My Illness

I know I talk about my “before” and “after.” I thought I would share what that means.

In October of 2012 something strange happened to me. In late September, I had been pretty sick with what I thought was just the flu followed by two weeks of irritation and anger, followed by a 48 hour period of just not being tired, so I stayed awake, and then, I went to sleep – for a month. Okay, not literally, but I might have well as been. No one seems to know what happened, but for the first part of the ordeal there were skills I lost. I couldn’t read – I could understand the individual words, but not the sentences. I couldn’t use scissors. I spent much of the month in bed or on the couch.

After about a month of this, my husband begged me to just go to a doctor. I did and they put me on an antidepressant and suggested I pursue this either psychologically or neurologically. It took several months to get into a psychiatrist and, by that time, I was a mess. It had progressed to not being able to talk on the phone. I couldn’t be around people. This was followed by sleeping in our closet and not being able to go out in public. I couldn’t sit still and I couldn’t get my arms or legs to stop violently shaking.

In the psychiatrist’s office she asked me a few questions and said that what I was experiencing was most certainly not psychological. She put me on an anti-seizure drug and sent me to see a neurologist. This was the end of April. He sent me for every test known to man (in my state it sure felt that way) and chastised me for waiting six months. He found nothing and sent me to a neuropsychiatrist for more testing. His guess? A series of small strokes (with a name I don’t remember) that don’t show up on tests or micro seizures. Neither sounds appealing, am I right? The anti seizure medication worked like a miracle. I started it on a Friday and by Tuesday I felt the most “normal” I had in six months. However, I was still having a ton of anxiety and spending a fair amount of time sleeping – about eighteen hours a day.

With the diagnosis of “I’m not sure” from every specialist, I was done chasing to name this and wanted to just get on with my life, which was easier said than done. It took me a solid year to be able to get back some semblance of “normal.” I had become hypersensitive to sound, movement, and the worst was visual. The first time I managed to go grocery shopping by myself, it took two hours, which I white knuckled my way through and then, the cashier talked to me, I couldn’t figure out the money, and I sat in the parking lot for forty-five minutes sobbing because I was so overwhelmed. I also went five months without being able to go to church because it was such sensory overload.

Since that first year, there have been ups and downs. It is an uncomfortable, daily roller coaster. I have to find an uneasy balance in what I do. I tried to work, but it became completely overwhelming and some days I just need to sleep. Some days getting ready for the day feels like twenty-seven things, instead of just one, and I can’t make it to the end of the list (I went eighteen months without blow drying my hair). I am slowly learning balance and to be patient with myself and my calm, quiet life.

So, the before? I was co-owner and operations manager for two businesses. I was road cycling thirty to fifty miles a week, running, and taking the best physical care of myself ever. Boom! I felt like my feet were nailed to the floor at a full-out run and I came to an instant stop. My life was completely changed and now, an additional diagnosis has been added – that of bipolar disorder. It’s a slow road that I have to maintain and I am trying every day to live this life in a full and productive way, but let me tell you, my life is nothing like it was and probably never will be again and most days, that feels like a very long and hard life sentence.