Quality of life…how do you define that?

Quality of life…how do you define that?

A few months ago, during a consultation with a Neurosurgeon, I was asked if my Hydrocephalus was affecting my quality of life.  I got the impression that if my answer to this question was “Yes” I might have been facing surgery.  I hadn’t been asked this before so it took me a bit by surprise.  I sat and thought about it for a while and answered hesitantly “No…”  I wasn’t completely sure what this question meant.  And, if it did mean surgery, I really did not want to go through that again.  However, in that lies the dilemma for me.  I want help and know that it quite possibly means more surgery for me but, I don’t want to have to go through it all again.  It’s just such a roller coaster time on this Hydro journey that it leaves me feeling “damned if I do…damned if I don’t“.

Quality of life for someone who doesn’t have Hydrocephalus would admittedly be worlds apart from someone living with the condition. That’s a no-brainer…

I thought about it some more afterwards and think it was a bit of an unfair question on the part of the surgeon.  I think he should have listened to my symptoms in what I had to say and then make an educated decision based on his own experience.  I didn’t feel that I had enough “evidence” in my symptoms to warrant another operation especially not after that question.  How could I possibly gauge what a good quality of life would be when I can’t even remember the last time I felt good all the time?  So it leads me to these conclusions:

  • If feeling nauseous every day is acceptable…then I’m fine.
  • If feeling like my head is spinning out of control for whatever reason most days…then I’m fine.
  • If, at the first sign of a headache, I go into complete combat mode in preparation of the enemy is considered OK…then I’m fine.
  • If my mood drops almost on a daily basis and I feel run down all the time but this is still considered OK…then I’m fine.
  • If living in fear and being on constant alert because I know my ETV can close is OK…then I’m fine.
  • If going to a friends place and not being able to enjoy a glass or two of wine just to relax, because I know the mother of all headaches I’ll have in the morning is coming, due to my Hydrocephalus…then I’m fine.
  • If feeling unsociable most times because all I want to do is curl up into a ball and sleep as my body has become a glutton for slumber…then I’m fine.
  • If cleaning up and vacuuming makes me feel sick to the point where I want to vomit, but don’t…then I’m fine.
  • If feeling like I’m treading water constantly to remain a functioning part of society because my kids need me to provide for them…then I’m fine.
  • If struggling almost on a daily basis with anything big or small, at some point during my day, makes no difference…then I’m fine.
  • Knowing that my memory, which has been the biggest challenge for me, is not what it should be for someone my age.  Though it does frustrate the living daylights out of me, I’ve come to accept it…so I’m fine.
  • Putting in about 3 times more effort into anything at any given time…is fine because at least I get where I need to be in the end.

This list could go on and on but I think you get the picture.

On the plus side, my headaches have eased up and I do WHATEVER it takes to curb my triggers.  And, that’s fine…so I guess my quality of life has become a list of things that are fine.  Undefined and undetermined, without judgement from me and disregarded if and when it comes from others.

I wonder what would have happened had I said my quality of life is being affected.  It might be seen as stupid to have said “Yes” and not opting for the attention my body required at the time.  But having to face another brain operation… let’s just say that does not make me feel fine.

Inevitably, my quality of life has become accepting the things I cannot change and living with the things that I can…even when it’s NOT fine.

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

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