Howdy Hydrocephalus

Understanding my unique gyroscope

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Building Endurance

This year is all about my spoons. I am taking great thought and consideration in my daily activities and routines…okay for the most part. I have only a couple over did it days in the last two months rather than one or two a week. I am feeling positive that if I keep this strategy up, I will see more improvement.

So how am I doing this? A variety of ways.

  1. I bought four Echo Dots for the house. When I first saw the ads on TV, I wasn’t too sure it would be right for me. I spent a couple weeks surfing the net and finding lots of great information such as this article sharing some of the benefits that assistive AI technilogy can help people with various abilities. I was not getting any help with the local brain injury clinic so I took the plunge and bought four. Each boy has one in their rooms; there is one on the mainfloor in kitchen and one that travels with me in the car, at my studio and in the master bedroom. The Echo Dot helps me keep organized. 20180208_110948_HDRIt will tell me my missed notifications and what I have upcoming. I can set various alarms such as to wake up, eat, medicine, drink, pick up kids, remind kids have shower etc…. I can drop into the boys rooms and tell them it is dinner or they need a shower. I can make lists by telling Alexa “to add…to my list”. There is so much that it has helped me with but I will need an entire blog post to tell you about my discoveries.
  2. We got a family membership at the local YMCA where I have been working with a friend who is a personal trainer. She has introduced me to TRX suspension workouts. These workouts are great because I do not have to worry about falling. I use my own body weight and do a short body workout…ten minutes so I don’t overdo it and spend two days in bed. With her help I have begun jogging again. We walk one lap and jog two laps for 15 minutes. I was scared to get running shoes because they always had these overhangs with the sole acting like a heel so I would lose my balance easily. However, after much searching I found the perfect running shoe and love it. It is light and doesn’t have the heel thing so I feel secure. It is a Nike running Shoe that even fits my narrow feet awesome. I was so happy to find a pair. When my friend is not with me, we found out that an eliptical machine is the best machine for me. I can monitor my heart rate and hang on so it makes falling off less of a chance. I am supposed keep my heart rate at 145 bpm so I don’t hurt my head. I use a FitBit to help with running and the rest of my daily routine. I don’t have to scroll through all the screens to get to continous heart beat like my previous fitness band. I almost fell of the eliptical about ten times because I kept trying to monitor my heart rate. Now all I need to do is either flick my wrist for screen to light up and there it is! Easy peasy:)
  3. The third major routine changer is bring back my wall calendar and paper calendar. I now function with my digital calendar, wall calendar and paper calendars. I use a Daytimer 30 day wall calendar.  This calendar sits right beside my laptop computer20180208_110921_HDR

The other side of this calendar has a 60 days. I used that only before and hated it because I can not write small enough. Now I use the 30 days side can almost fit most things in. Above is my calendar and it is not filled out all the way. I use different colours of  ultra fine dry erase markers for each family member. It has been working awesome. 20180208_112629_HDR.jpgI also use two two Blueline miracle bind books. One is a weekly calendar. that gives me room to jot down everything and goes to 8:30pm and we have a lot of hockey or volleyball at those times. The second is the teal book that is undated note organizer with pages that can move in and out of book or into different sections based on my notes. I use my Google keep for mostly links and other stuff that I find interesting, but I can not put anything else on it as I will forget to look. The teal book comes with me everywhere but my planner stays by my computer so I won’t lose it.

4. I forgot because I now carry so much stuff to keep myself organized…I needed a bag to fit it all in. I am not a purse person, but when I do I use a crossbody bag. Even then if I put it down, I may forget about it and walk off with the bag lying on a restaurant or hockey rink seat. I began my search…there were bags that were too small,  too fashionista for me, or way too large. After about two weeks I took a chance on a leather backpack that could fit my ipad, apple pen, keyboard, wallet, phone, sketching pad & pens, phone charger, water or coffee container or both and a snack or two. Often it carries hockey balls and hockey tape as well! This leather backpack did not break the bank and looks nice enough I could wear it out to a restaurant. It is big enough that I have not forgotten it anywhere…yet!

Of course I am working on a bunch of other stuff too but this post has taken up a lot of my time today and I still have to put five listings on my Etsy store. It is called Crowsnest Cre8tions and I make downloadable posters and graphics. isla_280x280.29169110_36m4np9q I haven’t made much money yet…but slowly I will get there too! If interested in earning free listings and opening up your own online store. Check out Etsy here.

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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The battle between a clean deck and empty energy tank

IMG_3591This was my battle and I won. You would never think that a deck could be so sneaky and ninja like could you. But for a person such as myself recovering from a TBI/ABI with major fatigue issues a clean deck can be a nasty fight. First off, I actually “noticed” how grubby our back deck was. I wasn’t distracted by pain or other stuff that can “blind” me to seeing how the world is around me. Second, I moved all the furniture out of the way and then I cleaned the deck by mopping it. I also conquered the deck from start to finish in one go; not my usual family frustrating chain of events.

That does not sound like much to most normal energy people, but this is an amazing step for me. It turned out that the deck is not tan, but really grey. It looks so amazing except for the three steps I forgot to clean on the one side of the deck. Can’t expect perfection when progress has finally started to show up. Oh well – a person can compare colour differences more easily now. I am so over the moon with my new found energy! My progress is blowing me a way every day!

This how cleaning a deck looked like for me for the last three years. How in 33 short steps and a couple months you can have a clean deck when you experience TBI & fatigue issues

1) Jump in and start moving deck chairs

2) Realize that you have blocked yourself into a corner.

