Howdy Hydrocephalus

Understanding my unique gyroscope


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Acceptance

There is a large tribe if TBI/ABI/PCS (Tramautic/Aquired brain injury, post concussion syndrom) on Twitter. We tend to like online social connecting sites becuase when we are feeling like shit, stuck in bed in a dark room these sites may be our only source of connection to the outside world. I remember, I had relied on social site for four months once. I could barely get out of bed without feeling like I would pass out.

6181aee523d4e4937731bfac6e6b48bcThere was this post “How do you cope with TBI/PCS symptoms?” yesterday. Now this may seem to an easy answer for those that are clinical…look it up on the Net and list off…rest, eat healthy, follow your medicine, blah…blah…blah. However “How do you cope with TBI/PCS symptoms” answer is not so simple. It is really a big whoop ass can of worms.

First off people who are “normal” will just say here is a list just follow it and you will get better. These are innocent, well-meaning people who really have not walked this journey before but instead are taught what to say and do.

f118d7a457ea10f91cc29d9648c1df35When you are knee deep on this new life adventure (so much nicer to write than sucky life-long condition) is to grieve. I mean grieve the loss of who you once wore. Believe me this is not easy at all. I am over three years in and I still grieve.  I still get mad and frustrated at where I am that it often clouds how far I have come.

I mean who wouldn’t want their old life back where everything was easy peasy; thoughts swift & quick; anyltical skills and crital thinking intact; planning & organizing there; coordination; strength; energy to work, look after family, have hobbies & social life at a moments notice and above all live pain free…But I am not that person anymore and I accept that I am not that person most of the time.

cf07f453bef187cb4c57a7e706c33b45So we have our pity party for a bit then I mentally kick myself in the ass & my drill sergeant tencacity kicks in. I mentally say suck it up sunshine; usually something about not quitting and other motivational stuff to get me out of a funk. I take responsibility for getting myself out as no one else can except me.

  1. I read motivational pictures & quotes images
  2. I watch motivational videos. Unbroken or Why do We fall
  3. I read Motivation Facebook Group Bright Side or website Elephant Journal
  4. I focus on anxiety reducing activities such as breathing. (I do alot of this)
  5. I remember I how I have come. The challenges that I have overcome.
  6. I focus on the positive. It really becomes easy after a while. For example, the biggest positive is that I get to become a new me. I am learning what I like and don’t like. I get to experience things for the first time that were old hat for me. Trying foods to see if I like or dislike etc….
  7. I move forward.
  8. But above all I am grateful. I am grateful to re-write my life. I am grateful that I have learned alot about myself with the journey. I am grateful that I am here living. I am grateful that I have found who my true supports are. I am grateful for a new approach to living. I am grateful to explore each day with new perspective (literally & figuratively). I am grateful that my kids are hopefully learning about compassion and empathy (no zombie comments lately – LOL) I am greateful allowing myself to fall & get back up again. I am grateful that I am able to express myself via writing and art (verbally and body language not so much). I am grateful for the opportunity to start fresh each day.

So really to “cope” is not simple there are many emotional and mental steps. There is a lot of time needed. And I didn’t even include all the physical, organization, planning steps that you learn via OT (occupational therapy) that help you function. This is a vast black hole of a subject that just can’t be thrown around in a black & white fashion. It is more of a comfortable grey blanket.

 

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Feel-good strategies for managing chronic conditions

I have practised the art of gratitude for a number of years now and have used affirmations since I was a late teen. I graduated from my therapy about this time last year. I have continued to learn and practice the art of being happy, being in the moment and living with mindfulness.

I tend to still do too much and get hit hard with the fatigue. With the fatigue, I feel the guilt from family and with that creates an emotional downhill spiral. The same sort of thing happens when trying new meds. You take a long time tirating up in hopes that your body responds positively. But if the drug is not the right one for you; you then have to endure the nasty side effects as you tirate down only to do it again and again in hopes that you will find the one combo of drugs that actually works for you.  If you didn’t have some strategies to make you feel good, it is easy to feel angry, bitter, depressed, helpless, inadequate, worthless and all those other negative feelings that take up a lot of time and energy that could be re-directed elsewhere in your life.

Over the last year, I have been putting a lot of strategies into practise and have noticed it paying off. For example, mindfulness slowing me down. I am actually thinking “do I really need to do this…how will it impact me…my family…etc….” I have recently began adding more creativeness in my life by trying to do art more frequently.

All these activities sound like nice frou frou fanciful recreational only type things. However for a person with a Traumatic Brain Injury (TBI) or Aquired Brain Injury (ABI) these activities are crucial for developing new neural pathways for recovery. They work on both emotional and executive function areas.

I am addicted to all those affirmations that you find on Twitter, Facebook or other numerous social sites. I know that people scoff at them and find them annoying but I love them. If I read an affirmation that I like or that a friend of mine might want to read I save it on my phone. Whenever, I am feeling down, or overwhelmed, I scroll through my file folder. It doesn’t take many files before I am feeling better. This slows me down enough for me to remember to breathe, clear my head and re-direct. It allows me to pseudo-meditate as I focus on listing off in my head what I am grateful for in my life. It allows me to then see if it is worth it to spend my energy feeling the way I am. Sometimes yes & sometimes  no.

I know that some people do not believe in creative, gratitude, happiness or laughter methods. No these activities can not replace medicine for your anxiety or depression, but can be used in conjunction to help cope with stressors in a positive or proactive way. When you have a chronic condition or invisible illness you fight with negative emotions everyday that can spur from pain to not feeling included in your community. No one wants to be a perceived non-productive member, or to always be in uncomfortable or in pain or sleep deprived. We all want to be included – even in small ways. We all want that range of motion or more of those days where it doesn’t hurt physically or to have the good days outnumber the bad days. We do not want to choose between a long list of “have tos” and commitments because the tank is running on empty. Practicing gratitude, creativity, happiness and laughter methods help me to not be enveloped in a sea of black and negativeness. This is where the “fake it until you make it” can really come in handy. A change of perception can do wonders. Here are some affirmations that I have grabbed from my phone. Enjoy & hope you feel better after you read them.


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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.