It was about 10:30 A.M and I arrived to the ER after a rough ride in the ambulance. Every turn felt like I was rolling around due to the vertigo and ever muscle was tense due to fear. As soon as I arrived they immediately took my vitals at the entrance and instead of putting me in a room they placed me about 6 inches away from this noisy entrance way. Every time the door would open, I would jump and whimper with more internal fear. I tried putting earplugs in but I still could hear the commotion. To make matters worst, I was also right next to the holding area for the drug over dose patients. I was obsessed with this. So many were coming in and being given Narcan right near me. I kept asking my husband, the nurses, people walking by “ are they okay?, are they on drugs? did he fall on the floor?”. I couldn’t stop obsessing over it.
Soon after I arrived, a Neurologist came over. But, before she could even introduce herself fully my doctor was on the phone and wanted to talk to her. My doctor told her that what I was saying and feeling is true and really happening to me and I should be admitted for observation. Now, a team of Neurologists came to assess me. I wasn’t able to do much of what they asked me to do, which was very upsetting. As they were testing me, I was still cringing at the door and obsessing at the other patients. I was also having a hard time keeping my eyes open due to an awful headache and vertigo. Before they left, I asked to be moved to a more quiet area which they said they would work on.
Hours later I was moved to more quiet area of the ER while waiting for my room but it was still in the hallway. Since I’ll be staying, and bedridden they also wanted to give me Heparin shots in my belly that help with blood flow. During my stay, my willingness to take these shots go well and sometimes they don’t. It’s nighttime now. They wanted me to get an MRI done which I freaked out about due to the noise and the space (I’ve never had an problem with these tests in the past). I spoke to the nurse and said I’m going to need medicine to get in that machine....that’s the only way. They gave me some meds to relax me and off I went and I managed well enough. I finally was able to talk my husband in to going home since my parents have been with the kids all day/night. I was still relaxed from the meds and this was the perfect time for him to go, even though I wasn’t in my actual room yet. He agreed finally and off he went. The nurse came eventually with a Heparin shot and I was so fearful I had to pass on this shot. I did finally fall asleep and woke up in the mall. Sitting up I thought about getting up and looking around through the stores. The internal urge was strong. But, the longer I looked down in the mall I realized I was having an hallucination. I can’t walk, I can’t move my legs enough to even attempt to get them off the bed....but the urge was strong to get up and go. I decided to call the nurse. I explained what I was seeing and a neurologist came and spoke to me. I broke down crying saying “I know it’s not real, but I just want to go”. She calmed me down and was able to move me to an isolation room.
I wasn’t moved to my actual room until 5:30 A.M. At this point, they took me off both of my medicines to see if I was having a side effect to one of them, especially the Keppra. If that was the case, I should show improvement mentally as each day passes. For most of my day I had no roommate which was wonderful. It was nice and quiet. The room would’ve been perfect if it wasn’t for the cars driving up the window and onto the ceiling from the outside. I had to tell my nurse to shut the curtains and to let my doctor know. The doctors were coming in daily and I got really good at telling my medical history all the way back to high school to when my passing out started. Each medical student that came in wanted to know the same story, it was exhausting. I could only talk for about 10 minutes before my eyes and head would feel like it was burning from the inside. My husband did a lot of the talking and then I would just fill in the gaps he would miss.
