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Thread: In a really bad place right now

  1. #11
    Quote Originally Posted by Bonnette View Post
    Jade, I've got to ask...how do your friends recommend making a dissociative episodes stop? I still have moments of absolute terror, these many years on.
    Hey Bonnette!

    so what they said was, take one deep breath, then wash your face with really cold water. Then, drink a glasss of anther really cold water or a fizzy drink, like coke. This is because the immediate sensation of cold and/or the bubbles of the drink are very grounding feelings.

    Another thing to to do is keep a very strong perfume bottle and smell that, even if it hurts your nose. Basically anything you can do to yank yourself out of that moment of terror and ground you in the here and now.

    anither milder technique is to try and find for example x amount or red objects in the room, x+1 blue ones, x+2 yellow ones, etc. These techniques work pretty well for me at least

    really sorry you are having these moments as well, I wouldn’t wish them on anyone, let alone on someone nice like you

  2. #12
    Sorry to hear you are in such emotional pain. You seem to have the right instincts about continuing daily exercise and getting outdoors. Also, so important you are reaching out like here at CareCure, and also with your friends to talk about what you are experiencing. Hoping you begin to feel better as time goes on and you can enjoy again the things you have enjoyed before.

  3. #13
    Quote Originally Posted by triumph View Post
    Sorry to hear you are in such emotional pain. You seem to have the right instincts about continuing daily exercise and getting outdoors. Also, so important you are reaching out like here at CareCure, and also with your friends to talk about what you are experiencing. Hoping you begin to feel better as time goes on and you can enjoy again the things you have enjoyed before.
    Thanks, I hope I get out of this ordeal alive really. I never thought my life would end up like this, I feel pretty unhinged at the moment. I have always been an optimist at heart, but this spinal cord thing I just can’t deal with.

  4. #14
    Thank you very much for passing on those techniques, Jade - I've copied them down and will try them. My moments of terror come when I've been dwelling on things that haven't happened, but almost certainly will (especially in view of being older). That's a deep rabbit hole, best to avoid it in the first place - but sometimes I pitch myself right in.
    MS with cervical and thoracic cord lesions

  5. #15
    Quote Originally Posted by Bonnette View Post
    Thank you very much for passing on those techniques, Jade - I've copied them down and will try them. My moments of terror come when I've been dwelling on things that haven't happened, but almost certainly will (especially in view of being older). That's a deep rabbit hole, best to avoid it in the first place - but sometimes I pitch myself right in.
    Oh yeah, I totally get that! It’s hard not to dwell on stuff like that, and I can’t say I have found a way to not do it. Maybe when I watch tv series that helps, but it is momentary. Anyway I got in touch with my friend, and she is gonna send me a sheet with recommendations on what to do when having moments of terror/dissociation and stuff like that, and I’ll post them here!

  6. #16
    Quote Originally Posted by Jade2 View Post
    ...Anyway I got in touch with my friend, and she is gonna send me a sheet with recommendations on what to do when having moments of terror/dissociation and stuff like that, and I’ll post them here!
    Thank you so much, Jade, that will be really helpful to me and to so many of us. I'm hyper-aware of the need to nip fear in the bud when there's nothing I can do to change the things I'm worried about. It's the human condition, I guess, compounded by the instability of the world right now - kind of a perfect storm.
    MS with cervical and thoracic cord lesions

  7. #17
    Hope you get an accurate diagnosis tomorrow, or at least an explanation that makes sense - followed by the correct tests, if further workup is needed. Keep us posted.
    MS with cervical and thoracic cord lesions

  8. #18
    Quote Originally Posted by Bonnette View Post
    Hope you get an accurate diagnosis tomorrow, or at least an explanation that makes sense - followed by the correct tests, if further workup is needed. Keep us posted.
    Hi! Yes, I have prepared all my notes and a timeline of symptoms and questions! All written down, the doctor won’t escape me!!!

    I will report back tomorrow afternoon, fingers crossed!!!

  9. #19
    Quote Originally Posted by Jade2 View Post
    Hi! Yes, I have prepared all my notes and a timeline of symptoms and questions! All written down, the doctor won’t escape me!!!

    I will report back tomorrow afternoon, fingers crossed!!!
    Good deal!! I'll be thinking about you, hoping for a smooth and HELPFUL flow of communication between you and the doctor.
    MS with cervical and thoracic cord lesions

  10. #20

    So, I have seen the doctor.

    I have finally seen the doctor for my follow up.

    i tld him all my symptoms, and that I didn?t have a lot of the symptoms I have now before the surgery, and he has admitted that maybe the su very did indeed upset my spinal cord.

    my symptoms have been partially helped by physiotherapy, as in the pain has diminished, and some weird sensations have gone. In addition to that, some numbness seems to be gone, but I think I have some sexual dynsfunction going, which I didn?t have 2 months post operation. But at this point I don?t even know how much is due to stress, I don?t know.

    the MRI shows that the cord is not compressed, just displaced anteriorly by the cyst, and there is no cord signal change, so they can?t see damage, and has been stable in the same position since the operation.

    The doctor said that my symptoms come and go, and that is due to slight changes in the cerebro spinal fluid pressure within the memebrane that encases it.

    He said that evens light light changes in pressure can ?upset the cord?, causing my symptoms.

    he said I cannot do scuba diving (sad, as I got my open water certificate last summer in Fiji and loved it!) because it involves a change in pressure, and that I cannot train with heavy weights, (and then gave me a look up and down and said ?but I don?t think you do that anyway?)!

    he said to lead a completely normal life, enjoy the summer and not put myself in a horrible state, that this is a benign condition.


    however, if I get much worse I need to go back and I?ll see him in 4 months time anyway.

    Then, he?s prescribed me some urological tests to see if I have problems down there, since I told him that sometimes I pee and then 20 minutes later I pee again and it feels like burning.

    All in all he said ?it?s not like you?re horribly disabled, you are walking about perfectly normal, so be happy, most people don?t even notice they have these things?

    i told him about my suspicions that there was there was something in the lower spine, since exercising the lower spine makes some pain go away, but he said that according to the MRI in November, my lumbar spine is totally fine, plenty of space for the roots.

    He said I?m too young to undergo a major spinal surgery (31) and that the procedure they did was very minimal, and they won?t do anything more radical unless I?m feeling a lot worse than now.

    Then he went on about how sometimes nature heals itself (lol what?)

    so basically that?s it guys, the cyst is here to stay, I just have to live with it apparently, am doing pray that it doesn?t get worse.

    Man I feel like shit right now...

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