Howdy Hydrocephalus

Understanding my unique gyroscope


Leave a comment

Back on the writing bandwagon!

images-8It has been an really long time since I have written. I have not fallen off the planet, but have been challenging myself even further. Even though I love to write, there are many other things I have been focussing on such as creating art, graphics, starting a small very part time graphic design and creative life coaching business. I am unable to fit them all into my life at the moment. One day soon I will be able too! It is a goal I am working on.

My life has been changed since September to end of December. I had amazing energy, concentration and steps to move forward. I was able to attend  two craft shows and make for me a lot of goods. Christmas and the New Year were a success. I got everything done for the family, rested & played too! But then January 1st, I woke up with the worst cold ever. From January to now has been an interesting month. I have learned some takeaways about Hydrocephalus that I did not know before. Because of my new knowledge, I have finally decided to work with the Hydro instead of fight it in this case. Fighting it will only make it worse.

So What did I learn? I learned that if there is a stressor on my body like a cold or a completely blocked sinus (with a mass that potentially they think means trip to Foothills again soon) can affect the baseline of your hydrocephalus. So what does this mean.

fb_img_1443293628775My MRI showed that I had amazing flow. I love that my Dr. Sits me down and we look at the images. I love that he explains what I am seeing. He said the grey area where my hole from bottom of 3rd ventricle show cloudy grey. He said that was turbidity. I said “that is to be expected. When flow of fluid has to go from big space down a narrow tube – it speeds up – basic physics…you know my background before all this was science!:”  I almost knocked myself off my chair when this came out of my mouth. I was shocked as shit that my brain just pulled off something that I thought was long gone.  Nope just in hibernation waiting for my neural re-connection.

Distracted Side note Inserted here:

The black hole of my brain injury released some new information. Lately I have been experiencing this more and more…snippets of old knowledge and experiences pop into my head.  I wlll write a blog post of what I can compare this to in hopes that it can help fellow TBIers but their experiences into words.

images-5So my new baseline was how awesome I was doing before feeling cruddy in January. This means that until my stressors on my body…the blocked sinus thingy will continue to put negative stress on my hydrocephalus until it gets addressed. So in the mean time I will experience and increase sleepiness, tripping, falling, dropping (or accidentally throwing items), weird walking stance, numbness, tingling, head pressure, pain, and cognitive decline. I have been having a hard time figuring processes, and steps to getting things done again. Decline in remembering what to do with Adobe Illustrator again. I have been saying the wrong words for things more and more. For example for the last month I have kept telling the boys to put their laundry in the dishwasher.  

images-2You know that gets old quickly when you have two parrots who are like okay and start to put their dirty laundry in the dishwasher. My kids are jokers I say…but when I am stressed mentally with the weird symptoms that have popped up in my life, my sense of humour is greatly diminished. Actually irritability, and anger have popped their dragon heads up again so much that the boys have noticed. They joke that driving with mom is like “beepidty boop boop beeep” with the added family finger.

kitty-fingerI have been reassured that symptoms, although scary will go away once the stressor is fixed.

Let’s hope this happens quick before my control and filter completely disappears and I actually tell off a stranger who is pissing me off.

 


4 Comments

Acceptance

There is a large tribe if TBI/ABI/PCS (Tramautic/Aquired brain injury, post concussion syndrom) on Twitter. We tend to like online social connecting sites becuase when we are feeling like shit, stuck in bed in a dark room these sites may be our only source of connection to the outside world. I remember, I had relied on social site for four months once. I could barely get out of bed without feeling like I would pass out.

6181aee523d4e4937731bfac6e6b48bcThere was this post “How do you cope with TBI/PCS symptoms?” yesterday. Now this may seem to an easy answer for those that are clinical…look it up on the Net and list off…rest, eat healthy, follow your medicine, blah…blah…blah. However “How do you cope with TBI/PCS symptoms” answer is not so simple. It is really a big whoop ass can of worms.

