Howdy Hydrocephalus

Understanding my unique gyroscope

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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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Almighty sleeping pill power

Since I have been taking a sleeping pill lately – I now not the healthiest thing in the world, but ya gotta do what ya gotta do until I improve my sleep cycle routine etc… I have been surfing on my Ipad (with tinted glasses on to avoild the blue screen of sleep death) and finding all sorts of articles. I usually find them the next morning and think what the heck was I searching for. But this article 7 tricks to improve your memory was a great re-read. I can not remember anything that I do in those moments from taking meds to being knocked out.

When I grabbed the Ipad moments ago to surf the internet, I found out that last night I was looking at articles for memory, different alternatiive health methods, art journalling, was open with four different articles. I then looked at what apps I had open and I started doing luminosity and I guess i didn’t finish. YP shopwise (didn’t even know I had that app or what that app is) and Facebook (no one look at what I posted in case it was baaaad). I found my ipad on the side of the bed this morning and have no idea if it just slid off the bed or i placed it there thinking I had put it on the bedside bookshelf.

So I take this pill under my tongue and think that it really doesn’t work but it fact it does and maybe a little too well. This tiny little pill packs an immense type of power. I am still using my essential oils at night. But I need this crutch for a bit. I don’t have time right not to allow myself to go through an insomnia cycle naturally.

Our last Brain injury support group was about sleep, nutrition and wellness. It is so true to that things come into your life at the right time. It was good to re-learn and listen to everything. I just wish i had some answers to why my brain does not like sleep when it really badly needs it. It seems that my brain wants to have one of those lingering hanger on unhealthy relationships with insomnia.

My SJS flare is a bad one (my hair is falling out in handfuls) and I can’t afford to let me immune system get weaker. We are packing to move and Christmas is around the corner. So I will allow myself some slack and give my brain some much need recovery time and rest


Detour – Under Construction

I have always been a person who didn’t need a lot of sleep, but when I did sleep, I dreamt vividly and frequently.  As a kid, I slept walked and talked.  I don’t sleep walk anymore, but I talk, thrash, and sit up during my dreams. Chris has supposedly had conversations with me as I was sitting up. Much of my creative inspiration has come from my dreams. Being an avid dreamer, awake and in a state of sleep, can be a double-edged sword.  When in stressful situations, I work a double shift.  I remember, as a Forest Officer, when investigating a big field issue, I dreamt and talked out loud about it all night long  for weeks.  I would wake up feeling tired and stressed…the never ending work day. But all other times, it was like having my own movie theatre in my head – very enjoyable and I wake up inspired, refreshed and ready to take on the world.

I awoke from surgery seeing one of the pictures I took at a recent trip to Dinosaur Provincial Park – dark blue sky, with white fluffy clouds on the badland formations looking for dinosaur bones. The was the last long still image I have had.  After surgery when I slept I felt some crazy things.  At first my brain was in over drive and I only saw lines like in a sketchbook movie.  No real stick figure images, but just lines moving at rapid pace making it seem like it was a movie.  I then didn’t see a thing, just felt like I was a swirly screensaver, spiralling downward endlessly.  I then felt like I was in an out of control elevator dropping non-stop.  Each time, I would feel these, I would then just pass out in some deep sleep.  I would see flashes  & flickers.  About five days after surgery I would see flashes of still images – dream fragments. Then those disappeared as well & I am back to just feeling the swirly motion or flashes of light.

Scientists are still trying to get a grasp on why we actually sleep and dream.  After my brain surgery, I think I lean towards the Restorative and Brain plasticity Theories  where sleep is needed to help the fix body  from the day’s wear and tear.  Dreams are also thought of as a way of processing of what went on in the day where  you are keeping the good stuff, and throwing out all the clutter so you are good to go for the next day.

My brain was hurt with the hydrocephalus and invaded with a small tube via endoscopic surgery.  I feel very certain, my brain is trying to heal itself as much as it can.  I think the dreaming function of the brain has been put on hold as there are much unknown higher priorities that need to be taken care of first. I mean there are approximately 1000 trillion connections in the brain and some need to take time to get fixed or re-routed.  Although I want to Dream On with my own personal collection of movies; I have to remember  not to get frustrated that my dream highway is under construction and I have been re-routed down some unknown obscure road.