Then my elderly roommate came in from post surgery. This may seem mean from this point on, but you have to understand that I wasn’t in my right state of mind. My roommate had an oxygen breathing tube in her nose that kept falling out. Not sure if it would fall out just from her sleeping so deeply or from the surgery drugs still in her system and being unaware. But, when the tube falls out that causes the machine to beep. The beeping noise to me was as if someone was stabbing me in the ear. Not a huge knife in the ear, but maybe it would go in a few inches a few times. So, you get it, it’s not a wonderful feeling each time I CONSTANTLY hear these beeps. At first I was nice and say “ tell your nurse your machine is beeping”, “ your machine is beeping again tell your nurse”. Then, as the night went into the late hours and I still wasn’t sleeping and it was still beeping I was no longer nice and couldn’t hold back. I opened up her curtain, pushed her nurse button (who never came), so I called for my nurse. I said “I’m starting to meet my limits with her, can you tape the tube to her face or move her or me out of this room”, she said she will talk to her nurse. Then again beep beep “shove the tube up your nose and it won’t beep”, she said “oh I’m sorry” I was like “no you’re not, because you keep doing it”. This time, I tried to ignore it by listening to a movie using earbuds but that just intensified the issue. I don’t know if it was because I was already in a fight or flight mode, but the sound so close to my eardrum just heightened things more. I started screaming at the lady “shut the machine off, what is wrong with you, put the tube in your nose” as my nurse comes running in (also with my next Heparin shot). I started kicking, punching her and refusing the shot. She said I should take something to help calm me down though and it would help me to get some rest. I started crying, “I can’t take it anymore, my skin itches (I had an allergic reaction to the heart monitor sensors and welts formed), the constant beeping, my head is killing me, I want to rip my skin off, I want to leave and get out of here”. At this point, I attempted to get up, but couldn’t really move far but she held me and calmed me down. The tech stayed with me and the nurse came back with medicine but I had trouble reaching for it (I kept reaching next to the cup). The nurse poured it into my mouth. Shortly after my roommate was moved out of my room. The next morning, I apologized for my behavior and thanked her for moving her. She said she moved the patient down closer to her own nurses station since she was having so many machine issue and I have a patient with neurological and sensory issues. My nurse rocked !
The Neurology team was in every day. They spoke to me about the incident last night and I broke down crying. They mentioned that they think I should talk to the hospitals psychologist. I immediately said “I’m not crazy, I know I’m doing crazy things, but I’m not crazy and don’t want to talk to anyone. But on the next day, during questioning and breaking down, they brought up talking to the psychologist again. But, this time they worded it differently. They said, my brain is on “GO” right now and is constantly fighting, we need it to calm down so we can treat you better. I’ve been in a state of fight or flight for several weeks and I decided to talk with someone and also accept medicine to calm my nerves. They also ordered me an 24 hour EEG, to see if I was having any seizure activity. I did have some episodes of tightness while there, but nothing like what I was experiencing at home. My test came back clear. All my blood work came back clear. My MRI was clear. I was on a liquid diet since my arrival but on day 2 I had swallow study to determine what type of texture of food and drink is the safest for me at this time. Based on my fatigue level, I didn’t get too far before coughing and was placed on a liquid diet. That lasted about 3 of my 7 day stay. Then they gradually added texture. By the time I left I was on soft foods. Physical Therapy came in next and as soon as he saw a younger person in bed he said “we are going to get you up and walking today”. He asked me to sit up and I needed assistance with that. Once I was up, he had to sit next to me so I didn’t fall over. That’s where the session ended. So I didn’t walk!!!! Occupational Therapy also came that day to see how I did feeding myself. I had yummy broth and propped up the pillows under my elbows to help support myself. I asked for a curved spoon since turning my wrist was too much effort. Of course she said no, being a special education teacher I knew that would’ve been the answer. I didn’t eat much, due to fatigue. Speech came back in to work on word recall, memory and a few other things but I can’t remember. Each day they would pop in and work on various skills.
The Neurology team would come daily, each time walking in with 4-6 people. It was very overwhelming and each time asking the same questions trying to find a pattern. They are thinking that maybe the passing out I was having in high school were actually seizures was one of their theories. On the 6th day, the team came in and said they know what’s wrong with me. They said I have Functional Neurological Disorder and handed me a 5 page packet. They recommended that I soon schedule an appointment to see a psychiatrist and a psychologist since this disorder impacts your life and well being greatly. The social worker started talking to us about sending me to an inpatient rehab facility. My husband visited one of our choices. They were known for doing well with neurological issues. So after 7-8 days in the hospital, I’m off to rehab to get my legs moving And my mind working again. Hopefully I can bear weight on my legs soon without having tremors or collapsing. Rehab here I come!
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