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Thread: Coping with being on a vent

  1. #1

    Coping with being on a vent

    I don't have SCI, I have a progressive mitochondrial disease which has progressed tothe point where I cant breathe on my own or move.

    I also have PTSD from a sexual assault episode so that is difficult to manage. I Feel like i can never get any rest. caregivers are constantly repositioning me, 2 hours every night. also suction. I can't sleep through suction. things like touch and vitals wake me up.

    GI issueskeep me up, between cramps from my jtube feedingnot goingthrough,to needing my gtube vented,or my ostomy it's likethereis alwayssomething going on that is keeping me up. notsleeping wellmakesme veryirritable,aggravatesalreally bad fatigue

    I think between the PTSD and the sleep deprivation my anxiety has been really high lately. and it's funny,when people mention having anxiety, the first thing people recommend is deep breathing, or focusing on your breathing. But my breathing is all done by the vent now. It just does its thing regardless of what my brain is doing. It's so weird. I feel like I have no release valve for my emotions.

  2. #2
    I'm a fairly active Polio-paralyzed person, but due to respiratory issues was placed on a vent, but only overnight. Recently had to add oxygen concentrator to the vent. Daytime I have small oxygen tank attached to my wheelchair, which I can change every 5 hours.

    It was very difficult adjusting to sleep since I was first put on mechanical ventilation 7 years ago after bout with pneumonia.
    My situation is quite different from yours, but my sleep is often interrupted.
    I covered the lit-up vent screen with fabric, making things darker - it helped a lot as the screen was right next to me. Hubby found out about "mindefullness" and asked me to focus on my breathing, instead of all the anxieties of the day. This helps as I can feel the vent air going in and out - breathing. I sometimes give in to focusing on one of hobbies and sometimes that works. On a rare occasion I use headphones and listen to talk or music. I have found I can often fall asleep when the tv is going on a low volume so I can just barely hear it. Kinda drowns out my thoughts.
    When I had caregivers 7 years ago, I had one rude one removed from my care. I asked them not to ever turn on more lights than needed to suction me, etc.
    It helps to talk about issues with family, friends. Don't hold in feelings!!
    Let us know how you are doing. Others here may be of help to you.

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