Today's blog started out as just an ordinary day in the life, but the day turned out to be anything but ordinary. Hopefully one of the few bottom-out days, but definately a low point.
When you put a controlling personality into a hospital environment, it is extremely tough to adapt - no input into decisions, actions, times, schedules, what is happening when and to whom. Even down to when friends and other visitors arrive. For me ... a lesson in giving myself over to the people who intend to be helpful.
As a result of surgery, and not yet known whether temporary or permanent, I am suffering from paraparesis - partial loss of function in the lower limbs (complete loss of function is paraplegia,). In effect, I cannot support my body weight on my legs, I need to use my arms to transfer from chair to chair, and I can't stand on both legs (let alone one) without assistance. What this means is that of everything in my life, everything, I can only control what I can reach. Absolutely nothing else. If I need something from across the room, I can't get it.
Today was an interesting day in understanding the degree to which hospital administration is NOT focused on patient care.
At 11am this morning I was informed that I was being moved. I had been comfortably settled for four days into a private room in the neurosurgical ward, had my environment to my liking (in other words, anything I needed regularly, I could reach, anything else I knew where it was, so I could ask). I wasn't told I would be moved sometime today, it was NOW. Within seconds there was an aide in my room with plastic bags, shoving everything and all that they could find into them. Think I could find an aide to get me a glass of water within half an hour? not a chance. But if they're told you're moving .... look out.
I get shoved onto a gurney, bags stacked around me and off we go within minutes. Um ... where am I going? why? what unit? Is it a private room? am I going to me moving again? No real answers. I am delivered to a tiny hell hole, semi-private room in the spinal cord unit with the sole explanation of "this is where you were supposed to be but there wasn't a bed ready before". SERIOUSLY? The spinal nurse had no idea who I was, what my history was, even told me that I'd be here for a few days then they'd do an assessment to see if I needed rehab, so clearly they didn't even have a clue about anything my surgeon had advised. They had no medical or pill charts, AND they had to redo all of the spinal testing because I was new to the unit. Even though it is done every morning as the new nurse comes on shift.
And this unit is even more obsessed with elimination than the neurosurgical unit. Um .. I don't even know if I have bowel control yet (though that was proven unsuccessful a few hours later). Since the move I have been driven crazy by people with good intent, but who don't know sweet eff-all about me or my condition. On a Sunday, when no one can be reached. The neuro staff and I were actually starting to get to know each other ... my quirks, their quirks, their preferences, my preferences. Now I have to start all over again. Or maybe not. Or maybe. Let's start all over again.
I don't know my roommate and I don't care to know her. It's not her fault, but it has been a low day. I've lost all mental optimism and everything physical I could do this morning, I can't do now. I don't know what tomorrow will bring, but I can tell you the effect that this move had on my game today.
Had they come to me at 9am this morning and said "we'll be moving you today, we don't know when exactly, it's a small semi private room, we can move you to private when one becomes available, and it's a temporary place until you stop needing nursing care and we can move you to the rehab unit." My day would have been different. Instead of having time to gather and organize, I'm left dumped in a room with nothing around me and knowing where nothing is. If my phone dies, I apologize ... I have no idea which bag the charger was dropped into.
Today sucked. Today this hospital sucks and everyone in it sucks. Today I don't care about physio or getting better or being helpful or respectful or pleasant. Today I hide in this hell room and curse my hell situation, my dead legs, my loss of bodily function. I'm even mad that I had to leave the fan in the neurosurgical ward. It is hell hot in here.
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