It’s been a while. I keep my blog authentic so when I’m not able to post because I’m going through a difficult time being ill, you won’t see posts from me. I want you to experience the real ups and downs. What a rollercoaster this can be. So as my family and friends know when I go silent… Tracey is not well. I’m on the mend albeit slow and gruelling. I thought I’d try to blog a bit. I’m hoping it will bring some catharsis and speed up the healing. This is as much as I can do in this post because so much has happened…
Where to start? As you know I was hospitalised because I was having “drop attacks”. Crashing to the floor with no warning. Fully conscious but paralyzed, lasting from seconds to minutes. My rheumatologist felt that I had to be hospitalised immediately and have a neurologist take on my case.
The week that followed was torturous. The sheer amount of tests was insane. To get a proper read on some of the tests the neurologist needed me to go off all my meds. ALL. I had MRI’s and all the regular stuff. But boy did I not foresee the other tests.
Stopping my meds, some of which were necessary for sleep sent me into a terrible spiral. I developed very vivid dreams and nightmares coming off the meds. I couldn’t sleep properly because my nightime meds had been stopped. I ended up becoming sleep deprived. I slept for a few hours and even then I had these extreme dreams. I would literally be awake from 3am in the morning. Then it was like “Oh well” since they come around at 4 and 5am anyway. (Why the hell do they do that??) Bringing you tea, taking your vitals and running IV meds. So I just stayed awake.
I started with the first Neuro technicians who put all those Sci Fi type electrode plugs on my head. Glued. Glued to my head. I had the stuff glued to my forehead even! I had that on for 24 hours. The tech who came to remove it used a massive amount of acetone to remove the plugs. This poor new guy and all my hair… He just went crazy with the acetone! All I’m thinking is “duuuuude”! Besides killing my hair you’re making me flammable here! Like no one strike a match! And there I was with my hair looking like The Grinch meets cotton candy and high off of the fumes!
Sleep continued to elude me and I was starting to feel like I was coming undone. I spent my time watching series on Netflix (One I’d like to review later). I was in pain from being in bed and they would send the physio around.
The most torturous part was the sleep lab tests. Man was I not ready for this! The first test which was during the day consisted of me being in a comfy, warm sleep lab room. Designed to put you to sleep… but first! More electrodes connected to my head! Attached to a little box that I had to carry around.
I was made to sleep for 30 minutes and then just as you hit that good sleep, you get woken up! I then had to stay awake for an hour. After the hour I was put back to sleep for 30 minutes and then woken up and made to stay awake for an hour. This went on ALL DAY! It was pure torture! At one stage I ate to stay awake. Remember I had already been sleep deprived and up since the early hours of the morning. I was walking around like a crazy person… with my IV and electrodes connected to a box which I carried around as well. Suffice to say there were lots of stares. Damn, I would have stared myself! I looked like a zombie out of a Sci Fi movie! I had to shuffle around the hospital corridors to keep awake. Yup. Like a crazy person.
Then came the night test. MORE electrodes applied. I was going to be hooked up to some machines/laptop and wouldn’t be able to walk around while hooked up. I was told I would have to use a bed pan. OH. HELL. NO. I was going to be keeping it in man. The tech said she would be back at 4am. I was hooked up at 8pm and let me tell you… I kept it in till 4am! I was awake from 3am waiting for the tech. I needed to go but huh uh I was pinching till I was unhooked! 4am and I was finally unhooked. All the electrodes were removed. Thankfully with hot water this time. The hair situation was becoming dire!
It was Saturday, my neurologist came in and explained that the results would come on Monday and he would go through all of it and make a determination. Wait. What? You mean I am going to be in hospital till next week awaiting results from the Sleep Lab and Neuro techs? So basically languishing in this awful hospital, a complete mess till next week? Mentally it had taken it’s toll on me. Sleep deprived, off all my meds, crying at the drop of a hat.
The neurologist agreed that maybe being in my own space now that I could go back on my meds I might be better than just laying there waiting for results. I was to come to his offices at the hospital the following week so we could go over the results and the possible diagnosis. I cried again. Happy tears. I was so excited to go home. I just needed the comfort of my own home and hubs. Not to mention get to eat proper food! I was given new meds to help with the sleeping but I was also taken off certain meds.
I finally came home. I felt better already. All my home comforts. My scalp literally had cement like crap on it! I couldn’t just wash this out. It was going to be a process! I still felt bits of electrodes and trying to pull it out was breaking my hair! I promptly went for olive oil! I massaged that stuff into my head, working my scalp to get that cement stuff off. It was a start. I left it in my hair. This was going to take some work.
Little did I know that was the easiest thing I was going to have to deal with. I didn’t know what lay ahead of me. The switching of meds was about to bring about a horrible time and a real battle. One that I did not expect nor was prepared for … I thought it was over but I was so very wrong….
To be continued…