Howdy Hydrocephalus

Understanding my unique gyroscope


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Gas Guzzler

January has been literarlly a pharmaceutical blur – yes we are still trying to get meds right to control the 24hr headaches. I tried to write and began a couple posts but then of course forgot about them and moved on with laundry or cleaning the bathroom until today where I promised myself I would get something down electronically before I completely forget about this month. I was sprung from Unit 58 on January 10th and officially an inpatient graduate. I was happy to leave because I know that there so many people waiting to participate in the program. I am referred out for Occupational Therapy to help with Executive functions and Speech Therapy to help keep my stutter under control It has been an interesting few weeks re-adjusting to life on the outside with my newfound realization of my brain injury and all the quirks that go along with it.

What I have found out in the last little while is that when the TV is going; three adults talking; the kids playing; dryer spinning; fan whirring; chairs scraping; creaking floors; trucks starting outside; dog shuffling – I still hear it all – it is all noise all at once that is hard to filter. I wrote a post called super powers. Yup didn`t realize it was a part of my injured nogg`n. Because of this lack of filtering, I am distracted easy and not pay attention (sorry folks – the smile and nod thing doesn`t mean I actually “heard“ ya). When I am overloaded I do not realized that my tone of talking sound like I am irritated or angry sounding even when I don`t think I am. I do recognize body language but may be confused that your body language showed something different than what I said or intended to say but it may have come out wrong.

I am learning that the damn visual disturbances are still there. I thought they were gone because I didn`t leave the house for 1.5 weeks and other than right-sided fuzziness and popping words when reading, I thought it was all under control. Then went to Wy`s school. I know we like to think of all school-aged kids as stars but to see them walk by with star trailing is not so cool and a little disappointing.

I have learned that when I get too much going on, I may not be reading correctly or understanding what I am reading without knowing it thus the kids passport fiasco. Usually I am the one in the household who does all the filling out of forms and paperwork. So I filled out the passports; had Chris sign; waited forty minutes to hand them in only to find that I had filled them out incorrectly in many areas of the forms. I am and was so embarrassed. Prior to injury I was extremely anal about forms and filling them out correctly. Now I know that Chris needs to overlook and proof my forms. He just assumed like me they were filled out correctly.

I was handed some homework at the end of a speech session and looked at the forms and couldn`t understand what I had to do. My therapist explained what was needed. I smiled and nodded and went home. After resting at home, I looked at the homework again and thought it was somewhat easy. So I am somewhat there when I am rested and in a distraction free environment. Everyday I still feel very dumb compared to where I was before. I haven`t accepted that I am not as smart as what I once was – just yet – that will come with time especially as I learn strategies in re-defining my life. The fortunate thing is that my writing is relatively intact and I can communicate more freely via typing than any other way.

I also do not know how to set boundaries when doing things. I will go full bore at something and then pay the price with complete lack of functioning and fatigue for 24-48 hours. Everyone preaches “pace yourself“ but to me there that is a foreign idea and I can`t relate. I think I will be working on this. This falls into the same category as when I didn`t realize that anything was really wrong with me.

It hasn`t just be hard on me; it has been really painful for Chris and the kids as well. We all didn`t sign up for this but we are all trying to pave a new road and make it work. There have been a lot of misunderstandings, frustration, stress and unknown especially when we are trying to have a “normal“ family life. We are learning patience, understanding and forgiveness. The TBI guide or Alberta Initiative Brain Injury Guide are two good thing to help us all understand what is going on.

I like to think of brain healthy people as hybrid cars – where the fuel they use is energy efficient. It can run all your unconscious brain functions, physical functions, cognitive functions all at once without depleting in any of the main areas. It is a well-run machine that picks up speed quick and corners well. I, on the other hand, am a gas guzzler. I am not so efficient with my fuel and energy placement. It doesn’t matter if it is cognitive or physical, it all takes the same amount energy and the energy gets depleted quick. I am always needing to re-fuel up with rest or else I have my fourways on at the side of the highway waiting for a tow truck. I may not be quick to speed up and a little rough at cornering but at least I am still getting from A to B!

Here is a great video explaining abit about a mild TBI. It helps me explain how I am feeling.

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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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One List at a Time

Last week I had my first Occupational Therapy (OT) Appointment.  The person who I am assigned to asked me lots and lots of questions.  As soon I was done my session, I went to the main lobby of the hospital and fell asleep on the semi-circle couch while I waited for my ride.  When I got home, I wrote down on my phone the questions, so I could to go through in my head again – I really wasn’t confident if I answered truthfully.  For example, I was asked if I cooked by memory.  Yes of course I always do.  Yup but before surgery I was forgetting key ingredents in recipies that I have known since I was seven.  After surgery…what have I really cooked…I can’t remember.  Pretty easy stuff…put meat in slow cooker and leave it, frozen pizza, chicken nuggets (have to follow the directions on boxes).  I did realize that I forgot how to make gravy.  So I guess I will be using All Recipes or my favorite cookbooks (if I can find them) regularily now. My homework was to make a list of all the steps needed to get the kids to school on time without anyone helping.  So I made a list and the test run still had me missing stuff like getting the kids to brush their teeth and wash their faces.

This week I went in for my OT session and we went through the list again.  We broke it into two lists – things to do the night before and things to do in the morning.  Test run this morning went okay and we ended up getting everyone to school on time without forgetting anything with the help of my dad.  My downfall was that I was not prepared for the rain and in the process of trying to find a pair of jeans for me to put on, I became distracted and started taking out all my summer clothes to put away for the season.  Can you say slightly ADD – yup that is me at the moment and it all normal and will hopefully go away as the brain heals.  I have gotten an Iphone app called VoCal for my Iphone 4.  I love that it will give me a text reminder and then give me voice reminders every minute until I acknowledge the reminder.  This will help me a lot when I am on my own.

I am learning to not get frustrated with me and just accept that it will take time for my brain to heal itself.  In the meantime, I am relearning all the once unconscious steps that were in my life One List at at Time.


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Re-Discovering

I have been re-discovering the joy of photographing things again with my “big gun” Canon camera. I never stopped taking pictures, but used my iphone or point & shoot rather than take out the “big gun” for anything.  It was waaaaaaay to much effort to organize myself to take the camera out…I wasn’t feeling creative, inspired, energetic or anything and that was a big change for me.  I used to have a system for editing my images for stock and I was forgetting steps and couldn’t remember how to edit nicely anymore.

It has been so much  fun getting out and shooting again.  With bringing out the “big gun” and all  it’s accessories, I am re-learning how the darn thing works again. I am also taking the time to re-learn to edit my images again.  I may begin to upload for stock again, but right now I am enjoying just playing with my images and when I am ready will need to re-learn how I did my stock editing steps.

With all this additional physical and creative energy I discovered the wall numerous times this week where I would get very tired, dizzy, sick to stomach, sore head grumpy person.  I really do know now what the brain/body disconnect is.  My brain keeps yelling at me that I am great, wonderful, perfect; and that I can do anything and everything.  My body then follows through with physical stuff until my body just decides to quit without any notice.  This lack of forewarning had me down for the count from anywhere from two days this week to a few hours of power resting.

I know that I will not be able to shoot pictures right away after my dad leaves so I am trying now.  After my dad leaves I will be focussing on getting some sort of routine that I can remember.  Iknow that I can not hole up in the room to edit pictures because the kids would run rampant and I can’t do more than one thing at once.  I can only focus on one thing so I would lose track of them.  I am also hoping the fatigue will go away with time!  Each week I get better and better.  With the help of Occupational Therapy at the hospital my memory, concentration, retention and understanding will get better and better.