Howdy Hydrocephalus

Understanding my unique gyroscope


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Warning Evil Villain Neurological Strikes Again!

images (6)I was all prepared to wait another week then give you a great update on my personal chaos but then something important came up and I am utilizing my high dis-tractability to write about this or else I will then overthink about it and it will consume me all day until I get it out.  So here goes…this is what has been on my mind and in my heart creating me to grief since yesterday.

My youngest son wanted to play ice hockey this year. It is his first time and we had player evaluations yesterday. My oldest son’s coach from last year son was in the same evaluation group. This made my youngest son happy to sort of know a couple boys on the ice. We were looking forward to the usual casual catching up about summers etc….

However, when the Mr. S and his family walked in, I noticed the gait, constricted body movement,  grimace of pain and slight facial difference. I said “it looks like you are in pain…did you hurt yourself?” Mr. S responded “I lost a battle with a mosquito.”

All I could think was Whaaaattttttt….the……F. This is a load of crap. He is so young to be hit so bad. He is a good guy…his family is good people. Why can’t this shit happen to bad people like the asshole who stole a truck last week, caused two different high speed accidents in two different intersections and takes an innocent 18 year old’s life; then decides he wants to try to take the Police Officer’s gun in the hospital. Those are the assholes that deserve this shit not a person who works, volunteers his time and is decent. I always shake my head as to why this happens.

So apparently Mr. S is one of three people who contracted West Nile this year in Alberta. And of the three “fortunate” people who were bit by the special mosquitoes, he of course he drew the lucky wild card and was hit extremely hard with both severe physical and neurological effects.  Everyone is hopeful that the effects are temporary and not long lasting or permanent. I know I am hoping there is not long term effects. But when anything affects the central nervous system you never know what will happen. I know neurological re-wiring does happen and continues to happen with me but it is a very slow and I admit frustrating process.

images (22)I think it hits too close to home and I know the enormous amount of grief, guilt and loss person that is happening to Mr. S. I still don’t understand the family perspective entirely. But I can see the pain, sadness, uncertainty, trying to hold it together without breaking down and trying to be positive in Mrs. S eyes. I can see that the kids will grieve, be angry at times and frustrated, but the love will always be there. I see the fear, uncertainty and the ominous overbearing unknowing that lay ahead. I see the hope for continued recovery.

images (3)I also wonder if they are provided with all the resources the community has. I know we weren’t. We were not giving all the other stuff other than prescriptions, occupational or physical therapy. There is more out there but information seems to always get left behind.

  1. Get into a chronic pain management clinic rather than just Neuro or GP
  2. Occupational therapy runs out…Brain Injury Clinic can help with memory, distraction, daily activities with both an one on one sessions at BIRS and workers who can come into your home.
  3.  Mental Health in Provincial Building has people you can talk to. By yourself, couple, kids and family sessions available. This is a big stressor event and we are never taught how to hand it. Everyone assumes we can “Just Deal”. When you lose your identity quickly depression and anxiety crop up and almost go hand and hand.
  4. Medicine Hat Hospital Recreation programs are amazing and help you explore new or adapted leisure and recreations options. They have great programs such as walking, art, and others but I forget what.
  5. The Healthy Living program that is run in a building near the hospital is a great program. It was a safe place to work on building coordination, strength, and fitness.
  6. The YMCA program has an adapted fitness coordinator
  7. Community Futures Disability Entrepreneurship Program for those who are finding new career directions in life.
  8. MH Adaptive Sport is here in Med Hat with amazing people. It is for people of all abilities not just wheelchairs which I thought.images (8)

That is all I can think of for now but I am sure I have missed some very important groups that I have used and continue to use.

