Howdy Hydrocephalus

Understanding my unique gyroscope


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Warning Evil Villain Neurological Strikes Again!

images (6)I was all prepared to wait another week then give you a great update on my personal chaos but then something important came up and I am utilizing my high dis-tractability to write about this or else I will then overthink about it and it will consume me all day until I get it out.  So here goes…this is what has been on my mind and in my heart creating me to grief since yesterday.

My youngest son wanted to play ice hockey this year. It is his first time and we had player evaluations yesterday. My oldest son’s coach from last year son was in the same evaluation group. This made my youngest son happy to sort of know a couple boys on the ice. We were looking forward to the usual casual catching up about summers etc….

However, when the Mr. S and his family walked in, I noticed the gait, constricted body movement,  grimace of pain and slight facial difference. I said “it looks like you are in pain…did you hurt yourself?” Mr. S responded “I lost a battle with a mosquito.”

All I could think was Whaaaattttttt….the……F. This is a load of crap. He is so young to be hit so bad. He is a good guy…his family is good people. Why can’t this shit happen to bad people like the asshole who stole a truck last week, caused two different high speed accidents in two different intersections and takes an innocent 18 year old’s life; then decides he wants to try to take the Police Officer’s gun in the hospital. Those are the assholes that deserve this shit not a person who works, volunteers his time and is decent. I always shake my head as to why this happens.

So apparently Mr. S is one of three people who contracted West Nile this year in Alberta. And of the three “fortunate” people who were bit by the special mosquitoes, he of course he drew the lucky wild card and was hit extremely hard with both severe physical and neurological effects.  Everyone is hopeful that the effects are temporary and not long lasting or permanent. I know I am hoping there is not long term effects. But when anything affects the central nervous system you never know what will happen. I know neurological re-wiring does happen and continues to happen with me but it is a very slow and I admit frustrating process.

images (22)I think it hits too close to home and I know the enormous amount of grief, guilt and loss person that is happening to Mr. S. I still don’t understand the family perspective entirely. But I can see the pain, sadness, uncertainty, trying to hold it together without breaking down and trying to be positive in Mrs. S eyes. I can see that the kids will grieve, be angry at times and frustrated, but the love will always be there. I see the fear, uncertainty and the ominous overbearing unknowing that lay ahead. I see the hope for continued recovery.

images (3)I also wonder if they are provided with all the resources the community has. I know we weren’t. We were not giving all the other stuff other than prescriptions, occupational or physical therapy. There is more out there but information seems to always get left behind.

  1. Get into a chronic pain management clinic rather than just Neuro or GP
  2. Occupational therapy runs out…Brain Injury Clinic can help with memory, distraction, daily activities with both an one on one sessions at BIRS and workers who can come into your home.
  3.  Mental Health in Provincial Building has people you can talk to. By yourself, couple, kids and family sessions available. This is a big stressor event and we are never taught how to hand it. Everyone assumes we can “Just Deal”. When you lose your identity quickly depression and anxiety crop up and almost go hand and hand.
  4. Medicine Hat Hospital Recreation programs are amazing and help you explore new or adapted leisure and recreations options. They have great programs such as walking, art, and others but I forget what.
  5. The Healthy Living program that is run in a building near the hospital is a great program. It was a safe place to work on building coordination, strength, and fitness.
  6. The YMCA program has an adapted fitness coordinator
  7. Community Futures Disability Entrepreneurship Program for those who are finding new career directions in life.
  8. MH Adaptive Sport is here in Med Hat with amazing people. It is for people of all abilities not just wheelchairs which I thought.images (8)

That is all I can think of for now but I am sure I have missed some very important groups that I have used and continue to use.

But one of the biggest things that have made a positive impact in my life has and is laughter.  Humour and joking is one way to break the ice with those who are uncomfortable when they see you for first time in a while, as well as with family on a daily basis. Humour and laughter just naturally cycled in being positivity in our lives. From that it spurred gratitude and mindfulness…of course I am continually working on the the mindfulness.  But as a dear friend of mine who is a two time cancer survivor and now officially conquered the big C always says “Any day I am turfside up is a great day” This so true for all of us as we take the crazy journey through life. We all often get wrapped up in the fast pace and stress of getting it all done we never really take a look around to appreciate the simple things.

images (2)I have always hated mosquitoes, black flies, deer flies and horse flies especially when working in a black spruce stand where you are basically a free diner with a neon sign that says open for business…free blood. You have to walk around looking like an alien in a bug suit because Deet is just an appetizer for those hunger little buggers. So I had to look up what West Nile was again because it has been a while and my mind of course is a sieve. So West Nile is a mosquito borne disease that usually doesn’t cause and symptoms or some very mild flu-like symptoms. More information can be found here. But the virus can spread to your Central Nervous System and create long-term havoc. There are aggressive treatments but there are still no stats on recovery rates which really sucks. Prevention is wearing bug spray and screens…limited which is even more suckier. I hate wearing bug spray and screens are only as effective as the amount of doors opening and closing or how many cat claw holes you have. I know we can not live in a bubble but really it just not enough.

