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Hour to Hour and Day to Day Symptom Unpredictability

Discussion in 'Lifestyle Management' started by Carrigon, May 14, 2011.

  1. Carrigon

    Carrigon Senior Member

    PA, USA
    One of the most frustrating things for me is never knowing how I will be hour to hour or day to day.

    Like today, I was able to cook this afternoon, but it triggered POTS and now I'm fevered and really, really sick. Cannot move from this bed.

    Some mornings I will feel like I'm just dying with severe pain and fatigue and a million symptoms. Then by that afternoon, I might be better and be able to do something.

    Or it's the opposite where I was okay in the morning and by noon or night I am at death's door again.

    Or I'm sick the entire day and by late at night I'm better and could actually do something but it's too late to go anywhere or do anything.

    And appointments are hell on me. The stress of not knowing how I will be on that day, at that specific time. It's absolute hell. And of course, most things want you to have a morning appointment. No one gets that we're usually really sick in the morning. But often it doesn't matter cause I can be sick at any time on any given day.

    It's impossible to ever really make plans or do anything I ever want to do because usually I'm too sick when I want to do whatever it is. It's just so frustrating.

    And this is the second time this week that I've found my hands and arms are too weak to lift pans when I'm cooking. It's really hard for me. Weak, lightheaded, dizzy when trying to make myself something to eat. Doesn't matter if I sit down alot, still happens.
  2. Boule de feu

    Boule de feu Senior Member

    Ottawa, Canada
    This is why we need to embrace every second, every minute of each positive moment we have with this illness. I had a relapse that lasted a month and I thought I would never make it out of it. Now, I feel a bit better. I enjoy this time I have, now. It is not perfect. I can't go out but it is better and I can manage to do few things. Try to focus on the positive you have. Stop looking at the bad times. It will be easier on you. I know it works me even though it is pretty tough to think that way. Hang in there!
  3. illsince1977

    illsince1977 A shadow of my former self

    My experience is the same. It's amazingly unpredictable and variable.

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