But one of the biggest things that have made a positive impact in my life has and is laughter.  Humour and joking is one way to break the ice with those who are uncomfortable when they see you for first time in a while, as well as with family on a daily basis. Humour and laughter just naturally cycled in being positivity in our lives. From that it spurred gratitude and mindfulness…of course I am continually working on the the mindfulness.  But as a dear friend of mine who is a two time cancer survivor and now officially conquered the big C always says “Any day I am turfside up is a great day” This so true for all of us as we take the crazy journey through life. We all often get wrapped up in the fast pace and stress of getting it all done we never really take a look around to appreciate the simple things.

images (2)I have always hated mosquitoes, black flies, deer flies and horse flies especially when working in a black spruce stand where you are basically a free diner with a neon sign that says open for business…free blood. You have to walk around looking like an alien in a bug suit because Deet is just an appetizer for those hunger little buggers. So I had to look up what West Nile was again because it has been a while and my mind of course is a sieve. So West Nile is a mosquito borne disease that usually doesn’t cause and symptoms or some very mild flu-like symptoms. More information can be found here. But the virus can spread to your Central Nervous System and create long-term havoc. There are aggressive treatments but there are still no stats on recovery rates which really sucks. Prevention is wearing bug spray and screens…limited which is even more suckier. I hate wearing bug spray and screens are only as effective as the amount of doors opening and closing or how many cat claw holes you have. I know we can not live in a bubble but really it just not enough.

Well thanks for letting me ramble with the keyboard. Hope everyone has a wonderful day! Remember take time to slow down, breath, feel the breeze and sun on your face and cre8te something for you!

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Back on the writing bandwagon!

images-8It has been an really long time since I have written. I have not fallen off the planet, but have been challenging myself even further. Even though I love to write, there are many other things I have been focussing on such as creating art, graphics, starting a small very part time graphic design and creative life coaching business. I am unable to fit them all into my life at the moment. One day soon I will be able too! It is a goal I am working on.

My life has been changed since September to end of December. I had amazing energy, concentration and steps to move forward. I was able to attend  two craft shows and make for me a lot of goods. Christmas and the New Year were a success. I got everything done for the family, rested & played too! But then January 1st, I woke up with the worst cold ever. From January to now has been an interesting month. I have learned some takeaways about Hydrocephalus that I did not know before. Because of my new knowledge, I have finally decided to work with the Hydro instead of fight it in this case. Fighting it will only make it worse.

So What did I learn? I learned that if there is a stressor on my body like a cold or a completely blocked sinus (with a mass that potentially they think means trip to Foothills again soon) can affect the baseline of your hydrocephalus. So what does this mean.

fb_img_1443293628775My MRI showed that I had amazing flow. I love that my Dr. Sits me down and we look at the images. I love that he explains what I am seeing. He said the grey area where my hole from bottom of 3rd ventricle show cloudy grey. He said that was turbidity. I said “that is to be expected. When flow of fluid has to go from big space down a narrow tube – it speeds up – basic physics…you know my background before all this was science!:”  I almost knocked myself off my chair when this came out of my mouth. I was shocked as shit that my brain just pulled off something that I thought was long gone.  Nope just in hibernation waiting for my neural re-connection.

Distracted Side note Inserted here:

The black hole of my brain injury released some new information. Lately I have been experiencing this more and more…snippets of old knowledge and experiences pop into my head.  I wlll write a blog post of what I can compare this to in hopes that it can help fellow TBIers but their experiences into words.

images-5So my new baseline was how awesome I was doing before feeling cruddy in January. This means that until my stressors on my body…the blocked sinus thingy will continue to put negative stress on my hydrocephalus until it gets addressed. So in the mean time I will experience and increase sleepiness, tripping, falling, dropping (or accidentally throwing items), weird walking stance, numbness, tingling, head pressure, pain, and cognitive decline. I have been having a hard time figuring processes, and steps to getting things done again. Decline in remembering what to do with Adobe Illustrator again. I have been saying the wrong words for things more and more. For example for the last month I have kept telling the boys to put their laundry in the dishwasher.  

images-2You know that gets old quickly when you have two parrots who are like okay and start to put their dirty laundry in the dishwasher. My kids are jokers I say…but when I am stressed mentally with the weird symptoms that have popped up in my life, my sense of humour is greatly diminished. Actually irritability, and anger have popped their dragon heads up again so much that the boys have noticed. They joke that driving with mom is like “beepidty boop boop beeep” with the added family finger.

kitty-fingerI have been reassured that symptoms, although scary will go away once the stressor is fixed.

