May 25, 2013

What sucks about living after meningitis?

Let's see, it's been 20 months since I contracted bacterial meningitis.  Did you know that 1 in 10 die from bacterial meningitis?  And, if not treated within the first seven days, completely fatal?  And, that those who live from it can have after effects such as deafness, acquired brain damage, personality changes, debilitating migraines, and more?

I had bacterial meningitis in September 2011. I lived, so that's good right?  I don't always feel it is good.

I deal with migraines 66% of the time, faithfully figuring the percentage of days lost to migraines monthly.  I also have acquired brain damage.  I have trouble remembering things, dates, times, meals, to take my medications, and other things.  I used to be great with my memory.  My attention is harder to shift than it used to be, so I get stuck on thinking the same thoughts for a while.

Nausea, headaches, confusion, and memory problems, are the after effects of acquired brain damage.  Since my meninges continue to stay inflamed, the entire brain is being squeezed causing these continuing symptoms.  I know I used to be better, but there was no definitive test needed before the meningitis hit.

According to WebMD, 15% of folks with mild brain injury have continuing problems.  I'm in that 15%, sucks to be me, huh?

The WebMD article, lists a variety of cognitive, physical, behavioral, and perceptual changes from the brain damage.

The cognitive ones I have are increased difficulty in expressing myself, processing information is slower, it's harder for me to understand others (especially when the migraines are really bad), and I know I've forgotten more than I should.

Physical changes I've gone through are the persistent migraines, mental fatigue sets in a lot faster, physical fatigue sets in a lot faster, sensitivity to bright sun light and florescent lights, and sleep disorder.

Perceptual changes I experience are a loss for the sense of time passing, disorders of smell, more sensitive to pain, and changes in my vision.

Behavioral changes I've experienced are irritiability and increased impatience, reduced tolerance for stress, sluggishness, and denial of disability.

I'm usually good about accepting what is and not being able to go back and change it.

We don't even know how I got so sick.  I had none of the five traditional causes, lyme disease, ticks, aids/hiv, iv drug use or anything else.  That's almost the most frustrating part of this.

Dealing with those changes listed above take a lot of work. Migraines 66% of the time prevent me from having a job outside the family.  I still get frustrated because I am still stuck with the thoughts that my identity is tied up in working and being a contributing member of society.

I hate things like this.  But, today, I woke angry at the meningitis and ashamed at how much I've hidden from folks.  Pretending that I've got it all together when I really don't.  I just get through the hard times as best I can.

Life has to turn out better some how, some when, right?