Howdy Hydrocephalus

Understanding my unique gyroscope


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Gas Guzzler

January has been literarlly a pharmaceutical blur – yes we are still trying to get meds right to control the 24hr headaches. I tried to write and began a couple posts but then of course forgot about them and moved on with laundry or cleaning the bathroom until today where I promised myself I would get something down electronically before I completely forget about this month. I was sprung from Unit 58 on January 10th and officially an inpatient graduate. I was happy to leave because I know that there so many people waiting to participate in the program. I am referred out for Occupational Therapy to help with Executive functions and Speech Therapy to help keep my stutter under control It has been an interesting few weeks re-adjusting to life on the outside with my newfound realization of my brain injury and all the quirks that go along with it.

What I have found out in the last little while is that when the TV is going; three adults talking; the kids playing; dryer spinning; fan whirring; chairs scraping; creaking floors; trucks starting outside; dog shuffling – I still hear it all – it is all noise all at once that is hard to filter. I wrote a post called super powers. Yup didn`t realize it was a part of my injured nogg`n. Because of this lack of filtering, I am distracted easy and not pay attention (sorry folks – the smile and nod thing doesn`t mean I actually “heard“ ya). When I am overloaded I do not realized that my tone of talking sound like I am irritated or angry sounding even when I don`t think I am. I do recognize body language but may be confused that your body language showed something different than what I said or intended to say but it may have come out wrong.

I am learning that the damn visual disturbances are still there. I thought they were gone because I didn`t leave the house for 1.5 weeks and other than right-sided fuzziness and popping words when reading, I thought it was all under control. Then went to Wy`s school. I know we like to think of all school-aged kids as stars but to see them walk by with star trailing is not so cool and a little disappointing.

I have learned that when I get too much going on, I may not be reading correctly or understanding what I am reading without knowing it thus the kids passport fiasco. Usually I am the one in the household who does all the filling out of forms and paperwork. So I filled out the passports; had Chris sign; waited forty minutes to hand them in only to find that I had filled them out incorrectly in many areas of the forms. I am and was so embarrassed. Prior to injury I was extremely anal about forms and filling them out correctly. Now I know that Chris needs to overlook and proof my forms. He just assumed like me they were filled out correctly.

I was handed some homework at the end of a speech session and looked at the forms and couldn`t understand what I had to do. My therapist explained what was needed. I smiled and nodded and went home. After resting at home, I looked at the homework again and thought it was somewhat easy. So I am somewhat there when I am rested and in a distraction free environment. Everyday I still feel very dumb compared to where I was before. I haven`t accepted that I am not as smart as what I once was – just yet – that will come with time especially as I learn strategies in re-defining my life. The fortunate thing is that my writing is relatively intact and I can communicate more freely via typing than any other way.

I also do not know how to set boundaries when doing things. I will go full bore at something and then pay the price with complete lack of functioning and fatigue for 24-48 hours. Everyone preaches “pace yourself“ but to me there that is a foreign idea and I can`t relate. I think I will be working on this. This falls into the same category as when I didn`t realize that anything was really wrong with me.

It hasn`t just be hard on me; it has been really painful for Chris and the kids as well. We all didn`t sign up for this but we are all trying to pave a new road and make it work. There have been a lot of misunderstandings, frustration, stress and unknown especially when we are trying to have a “normal“ family life. We are learning patience, understanding and forgiveness. The TBI guide or Alberta Initiative Brain Injury Guide are two good thing to help us all understand what is going on.

I like to think of brain healthy people as hybrid cars – where the fuel they use is energy efficient. It can run all your unconscious brain functions, physical functions, cognitive functions all at once without depleting in any of the main areas. It is a well-run machine that picks up speed quick and corners well. I, on the other hand, am a gas guzzler. I am not so efficient with my fuel and energy placement. It doesn’t matter if it is cognitive or physical, it all takes the same amount energy and the energy gets depleted quick. I am always needing to re-fuel up with rest or else I have my fourways on at the side of the highway waiting for a tow truck. I may not be quick to speed up and a little rough at cornering but at least I am still getting from A to B!

Here is a great video explaining abit about a mild TBI. It helps me explain how I am feeling.

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Holiday Havic

Phewww! thank goodness January 2 is here and we can all carry on with the new year. Christmas was good; we scaled down on the chaos and gifts. We hosted a potluck christmas dinner. New Years was interesting.

When I got home from the unit, the next morning I got up and my right leg was like it had a mind of its own. My leg felt like wood and even my right arm was tingling. I wandered around knowing I had many things to do before Christmas, but not knowing where to start. I finally kick started everything and told my leg to cooperate as I know – it knows how to walk. I may have been unaware before the leg brain thing was disconnected but I was not going to let my right leg win. I forced it to walk again properly – I was back to walking with my head down and saying “heal toe…heal toe”. Then the leg graciously paid me back by burning/tingling all day & night.