First off people who are “normal” will just say here is a list just follow it and you will get better. These are innocent, well-meaning people who really have not walked this journey before but instead are taught what to say and do.

f118d7a457ea10f91cc29d9648c1df35When you are knee deep on this new life adventure (so much nicer to write than sucky life-long condition) is to grieve. I mean grieve the loss of who you once wore. Believe me this is not easy at all. I am over three years in and I still grieve.  I still get mad and frustrated at where I am that it often clouds how far I have come.

I mean who wouldn’t want their old life back where everything was easy peasy; thoughts swift & quick; anyltical skills and crital thinking intact; planning & organizing there; coordination; strength; energy to work, look after family, have hobbies & social life at a moments notice and above all live pain free…But I am not that person anymore and I accept that I am not that person most of the time.

cf07f453bef187cb4c57a7e706c33b45So we have our pity party for a bit then I mentally kick myself in the ass & my drill sergeant tencacity kicks in. I mentally say suck it up sunshine; usually something about not quitting and other motivational stuff to get me out of a funk. I take responsibility for getting myself out as no one else can except me.

  1. I read motivational pictures & quotes images
  2. I watch motivational videos. Unbroken or Why do We fall
  3. I read Motivation Facebook Group Bright Side or website Elephant Journal
  4. I focus on anxiety reducing activities such as breathing. (I do alot of this)
  5. I remember I how I have come. The challenges that I have overcome.
  6. I focus on the positive. It really becomes easy after a while. For example, the biggest positive is that I get to become a new me. I am learning what I like and don’t like. I get to experience things for the first time that were old hat for me. Trying foods to see if I like or dislike etc….
  7. I move forward.
  8. But above all I am grateful. I am grateful to re-write my life. I am grateful that I have learned alot about myself with the journey. I am grateful that I am here living. I am grateful that I have found who my true supports are. I am grateful for a new approach to living. I am grateful to explore each day with new perspective (literally & figuratively). I am grateful that my kids are hopefully learning about compassion and empathy (no zombie comments lately – LOL) I am greateful allowing myself to fall & get back up again. I am grateful that I am able to express myself via writing and art (verbally and body language not so much). I am grateful for the opportunity to start fresh each day.

So really to “cope” is not simple there are many emotional and mental steps. There is a lot of time needed. And I didn’t even include all the physical, organization, planning steps that you learn via OT (occupational therapy) that help you function. This is a vast black hole of a subject that just can’t be thrown around in a black & white fashion. It is more of a comfortable grey blanket.

 


2 Comments

Roller Coaster Ride

Well it has been almost three weeks of me having a bag packed with my clothes & not driving.  Chris phoned the Brain Injury clinic and left a message for the Doc.  He then spoke with the Unit 58 where they told him that “Yes I am always number 1 on the list, but because I have been discharged that I always get bumped because of someone inhouse.  That the person in house is that is moved to the open bed on the unit doesn’t always need the servcices of the unit but just needs a bed.”  Basically – Chris was given the honest truth that there is no hope in hell of getting a bed on  the unit with a possibility but no guarantee of getting a bed at during Christmas.  Chris was pissed with that because why go when all regular staff is on holidays.  I was livid.  My reaction was over the top!  I swore like crazy because I felt that I was lied to, given promises and put on hold for no reason.  Not to worry tho because we had an appointment with a local agency that afternoon.

