Howdy Hydrocephalus

Understanding my unique gyroscope

The Summer of Milestones

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This summer has been amazing. Because I have been on my pituitary meds and energy medicine for almost a year, I have gained ten pounds, built a little muscle and endurance back.  Because of this I pushed the physical side more than I have since my brain surgery five years ago. 

Last summer I started with some easy flat hikes; paddle boarding more  and just flat easy biking. This year we have not hiked much but instead took to my old passion mountain biking. It was a spur of the moment when I bought my new to me Marin at a local bike swap. We went there to get the Wy, D & Mr. C new to them bikes.  We started the boys on flat trails, then logging roads and then to some trail riding. Well it was a test on my patience because every ride there would be one frustrated boy in tears because he fell one too many times or sacked themselves from not listening to me about riding the trail off their seats. Being the mean mom I am, I would say falling is apart of the experience. The bruises and cuts are stories to tell. I would say they are building balance and muscles that will help for hockey. We did 20km flat rides but shorter trail rides but often there teary statements of “I am never riding a bike again” to only ask to go biking the next day. Wy gave me the best compliment the other day. He called me a ” mountain bike expert”. I laughed and said “I am far from an expert. The last 50km ride I did was a long long time ago.” But It made my day and said “thanks”.

The biggest milestone took place when my brother, R-man and his two kidlets, C & M visited.  When I lived in the Kootenays many moons ago I spent a winter travelling 50km each way to learn how to kayak in the Nelson, BC swimming pool at night. I kayaked until I moved to Manning, Alberta. Six years ago, I bought a white water kayak again. I think I only used a few times before I was too sick to. Then the spring after my surgery I liquidated all my fun stuff I couldn’t do anymore; camera, studio equipment, kayak, TKD equipment, running shoes, cruise vest, soil probe, and identification books for work. I kept my Giant & golf clubs.

 Last summer we wanted to go white water rafting but we ran out of time. So after we were all together I called Canyon Raft Company located in Fernie, BC. I booked us all. I showed the kids pics and when I saw the looks of terror on two of their faces, I said that the pics were taken at higher water levels. We were rafting at low water levels knowing that I was telling a small fib. 

So we drive to Fernie Alpine Resort where we are picked up on the bus. The driver, who is one of the two owners, let us know about some Great Lakes nearby and hiking. In Elko, we got to see where there is a 40ft waterfall where some very experienced kayakers like to drop off of only at low water because even then it is dangerous. It was beautiful. We then drove to our starting point.

But before we got into the rafts, we got our gear on, wetsuit, helmet & paddle for most but not for someone like me that has body regulation issues. When I get cold my fingers and toes can turn white or purple. But I was prepared. I brought my swimsuit, on top of that I had my thin one piece thin outfit for paddle boarding, next the wetsuit, then water socks, I also grabbed a spray jacket and eye Glass band. We received a lecture about the gear and our hike down to the boats.

The hike down was beautiful. Sport sandals or shoes that can get wet mandatory!!!

At the bottom we met all the guides and the photographer. We received a very thorough safety briefing and then were broken into our groups for the paddle. Our guide has been in Canada six years. She left Melbourne for the mountains – water in summer and powder in winter. Along with us is the owner of the company and the seven of us. M is too nervous to paddle so she rides the trip but gives us all the best facial expressions that we see in later photographs. I am grateful to have an extra adult because I am not too sure how the three boys in the back are going to do….mmm…slack it and watch the adults work…I am almost 100% sure. R-man and me are in the front. With Mr. C behind me.  Once settled with the group photo taken we are off first down the river.  Whoa…hold it….we are the last boat in the line. I picked it because I thought we would be last….oh but no..here we go with the first two sets of Rapids back to back. All I remember is one is called something about marbles.

It is a weird feeling. Trying to coordinate paddling with R-man while trying to keep an eye ahead and listen to our guide’s directions. All I could think of was am I dong this right, trying to have myself breathe to calm down and not get overwhelmed and not to get distracted by the scenery or water.  Around the bend we go and wow the adrenaline is kicking. Once we finished we relax and wait for the other three boats. We have two fall out from one of the three boats but everyone is safe and put back in. During our waiting my right side is going all twitchy and my right arm feels weak. The thoughts that go through my head are “oh no…am I done. We just started. Can I paddle the entire  What is going on. Am I dehydrated?” I have some water and it was the right thing to have. Then we forward paddle into our third rapid…something about a shoe. 

