so it was night, same old story, hearing lots of "I'm not willing" and having the call button not answered in anything CLOSE to a timely matter. I had to pee, the portable commode was just at the end of my bed. After no one had arrived after pressing the button and telling the voice on the other end that I needed to use the bathroom, the idea of me being able to stand up, as the physical therapists had got me up earlier, I decided to try to go to the commode on my own. Using my arms I lifted my torso from the bed. Doing that was harder than I ever thought it would have been. It took a whole lot of effort but somehow i was able to turn my torso and with my arms, force my concrete pylon legs off of the bed. I felt nothing. Then at great length, I had to use my arms to raise my torso up off the bed ever so slightly (it was all I could manage) and then inch my torso down toward the end of the bed. It wasn't even an inch at a time... probably more like a half an inch. My pylon legs just dragged along with me as dead weight. I began pressing the call button again because I realized this was going to be harder than I thought. But in the meantime while I was waiting for someone to come --lol--I continued to half-inch myself down the bed. By the time I got to the end of the bed, I could see that it must've been a "shift change" as all the nurses were gathered RIGHT outside my open door, which is what they did every shift change. Since I had finally gotten to the end of the bed, and the commode was just in front of me IF I stood up out of bed, my plan was to stand up, then twist my torso around so that I would drop onto the commode and do my business. How i would get back in bed was never a thought. I just wanted to empty my bladder a whole lot sooner than would happen if I waited until someone showed up and was willing to help a 2 max.
However, by the time I got to the end of the bed I think I knew that this was something I really wasn't going to be able to do. So with all the nurses right outside my door, I started yelling "Nurse!" No answer, not a glance in my direction. So I did it. I used my arms to lift my torso up off the bed, and i was basically in a standing position. It didn't last a millisecond before I knew I was in trouble, and my concrete pylon legs gave way underneath me and I went straight down, just like the Twin Towers on September 11th. I'm saying that literally. I'm a very visual person, and literally as my two concrete pylon legs crumbled under me, at the same time I envisioned the Twin Towers, right next to me, as they collapsed and crumbled, I collapsed. I didn't CHOOSE to think of the Towers, it's just the vision that my brain had, probably since paralyzed folks often describe their legs as useless, concrete pylons. I was still seeing the dust from the collapse of the Towers when I finally screamed bloody murder for help, and turned to see what had become of my lower half. I fully expected to see dust, and crumbled parts of me. It's funny how the brain works that way. Logically I guess I could have realized (even at that time) that legs cannot crumble into the dust and debris as did the Towers, but logic was nowhere. I honestly was SHOCKED when I saw that my lower half was indeed NOT dust and crumbles. But my feet and knees and ankles were all in unnatural positions. If you're as old as I am and watch football, maybe you remember the Joe Theisman leg break. HORRIBLE to see. Even the announcers are squeamish sounding whenever a replay is shown of it.
Nurses finally arrived, and I can't envision how I was put onto a gurney, I can only remember what I heard two nurses say. One said "why didn't her mattress alarm go off?" and another said "and how did her bed get moved so far off the wall without that alarm going off?" I'm guessing that all my "inching" my torso down to the end of the bed caused the bed to move a bit away from the wall each inch of the way. I remember feeling embarrassment and shame and so much regret that I had surely made my condition even worse. I expected that every bone in my hips, legs, knees, ankles, and feet had numerous fractures. I remember crying silently as I was wheeled to xray. I made myself WORSE, more of a burden, needing even more care than I did now!! But by God's grace nothing was broken!! I have no idea if I was covered in back and blue bruises, or if the awkward collapse tore a ligament or tendon, etc, because I could feel nothing. But I cannot express how grateful I was that nothing was broken. A miracle.
Sooooooo, I have developed PTSD. I didn't know I had until 2 counselors told me. I see the counselor provided for free from the breast cancer center, and through our discussions it came out that every time I feel a weakness in my legs, or a nerve shooting up, both of which happen often, those are triggers that bring my brain, my vision back to the dual collapse of both my own legs and the Twin Towers. I always see the Towers when I remember my legs collapsing. Do you know how often I'm forced to relive not only the hideousness of my own fall, but to also relive the Towers collapsing? All the memories of that day in 2001 come back at the same time as the horrible memories of being paralyzed in a place where I was ignored, where I heard "I'm not willing...." so often that it made ME feel badly about myself, and shame, and embarrassment for being a burden. And I'm a person with a strong ego! It's pretty impossible to make me feel bad about myself, but they succeeded. There are so many triggers that set me off to relive these events and horrible, horrible memories and feelings. So, that's it! That was my experience being paralyzed at that hospital. The next day, after my fall, I arrived at a different hospital as much of a "burden" as I was before, but the staff here, where I stayed for 3 weeks, were FABULOUS. It still took 2 people maximum effort to help me do anything. But when a call button was pressed it was answered right away.... by professional, caring, compassionate people who never made me feel badly about anything. And each time I needed to go to the bathroom, the 2 people would put me in a wheelchair, and wheel me the few feet toward the large bathroom in my room, then they would help me out of the wheelchair and onto the toilet. (never a portable commode or bedpan here). All while respecting my privacy. A hallway door would never be open,and the nurses and aides would make a point to look away, or have something to cover me if needed.
My hands were still paralyzed. They had to wiggle my underwear down for me to use the toilet, which is NOT an easy thing to do to a person with paralyzed legs. They had to wipe for me. You get the idea! And they did it all while keeping my privacy, and always being cheerful and happy to see me.
I've babbled on and on, almost nothing related to breast cancer and this forum at all. I guess we could make the case that if you get cancer, you may think "well, this is it. this is the bad health problem I'll have to deal with"...but watch out..... something else, something worse, can still happen. I have learned personally and by hearing other patients' stories and from doctors, that the course of cancer treatment is never predictable. Things will always happen to set back your time line of treatment, or you may have to switch to a different treatment plan, you may have to postpone your own treatment because of a family member's crisis...... it's just always something. Hopefully, everyone else out there with cancer reading this does NOT come down with GBS in the middle of their treatment. Or ever. It's extremely rare, so chances are no one reading this will get it. Unfortunately, it can recur. Things that can trigger a recurrence include surgery, an infection, or injury. Well, I'm definitely having at least one more surgery for my reconstruction. And since folks with GBS can never get a flu shot again, or any vaccine, or even a tetanus shot, chances are that some time in the decades before I die I will get an upper respiratory infection, and certainly injuries because I plan on being as active as I can be, and sometimes, accidents happen during adventurous activities. I'm also more likely to get infections since I have no lymph nodes on my left side. I stress out about the many things that could set off GBS again, and boy, do I fall into a panic. I see blackness all around me and know that I am paralyzed and no one will help me. I hear the voices saying "I'm not willing"..... This is my PTSD, and I am trying to get over it. The doctor I saw today specializes in helping people cope/recover from PTSD.
I'm worn out! And my fingers are still partially paralyzed so all this typing is a real strain. I hit the wrong keys so often it is kind of funny, If I ever didn't try to find all my mistakes and fix them before I submit, all I'd be posting would look like mumbo jumbo.
Best of health and positive thoughts to all.