3) Move Deck chairs again.

4) Go upstairs and lie down. Head is spinning and no muscle strength

5) Get distracted with something else

6) Forget about half moved deck furniture

7) That day to two weeks later…finally remember that you were going to clean the deck

8) Move the rest of furniture.

9) Go upstairs and lie down. Head is spinning and no muscle strength

IMG_359210) Get distracted with something else

11) Forget about all the displaced deck furniture

12) That day to two weeks later…finally remember that you were going to clean the deck

13) Look for the mop & mop bucket. They moved with us..right!?!

14) Look for floor cleaning solution. We had a big bottle somewhere

15) Arrange all outside & then go upstairs to rest

16) Go upstairs and lie down. Head is spinning and no muscle strength

17) Get distracted with something else

18) Forget about the filled mop bucket with cleaning solution

19) That day to two weeks later…finally remember that you were going to clean the deck

20) Mop half the deck into a corner

21) Re-mop myself out of a corner

22) Go upstairs and lie down. Head is spinning and no muscle strength

23) Get distracted with something else

24) Forget about all the half mopped deck

25) That day to two weeks later…finally remember that you were going to clean the deck

26) Finish mopping deck and start to move back furniture

27) Re-mop deck as there are dirty streaks from moving back furniture

28) Go upstairs and lie down. Head is spinning and no muscle strength

29) Get distracted with something else

31) Forget about putting away mop

32) That day to two weeks later…finally you remember that the dirty mop & bucket is still outside

33) Look around and think…I need to relax out here more!

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Lost in Time

IMG_3058I have been preparing art for adjudication for an upcoming Art Club show at the Esplanade. I am using my self-portrait after brain surgery that I made last year. I also made three other pieces two other mixed media and one woodblock print. I barely made the deadline Saturday. I am proud that I was able to get them in.

So how does a person with a brain injury get some art done. Well I obsessed and thought about what I was going to do for months. I am not writing about just thinking of what I would like to do, but it consumed my thoughts. Then once I figured out what I was going to do, I became distracted with other things that I do not remember but one was our moving houses. An email reminded me about the show, so I went about gathering the equipment, hardy board, Styrofoam head, magazines, paper shredder, and rope. I was on a feverent roll of action so I tried to use Vaseline on the Styrofoam head and paper mache in hopes that I would be able to use the head as a mold and remove the paper mache from the head once dry. Once I paper mache the head, I was distracted by other things. A few weeks or so (could be months) I came back to the head to try to remove the paper mache to have a hollow head. Well that didn’t quite work at all. I was forced to re-visit the head.

So one Sunday morning in the kitchen, I took a butcher knife to the styrofoam head and carved it in half. My son was on the couch with his mouth hanging open thinking that I had probably lost my marbles (still debatable). I hadn’t really thought the process through. Dull knife and it took a while and made a big electro-static mess. After energy used I was once again distracted.

I then forgot about the art project again because I had to make donations for school fundraisers. Thanks to the club’s secretary, another email reminded that I had a month to left to deadline for handing in pieces of work. I think that I have plenty of time to do it all. So prepped the board and got stuck. It was this 24″x48″ piece of white board. So I went to the computer and looked up photo transfers (I forgot how to do it). I deviated from the art project and made a sign. I went on computer and made some word art templates. I then phototransfered nine to one side. The next day and for a few days after I worked on removing the background. I became distracted and started my woodblock carving.

IMG_3049I grabbed half a head, some found objects, rope. I went to work with a screwdriver and punch putting holed in the head. Then then threaded the head with rope. I really hadn’t thought this part through. It wasn’t part of my master plan, but I ran with it. And then it sat again. For the last month of this project, my Botox has worn off, I am in pain. I can only work on this for sometimes as little as a few minutes and as much as a hour. Each time after I work, my head is spiking in pain and I need to go lie down because I feel absolutely wiped. Not from physical energy, but mental energy spent. Time suckage of just staring at what I am doing and trying different things is huge. I can’t make up my mind. That is the one thing where I continually get lost in time is my lack of decision making.

IMG_3142My two other pieces I know are going to be trees. I have half carved out my woodblock. The final piece is still stuck. I start with a board and end up getting a canvas. The final week in the house it is chaos. I work on art, sleep, nap, work on art, scatter art prints everywhere. The garage, downstairs and dining room table have been taken over. Laundry is piled high in the bedroom. Toys are everywhere. We eat left overs or what ever is in the fridge. Thank goodness our student went away as there was really no scheduled meal & kind of fend for yourself atmosphere. My head is spinning, my chest hurts. I am depressed. I am an emotional, physical and mental wreck that is sinking down a deep rabbit hole. I keep printing and burnishing my tree but each print is crooked. Then the ink is still wet after 48 hours. The only salvagable I have ruined trying to straighten for the frame. I become obsessive-compulsive in trying to get a straight tree print. It consumes me Thursday and Friday.  My hubby has a hockey tournament and my Saturday (the due day) is over scheduled. I am able to drop two pieces off on Friday and by Saturday afternoon the other two go in as well. What a relief. I am hollow and exhausted. My vision has a hard time focusing. I go to bed the same as the boys and sleep through the night with the help of a sleeping pill.

Art has been therapeutic for me. This has been a successful learning experience. I do not respond well to deadlines. I have to work at my own pace however forgetful, inconsistent and irradic it may be. At least for now as there is plenty of room for me to become more flexible (one of my weakest executive functions). I hope to go back to school and become an art therapist as I have seen the benefits for me and know that I would be able to help others in the healing process as well.