I'm one of those weird people who like a very flexible schedule. As in, I want to have a to do list for the day, but no set time those things have to be done that day. My husband is super-organized, and prefers to knock out the least favorite chores first and have a more "gelled" schedule. I figured it would take us a week or two to mesh our two versions of scheduling together. We're not quite to the end of week one yet, and I've been reminded that both flexibility and schedules are paramount in the SCI life.
Life with a spinal cord injury means mornings and evenings are not flexible...at all. We can switch things around as in who gets ready first, or whether or not I get ready before or after breakfast, but that's the extent of our flexibility. Evenings are the same way. Every other night our routine, should things go well, takes about an hour and a half. Non-bath nights we can both be in the bed within 30 minutes. But on the nights things don't go well, I can be up for hours. As in, I don't get in bed until after midnight and then will be up and down a few times after going to bed. On those nights I wonder how on earth quad couples who don't use a waterbed or air mattress manage (without those two marvelous gadgets quads have to be turned every two hours when laying down..."be turned"...that phrase always reminds me of meat on a spit). But I greatly digress.
Tuesday morning at 1:16am I finally crawled into bed, SO thankful for the first time I didn't have to set the alarm for 6am regardless of the time and that Bobby would actually be able to rest instead of going into work totally wiped out in a few hours. What I didn't know was that for the next 36 hours he was going to be absolutely miserable. So this afternoon I had to call and cancel a class I had for tomorrow (and lose my deposit), because even if he feels better there's no way he's going to feel well enough to be on his own for 8 hours. It's one thing to be sick; it's another thing to be sick when you are unable to lay down by yourself, or roll over, or get what you need. And at times like this, it's almost pointless to call a doctor's office. Trust me. The conversation would go like this:
Dr's office: What are his symptoms?
Me: Dysreflexia and a slightly upset stomach.
Dr's office: long pause. Does he have a fever?
Me: Only when the dysreflexia kicks in.
Dr's office: How high is his temperature?
Me: It's 97.4 when the sweating caused by the dysreflexia starts. It's normal when it stops.
Dr's office: Is he hurting anywhere?
Me: long sigh...he's a quad. He doesn't feel anything.
Dr's office: Welll, unless he's running a high fever there's not a real need to bring him in.
And all this time I just want to speak with a nurse or doctor who KNOWS his condition, who understands what dysreflexia is and why immediate action is urgent (we actually had a nurse in a hospital once who made us an appointment with a cardiologist because she knew NOTHING about dysreflexia and thought he had heart problems because of it).
I really do think he just had a stomach bug, but the reality is, we never know. And I think that is what drives me crazy more than the extra laundry and uncertain schedule...we seldom know what is truly wrong. And I seldom know when to suspend my role as wife and when to pull rank as caregiver and demand a doctor's appointment whether he wants it or not. Meanwhile, I've rejoiced these last three days that Bobby is at home where he can rest as much as he needs without a million job questions pressing on his mind. That is a blessing all by itself.
Life with a spinal cord injury means mornings and evenings are not flexible...at all. We can switch things around as in who gets ready first, or whether or not I get ready before or after breakfast, but that's the extent of our flexibility. Evenings are the same way. Every other night our routine, should things go well, takes about an hour and a half. Non-bath nights we can both be in the bed within 30 minutes. But on the nights things don't go well, I can be up for hours. As in, I don't get in bed until after midnight and then will be up and down a few times after going to bed. On those nights I wonder how on earth quad couples who don't use a waterbed or air mattress manage (without those two marvelous gadgets quads have to be turned every two hours when laying down..."be turned"...that phrase always reminds me of meat on a spit). But I greatly digress.
Tuesday morning at 1:16am I finally crawled into bed, SO thankful for the first time I didn't have to set the alarm for 6am regardless of the time and that Bobby would actually be able to rest instead of going into work totally wiped out in a few hours. What I didn't know was that for the next 36 hours he was going to be absolutely miserable. So this afternoon I had to call and cancel a class I had for tomorrow (and lose my deposit), because even if he feels better there's no way he's going to feel well enough to be on his own for 8 hours. It's one thing to be sick; it's another thing to be sick when you are unable to lay down by yourself, or roll over, or get what you need. And at times like this, it's almost pointless to call a doctor's office. Trust me. The conversation would go like this:
Dr's office: What are his symptoms?
Me: Dysreflexia and a slightly upset stomach.
Dr's office: long pause. Does he have a fever?
Me: Only when the dysreflexia kicks in.
Dr's office: How high is his temperature?
Me: It's 97.4 when the sweating caused by the dysreflexia starts. It's normal when it stops.
Dr's office: Is he hurting anywhere?
Me: long sigh...he's a quad. He doesn't feel anything.
Dr's office: Welll, unless he's running a high fever there's not a real need to bring him in.
And all this time I just want to speak with a nurse or doctor who KNOWS his condition, who understands what dysreflexia is and why immediate action is urgent (we actually had a nurse in a hospital once who made us an appointment with a cardiologist because she knew NOTHING about dysreflexia and thought he had heart problems because of it).
I really do think he just had a stomach bug, but the reality is, we never know. And I think that is what drives me crazy more than the extra laundry and uncertain schedule...we seldom know what is truly wrong. And I seldom know when to suspend my role as wife and when to pull rank as caregiver and demand a doctor's appointment whether he wants it or not. Meanwhile, I've rejoiced these last three days that Bobby is at home where he can rest as much as he needs without a million job questions pressing on his mind. That is a blessing all by itself.
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