sure that doesn’t happen to him anymore. There will come a time where he has no choice but to stay in his room all day. It shouldn’t be when he’s still mobile and stuff.

        I’d like to be a non-medical aid for him, because he doesn’t need medical aid, but he has had some issues with memory and decision making. He also eats poorly because he can’t cook and his brother doesn’t provide meals he can heat up in the microwave. He’s basically living on cereal until supper time. I make sure he gets lunch, now.

        I’d love to do this, but Medicaid doesn’t pay for that sort of care in our state unless I were to live with him. I’m married, so that’s not happening, but if I could, I’d find a way to manage our being room mates.

        After what I read about the cognitive degeneration, he’s going to retain his memories and awareness for a very long time, but he’ll have trouble expressing and processing him. He’ll get more trapped inside his body, but he will still be himself in maybe ways. I think he needs one person around who understands and can remind him that he’s still “here” when he doesn’t believe it.

        Liked by 1 person

  5. Thanks so much for contacting me via email about this very topic. I tried your advice, thinking it wouldn’t work, but it worked exactly like you said it would. I’m so glad you told me what was likely going on. And you were right.

    Liked by 1 person

  6. keep posting. thank you. Sending you much much much love. Praying for strength, clarity, peace (?), wisdom in self and those around you. Ability to release . . . xoxoxoxoxoxo

    Liked by 1 person

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