Christmas always has its snafus, like making enough stuffing for four turkeys (okay have enough stuffing for future turkeys in freezer), last minute finding the right Santa gift – Skylanders for Wii (we don’t own a PS3), kid’s temper tantrums, and forgetting to put the turkey in the oven (thank god for internet to see how we could adjust the oven timing/temp). Chris and I pulled it off as a team. Let’s not forget, Kyle, who came to town for Christmas and to see his friends & was rooked into to help out as babysitter (so rest of gifts could be wrapped) and driver (last minute christmas eve morning gift finding exercise so Santa wouldn’t look like a knob). Kyle took it all in with stride. I think he actually like spending time with his waaay younger little brothers. I know Wy & D both loved having him around.

In between christmas and new years I went back to the unit for two days of therapy. I was completely fatigued and still struggling with my right leg being weird. I was walking okay, but still having trouble trying to figure out how to do the hopscotch like movements. I finally got it down – yay! My brain definately preceives things differently and we figured out that I have been leaning to my right an extra 20 pounds so I can get some feeling response in that leg. I love speech now because there was big strides in improvement!!!!!! I finally am getting the breathing and learning to put words together. In the session and when not stressed I do very well but the stutter comes out in full when get excited to stressed still. I am even beginning to sleep with my mouth open – yup that is me your regular mouth breather now! I am still learning to plan what I say or else the stutter comes in. It is so hard to plan what you say when before it was effortless.

My parents flew in to look after the boys so chris can go back to work. My dad has a cold and his ears are plugged so he is basically what I preceive as yelling constantly and doesn’t stop talking at all. My dad always get the boys amped up and they run around screaming like crazy people non-stop all day. My quiet home, my refuge was taken over, there was no downtime, no quiet, no rest for me to be able to recharge.

They see me as who I was. Physically I look the same, but they do not clue in to how much effort it takes to for me to listen, to have a conversation (yes I would rather not talk thank you), pay attention, to filter out noise (constant yelling & idle chatter really do suck the life out of you); live with an almost constant headache that fluctuates with how fatigued I am; To be able to figure out what I want to say is sometimes impossible, as well as, just trying to remember things and participate in life takes way more effort. I know the added people in my house brings in more visual stimulation, noise etc….Right away I noticed I was not focussing and my memory was trashed. I could live with that nothing really important to remember or do anyway.

But the noise was over the top! I would politely say that it is really loud in here, or it was really loud this morning that I heard everyone clearly even with ear plugs in (when I really was holding back – Can you all just shut the fuck up and keep the kids quiet for a bit rather than egging them on to be continuously yelling & screaming). My polite self advocating fell upon deaf ears – we weren’t yelling or you know your dad’s ears are stuffed; so I would escape to my room for a bit. This was looked upon by my dad as being an ungrateful bag – no clue that this was a survival strategy for me not to lose it. My mom was doing a Sudoko puzzle and I tried to have a conversation that I can do them anymore. That I spent six hours doing a puzzle three times and it was wrong. I was told to “practice more”. Yup I am the one with the brain injury and I am thinking “no shit sherlock; where did you park your squad car”. It is not as simple as just practicing more, the strategies have to be relearned so I understand how to to the puzzles and problem solving.

Then my parents bought hats & horns for the kids on new years eve. Well I took a couple of photos & then the annoying horn blowing went on. I escaped to my room. It was 8:00pm. I am exhausted. I have used up every once to concentrate, filter noise and visual stimulus, be polite all day; act like a “normal” person – I was done. Wy threw a pillow at D when he had a horn in his mouth. I was no longer playing nice. The horns were thrown out – my dad was being an ass and I couldn’t get out what I wanted to say so I said that “they could just leave”. Intellectually I know my dad has an undiagnosed brain injury from lack of oxygen from all the heart attacks and quadruple by-pass, and I should be understanding and generally I am but holy hell I am walking on a fine line too especially when my polite self advocating was not heard at all.

So the next morning I woke up and kept my ear plugs in until Chris came home and took me back to the hospital. It was the best thing to do. They could go about their routines like what they consider “normal” people and I was able to be comfortable. No clue that they are so loud that I could hear everything just fine. I only wish that I could have thought of it sooner. Well at least now I have discovered another coping strategy. I also know now that how my parent preceive me will be the norm and most people will not be able to understand what it is like for me. Now I understand why people always talk about brain injuries being “invisible injuries”; about how clueless most people act; how the idea of faking injurie comes to light. Yikes – I now know that I need to learn to self-advocate better or else getting back into the “real” world will be a bumpy ride.