Well thanks for letting me ramble with the keyboard. Hope everyone has a wonderful day! Remember take time to slow down, breath, feel the breeze and sun on your face and cre8te something for you!

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Speedy summer

july2015kelly 115I have been having a really busy summer. My house has been a whirlwind of boys running inside, outside and upside down! There have been video games, television on constantly, talking, tablet playing, hockey, trampolining, swimming and that all going on in my visual/hearing area. It has been a very sense stimulating/over stimulating summer. However, so far I have not only survived, but thrived. Meaning, I haven’t completely melted down yet…okay was a little edgy at times when I was getting over tired. Now I am trying to figure out a new nap time.  It has not been structured, but more of a free for all, as I can’t seem to find an early morning rising time. Lately, it had been 9:30 am and that throws everything off.

I have been feeling progressively fatigued including more breakthrough pain for the last couple of weeks. I am wondering if my Botox has begun to wear off and the Nabilone can’t handle that all by itself. I really hope that it is just that simple. We find out on July 27 when I go to Calgary to get another set of shots. I am definately not getting anything done that I wanted to. I keep trying to do a to do list, but keep forgetting and then spend my morning functioning time trying to remember what I needed to do. It isn’t bad going with the flow. Just the boys and I will have one heck of a time at the end of August trying to get a schedule going again. Showers..dinner…studying…bed..whaaaaaat! I can hear it now. Maybe they will be so tired, they will like having a routine.

july2015kelly 094We have had some summer weather that has made me feel a little yucky still but overall a million times better than before. Because my visual, and hearing stimulation is continually being challenged this summer, It has affected my thinking and processing. I have no idea what happens to my day, but it does slip by quite quickly. I am beginning to feel like a walking zombie again but that could be because I have been getting the RV ready to go again. It is so hard to try and do. It takes me about ten days and then I still forget stuff. I have a list and everything but that doesn’t help if I forget to use it. Here’s to a wonderful summer free from pain and crazy brain quirks to you!


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I Survived Spring Break


On Easter Sunday, my friend, her two children, me and my two kids took off to Cypress Hills Resort at Cypress Hills Interprovincial park Saskatchewan side. We rented a three bedroom cabin for approximately $130/night. But even better was the buy two nights and get the third free.  Sweet! great trip for us budget minded moms. First off, it was the longest I had driven and I was a little nervous. It was not only the nap before leaving; coffee and sugar that made the ride smooth, but also the road conditions. In Medicine Hat we woke up to to an inch or two of snow, but in the Hills there was a record snow fall of 1.5 feet of snow.

Before leaving, I quickly packed winter gear and sleds. Yup I am writing about my journey with a brain injury and all my photos show sledding without helmets. Let’s just say that the brain injury got in the way and I forgot some important stuff. No way was I going to get beat up by four kids so they went sledding on our third and fourth days there. There first two were very chilly but fun. The snow was super soft, melting quickly and we were the only people there sledding.

It was a great time, we played card games, charades, drew, read, and the kids played minecraft on their tablets. Us mommies on mommy time drank copious amounts of wine. Yes I have a brain injury, but I am allowed to splurge on negative brain influencing behaviours. I re-discovered white wine. It has been forever since I drank white wine.

We went on lots of walks as a group. The kids played outside without us. I had my two hour nap every day! We had a great time, but on our fourth day, I thought I packed up all my stuff in the vehicle, I forgot food in the fridge and cupboard. Oops! Then instead of driving home right away, I went on the hunt for moose to take pictures. Got a couple shots of deer but that moose always evades me until summer.

The drive home was bad. It took everything I got to keep my attention on the road. I was exhausted but knew that Chris was at home off work for the next six days so I would be able to rest up and recover. However, I was wrong about the recovery time. Chris’ mom was having urgent health issues that required him to fly to Newfoundland right away. So he left Thursday. The boys had a sleep over on Thursday night; Friday I took the boys to the skatepark. Saturday & Sunday I really do not remember much except Chris was back Sunday night exhausted 13,000km in a few days was a lot. Monday I don’t remember much. Tuesday, I went to my son’s grade three class and did a presentation on photography composition. Then they all got to go around and take photos with their Ipads. I hit the wall after that. My right side was all tingly, numb with imaginary fire ants marching everywhere. My right eye and perception started acting funny. My usual head pressure/pain intensified with the feeling of a kitchen butcher knife at my surgery site and an ice pick through my right eye. The pain is intense that you no longer feel it but just feel sick to your stomach.

