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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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.

 


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I’m Back

Wow this summer has been one wild ride. My pain levels have been managed with my new med mix. This left me with having energy but with a brain with racing thoughts, low attention and a go-go-go never stop type until you drop type of mentality.

So I just let everything go and enjoyed just being able to actually be a apart of life a lot more. I had a fun summer with the boys. We had no routine, schedule or things planned other than our trip to Vancouver Island.

The boys ran crazy; they were a part of their own wild thing type of clan. I have no idea how much they showered (if any); when or what they ate (probably mostly junk food); how many hours of video gaming (The gaming machine did not overheat); how many hours of hockey, football, basketball, swimming or lacrosse (garage door & car dents accounted for). It is all a blur of running boys, inside outside upside down with a trail dirty cups, spilled popcorn, granola bar wrappers, shoes, wet swim suits and piles of dirty laundry and hidden smelly socks in various furniture.

I was unable to sit down and write. I physically could not site still to read, draw, let alone write. I really wanted to share this summer. There were so many obstacles that I have finally overcome. But my TBI brain wouldn’t allow me to focus on intelligent conversation, sustained attention and unjumbled thoughts. I am glad that I let my body adjust to the meds and let things come back to even keel as now it is mid October and I am able to sit still long enough and write. I actually did begin October 2, but I have no idea where my draft went…somewhere floating in some random person’s email probably.

Then my son broke his leg October 3 and we have been adjusting to that. Talk about mess up my morning routine (LOL) I do my best and some days we are on time for school and others we are not. At least I haven’t forgotten a kid yet.

I passed my 3rd year brain surgery September 4 and my first year Steven-Johnson’s Syndrome (SJS) recovery September 5 with some major recovery milestones. Pain mostly controlled. I still feel tingling and fire ants on my right side. My right side aches when I do too much. I can live with that! But I am doing oh so much more. I still require my naps to be functional, but they are not all day naps unless I go hard core non-stop for a bit. I can live with that! I still get headaches and migraines but they have an beginning and a end rather than a continuous pain that doesn’t end. I can live with that!

I still have sensitive skin, itchy skin and rashes still. I am hoping we can get a handle on this as I hate having lots of cuts and scabs on my arms, legs and back. I am looking like a drug addict. The intense itching really bugs me. I am glad that my mouth only gets irritated once or twice month. I can even floss my teeth now. It takes a lot of energy not focus on the itching. At night it is really bad.

Believe me I am ecstatic about all the positive milestones in my recovery and I don’t focus on my annoyances of this recovery, but i still one not to settle. I am beginning to focus on my next milestones. Sustained energy and steady cognitive improvement. I can see work in the future. I have no clue what type of work, but it does seem more obtainable now!

So I am back not only from my break from writing but I AM BACK to land of living instead of sitting on the sidelines. It just makes it easier to live a meaninful life when not in as much pain.


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A crash course

kelly dec 2014 290 - CopyI am fortunate that the last couple months have been filled new long lost energy that I never thought I would ever get back. I have friends and family who I thought new about me and understood my condition but to only find out they they really didn’t understand all this time. I know that they keep hoping I get better. I will never “get better” it is not like a virus where you are back to you 100% old self. It is more about adaptation, flexibility and being creative in finding ways to live a productive life. And the definition of “productive life” is also not the old way of what you thought was a productive life either.

When you are faced with a long-term chronic condition (I won’t call it an illness as this confuses the shit out of people and they think you will get better) you are forced into a new way of life. One of your new found roles is a crash course in accounting. Even if you hate math with a passion, you are forced to learn the debit and credit system. You also are forced to learn to budget to have that little slush fund for that proverbial rainy day.

Sounds like a great deal. Learn a new profession, work with numbers etc…. However the downside of these new roles do not come with any fancy designation, nice salary or working with lots of money. Instead you are forced to work with a very highly sought after commodity; an elusive currency that has more ups and downs than the NY Stock Exchange – Energy!

