Category: writing

It’s the beginning of February. January is now a thing of the past. It was a tough month to get through. I still am hormonal and don’t like it one bit. I never cry unless there is a good reason but lately everything makes me weepy.

February is not a month I enjoy either. It is an anniversary month of my CES, Cauda Equina Syndrome. I got it 12 years ago when I was twenty-five and it has messed up my life since then. (for story see https://midnightdemon.com/2012/12/21/my-ces-story/) I have made progress with it. I can walk without assistance but I need an AFO (ankle foot orthotic) to do so or I pull my muscle in my leg, causing me pain. I can’t stand too long or walk long distances like I used to before CES. And it sucks because I love to walk. Now I’m lucky if I can walk around the corner to Walgreens without feeling fatigued and in pain. I wish I could say that the bowel and bladder aspect is great but they have gotten worse over the years instead of better. I no longer trust farts. I have had too many accidents thinking it was air when in reality it was shit. To many CESers, it’s called Sharts. My bladder leaks when full until it registers that I have to go. I guess me wearing feminine product at this time is a good thing. I don’t have to worry about leaking into my underwear as there is a pad there. I mostly have to worry more when I go out.
The pain of living with CES is horrendous. But since I have been back on my mood stabilizer, the zings, burning, and zaps have been to a minimum. Except my leg pain has been there with it’s own twinges and pain. This is the type of pain that drives me nuts and when it continues longer than twenty-four hours, makes me suicidal. I have a high pain tolerance but after dealing with something painful for more than twenty-four hours it wears you out like the flu. I am on a ton of pain medication from anti-convulsants to gels to narcotics to deal with the pain. This combination seems to be working.
The New England weather also plays its part in driving pain levels through the roof. If the temperature drops or has a high between 20-30 degrees my spine will ache something awful. Yesterday was 50 degrees and today it is supposed to drop to 10 so I know I am going to be feeling it. Right now it’s 30 degrees out but feels like 13. That’s my hometown for you.

I hope this month doesn’t bring the flashbacks of 2001 with it. I really don’t want to go through that again. It was tough the first time around. But you never know with PTSD (post traumatic stress disorder) how you are going to react. You might be fine or you might be a basket case. Your nerves might be on edge all day. Luckily I don’t work where this all happened so it might be easier this year. But you would think that after ten years it wouldn’t affect you but it does. Just like in March I always remember the night I fell apart. Sometimes you are just stuck with the images in your head that you just can’t get out. You get sucked back into the past. And it’s an anxiety provoking experience. But I have learned a thing or two about grounding and staying in the present.

I have a week to try and not think about it. A week of not remember what it was like waiting in the ER, talking with the neurosurgeon resident, neurology resident, and neurology fellow about the seriousness of my condition and need for surgery all on being awake for 36 hours of being in pain and agony and no sleep. But when things were at the worst and it was 4 in the morning, I had enough of being nice guy and wanted to speak to my psychiatrist about being “competent” to sign a consent form for surgery. She explained the story that I had CES and needed surgery and not the three idiots that were standing in front of me. I quickly asked if the surgeon was board certified and found out he/she wasn’t so I said find me someone who is or I am not having the surgery. That’s when they called in a pituitary specialist to do my operation. Luckily I was ok but I developed a staph infection two weeks later and needed another surgery to clean it out. Which meant another week in the hospital. I’m getting anxious writing this so I am going to stop here for now. You have the CES story if you want more on what happened after this.