Howdy Hydrocephalus

Understanding my unique gyroscope


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Building Endurance

This year is all about my spoons. I am taking great thought and consideration in my daily activities and routines…okay for the most part. I have only a couple over did it days in the last two months rather than one or two a week. I am feeling positive that if I keep this strategy up, I will see more improvement.

So how am I doing this? A variety of ways.

  1. I bought four Echo Dots for the house. When I first saw the ads on TV, I wasn’t too sure it would be right for me. I spent a couple weeks surfing the net and finding lots of great information such as this article sharing some of the benefits that assistive AI technilogy can help people with various abilities. I was not getting any help with the local brain injury clinic so I took the plunge and bought four. Each boy has one in their rooms; there is one on the mainfloor in kitchen and one that travels with me in the car, at my studio and in the master bedroom. The Echo Dot helps me keep organized. 20180208_110948_HDRIt will tell me my missed notifications and what I have upcoming. I can set various alarms such as to wake up, eat, medicine, drink, pick up kids, remind kids have shower etc…. I can drop into the boys rooms and tell them it is dinner or they need a shower. I can make lists by telling Alexa “to add…to my list”. There is so much that it has helped me with but I will need an entire blog post to tell you about my discoveries.
  2. We got a family membership at the local YMCA where I have been working with a friend who is a personal trainer. She has introduced me to TRX suspension workouts. These workouts are great because I do not have to worry about falling. I use my own body weight and do a short body workout…ten minutes so I don’t overdo it and spend two days in bed. With her help I have begun jogging again. We walk one lap and jog two laps for 15 minutes. I was scared to get running shoes because they always had these overhangs with the sole acting like a heel so I would lose my balance easily. However, after much searching I found the perfect running shoe and love it. It is light and doesn’t have the heel thing so I feel secure. It is a Nike running Shoe that even fits my narrow feet awesome. I was so happy to find a pair. When my friend is not with me, we found out that an eliptical machine is the best machine for me. I can monitor my heart rate and hang on so it makes falling off less of a chance. I am supposed keep my heart rate at 145 bpm so I don’t hurt my head. I use a FitBit to help with running and the rest of my daily routine. I don’t have to scroll through all the screens to get to continous heart beat like my previous fitness band. I almost fell of the eliptical about ten times because I kept trying to monitor my heart rate. Now all I need to do is either flick my wrist for screen to light up and there it is! Easy peasy:)
  3. The third major routine changer is bring back my wall calendar and paper calendar. I now function with my digital calendar, wall calendar and paper calendars. I use a Daytimer 30 day wall calendar.  This calendar sits right beside my laptop computer20180208_110921_HDR

The other side of this calendar has a 60 days. I used that only before and hated it because I can not write small enough. Now I use the 30 days side can almost fit most things in. Above is my calendar and it is not filled out all the way. I use different colours of  ultra fine dry erase markers for each family member. It has been working awesome. 20180208_112629_HDR.jpgI also use two two Blueline miracle bind books. One is a weekly calendar. that gives me room to jot down everything and goes to 8:30pm and we have a lot of hockey or volleyball at those times. The second is the teal book that is undated note organizer with pages that can move in and out of book or into different sections based on my notes. I use my Google keep for mostly links and other stuff that I find interesting, but I can not put anything else on it as I will forget to look. The teal book comes with me everywhere but my planner stays by my computer so I won’t lose it.

4. I forgot because I now carry so much stuff to keep myself organized…I needed a bag to fit it all in. I am not a purse person, but when I do I use a crossbody bag. Even then if I put it down, I may forget about it and walk off with the bag lying on a restaurant or hockey rink seat. I began my search…there were bags that were too small,  too fashionista for me, or way too large. After about two weeks I took a chance on a leather backpack that could fit my ipad, apple pen, keyboard, wallet, phone, sketching pad & pens, phone charger, water or coffee container or both and a snack or two. Often it carries hockey balls and hockey tape as well! This leather backpack did not break the bank and looks nice enough I could wear it out to a restaurant. It is big enough that I have not forgotten it anywhere…yet!

