Get a sleep study, it will be fun they said…
The night of July 19, 2019 started out good with finally getting the sleep study I’ve been asking for. I was feeling so tired and nauseous from forcing myself to stay awake all & night though, and after being all hooked up to what felt like a gazillion wires I was ready to lay down.
I went though the required steps before I could try to sleep and then it was black and quiet!
Shortly after laying down I started losing the ability to move my right side, which is normal and I been through it way too many times!
Without a clock I had no idea how long I laid there trying to sleep, but I eventually fell asleep. Then started the dream, it was pitch black with a dark figure running, it was me just running from what, I don’t know. Then I was falling, more running and falling, I could feel myself falling into a deep dark hole.
I woke up and I couldn’t move my right side, I couldn’t even open my right eye, which has never happened. At the same time, my while body was extremely restless and was jumping constantly. Then eventually that calmed down, but I lost the ability to move my left side as well. There I was laying in an unfamiliar place paralyzed from the shoulders down, and having a difficult time breathing and I couldn’t talk. I tried to say “help me” but nothing came out! Eventually a voice came over the intercom asking if I needed help falling asleep, at that time my voice had come back and I stated I could not move. She came in and asked if I wanted to lay on my side, I stated I’m having trouble breathing and I can’t move my legs or arms. She asked if I wanted to go to the hospital next door. I said I’m not capable of making the decision right now. Part of me wanted to say yes, but I knew what was going to happen at the hospital! Nothing.
She said she was going to go talk to the doctor and he happened to be walking by, she advised him of the situation and he said he was calling 911! And then there were first responders in my room asking a lot questions, and not fully believing what was going on. I do not blame them, nobody believes it. We waited for the paramedics to get there, and then more questions. Not believing me they asked if I could move over to the stretcher. If I could, y’all wouldn’t be here. Just a couple minutes later I was in the ER, and more question came. Nobody believes me, I even stated I’m not surprised you don’t believe me, nobody ever does, but this is real, and I hate it! The doctor even stated that I can not be paralyzed as I was talking completely normal! Seriously!?!?
They hooked me up to the monitors and left me for about 2 hours, they finally came back just as I was going to pee myself! With the help of 2 people we were able to get up and use the commode they brought in, I started gaining the use of my arms back, but not much.
They left me alone again, not doing anything but asking if my parents were really coming. They were but the storm knocked down tree branches across the driveway so it took a little longer than usual. Once they got to the hospital, the doctor finally came back into my room only to ask if what I said was happening really happens. He stated they were ready to send me home, but not alone. My parents explained that this happens very often and it is in fact real! The doctor stated I should follow up with my neurologist, I stated they refuse to help me. He said there aren’t any other tests that they can run to help figure it out! He actually wanted me to get up and walk out on my own. That was not going to happen.
So that is why I don’t go to the emergency room when these episodes happen, they won’t do anything. They actually wanted me to walk out of the hospital. Not happening, I was so weak and still couldn’t move my legs. By the time I got home I had gained back my arms and left leg to the point to semi function. Usually once these episodes end I bounce back as if nothing happens, this time I didn’t. I was so weak and sore and exhausted, it took until the next morning to get over it. But then I was still in tremendous pain because we lost power early Saturday morning and I had to sleep laying flat, which causes a lot of pain. The power came back on early Sunday morning which is great, yet the damage is done, I’m in tremendous pain, weak and exhausted.
That is a weekend I never want to repeat again!
I was told that I had to repeat the sleep study as they didn’t need get enough data to analyze! I was afraid to go get it done, but after a week and a half I finally called to reschedule it! The second test went better, but I still lost the ability to move, but it just wasn’t as severe as the last time!
Sadly they said there were no problems found! Apparently I didn’t move much which is understandable as I couldn’t and was hooked up to so many wires that malfunctioned when I did move!
The sleep doctor office I was seeing at the time told me to keep a sleep diary! Track when I had caffeine (which I never drink caffeine anymore), when I napped and slept! The doctor said assistant started telling me here isn’t much they can do, but keep on with the diary! She stated that I couldn’t enter my room until I went to bed for the night! I said I’m sorry but that can’t happen as 1/2 my room is my craft/work area and I need to work there! I was starting to say that they can’t just go with whatever they tell most patients. That we need to think outside the box with helping me, but she got up and walked out!
Next thing I know she was back, and the doctor comes in. This is the first time I’ve ever met him and he starts demanding that I do what they say! I can’t go in my room and I have to be up by 5:30 am and can’t sleep until 11pm! Now anyone who deals with chronic fatigue and fibromyalgia they know the sleep is very important and I can not force myself to stay awake that long! The nights that I did force myself to stay awake for the sleep studies I was feeling so very sick and weak because I didn’t rest during the day! I will say that I don’t often nap as I’d rather be awake crafting and listening to my books. Sadly the only thing they would say is what I’ve have tried so many times. I must follow and do what he says or I’ll be screwed!
Did I speak up and try and get them to think of something different? No, I was too shocked at how this doctor and his assistant was treating me! I know that doctors has basic routine things they want to do first for everyone, but they seriously need to adjust their plan and listen to the patients more! Figure out what is best and not try the same thing for everyone! Needless to say I didn’t set up a follow up appointment and won’t go back! I have learned to stop dealing with doctors that are rude and I don’t feel that they would ever do anything different!
These doctors may view me as uncooperative and difficult, but I’m not! I am tired of doing the same meaningless things and want them to think of how to help patients where the standard don’t help! Like my pcp will remind me is that I know my body the best! I know what has worked and what hasn’t!
I’ve said it a million times it seems, but I’ll keep saying it. The one thing medical professionals need to learn in school is how to actually talk to and listen to the patients!