It’s been over five months since I last wrote a post. It wasn’t intentional, I just couldn’t write.
My inability started about 3 months ago when I was sitting in orchestra rehearsal. Half of the conductor’s face disappeared. I turned and looked to my friend realizing half of her face was gone as well. I thought I was going crazy, but then I looked at my music. The notes and lights swirled, zig zagged, and strobed. Everyone thought I was fine. Everyone thought it was just a migraine. Even I was like everyone…but it didn’t end there.
The ocular migraine stopped and the headache began. For one week, it was dull. I thought I was fine until I woke up a week later with spine and neck pain . Then fever, chills, swelling, sweating, dizziness, nausea, fatigue, balance issues rash, flushing, joint pain, stiffness, and abdominal pain set it. The Doctor thought it was Mono, I was treated and sent home, but the headache, back, and spine pain continued. Nothing would save me from it and each day I would sit in my chair staring at the wall with my mind completely blank.
I’d like to say I was thinking about something, but I wasn’t. I was incapable of thinking. I felt like I was brain dead. My body was fighting something they couldn’t identify. It was putting up a good fight, too. I would crave food in large quantities, I was chugging fluids like you wouldn’t believe, I was falling asleep at the drop of a hat.
Everyone thought they knew what I had. They tested for flu, mono, strep, hepatitis, lyme, auto-immune diseases, and God knows what else. They did 6 blood tests in a matter of weeks, sent me for an abdominal ultra sound all while they kept poking and prodding . Nothing came back positive. The only thing they thought was that my liver was over-functioning by a huge margin.
My symptoms continued to morph and change. I was slurring words, having difficulty with coordination, incapable of walking up the stairs without my husband tapping which leg to move. My brain would stop mid sentence and I was flipping words as well as forgetting definitions and spelling.
By my third doctor, I was told I could have had viral meningitis and could now be suffering from post concussion disorder given my multiple concussions and car accidents. He sent me home with medicine that helped me concentrate, focus, and get through my work day. It allowed me to finish out the school year, but each day I still would struggle once the medication wore off in the afternoon.
I couldn’t speak at times. The words were there, but they wouldn’t come out. When I could speak it took a lot of concentration and effort. It felt like I had weights in my mouth that needed to be lifted to form each sound. Sometimes what I was absolutely nonsense syllables. I couldn’t think at times. I would forget how to use my phone and stare at it. My mind felt like the pinwheel spinning on a computer screen. Loading, Loading, Loading, for hours at a time. Sometimes I would never remember what it was I was trying to do.
It’s hard to put into words how strange it was. My mind and body were fighting something and there I was stuck waiting for it all to just go away. In the meantime I fell at work, I struggled to communicate with others, and had to go home when my fever would peak along with dizziness and confusion.
A month after starting the miracle medicine, I had an allergic reaction to it. I had to stop and then the symptoms of withdrawal began. Agita, Irritability, Anxiety, Depression. The only positive was that my brain fog started to lift and I began to feel emotions more intensely. It felt like someone turned on all of the lights in the room after sitting in the dark for months. Overwhelmed with emotions and information, I found it difficult to process things.
All of this led to a all sorts of testing as the neurologist dismissed my previous doctor’s diagnosis.
After an MRI, EEG, MRAs on both my head and neck, they determined there was nothing wrong with the structures of my brain or nervous system. I sought neuromuscular and healing types of massage therapy and over the last month I have again made enormous strides.
I can walk up stairs without tripping or falling. My nerve pain, headaches, joint pain, and swelling have mostly subsided. I can finally read and concentrate for longer than 20 minute stretches without being completely exhausted afterwards and I continue to feel more and more myself.
It was a grueling journey, terrifying most of the time and yet here I am, still kicking it. Though my brain still gets confused with words and my body sometimes still feels a bit weak and jittery, I am so glad to say something I never thought I’d be able to…
I’m back and I am so grateful to be almost rid of whatever this insane illness is.
Note: Any grammatical errors and missing words within this post are a result of my continuing battle with my illness. I am choosing to leave them even if I find them later on another read through after publishing. I revise and edit multiple times, but sometimes I miss things still. I’d like to leave them as a way of accepting where I am in my recovery.