Let’s hope this happens quick before my control and filter completely disappears and I actually tell off a stranger who is pissing me off.

 


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Fatigue Tips – my ass

images (2)I remember when I attended a support group for ten TBIers like myself. The support group was run by two to three employees who basically ran it Nazi style by shoving their agenda and information down our throats. Instead of facilitating. It was interesting to be a part of in slightly sick and twisted way. I felt like it was a train wreck and I couldn’t look away. I really hated going as it was kind of embarrassing to sit through. It allowed for very little discussion and information was spoon fed to you like you could not understand. It felt that there was a us versus them scenario and we were the broken “thems”.

However, I know one of the facilitators and it was run with the best intentions, but from the intentions of a “normal” person. Because this person worked at a Brain Injury Rehabilitation place, she should have known that brain injury does not affect intelligence but instead affects other cognitive factors that can make us seem not intelligent. It felt like we were not respected as adults.

I remember that that one week of the eight week program was about fatigue. It really irked the information fed out was that fatigue was our fault because of exercise, motivation, eating, and sleeping habits. The suggestions were all well meaning but fucking utterly useless and made me angry that Brain Injury workers had nothing useful to give use. Everyone went very quiet in the room and looked down. There was anger, defeat and pure frustration oozing from everyone. I really didn’t like the suggestions because each one was more of an assumption that it was your personal fault for the fatigue and you were not working hard enough to fix it.

For example, you are experiencing fatigue because you do not exercise enough, eat healthy enough, do not have proper sleeping habits, not motivated etc…. We were not all newbies with our TBIs we have tried all and continue to try to use all the techniques but still are experiencing issues. When I asked about medicines. We were not encouraged to discuss what meds or techniques have worked for us, the TBIers, I was not able ask any of my fellow warriors. We were told that we had to discuss anything with our doctors. Doctors are human and sometimes at a loss too so hearing what other doctors have tried with other TBIers is very important.

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My fatigue level ranges from moderate to the extreme fatigue all the time, even with my awesome new meds. It is no fun, but mid day rests are still mandatory in my life. My energy levels fluctuate throughout the day like anyone else’s but they may wane and fluctuate way quicker.

Fatigue is defined as:

fa·tigue
fəˈtēɡ/
noun
noun: fatigue; noun: fatigue detail; plural noun: fatigue details
  1. 1.
    extreme tiredness, typically resulting from mental or physical exertion or illness.
    “he was nearly dead with fatigue”
    synonyms: tiredness, weariness, sleepiness, drowsiness, exhaustion, enervation,languor, lethargy, torpor, prostration;

    war-weariness
    “his body was slumped from fatigue”
    antonyms: energy
    • a reduction in the efficiency of a muscle or organ after prolonged activity.
    • weakness in materials, especially metal, caused by repeated variations of stress.
      plural noun: fatigues
      “metal fatigue”
    • a lessening in one’s response to or enthusiasm for something, typically as a result of overexposure to it.
      “museum fatigue”

images fatigue-symptoms

600px-Signs_of_fatigue pain sc TR_6_1 fig 1

TBI fatigue is often very hard to manage and is often a long-term affect when adapting with a TBI. I still have a hard time dealing with fatigue. I loath being fatigued. I really could not explain it to anyone until a friend of mine with Lupus posted The Spoon Theory by Christine Miserandino at www.butyoudontlooksick.com. It is the easiest way to explain to anyone about chronic conditions and fatigue.

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The normals methods to help with regular fatigue such as exercise, cutting caffiene, cutting sugar, eating healthy, and reducing stress do not work for TBI or other chronic conditions. I was going to write down my own list of suggestions to help minimize fatigue in daily life, but I found a great blog post by a fellow blogger and TBIer. Simple Tips to Manage Fatigue with Brain Injury, Memory Problems, and Chronic Illness to Self Rehabilitate

I am will not waste my precious energy re-inventing the wheel when this article has some awesome advice.  Cheers to the days with extra spoons and Boo to the days where you boom then bust.