 Here we are heading into the third set. We hit a rock with a jar and all stay in.  I go ass over tea kettle after we hit a second rock right when I am leaning out to paddle a wave. My paddle stays with me in a death grip. Mr. C see me go in and reaches for me and he goes in. When I fell out I couldn’t see a thing. I wanted to swim to boat but then was told to put feet up and cruise and that is what I did. I flew. It was awesome, you can see they had to throw the rope float bag at me. While Mr. C got to hang onto the outside of boat. I grabbed C’s paddle as it floated by me. When I get in, we are all laughing. Wy said he flew into C, C lost a paddle and D was flying and was heading for the water but was saved by our amazing guides. What a rush!!!Mr. C goes up front for the rest of the trip and we go have more rafting fun….brrrr. I am working so hard that I am still keeping warm. Win for me!!!

We make it through the rapids to an amazing float section with pristine coloured water. Then we have lunch. After lunch before we hit the canyon we get to try our hand at cliff jumping. There are three choices low, medium and high jumps. Of course Wy & C start the trend with the medium jump.  Mr. C does the large jump, I do the medium jump & M does the small jump.

Here they are jumping.then all our guides show us how it is really done.After this we hit the canyon with a waterfall, lots of whitewater, surfing a hole…during lunch I got really cold with purple fingers. I ended up lying on warm roaches trying to stop my teeth chattering. I ended up putting on the spray jacket for rest of trip, except cliff jumping and it saved me. there was so many much action that everyone was hooting, hollering, screaming and laughing.  We had to avoid a big rock by turning and hitting a rapid. It was the best rapid of the day….okay hard to choose favourites but I think the adults in the group agreed with this.D raises his arms in glory. We missed the rock. But the best fun for Wy, D & M was….riding the bull. When we hit the landing place, I barely could get out of Raft, my coordination, balance from my whacked internal gyroscope was completely off. I was shaky and didn’t clue how dehydrated that I had become because I was cold, I didn’t drink. Mr. C helps me get dressed in dry clothes by holding up towels. I was riding on a high that I had completed this milestone. I knew that I had used up all my spoons and would need recovery time but it was so worth it. We will be doing this every year from now on.

I was not the only one beat. R-man & Mr. C were sore; the kidlets fell asleep on bus ride and in car ride to Coleman. 

Mr. C always gives me crap that I push myself too hard. I say that if I didn’t push myself as hard as I do, I would still be shuffling my right foot and having a right hand that accidentally drops or throws things. I know self care is mandatory but so is also living and having fun.

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Order amongst the chaos

I am not a New Years resolution type person. I am a person that is trying everyday to be a better person to myself, family, friends and community.

Pre-injury I was not a person who liked “routine”. I liked change, the unknown and diversity. I saw “routine” as a word for same old…same old nothing new type of life. I didn’t recognize how much of a “routine” I did have until recently. What type of routines did I have? The unconscious type for daily activities such as my 30 step morning routine that I had to relearn. The unconscious actions of thinking in logical steps. The ease of reading maps, driving, just knowing what to do and doing it. The unconscious reading and understanding what is printed on the page.

I miss having those unconscious routines. My life is currently chaos. Energy wasted on not making a decision. For example, I know I have stuff to do but where or how to start. It seems all so overwhelming. I can’t even think of all the different types of unconscious routines that un-brain injured people do but there are lots.

I use my smart phone calendar to document and keep appointments. I am getting better at knowing where my phone is, that my phone ringer is on, and remembering my phone.

I just have trouble re-learning those unconscious routines. When driving I have to consciously think keep your eyes on the road…keep eyes on the road…keep in the lane. That is a lot of thinking and energy just for something so small as driving. Figuring out logical steps in getting dinner ready & done all at the same time is still a work in progress.

I am getting a person to come into the house to help me create a daily routine. I need to re-establish strategies. I will start out great with strategies and then forget what the strategies were and I will end up chaos again & again. Maybe I will actually be able to meal plan rather than sit there with my mind void of any recipes. So I then go to those amazing websites with thousands and thousand recipes and I spend time searching and searching and searching unable to make up my mind. So meal planning that should take 20 minutes including grocery list can take me hours or even the entire week and I only get three dinners put on the list. This is not a very time or energy effective way to live. It is a very frustrating

I need to get new routines & strategies past my short term memory and into the unconscious memory & muscle memory stages so I can re-direct my energy into other areas of my recovery. I am aiming for a kick butt recovery year so I can move forward into the work force again.

I am focussing on organization, creativity, meditation & being in the moment (mindfulness).

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Holiday Havic

Phewww! thank goodness January 2 is here and we can all carry on with the new year. Christmas was good; we scaled down on the chaos and gifts. We hosted a potluck christmas dinner. New Years was interesting.

When I got home from the unit, the next morning I got up and my right leg was like it had a mind of its own. My leg felt like wood and even my right arm was tingling. I wandered around knowing I had many things to do before Christmas, but not knowing where to start. I finally kick started everything and told my leg to cooperate as I know – it knows how to walk. I may have been unaware before the leg brain thing was disconnected but I was not going to let my right leg win. I forced it to walk again properly – I was back to walking with my head down and saying “heal toe…heal toe”. Then the leg graciously paid me back by burning/tingling all day & night.

