Howdy Hydrocephalus

Understanding my unique gyroscope


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Limbo

I just love hanging out in limbo especially since I am not supposed to drive.  I have had to rely on wonderful friends, Sara, for getting Wy to school and TKD.  I did drive once to get Wy to a b-day party and boom instant head pain.  I think it is a disconnect between brain and visual reception. We went out for dinner.  I could hear the fajitas sizzling from across the restaurant.  Then there was the grating noise of sweeping of a broken glass at the bar.  It was crazy.  I was wiped after that and had the worst case of insomnia that night.

It has been a hard week. The medication makes me feel really tired and out of it in the morning, but was still waking at night. Following directions, upped meds last night and I did sleep with only fleeting periods of waking but still felt like a truck hit me in the morning.

I have also struggled with feeling down and completely non-motivated.  I think not having the freedom of just getting in the car and going really affected me.  I know that I could take the bus…yup I could…but haven’t talked myself into doing it yet.  It would take two buses to get the boys to school.  Mmmm…still need to work myself up for that one! D & I did go out for walks, even on the cold winter afternoons, but we mostly just hung out and did nothing. I think I played army and baked cookies.

I haven’t been on the computer very much.  Today has been the most and I can feel it already.  Need to get family christmas pics edited, christmas newsletter and some long overdue blog posts done.

I am told that a bed will open up this week.  I really hope a bed opens up quickly so I get everything started.  I will then have a better idea of what I can do or not do at the moment, the reasons for getting tired and maybe some idea what all my newfound quirks are.  I need to have all the assessments to figure out if I can go back to my old job or re-structure a new career path. Having little strategies is what pisses me off the most.  Yes I know I can hang out and be a hermit but really is that productive.  Some days I feel yes that is and others not so much. Here’s hoping getting in this week so I don’t have to be in the hospital for Christamas.

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Committed to being Committed

I had my appointment at the Brain Injury Clinic at Foothills hospital yesterday.  It was quite the experience.  I met an amazing social working and doctor.  I was asked lots of questions and had to do some tests.  I was told to come with a list of the weird things that have been happening to me.

They asked about how I was before I began to feel bad – Healthy & fit – no medications.  How I felt before surgery and how I felt after surgery.  This appointment was long.   I felt comfortable to go over what I have been experiencing:

  • Head hurts if I drive too much (which isn’t anywhere outside of town compared to my 600km days)
  • Head hurts if flickering indoor lights or sunshine
  • Head hurts if I am thinking too hard (I know sounds silly but so true)
  • Head hurts if I am on computer too long or watch certain television shows (I am my own worst enemy with the computer)
  • I have issues with noise
  • I have issues with reading and understanding directions/technical
  • I am a little slow on the uptake with understanding and reading
  • I can be super tired and go to sleep easily  to wake up suddenly for one to four hours every night since surgery
  • I have itchy skin
  • Of course the swiss cheese like memory stuff that is very erratic and scattered
  • and on bad days I still get a tingle numb face patch around my right eye and cheek

Phew…that was a long and sounds like a somewhat whiny sounding list.  I was expected to be judged and told I was crazy because I look physically the same as before (minus the muscles plus the added pudge from lack of activity), but instead was told that was in the normal range to have these symptoms for having what the Doc calls a “major brain surgery”…mmmm…I am confused, I thought it was a relatively minor procedure.  I still think it was considering what I saw on the acute neuro ward.

After the interview stage the Doctor wanted to do a neurological assessment.  I knew a Mocha was coming and I felt confident I would do pretty good.  Okay I did pretty good on the naming the animals, knowing where I was,  naming things that begin with an F…started off slow but dredged up some forestry terms and recovered.  I did great on a couple others then it went downhill quickly with subtracting from 100 and recalling the damn five words I was to remember.  Okay I sucked that up as I am still recovering, but really thought I would do better.

Next came the physical stuff -easy peasy right!  Or so I thought.  I really didn’t have a clue that my balance was wonky until I had to stand with feet together and eyes closed.  Then it was really embarrassing to look at the doctor as she had to explain more than once a simple task I was to do.  I mean this stuff should come easily or so it used to.

So after a very humbling experience and feeling a lot stupid, because I was never like this.  I am faced with the unknown of where my future may be.

The Doc gave Chris and I some options to help me on the fastrack back to where I was.   I agreed to take a little blue pill that when in higher doses is an anti-depressant but in smaller doses the side effect helps with headaches and helps you sleep.  We also committed to have me go to Unit 58 for two weeks of inpatient rehabilitation.  All I know is that some time next week, the unit will call with a check in time for my next new adventure.

The weird thing is I am more anxious about this than the ETV surgery.  I knew that the surgery would have a great outcome, but no one can tell me what the rehab will do.  But I will never say no to  a new challenge. Plus they said to pack my bag like I was going on vacation…yes…that’s what I will keep telling myself…a two week vacation.


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Brain Rest

Well last week, I successfully worked rest into the schedule.  Yup – three out of four in the house got the flu really bad.  Chris ended up looking after the kidlets so I ended up just having an iffy day of not feeling right instead of the full-out flu.  I was on clean up and laundry duty instead of kid puking all night duty. So when the household is down and out; I slowed down too!  The week was filled with rest among the sickness!  With some brain R&R, I noticed that I was remembering more and feeling totally on the ball with everything.  My head didn’t hurt as much as well too!

On Saturday we were all finally better so we went to our first family movie together – Wreck it Ralph.  This was my first 3D movie. It was a little loud in parts – especially the commercials in the beginning (deafening).  There were a couple of the scenes that appeared fast moving and was really surreal for me to watch.  I enjoyed the movie and I especially enjoyed hanging out with the family unit.  But when I got home, I didn’t realize how tired I was and I all I wanted to do was sleep.  Can you say – Overstimulation – my processor was overloaded!  We went to a friend’s house for dinner the next day and I think my brain still hadn’t recovered from the movie and me  swinging at the playground earlier that day.  My head hurt, when I talked the words were in my head but they weren’t coming out easily or I was forgetting things again. I was feeling disconnected!

All that progress and it so easily took a big step back when my brain was overstimulated.  Who would have thought.  My body wasn’t tired, but the brain was.  There is this crazy  disconnect between my brain & body; and Brain within brain for me to get a message at times.  It is like the brain is no longer in the loop to tell me it’s limits until it is too late.  But will that stop me from life – hell no!  I just have to figure out where and when to take the downtime to recover to feel normal.  I also need to prepare myself when we go out to visit so I have enough rest before and after.

In 2011 I had participated with a group of photographers on Facebook to create your own album cover.  I submitted Road to Relaxation. So fitting as this is a learning experience to really come to terms with the word “Relaxation”; to throw out the my misconception that “Relaxation” means you are lazy or procrastinating; to embrace that “Relaxation” now is not an option but is required for me to allow my brain its extra recovery time so I can function normally.  All I need to remember to heed my own words!