Quality of Life

Living with hydrocephalus can really alter your quality of life.  At this point in time, I feel like I have no quality of life.  Since I am over-draining and have negative pressure in my head I can only stand for short periods of time, I have blurry vision often, and dizziness.  I have to lay flat to even out the pressure.  I will be having my 25th surgery in the next couple of months.  (Since that is a huge milestone for me I have plans to celebrate the 25th surgery.  Stay turned for details later!)  My surgeon wants me to take some time to heal before we go back into the operating room again.  But I can't wait much longer.

Since my health has been an issue steadily for the past three years I feel like it has affected my relationship with my son.  We used to be so close and he was such a mama's boy.  But now I am physically unable to care for him the way that I used to.  We don't spend as much quality time together.  Lately I have been trying to do activities with him where I can still lay down like playing cards or drawing together, etc.  But it's just not the same because he and we used to be so active together.  Now he says that daddy takes care of him not me.  That just kills me to hear him say that because I have been a stay at home mom since he was born. 

Just this past weekend we decided to go somewhere on super bowl Sunday because we are not football fans.  We went to our state capital of Olympia.  We toured the capital building and then took our son to a children's museum.  I was in so much pain that I had to sit down the whole time.  My son kept coming over to tell me how amazing the museum was and he even filmed a few things on my camera so I could also see it.  It was so sweet that he wanted to include me in his joy but it made me sad that I couldn't physically participate in the activities with him.  Honestly I felt lonely just sitting there watching everyone else have fun.

I've always tried not to let hydrocephalus bring me down and still live my life.  Sometimes I force myself to still do things even though I am hurting.  But sometimes it's just too much and I have to decline.  We have had to cancel many activities in the past few years.  It breaks my heart that my husband often can't take a vacation because of me.  Whenever I bring that up he assures me that he loves me and that he knew what he was getting into before he married me.  But it still makes me feel horrible.

In the short time that I was in therapy, my neuropsychologist used to tell me that it was really important for me to do things that I enjoyed to help with the stress of brain surgery.  Everyone who truly knows me knows how much I love music.  So since I can't really do anything physically I listen to music constantly.  When Pandora is not playing on the television  I have one of my I-Pods playing.  My son and husband are getting a little tired of my station on Pandora so I try to limit playing that to when they aren't home.  But they understand that it is therapeutic for me.

I don't want to go through another surgery so soon but I am hopeful that maybe it will return my quality of life.  I want to be able to stand up so I can go hiking with the family, go dancing, and see some live music.  Somehow I have to work through the guilt I feel for having this condition and how it affects my family.  I didn't ask for it or cause it so it's not my fault but I can't help but feel terrible about it.  But first and foremost I want to be able to enjoy my life again.  So this is going to be my 25 and still alive year!  I just have to remind myself that I am strong enough to do this again but it's okay to acknowledge that it's still hard on all of us.  We never know what to expect after these surgeries anymore.  I just hope that this is the end for a long time.

Friends Don't Let Friends be Constipated

I don't know about you but I have a love/hate relationship with pain pills.  Yes they help me sleep and take away pain temporarily but they can really slow down the digestive system.  Constipation can be a serious problem.  As all hydrocephalics know, we shouldn't be struggling to push because it can increase intracranial pressure.

When a friend of mine needed a shunt revision this past summer I did what any good friend would do.  I gave her laxatives in the care package I made for her because friends don't let friends be constipated.  After all we need both the brain and digestive tract flowing freely.

In October of 2014, I had another revision after having two revisions over the summer.  A couple of weeks after that surgery I started feeling intense pain right below my ribs.  My primary care physician determined that I had an impacted colon from all the pain pills I had been on.  He instructed me to stop the pain pills (which I was SO not ready for) and try over the counter products to release the blockage.  He also wanted me to increase fluids and exercise.  That is easier said than done after three brain surgeries in four months. 

Luckily the blockage did release after a couple more weeks of horrific pain.  I wanted to take pain pills so badly but that is what got me into that mess in the first place.  So I increased fiber, water, and started walking around the neighborhood while dealing with the pain of having a huge incision on my head.  The most amazing thing about this all this was that I had my friend calling me often, checking to see if I was staying on top of the laxatives.  Why you ask?  Because friends don't let friends be constipated!

If you have an impending surgery I strongly suggest increasing fiber, water, take laxatives, and walk as much as possible.  You don't want an impacted colon or ruptured intestine.  Also make sure you have a friend that loves you enough to help with your digestive health.