Energy and pain are two things that unaffected people have a hard time understanding. They are often taken for granted and never thought of unless you are directly put in the situation of being in a continual energy deficit or in a perpetual state of pain wealth. I have tried to keep up but have crashed and burned. I am the worst accountant in training in my new chronic class. I am on the remedial programming as I still trying to live life by the seat of my pants rather than following the new accounting practices that I have been taught.

I have never even tried to explain how I have felt or feel to people. I couldn’t put it into words that would makes sense where I wouldn’t sound like a person that needs to be put in a rubber room or the new found trend of being “euthanized for mental anguish”.  I had heard of the Spoon Theory before but never really read anything about it until today. I love how it visually represents energy and planning in a tangible sense. Please check out But You Don’t Look Sick’s website as there is a great post on how the author explains how living with Lupus is like using the Spoon theory. I am inspired and grateful for learning something new that I can pass on to advocate for myself and for others.


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Feel-good strategies for managing chronic conditions

I have practised the art of gratitude for a number of years now and have used affirmations since I was a late teen. I graduated from my therapy about this time last year. I have continued to learn and practice the art of being happy, being in the moment and living with mindfulness.

I tend to still do too much and get hit hard with the fatigue. With the fatigue, I feel the guilt from family and with that creates an emotional downhill spiral. The same sort of thing happens when trying new meds. You take a long time tirating up in hopes that your body responds positively. But if the drug is not the right one for you; you then have to endure the nasty side effects as you tirate down only to do it again and again in hopes that you will find the one combo of drugs that actually works for you.  If you didn’t have some strategies to make you feel good, it is easy to feel angry, bitter, depressed, helpless, inadequate, worthless and all those other negative feelings that take up a lot of time and energy that could be re-directed elsewhere in your life.

Over the last year, I have been putting a lot of strategies into practise and have noticed it paying off. For example, mindfulness slowing me down. I am actually thinking “do I really need to do this…how will it impact me…my family…etc….” I have recently began adding more creativeness in my life by trying to do art more frequently.

All these activities sound like nice frou frou fanciful recreational only type things. However for a person with a Traumatic Brain Injury (TBI) or Aquired Brain Injury (ABI) these activities are crucial for developing new neural pathways for recovery. They work on both emotional and executive function areas.

I am addicted to all those affirmations that you find on Twitter, Facebook or other numerous social sites. I know that people scoff at them and find them annoying but I love them. If I read an affirmation that I like or that a friend of mine might want to read I save it on my phone. Whenever, I am feeling down, or overwhelmed, I scroll through my file folder. It doesn’t take many files before I am feeling better. This slows me down enough for me to remember to breathe, clear my head and re-direct. It allows me to pseudo-meditate as I focus on listing off in my head what I am grateful for in my life. It allows me to then see if it is worth it to spend my energy feeling the way I am. Sometimes yes & sometimes  no.

I know that some people do not believe in creative, gratitude, happiness or laughter methods. No these activities can not replace medicine for your anxiety or depression, but can be used in conjunction to help cope with stressors in a positive or proactive way. When you have a chronic condition or invisible illness you fight with negative emotions everyday that can spur from pain to not feeling included in your community. No one wants to be a perceived non-productive member, or to always be in uncomfortable or in pain or sleep deprived. We all want to be included – even in small ways. We all want that range of motion or more of those days where it doesn’t hurt physically or to have the good days outnumber the bad days. We do not want to choose between a long list of “have tos” and commitments because the tank is running on empty. Practicing gratitude, creativity, happiness and laughter methods help me to not be enveloped in a sea of black and negativeness. This is where the “fake it until you make it” can really come in handy. A change of perception can do wonders. Here are some affirmations that I have grabbed from my phone. Enjoy & hope you feel better after you read them.


