Howdy Hydrocephalus

Understanding my unique gyroscope


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Life on the Unit

The fish tank

The fish tank

I completed a 3.5 hour neurospsych test in a quiet uniterrupted environment on Monday. It took me 24 hours to recover physically and mentally. I can not even begin to explain how exhausted I was. To put it simply it felt like I had run a marathon (not all desk work) and a truck ran me over! The results were to be expected that I do have some difficulties with short term memory, visual processing, thinking processing speed etc….but overall within the normal range for testing. The kicker was that it was stated that testing was done in a quiet environment so that the results so that they do no reflect real world situations and to expect that all hell may fall apart when put back into real world scenarios. That with continued time and therapy, I should be able to learn strategies to adapt. (oh goody! can’t wait) The psych indicated that when I plan to start my masters we may want to test again to determine what accomodations may need to be in place for me prior to starting. Mmmmm not to sure if I want to drop $25,000 when I am not bringing in any income. I was planning on working and completing my masters at the same time to offset cost. (I am not going to think about this at the moment – it hurts my head! I will focus on getting better first)

So what happens when you are guest on the unit. Predictable routine happens. We wake up, get ready, have our medicine and eat breakfast. We get to choose our meals for the next day at breakfast and the fun part is that we may not get or remember what we picked so meals each day can be a surprise. We are all scheduled in to a vareity of groups and therapies with intermingled breaks.

Every day I am scheduled to go to the gym where we are working on getting my right side strength back. I have physio where they work on my right side coordination and getting the head to body part connection quicker. In Speech, I am working on techniques to help with my stutter which includes many steps and coordination. Occupational therapy works on my audio attention, and my being able to take in all the wonderful changing environments and stimulation. It helps with problem solving and gosh knows what else. I also have recreation where I sometimes work on my sorting my photography drive, make cards and some other weird art piece. I also participate in the physical recreation in the gym where if I am concentrating on something my visual inattention is noticeable. I jumped like crazy when I didn’t see a basket ball bounce right near me.

Each session is 30 minutes long. I know it doesn’t sound like much and I even looked at like – Whaaaat are you kidding me, but after 30 minutes of physical or mental I get wiped and have to lie down for a rest and usually get a headache. Yup a rest. I never used to have to do that! I still can not get over the fact that my body and mind still act like they are possessed by some dumb/slow lazy person which was totally opposite of how I acted before. I miss being super quick at talking, thinking, decision making, switching tasks, multitasking, living life etc…. I like how I could only put in minimal effort get my school done with good grades and work done to spend more time playing or creating and being with family. Now it seems that I need to put in great effort to understand what I am reading, coordinating, putting together my thoughts and doing things. I know that I must be patient and that I am only four months into recovery and will see improvement upwards of two years, but I guess I am still missing the old me. I have read that people with a brain injury do go through a grieving process – denial, sadness, anger, acceptance (don’t know the order). I know I am at the acceptance and moving forward phase and it is okay to miss the old me. I am learning news skills for me to adapt and to move forward. Just wish I could learn them quicker so I could gain back some control so I can begin to plot a new direction.

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All I want for christmas

In the dining lounge this morning, there is the television blaring with news of more funerals for the kids and adults who were shot down last week. No one here really has paid attention to what has happened. There have been a few discussions about gun control but most, I think, like myself know that it has happened, but are currently being greedy and focussing on ourselves and on getting better.

Two of my table mates who both have had strokes begin to talk about what they want for christmas from Santa. It is funny because the one person begins by saying “All I want for christmas is my left arm again” The person next to him says the same thing. Both have seen improvement in the arms in a week so they are hoping by Christmas they will have their arms back. This is the place where you can see amazing improvement in people in short amounts of time. It blows my mind! I am in awe of all the people who are re-learning way more than what I have to re-learn. The people in here are the true warriors. They have so many things to re-learn that they use to do unconsciously, but now have to make conscious efforts until they each step becomes unconscious again.

The breakfast conversation made my morning because I was still wiped from three hours of neuro psychological testing yesterday. I slept after the test, got up for dinner, then watched a bit of a movie then slept all night. Today both my eyes are giving me grief – fuzzy vision (not just my right eye); I feel still tired and have a monster of a headache. Moral of the story is that when I think too hard or do too much physical I get slammed preety bad.

