Howdy Hydrocephalus

Understanding my unique gyroscope


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Oh Sleep how I missed You!

For over the  last five years I have suffered from inadequate sleep from my crazy re-wired brain. Sleep is one of the most important activities to allow your brain to heal itselt. That is why patients are given sleeping pills in early part of the healing process.

After that you given suggestions to help with proper sleep hygiene.

This often include:

  1. Limit naps to 20-30 minutes. This makes sense on paper…however when you are fatigued and sleep-deprived you nap. When you dealing with a life long chronic condition and need to use the spoon theory to survive and educate people you nap. I really don’t think the regular doctors understand. Limiting naps may work for the “normal” person who is going through a small patch of insomnia but for us Spooners naps are the bridge to help us make it through the day.
  2. Limit caffeine consumption. I love coffee and I still have my coffee everyday. Coffee has often held off migraines for a short period of time for me so there are benefits to still drink it. The only thing where I limit my coffee consumption  But I do not have coffee past noon. I do not like decaffeinated coffee and often caffeine free tea gets a bad rap. However, I found a few teas that I just love. These teas taste hot or cold and you do not need to sweeten with sugar. My current favourites are Celestial Seasonings Bengal Spice , Celestial Seasonings Ginger & Turmeric Tea and Tetley Blueberry Ginsing tea. I tend to like the spices that make me feel warm and cozy.
  3. Exercise daily. This is a very hard one to do when given a new life with a chronic condition. Prior to surgery I was very active – runner, Tai-kwon-do and I worked outside so I was fit and had lots of muscle. After surgery I wanted to exercise to my previous level. It basically took me up until recently to understand it is not the amount or intensity that matters. I can exercise for as little as ten minutes. I love how I feel! I use a wooden balance board to help with my right side and core. I also use the yoga half ball with handles. I started with resistance bands without handles but now prefer resistance bands with handles. I also walk not run!
  4. Get enough sunlight and darkness. This supposedly gets the sleep-wake cycle back to normal again. I live in Canada and the weather can get horrible in the winter so I use a Light Therapy panel. This is blue light which gives me headaches but I wear tinted prescription glasses all the time to alleviate. I also take higher than average doses of Vitamin D as prescribed by my Doctor. If it summer one fun way to baseline your sleep-wake cycle is to go tenting for three days with no electronics.
  5. Don’t Eat or Drink too much before bed. Avoid the foods that cause you upset stomachs or build acid. Too much fluid may cause you to get up numerous times a night disrupting a good night’s sleep. This is a very personal thing and experimentation is needed.
  6. Relax before Bed. This means different things to different people. Some people chill in front of the TV while others read. Some do Yoga or Meditate. I often read and listen to diurnal Beats or Meditative Music from Amazon Music. We have been Amazon Prime members for years and love it. Try Prime Membership  Amazon Music, Video and Photo are some of the benefits. not to mention the awesome shipping times. This saves so much time and energy.
  7. Create a Good Sleep Environment. When I first heard of this, I was thinking WTF. Well we don’t have a TV in our room. My hubby watches his shows with headphones via his tablet. I spent almost two years trying to find a pair of wireless headphones that would work for me. I found a great pair of reasonably priced wireless noise cancelling over the ear headphones that fold with comfy foam and fit my head in all the right places. I don’t watch TV on my tablet, but I do read online books and listen to diurnal beats to relax and fall asleep. The biggest thing that I love is my how my Apple Ipad has a night mode so I am able to read without all the blue light. I also love how I can turn down the brightness and also change my books writing to grey. No one can see my screen at night except me it is so low and with a muted amber glow. I am so sensitive to light that having all these features allows me to comfortably read and relax. Setting the room temperature for proper sleep is very culture and personal dominant. However the bestest Christmas Gift ever was from my hubby. I had read about the benefits of weighted blankets. He bought me a single sized 15lb blanket from YnM and I have been sleeping throughout the night. It was a Christmas Miracle.

I have been sleeping like a baby since December 25. Except when I didn’t bring my new favourite blanket to Coleman for five days. Next time I will haul it with me. I have been extremely grateful and appreciative to have sleep back in my life.

It has made me think clearer and be more productive…okay I am still a squirrelly mess but I feel like I am being more productive as I try to stay focussed.

So I am very grateful to a wonderful start to 2018. I can see so many positive changes happening especially with having a solid night’s sleep!

Disclaimer: The blog is a documentation of my life living with Hydrocephalus and Brain Injury.  It is not professional advice but tools and techniques that have worked for me via trial and error under the guidance of my medical team. Everyone is different and what works for one person may not work for another. Consult your medical team. The links above contain affiliate links. This means that at no additional cost to you; I will earn a commission if you click-through and make a purchase.

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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

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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, brainline.org 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


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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.