Wednesday, August 26, 2015

The Hidden Cost of Chronic Pain

If you look up hydrocephalus in the encyclopedia(assuming people still have one) or on the internet, you will see pretty much the same thing. That it's a blockage in the flow of cerebrospinal fluid potentially caused by what could be hundreds of different things(csf is gross by the way just thought I would let you know). It says that if left untreated, it WILL lead to mental retardation, growth in skull size until you are unable to sit up because of the sheer size of your head, and ultimately DEATH. But then ironically after hitting you with those seemingly insurmountably terrible odds, it says but there is a treatment. But then it does it again. It says, there is a treatment(HIGH) but then it says, but this treatment is very flawed, and has a 50% risk of failure within 2 years(and FAIL), which will probably lead to many brain surgeries throughout your entire life... What they leave out though, is the fact that with each surgery you become more complicated. Maybe that's understood? I'm not sure, but I can tell you one thing I definitely wasn't expecting to be where I am now 11 years ago when this all started.

Chronic pain has stolen my entire life away from me. Everyone says, "Oh but you go out you have fun" and I don't want to give the wrong idea here, YES I do but everyone who knows me knows I love to plan, and if everything is not predictably picture perfect I freak out. (Which confuses the heck out of me why I love dramas on tv, so many twists and turns but that's a whole other story)I had this entire plan of what I was going to do... And I had to throw it all out of the window when I got to college. Chronic pain has stolen spontaneity; it has stolen the ability to just curl up with a book on a Monday night, I argue with myself, "Kimi if your pain is too bad, you can't turn on the lights, because otherwise your head will pound too bad..." I saw my body go from that of a healthy teenage girl who loved to go on walks with friends, to a girl who still loved to go on walks, but struggled to keep up with friends because her foot hurt too bad, because she had not been wearing her orthotics that her Physical Therapist basically said had to be in her shoes every time her feet hit the ground. Many of you think, Yes this sucks but hasn't it become the  slightest bit predictable now? And the answer is YES it has, but do you think that has lessened the blow? No. I've seen my life in both lights, the healthy, invincible light and the  chronically ill, would rather sleep till 10 than get up at 6 light. And I would be lying if I didn't say I wanted to "smush" them together so I could have both. Don't we all want to do that with some things?

 But it's like I'm straddling an invisible line. On one side is my chronically ill life, and on the other side is my healthy, carefree fun life. Would I like to take what I've learned from both, stick them in a bag and shake it up? Of course... But I can't. I recently went to the pain doctor and got the greatest news ever, she said the two words that every chronic pain patient wants to hear, "You're stable." But as soon as the excitement wore off, the fear set in. "Wait does that mean at some point I won't be  stable anymore"? Will I at some point, down the road, be on that ever familiar path of tweaking medications, becoming ever more tolerant of narcotics, which is my greatest fear? However, the facts are the facts, every surgery I have, makes me infinitely worse (never mind that in the past 10 years I've had 35+), then it's back to the pain doctor where she says the 5 words NO pain patient ever wants to hear, "You are no longer stable". It's like playing Russian Roulette with a drug cocktail. You try it and if it doesn't work you try something else; maybe a higher dose; knowing nothing about what will happen; my  favorite word ever predictability? Gone; having ideas, guesses but those guesses mean absolutely nothing if the guess doesn't work.

We fight. We fight silently, while tears bathe our pillows at night, we don't sleep because we are wracking our brains with "what if''s" or "could have been's."   Every second of every day we are witnessing the ever present betrayal of our bodies. We aren't strong because we woke up and chose to be strong. We are strong because we woke up realized that we have no choice in this matter, we have to keep going, there is no alternative.  But in reality none of that matters at all. All that matters is how you view yourself. Yes others having a semi nice view of you is always a plus but it's really not what you need. You weren't put on this earth to please people, but if you do hey bonus! So just stay with us, be with us. I can't promise you it will be fun, all I can promise you is that it will be worth it. Maybe not today; maybe not tomorrow but someday, it will all be worth it. 

1 comment:

  1. Sorry it took me a while to read this, glad I found it and was able to read it! Thank you Kimi!