At least my CT scan from yesterday showed my ventricles have shrunk back down a bit which is good! That I am just experiencing a bit of chronic pain from my head. I hate the word chronic pain; people think you are a faker when that word is used.

It is awesome that I am learning about what my brain has disconnected for my speech. Apparently, my muscles in my lips need to be re-taught how to work and release. So words that begin with W, F, V, B etc. I have been hitting too hard and my lips get tense so I stutter or hit the letter too hard. I have been learning how to breath the speak and now I am learning how to soften the words. It is amazing to see and hear it work. I know that Wy noticed the way I was saying his name, but not too many other people. It probably always sound like I was angry at him, but now I am working on saying Wy’s name properly! I am learning new stuff everyday. It is just being able to remember and coorinate it all so the techniques will work.

So what do I want for Christmas…is that everyone stay safe and healthy so they do not have to visit this place too!


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Unhinged

I began a little blue pill a little three weeks ago so I could sleep at night.  I began at 1 pill (10mg) and then went up to 2 pills (20mg).  Within the first six days I had some crazy thoughts and weird thoughts.  I had not been depressed up to this point so I just thought it was probably a side effect.  I also know that I began to feel unmotivated and zombie like – just numb. Well then last week I had the emotional roller coaster. The medication was working that I was not waking up for long periods; only up for fleeting moments and the  headaches still happened, but man I was becoming unhinged.  I am not ever usually an emotional mess like this.  Of course I am super anxious.  So my medication has shifted to a yellow and white capsule.  We will if see I don’t feel like a tired unomotivated zombie.  Even with a sleeping pill last night I slept from 1030 to 2 then up and it is now almost 7am.  I would rather feel normal and not sleep than sleep and feel like an out of control zombie. Of course I am stressed…I would like to drive again.  Driving would make my life easier and help me determine if I could be an environmental field person.  I am uncertain if I want to teach again.  I know I successfully did the two hour bugs session three grade one classes.  I also know at near the end I was tired!  There is so much I need to learn to be able to teach again.  I know that my job at the college is not there anymore.  I was only part-time and so there is no going back unless there is another opening.  But who knows maybe I can convince them they need a field trip/lab prep tech or something. Yes…I am anxious; money situation of course, my disability EI ends next week.  I hate not being in control of not knowing a final outcome.  I know everyone says it takes time!  I realize that but sometimes hearing that is not enough.

It was a touch and go situation with letting me go home for the weekend.  Geez…I was taking the shuttle.  I had already been at home prior to being in the unit.  So after being told yes, then being told no, then being told yes, then being told no, then finally yes.  I was relieved because money had already been spent on a ticket.

So my homework to myself this weekend is to not be anxious and relax begin to meditate and  to practice walking with my right foot and repeat heal toe heal toe!  I think I will bring my computer down to speech because I can show how much more easily it is for me to get my point across by typing than writing with pencil.  My god.  I was asked a question and had to write down an answer with a pencil.  Super easy right – ummm…my writing looked worst than wyatts and I wrote a sentence about the same grade level.   Crazy.  I am chalking it all up to bad meds and stress!

When I get home Chris is trying to be nice because he says he likes that I am slower now with walking and talking.  Before I would walk and talk to fast.  I really don’t know how I feel about that.  If ya didn’t like me before with all my high energy and go-go-go why did ya stick around.  Were you waiting for the slow mode to kick in.  Thanks for the compliment – I think?!

Guess who I got the best welcome home reception from – yup you guessed it Echo, the dog!  Ahhh the boys missed me maybe a little.  But I know them, they will glom onto daddy because daddy does all the fun stuff.  I finally did get hug and cuddle from Wy.  D had a meltdown and was sent to his room.  After he came out he fell asleep on my lap.  So it took a bit but mommyy was missed after all.  Today will be a fun day.  We are taking the bus to Ruckers, a very noisy and crazy lights place with video games for a birthday party.  Yay!  I will be bringing ear plugs and sun glasses (if needed) and I really don’t give a shit what people think!

 


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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.