Darkness

When I came home on December 11th (also James' birthday), I was still and would remain for a few weeks somewhat out of it. At the time, I blamed the Ativan and the Fentanyl I had been put on while I slept for 3 days. In hindsight, I think it was more likely my body adjusting to the very large cocktail of anticonvulsants I now took daily.

I immediately went out on disability. I had to avoid raising my heart rate or blood pressure for fear of another bleed. I couldn't work, couldn't horse back ride, couldn't sled with Jackie in the snow. I also didn't drink on my anticonvulsants. I also had to go off my birth control and got my period again!

I would go into the bathroom by our bedroom and turn on the fan or run the water and sob, but I didn't want anyone to hear me. I would ask the universe to go back and just give me my old life back. I realized later there is no going back. I had a chaperone every day at our house. I couldn't drive. Everyone, including Jackie, had to be told what a seizure looked like and to call 911 immediately.

I wore a medical bracelet. I spent most of my days fighting to get my short term disability, scheduling appointments or going to neurologists/neurosurgeons, or getting tests for those appointments.

Several people recommended I go to therapy, but I didn't. My Mom said I was depressed- I'm sure I was.

I slept constantly. I would get disoriented at times from the meds so in the evenings once I took them I would stay upstairs in our bedroom so I didn't have to navigate the stairs. Jackie got used to Mom skipping the bedtime routine because I was too tired or I had already taken my meds.

I remember that I would check my email and after 30 minutes I would be so exhausted from the reading and the typing that I would have to go take a nap.

It is also very disheartening feeling that the body I knew and trusted for 40 years, I felt like I couldn't trust anymore that it had betrayed me. I had no control.