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Thread: liminal illnesses

  1. #1

    liminal illnesses

    I'm a para living alone. When I'm healthy, I have no problems with independence. I can do all transfers and manage things easily.

    When I'm very sick, I'm in a hospital. Not much I can do about that, except vent about the absurdity of hospitals here.

    Lately I've been having problems dealing with situations on the border of these two situations, liminal states where I'm not that sick but I'm definitely not healthy.

    When I came back from the hospital, it was tough to manage for a while. I was exhausted, no stamina, even though the fever was only 100 or so when I came back (it had been higher when I got in). Transfers were hard and I made a lot of little absentminded mistakes, like forgetting medications. I was too well to be in a hospital, I didn't have sepsis and was recovering. But it was surprisingly tricky to manage alone.

    The other thing with these minor illnesses is that I don't really realize I'm weaker or confused until I get better and can look back on it. At the time I feel ok most of the time. I mean that's one reason I pushed to be let out of the hospital but it turned out I was weaker than I thought.

    What I need is basically for times when I have a low fever or am recovering from a hospitalization, someone who just helps me out with things so I can rest. Probably 10-12 hours a day at least. Without that I feel like being at home alone is not exactly dangerous but I feel there's greatly heightened risk of some kind of transfer accident or something. I'm kind of worried that as I age I'll have more of these episodes, I mean, it never used to take me a week to recover after leaving a hospital for fever/sepsis.

    I can't use a standard caregiver because I don't need a caregiver most of the time. I only need a caregiver if I'm sick or convalescing. Which hopefully isn't that often, I'd gone years without needing one.

    Another big issue I have is when to call an ambulance. Obviously if I'm too weak to get out of bed, I have to call an ambulance if I'm sick. This happened when the UTI fever reached 103 or when the bowel obstruction last month made me really weak.

    But lots of time I kind of don't feel quite bad enough to call an ambulance. Like I could get to the ER on my own. Say it's a 101 fever that I sort of suspect is going to keep rising, but who knows? It's just I don't like to go the ER on my own since if I'm feeling strong enough to go I don't like to, and I'm definitely not strong enough to sit up for 4 hours waiting in an ER. If I called an ambulance though every time I felt bad I'm a bit concerned I'd get flagged somehow. From their point of view I should just take Tylenol, but that can be really hard to manage. I mean in my situation calling an ambulance for a 101 temp actually makes some sense but I'm not sure the ambulance and ER would see it that way, since if I had help I could manage it myself.

    So my point is that it's these liminal states between wellness and sickness that I find the most challenging, mainly because I live alone I suspect.
    Last edited by xsfxsf; 09-27-2018 at 12:18 AM.

  2. #2
    I sure haven't seen the word liminal used- rarely.
    However it is difficult to tell whether the liminal or intermediate state of symptoms/problems is going to progress to needing the ambulance and/or going to the ER. However, we recommend calling your doctor or at least seek some type of medical validation.
    I think acquiring a caregiver for minimal numbers of hours per week- so the person knows you and might could assist you with the decision ; and also one who is flexible and could provide care for more hours.

    CWO
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  3. #3
    Senior Member lynnifer's Avatar
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    I can relate to this. Aging as a para really sucks cause you're going to do it alone.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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