I've been feeling really bad. Lots of pain below the waist, legs, etc. Very weak. And especially feel like it's harder to hold my head up. I lie down several times a day in order to relieve everything, but that position flares up my tethered cord stuff.
Have you ever noticed how much of your neck muscles you use when you turn over in bed, or get out of bed? I knew after I broke my neck. I used to have to put a flat hand on both sides of my head, and manually lift and turn my head to turn over in bed. And to get out of bed or out of a chair, I put my right hand behind my head, cupping the occipital area, and helped carry the weight of my head to an upright position.
Today, I am still doing the same thing to get out of bed. I don't put hands on the sides of my head to turn over, but it hurts to strain those neck muscles like that. There's a lot of pressure on those muscles, you might stop to think about it tonight as you roll over in bed!
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I finally bought a medical bracelet, in case I am ever in the presence of an EMT again. I like this bracelet, it's kind of pretty, it's slim, and has about an inch and a half long door that opens up and you can put a folded piece of paper into it, or write something onto a small slip of paper, that an EMT or medical professional should know in the case of emergency.
On mine, I wrote, "C1 frx, severe skull base issues. Do not intubate unless life and death. Do not hyperextend neck. Possible autonomic dysreflexia."
These are the only things I think are most important in an urgent scenario. One of the first things EMTs do is tilt the head backward in order to open the airway. Doing that to me could cause my C1 to slice through my spinal cord, or some other stuff I'm not sure of.
Intubating someone calls for this hyper extension of the neck as well. When I have my surgeries, they have to have what they call "awake intubation." I've heard this is a horror show to experience, to be intubated awake (having the tube put down your airway to your lungs). For some reason, they need me awake to help them do the job right, I guess, but using the least amount of hyperextension. In the OR setting, they give you "Versid" so that you forget about all this stuff. You experienced it, but you have no recollection of it.
The autonomic dysreflexia, I need to have that verified by a good neurologist. I hope, next time I got to TCI, I can have this confirmed, or not. It's a condition that affects people with spinal cord injuries. If you get stressed, in pain, excited etc, your blood pressure goes up. In "normies," you have a message that gets sent up the spine to the brain that tells the brain that the BP has spiked and to slow down the heart, get the BP down. In some spinal cord injured patients, this system is interrupted and the message never gets to the brain. The BP spikes, but nothing gets it to go back down.
It's necessary for emergency medical personnel to know this, because they might see a very high BP (I had one spike the other day of more than 181/152. I figure it was more because it took me a couple of calm minutes to get the BP monitor out and set up before I got the reading), try to give me a med to lower it, and I guess autonomic dysreflexia does not respond to regular BP meds. In fact, I learned on one website that people with verified AD should carry a med called Procardia at all times.
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I have had several phone calls I've needed to make for about a week. I've written here often about my situation with making calls. It's so hard for me. I think I figured out why yesterday.
When I finally feel pretty good on a certain day, and there are not other things really pressing to be done, I might think, "I feel like calling so and so!" Then I'll think: "But first, while I feel okay, I'll do the dishes and put a load of laundry in, and make the beds. THEN I'll call."
And by the time I'm a little bit into those chores, I feel the neuro symptoms creeping back in, and I know I won't be calling anyone.
When people call ME, and catch me unaware, I so often enjoy the call because I perhaps have not already done any household chores!
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I was thinking about how my prayers have changed. My desires. My wants.
When I first got hurt, and for a few years afterward, I wanted to be back to normal. I wanted my normal life back. I wanted horses and to be able to ride again. I wanted to be able to travel, and to perform again. I just wanted to be the normal, old me again.
Slowly, time creeps by and you learn to settle for less. Okay, I can't do my job anymore and I never will, but I'd like to have just one horse, just for me to ride and only at a walk through the woods. Please Lord.
That fades away, and I readjust and think, "Well, I'll be happy gardening. All I want is to be able to take care of my yard and enjoy it. Yeah, that's it."
Things keep declining and dreams start changing, too.
I find myself happy if I can do light yard stuff, and keep my house clean. Without pain. Maybe never have to wear a CTO or collar again, yeah, that too! Yeah, I can give up everything else, if I could have a life with these things in it, I'd be happy. Oh, and being able to ride in a car to travel a bit though the western states. Okay, Lord?
Next, without thinking of it, I find myself adjusting again. Okay, if I can keep the house clean, and drive half a day's drive away (I mean "ride", not drive. I haven't really driven in 2 years) and work in my yard without leaning over, okay, I can live with that...
Dreams get dialed in again. Right now, I feel like, If I could get up in the morning and not hurt so much. If I could go through the whole day without debilitating pain and weakness, I can live like that. I can learn to do with that.
I guess survival depends upon lowering expectations when necessary.
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