It is now Thursday and I am feeling a tad better, but not really. I have been getting up in the morning getting kids to school then going back to bed. I have been using my oils, but nothing else. I need to start up my vitamins again. I just got out of bed at 1:15 feeling like I should write, but now I am going to crawl back to bed for one more hour.

I would not give up my spring break for anything. I had fun. I pushed my TBI boundaries and Yes I will be most likely paying the price for the next week; I am glad I did.


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Sweet Success

IMG_7669Okay after I got out of the hospital in September, Chris and I started to look for a new house to live in. We finally found one and were able to spend two months packing. Last week we moved to our new house and love it. Chris and I had loan of a trailer and did a couple of loads so we could spend our first night in the house. The next day the movers came and after that it was a blur. Oh and at the same time I also rented studio space at the Hive Artist Hub.

I really tried to make an effort to pace myself. I would only do a little unpacking a day – except the first day (too much). I have been napping 1.5 hours a day and going to bed early 8:30pm but not falling asleep until after 10pm. I really tried to remember to eat and drink – especially after the first night. We don’t have the swim spa at moment – it is drained, and winterized until spring when we can get a new cement pad put in, so I have been trying to put in steps per day which includes walking the dogs. I know that 10,000 steps is too much for me so I go what I can. I have also been doing meditation and trying to be mindful of what I am feeling. I am trying to be aware. I didn’t go to brain injury relearning sessions. I missed all my alarms as half the time I had no idea where my phone was. Finally all action caught up to me today.

Wyatt this morning was complaining that he didn’t like the new house in the mornings because it was all too rushed. I apologized and said “I don’t have a morning routine here yet and I am so very tired this morning”. I woke up and could barely function and I had to deal with Donovan who was sick to his stomach as well. Brain fog, word finding, thinking straight, perception and vision, making sense, decision making and sleeping all day.  I hit the wall.

It may sound bad that I hit the wall – I knew it was coming, but just didn’t know when. When I talked to Chris he really was surprised I lasted as long as I did. He thought I would have been toast long ago. So in fact, this whole crazy busy week has turned into a wonderful success. My energy, strength, endurance and brain function lasted longer than it has in 2.5 years. I know I am getting better and better. I am still inconsistent in a lot of things, but I am seeing improvement.

It will take us months to organize the house, but we will slowly work on it. It has been the best move as there are so many boys for my boys to play with. I am truly grateful we too the giant leap to move. The next important thing is to get the studio space functional. I am at a loss of how to move forward (brain overload) and Chris will come help me tomorrow.

Next step is to get a new morning routine down pat again. That will ease the stress level for not only me, but for the boys as well.


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New Me…old me…who – TBI & the great identity crisis.

I am fortunate to be a part of a group brain injury wellness program. I am glad there is finally one in the community but I am a little saddened that it is only seven weeks long. It is weird that there is such a short time limit on it when brain injury recovery is such a turtle of a beast and recovery moves slowly.

There was a lecture on personality changes after brain injury. I think my overall personality is much the same, but there are some noticeable things that did change. I do still reflect, but no longer focus on who the old me is. I am still however trying to get used to the new me. The upside is that I get to start over and really I am only three years into the new me so it really hasn’t been to long for me to adapt. However, it is all not rainbows and happy parties, nor is it a pity party either. It is just plain weird and that’s it. It is uncharted territory as I don’t know if this is how I will be forever, or will neuroplasitiy take over and re-route neural activity over time.

Somethings that I miss about the old me are:
The energy I had,
always on the go & doing something,
going out and enjoying it,
my quick wit and sense of humour,
enjoying people,
being easy going,
love to have fun,
and playing with my kids.

The new me tends to:
Get frustrated easy,
embarassed and humiliated (less now, but I did forget how to tie my shoes, now more so if I fall),
go from patient to snapping if done too much and are overwhelmed,
stares off when can’t keep up with conversation or distracted,
don’t show much enthusiasm,
will not think things through & impulse control,
lack a sense of humour – don’t get jokes or sarcasm,
slower uptake on significance of conversation,
awareness of limitations,
seem serious because I am concentrating so hard,
feel that everything I do is for rehab purposes and forget what fun is,
and have a hard time playing with my kids.