Christmas always has its snafus, like making enough stuffing for four turkeys (okay have enough stuffing for future turkeys in freezer), last minute finding the right Santa gift – Skylanders for Wii (we don’t own a PS3), kid’s temper tantrums, and forgetting to put the turkey in the oven (thank god for internet to see how we could adjust the oven timing/temp). Chris and I pulled it off as a team. Let’s not forget, Kyle, who came to town for Christmas and to see his friends & was rooked into to help out as babysitter (so rest of gifts could be wrapped) and driver (last minute christmas eve morning gift finding exercise so Santa wouldn’t look like a knob). Kyle took it all in with stride. I think he actually like spending time with his waaay younger little brothers. I know Wy & D both loved having him around.

In between christmas and new years I went back to the unit for two days of therapy. I was completely fatigued and still struggling with my right leg being weird. I was walking okay, but still having trouble trying to figure out how to do the hopscotch like movements. I finally got it down – yay! My brain definately preceives things differently and we figured out that I have been leaning to my right an extra 20 pounds so I can get some feeling response in that leg. I love speech now because there was big strides in improvement!!!!!! I finally am getting the breathing and learning to put words together. In the session and when not stressed I do very well but the stutter comes out in full when get excited to stressed still. I am even beginning to sleep with my mouth open – yup that is me your regular mouth breather now! I am still learning to plan what I say or else the stutter comes in. It is so hard to plan what you say when before it was effortless.

My parents flew in to look after the boys so chris can go back to work. My dad has a cold and his ears are plugged so he is basically what I preceive as yelling constantly and doesn’t stop talking at all. My dad always get the boys amped up and they run around screaming like crazy people non-stop all day. My quiet home, my refuge was taken over, there was no downtime, no quiet, no rest for me to be able to recharge.

They see me as who I was. Physically I look the same, but they do not clue in to how much effort it takes to for me to listen, to have a conversation (yes I would rather not talk thank you), pay attention, to filter out noise (constant yelling & idle chatter really do suck the life out of you); live with an almost constant headache that fluctuates with how fatigued I am; To be able to figure out what I want to say is sometimes impossible, as well as, just trying to remember things and participate in life takes way more effort. I know the added people in my house brings in more visual stimulation, noise etc….Right away I noticed I was not focussing and my memory was trashed. I could live with that nothing really important to remember or do anyway.

But the noise was over the top! I would politely say that it is really loud in here, or it was really loud this morning that I heard everyone clearly even with ear plugs in (when I really was holding back – Can you all just shut the fuck up and keep the kids quiet for a bit rather than egging them on to be continuously yelling & screaming). My polite self advocating fell upon deaf ears – we weren’t yelling or you know your dad’s ears are stuffed; so I would escape to my room for a bit. This was looked upon by my dad as being an ungrateful bag – no clue that this was a survival strategy for me not to lose it. My mom was doing a Sudoko puzzle and I tried to have a conversation that I can do them anymore. That I spent six hours doing a puzzle three times and it was wrong. I was told to “practice more”. Yup I am the one with the brain injury and I am thinking “no shit sherlock; where did you park your squad car”. It is not as simple as just practicing more, the strategies have to be relearned so I understand how to to the puzzles and problem solving.

Then my parents bought hats & horns for the kids on new years eve. Well I took a couple of photos & then the annoying horn blowing went on. I escaped to my room. It was 8:00pm. I am exhausted. I have used up every once to concentrate, filter noise and visual stimulus, be polite all day; act like a “normal” person – I was done. Wy threw a pillow at D when he had a horn in his mouth. I was no longer playing nice. The horns were thrown out – my dad was being an ass and I couldn’t get out what I wanted to say so I said that “they could just leave”. Intellectually I know my dad has an undiagnosed brain injury from lack of oxygen from all the heart attacks and quadruple by-pass, and I should be understanding and generally I am but holy hell I am walking on a fine line too especially when my polite self advocating was not heard at all.

So the next morning I woke up and kept my ear plugs in until Chris came home and took me back to the hospital. It was the best thing to do. They could go about their routines like what they consider “normal” people and I was able to be comfortable. No clue that they are so loud that I could hear everything just fine. I only wish that I could have thought of it sooner. Well at least now I have discovered another coping strategy. I also know now that how my parent preceive me will be the norm and most people will not be able to understand what it is like for me. Now I understand why people always talk about brain injuries being “invisible injuries”; about how clueless most people act; how the idea of faking injurie comes to light. Yikes – I now know that I need to learn to self-advocate better or else getting back into the “real” world will be a bumpy ride.