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Fatigue

IMG_0871.JPGI have been dragging my butt since the last time I wrote. I am taking a sleeping pill at night and then still having a three to four hour nap in the day time.
There are many reasons because I feel like crude. A few are:
1) I am still recovering from Stephen Johnsons Syndrome (SJS). I am still flaring which is not fun at all. My neck and mouth still swell and get painful along with other parts of my body. I have read that the flares can take a long time to go away.
2) My pain is still not managed all the way. I have been using essential oils to help with most the pain. However, it is no match for when the pain reaches really high levels.
3) My headaches have been back, especially with the weather changes. I haven’t been experiencing as much pain (except for a few days) but I have been getting all the other symptoms. These symptoms include vision, eye watering, sickening massive pressure from the inside out, confusion and feeling tired.
4) Stress has also been a factor since we decided to buy a new home. We have seen lots of houses (too many at once overwhelm me). We went through financing to see if we can buy and then keep our current home to rent out. All is good with that now. Glad we can keep the house to move slowly!
5) Christmas time — well all but one gift has been bought. I love online shopping. Just the wrapping, cards etc…need to get done. Christmas dinner will be a potluck again this year with at least one other family.

Fatigue for me is very mentally and physically painful. My mind and body want to rest but when I lie down, I am uncomfortable and in a lot of pain so I can not rest. It will take me a long time to breath through, relax to sleep. I hate being fatigued. I hate feeling like I am in a thick syrup with a bungee cord pulling me the other way. I hate how my head feels like it on a toothpick and ready to fall off. Fatigue is not a party. It is not just “hey I get to rest because I am overtired” feeling. I hate being snappy and irritable. I hate that I don’t want to socialize or go out. I hate that no matter what I do I am utterly exhausted and do not have the energy to do anything – it is a big deal to load the damn dishwasher or make dinner. It is beyond exhausting and I have no polite term for fatigue other than I loathe it (ha ha didn’t use hate).

I have been getting so cold lately that it takes me forever to warm up. I have to crawl into bed and wrap in blankets to try to stop shivering. Especially after I drop the kids off at school. My fingers have even started to go blue. Chris didn’t believe how cold I was until I lifted up his shirt and put my hands on him. He told me that my hands shouldn’t be that cold after being inside for so long. So I made an appointment to have a phone consult with my Physiatrist. She is back from maternity leave so we will have lots to catch up on. I am wondering if my new med is making the blood pressure low again and my circulation bad. Who knows. We will find out what the underlying thing for my fatigue and cold feeling is…I need to feel better. The holidays are coming and then we are moving. I am excited and i want to show it!

I know that I am not alone. I am so grateful for Twitter and the virtual brain injured community I have found. The online community is not a bitchfest or complainers commune, but instead a safe place empathize with others, offer support and solutions. There are so many people with brain injuries that do not have any local support groups. The one ran locally where I live is more like school rather than a relaxed support group. The facilitators talk & talk & talk to us. There is very little sharing.

Brainline has a great articleFatigue article on fatigue

A fatigue poster from Brain Injury society in New Zealand.<

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Bi-confidence

I am at home with my youngest who has a spreading rash on neck and face so I can not go to todays BIRS meeting. I was looking forward to it. Last weeks meeting was good. Apparently i have great self-confidence and self-worth in my personal life but when it comes to my art (not including photography) and trying to figure out a new professional side, I am lacking self-confidence.

But who wouldn’t lack self-confidence when bascially all the you knew kinda went swiss cheesy and into the depths of the deep dark brain. Did you know that most people see their career persona as their number one person…or should i say those type A people – like the old me see themselves or self-worth via professional side only.

So what is my self-worth and being:
a good parent
partner
friend
happy
pet owner
artist
driver
cook
swimmer/water exerciser
writer
volunteer
advocate
and many more that I can’t currently think of.

I am working three times a week at the Brain Injury Releaning Services to get my brain back a bit more so I can either go back to work or go and successfully do my Masters. I accept that I am not ready at the moment. So letting go of a timeline for completion and being “back” into what some say “productive” place in society is okay. I just can’t stand the stigma of where I am at. “Society leech” “tax payers drain” but it is what it is. So really I do not need a professional side of self-worth. I should just throw that out the window and say screw it. Why do I need two or more self-worth pigeon holes. Maybe I will just have one. If people can’t accept the one, they they should filter out of my life.

By allowing myself to do less, expect less and just be, I am having more energy. Less stress = healthier me.

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