Today, I watched the Lego Movie for what seemed like the first time. Although I know that the kids have seen it so many times that I have lost count. I don’t know if I zoned, missed legitimately, or slept through all the other times, but this time I thought the movie was funny. After the boys wanted to play Lego. I didn’t really want to but did. We build a couple things and then the boys got involved in another movie.

I continue to try to re-learn coping skills, acceptance and re-adjustment. I only hope that we as a family is muddling our way through it in a decent way.

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After Brain Injury: The Dark side of personality change part one

After Brain injury: The dark side of personality change part 2

Helping Children Cope with a brain injured family member


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A Mother’s Plea

This is a story I found on the Forbes site and I thought I would re-post. In the United States they have Hydro walks for fundraising and education. I am not too sure what happens here in Canada. Most people look at me with a quizzical look when I say that I have hydrocephalus.

A Mother’s Plea

Heres to hoping to spread the word and find better ways to deal with this condition.

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Fight or Flight

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Okay I have gotten better with dealing with stress management after my diffused brain injury. I have done counselling, I have learned many techniques such as visualization, meditation, breathing and using essential oils. This techniques did not come naturally, I had to re-create new pathways in my brain to do things. It was like telling my right leg – heel then toe when teaching my right leg not to be lazy and start walking normally again. I had to tell myself over and over again to breath in & make a big stomach then breath out through mouth.

I remember telling the doctor that normally I didn’t feel anxious unless I started to become overwhelmed with too much noise, movement or visual stimulation. However I didn’t even clue in that my anxiety was really bad until recently when I it finally it clicked that my heart pounding and racing when I would sit still or lie down was actually anxiety and the wires in my head were still criss-crossed. My body has a hard time understanding the “fight or flight” response to stress. It appears to alway be kicked in to high gear and ready to either fly or fight. So everytime I have lie down I have to let my body relax and it can take upwards of an hour or visualization, oils and structured breathing.

When coping with stress, it takes a lot of mental energy in order to recognise symptoms, create strategies to cope and remember techniques for coping. My brain injury impacts my ability to do all all at once. Often there is a delay and I don’t even realize until later. So even though I have come far, I may still be a little quirky to all you normal people out there

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I do not do well with confrontation. I am collaborator. My processing and uptake speed is slower so I can’t necesarily understand everything or gauge the situation approppriately. If I am tired, distracted, in pain, I will be distracted and not get the whole picture. I may be just in my comfortable space of smile & nod & look like I am all there…I have become a great actress over time. My speech therapist would catch me on this – the glazed over deer in headlights type of thing and say that it was rude to fake paying attention. Oh well – rude or not it is one of my coping mechanisms.

A few weeks ago I was in a room with some people who I thought were acting rude. There was name calling and other things. I didn’t say anything because my mind went blank. I just sank down and typed on my phone. I put a comment on Facebook that was an observation and didn’t include names. I didn’t even know the people’s names. I sort of regretted posting my comment until the person ambushed me outside a public building.

It started about a comment about my headband. I didn’t recognize the person and happily told the person about where I got my headband until the person told me they looked me up on Facebook (creepy) and if my comment was about him or her. I said yes it was. Then the person proceeded to ask if I was going to tell the principal. (what…we are not elementary kids). My heart raced, and I rambled on. I couldn’t stop talking. I was overwhelmed, scared and stressed out. I thought i was going to pass out. I rambled on about how it there are issues they should be brought up to staff and not left to stew.

I ended up going home and forgot to tell Chris about it for two days. When i did he got angry. I told him that my anxiety was shooting through the roof every time I opened the door to that public building. My body was acting like it didn’t belong to me – no control. I am not angry at the person. I think the person was having a bad day. There person seemed nice. I have been working on regaining control of my body wiring again. It will get there. I can not believe how wussie i feel. My physical overreaction is unnerving. I don’t like the feeling of fast pounding heart beats where you can hear your pulse in your head. God is not like I am perfect or never lose it…just ask the kids about mean mommy who yells. I tend to usually just threaten that statement and it works, but sometimes a loud voice can get you where you want to be too. Chris knows when I have done too much and I may be losing and tells me I should go lie down. It is true, I tend to lose it if I have used up all my energy and my cognitive/coping/survival skills are forgotten or threshold goes down.

So generally i try to be positive, proactive, and use my energy wisely into boosting behaviour instead of suckage behaviour.

I am trying to take a less stressful approach at life; to laugh more, frown less and treat people as I would like to be treated. I like the radiance of positive energy and try not to let negative energy drag me down. Sometimes it is so hard and at the end of the day when I have used up everything to appear/act normal it is my family who sees me struggling. i need to put them first so they do not get the short end of the energy stick. I promise to try!

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