Howdy Hydrocephalus

Understanding my unique gyroscope

Big Steps

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The other day I remembered that I should write in my blog. For some reason my reminders have not been showing up. I was inspired and my fingers flew freely, faster than if I concentrated and had to speak. I was super happy with what I written and then of course…I hit the wrong button and all that disappeared in front of me. I was not upset, I know that whatever came through my fingers was gone and I would write something else.

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I finished my testing at BIRS (Brain Injury Re-learning Service) and have been working on improving my squirrelly lack of attention. I have two one hour sessions a week. Most the time I don’t even make it an hour because I am tired and my brain is fried. We are using technqiues from the 80’s…i am assuming their philosophy is if “it ain’t broke don’t fix it”.

I am not giving up on the brain schooling here in the Hat, but I am a little skeptical as I think there are other ways. I still do not like the fact that there is no support group for me or my family. I dislike that they do not have other activities such as social art, fitness etc that other brain agencies have. I looked online and the Powell River society has all that and it is a very small community. I wish they would get with the program and get us brain injured people together rather than isolating us. It is bad enough that i would rather stay in my house all the time unless i have my appointments that wouldn’t provide basic stuff such as a support group. What am I to do go on Twitter or Facebook and say “Med hat brain injured person looking for friends in similar boat”??!!! Okay I actually did that on twitter and was given two names of people and I was in contact with one lady but of course I lost all her information because I have a brain injury and I am beyond disorganized and chaotic.

On another note, chronic pain is a pain in the butt. I never realized how bad my 24/7 headache pain was until it went away. About three weeks after my shots I woke up with energy and no head pain. It was like I could think (manic thinking because I “now could do everything at once”) and I felt that my head was not a lead balloon and weighed 50lbs lighter, I was almost human; more than human a super hero; nothing could stop me now So the Botox was working like a hot damn. How did I know that my new operating system was working at a low pain level was that an hour later I was knocked flat by a migraine combo ice pick headache – wowsers talk about a shock to my new system. I had adapted to my constant pain by breathing, distraction and limited life activites.

I never gave up to finding a solution to my pain. Now don’t get me wrong, I am still not fully out of pain. I frequent headaches, but they are doable. My right side pain is still there too, but the meds are sort of working. I am hoping to change in July to something else that will work with pain, fatigue and other side effects that I do not like. I just wish other people with chronic pain would keep fighting for solutions rather than giving up and making do. Making do just sucks!

I am so amazed at my recovery since September. The speech twice a week; volunteering with kindergarten reading group 30 minutes once a week; volunteering at school when I could with field trips etc… has paid off. I was able to use my speech techniques frequently that I have muscle memoried them in to my body again so my stutter doesn’t show its head until I am very tired or there is way too much stimulation around me. I am able to communicate better. Still don’t really know what to say to people beyond the basic conversation unless around really close friends. I am friendly to people; but still learning the cues to know when to finish a conversation etc…

I am learning to accept that I need lists to make things happen. here is an old list from October 2012. This is now in my crainum and the muscle memory recovery process is almost there. I still have to go through it my head at times. However, I may need the checklist again in September until a new routine has been established again.

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Heres to lesser pain days routine filled days.

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