We go to that appointment and I am blown away about how un professional, uncaring and lack of resouces it has.  I am sure it is great for people who need the basic but my opinion is that there is little they offer for people like me (labelled high functioning).  I asked about what they offer – stuff for memory and distraction & physical.  The rest nothing.  Asked about driving assessment.  She said that if I didn’t have a letter stating not to drive I could & that if we want to pay $300 for a driving assessment we could.  I asked about career stuff.  I told her that I put my Masters degree on hold I told her I am at a loss.  I was on the path of teaching more than one course at the college, did environmental stuff but at this point I have the shittiest short term memory, can’t understand more than one person talking at a time and if I get stressed then my words come out all funny.  I know that I can drive fine, but for short distances and at night I shouldn’t drive.  She told me that I could go to the community employment services for help.  I told her that I went there when I moved here five years ago and that they told me I was overqualified for the services they provide.  I asked if they had anytthing else.  No go to CES.  I am on my last two weeks of EI disability.  I don’t know what I can do for work – I am at a loss.  Yes – perfect job would be right now – no flickering lights, no big windows, no more than 45 minutes computer at one time, no more than one person talking at once,  not too many people, or quiet people, clear directions and time lines, someone to help with the process etc…Yes I know I look “normal” but my brain is still a disfunctional.  She told me I could go get help from welfare.  WTF!  Man talk about robot responses.  Are there no other resources.  Did ya hear a word I said.  Basically they offer some stuff, but the rest I would have to pay for myself.  So this agency offers me three one hour sessions per week for….time.  WTF that’s it – I am feeling like this place is so bottom of the barrel.  Plus they will not take the test that the doc has already done.  They need to re-test me again.  Now I know it…this agency is a justifier for money.

I walked out of there mystified.  Chris shook his head & thought they were unprofessional.  There was some other chick in the room with arms and legs crossed – never introduced – why the hell she was there is a mystery to me.

So we go home.  I am & was an emotional wreck.  I have been one to always be quick to anger but super quick to get over it.  I couldn’t let go.  I had thoughts of what the hell am I to do.  Do I need to fall and wack my head or take a bottle of pills to be put in the hospital.  – Yes I know they were not rational thoughts.  I was not suicidal but I was going over what I would need to do to get admitted to hospital.  Then I was going over in my head  my lost identity when I first had kids – yup my old boss was right the Mommy train puts a halt to any career movement.  And then have lost it again recently when I was just starting to get off the mommy train and see some potential for good career progress.  I was thinking that realistically with no income coming in, I was worth more than alive.  Moneywise it is true.  Being not well is expensive.  We have spent a lot of money with very little return.   No one get your panties in a knot – I am not planning on harming myself in any way.  These are just some of the not so rational thoughts that I had to work through last night.

Needless to say I didn’t sleep well.  I couldn’t let anything go!  I get up this morning and unpack the bag and get the kids ready for school.  I drive the kids to school and on the way home I get a phone call from the Doc saying that they have a bed for me for today.  I told her we will take it, but will not get there until closer to 4 or 5.  I said that I had a meeting yesterday with the local agency and that they do not offer much.  She agreed and I think that is why she may have pushed for a bed. I phone chris and leave lots of messages.  So we will pick up D from preschool at noon and pull Wy from class the same time and hit the road.  Chris says I should have unpacked my bag two weeks ago.  I have no idea what to expect.  I know my expectations are high.  I want to get fixed!  I know that it may never happen and will have to grieve my old self, and learn what my new self has to offer.  I just hope that I can be provided some positive direction.

I am drained, and tired and stunned!  All I can say is get me off this roller coaster – I am not liking the highs and lows.

 


5 Comments

Snap

I don’t know why I snap.  Apparantly it is all I am really good at today.  I feel bad when I do.  I feel that I am failing as a parent.  So I am feeling pressure in my head and it hurts.  I mean my head always hurts, but you get used to it.  I guess I shouldn’t have lifted the sink and stuff myself, as it increased the pressure.  I know people offered to help but being a stubborn ass I, of course, declined any help.

The kids are hungry.  I told them I will get a loaf of bread from the freezer and will make them sandwiches once it thaws out.  A minute later – “I am hungry”.  I say “Soon, the loaf a bread is thawing out”.  This goes on and on every thirty seconds until I snap. I yell “Why can’t you listen.  I said the loaf of bread is thawing out…Jesus!”  Now my son has his head coverd and is cowering.  I immediately appologize.

So I am now hiding out upstairs away from them because they are annoying the shit out of me today and I can’t handle their screaming, yelling and behaviour in general.  I am sure they can’t handle mine either.  I think my kids are going to be messed up.