Of course I am working on a bunch of other stuff too but this post has taken up a lot of my time today and I still have to put five listings on my Etsy store. It is called Crowsnest Cre8tions and I make downloadable posters and graphics. isla_280x280.29169110_36m4np9q I haven’t made much money yet…but slowly I will get there too! If interested in earning free listings and opening up your own online store. Check out Etsy here.

Disclaimer: The blog is a documentation of my life living with Hydrocephalus and Brain Injury.  It is not professional advice but tools and techniques that have worked for me via trial and error under the guidance of my medical team. Everyone is different and what works for one person may not work for another. Consult your medical team. The links above contain affiliate links. This means that at no additional cost to you; I will earn a commission if you click-through and make a purchase.

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Chronic Pain & TBI

Chronic Pain is a beast. It is not pain from over doing it at the gym, lifting heavy objects or mountain biking, it is pain that does not respond to over the counter medicines and it is often brushed aside by stating that the pain is “psychological”. And when the pain doesn’t go away or get treated, your life can begin to unravel quite quickly. Sleep, cognitive, concentration, appetite, daily activities are negatively affected when chronic pain is not treated or under control. This then leads to anxiety and depression that only add the nasty mix and do not help in day to day living. Because your energy is now taken up by doing everything in your power to accept and move through the pain. You breathe, continue with limited activities, say affirmations, think positive, try herbal supplements and anything and everything that people suggest to try to find some relief. Until it all becomes too much and then you sink into that pit of despair because all the tools in your tool box no longer work. You question worth, value and place here on earth. You can not handle the feel of clothes on your skin, or even someone touching your. Your body is so inflamed that you are old beyond your years. You do not go out because any activity is no longer easy or fun. Joy and happiness are suck from your soul as you are bone weary with every move. You calculate how many years left and if you have the mental and physical strength to actually continue to be here in this pain every day until die. You start to think of ways out…anything to just get rid of this damn pain.  This cycle will repeat itself until….

You finally find a Doctor who understands that chronic pain is real and begins to treat the pain. There is not a text book type way to treat chronic pain. It is more like experimenting with different treatment options until a positive response is obtained. This approach takes time, patience and sometimes putting up with a lot of side effects from different medicines. 

My chronic pain is two-fold; the 24 hour a day migraine with the added bonus of cluster-like headaches that feel like ice picks through the eye. This pain is never gone but for the most part it is managed. The second part to my chronic pain is my neuropathic pain due to nerve injury or nerve mis-communication and response to pain. This has always been on the right side of my body. It feels like burning fire ants, burning and shooting pain that is continually there. Between my knee and ankle fluctuates from burning to feeling like wood. I have had this for five years and it will always be a part of my life.

However, last November, I went off my Pristiq because I told the Doctor that I was doing well and that I was not depressed so I didn’t need it. So I went off the meds.  Then comes January to March where I begin to lose it all. My Neurogenic pain is not just on my right side, it was on my left side too. My chest felt like it was on fire with the flames flickering upwards to my neck and nose. I was worried. My skin was horrible. The itchyness I had on my arm, chest, legs and back was so bad that I was looking like a meth head with open cuts.

Turns out that my Pristiq was not for depression but for my neurogenic pain. An off label use for it…oh didn’t know that. Thus my brain doctor will continue to see me because she just rocks at figuring out what the hell is wrong with me when no one else gives a shit. Also she prescribed this awesome cream that does not contain steroids but instead lanocain and gabapentin to help topically for my pain. Also endless itching is also from neurogenic pain. The nerves are just all messed up and sending weird signals.

So now my pain is not through the roof. It is not 100% managed yet…still annoying as hell. I really do not like the way my chest feels but I really have no choice but to accept it. I hope we can still find a better management solution. I am looking forward to my June appointment to see what my next trials will be.


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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.