Howdy Hydrocephalus

Understanding my unique gyroscope


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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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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!