Howdy Hydrocephalus

Understanding my unique gyroscope


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Oh Sleep how I missed You!

For over the  last five years I have suffered from inadequate sleep from my crazy re-wired brain. Sleep is one of the most important activities to allow your brain to heal itselt. That is why patients are given sleeping pills in early part of the healing process.

After that you given suggestions to help with proper sleep hygiene.

This often include:

  1. Limit naps to 20-30 minutes. This makes sense on paper…however when you are fatigued and sleep-deprived you nap. When you dealing with a life long chronic condition and need to use the spoon theory to survive and educate people you nap. I really don’t think the regular doctors understand. Limiting naps may work for the “normal” person who is going through a small patch of insomnia but for us Spooners naps are the bridge to help us make it through the day.
  2. Limit caffeine consumption. I love coffee and I still have my coffee everyday. Coffee has often held off migraines for a short period of time for me so there are benefits to still drink it. The only thing where I limit my coffee consumption  But I do not have coffee past noon. I do not like decaffeinated coffee and often caffeine free tea gets a bad rap. However, I found a few teas that I just love. These teas taste hot or cold and you do not need to sweeten with sugar. My current favourites are Celestial Seasonings Bengal Spice , Celestial Seasonings Ginger & Turmeric Tea and Tetley Blueberry Ginsing tea. I tend to like the spices that make me feel warm and cozy.
  3. Exercise daily. This is a very hard one to do when given a new life with a chronic condition. Prior to surgery I was very active – runner, Tai-kwon-do and I worked outside so I was fit and had lots of muscle. After surgery I wanted to exercise to my previous level. It basically took me up until recently to understand it is not the amount or intensity that matters. I can exercise for as little as ten minutes. I love how I feel! I use a wooden balance board to help with my right side and core. I also use the yoga half ball with handles. I started with resistance bands without handles but now prefer resistance bands with handles. I also walk not run!
  4. Get enough sunlight and darkness. This supposedly gets the sleep-wake cycle back to normal again. I live in Canada and the weather can get horrible in the winter so I use a Light Therapy panel. This is blue light which gives me headaches but I wear tinted prescription glasses all the time to alleviate. I also take higher than average doses of Vitamin D as prescribed by my Doctor. If it summer one fun way to baseline your sleep-wake cycle is to go tenting for three days with no electronics.
  5. Don’t Eat or Drink too much before bed. Avoid the foods that cause you upset stomachs or build acid. Too much fluid may cause you to get up numerous times a night disrupting a good night’s sleep. This is a very personal thing and experimentation is needed.
  6. Relax before Bed. This means different things to different people. Some people chill in front of the TV while others read. Some do Yoga or Meditate. I often read and listen to diurnal Beats or Meditative Music from Amazon Music. We have been Amazon Prime members for years and love it. Try Prime Membership  Amazon Music, Video and Photo are some of the benefits. not to mention the awesome shipping times. This saves so much time and energy.
  7. Create a Good Sleep Environment. When I first heard of this, I was thinking WTF. Well we don’t have a TV in our room. My hubby watches his shows with headphones via his tablet. I spent almost two years trying to find a pair of wireless headphones that would work for me. I found a great pair of reasonably priced wireless noise cancelling over the ear headphones that fold with comfy foam and fit my head in all the right places. I don’t watch TV on my tablet, but I do read online books and listen to diurnal beats to relax and fall asleep. The biggest thing that I love is my how my Apple Ipad has a night mode so I am able to read without all the blue light. I also love how I can turn down the brightness and also change my books writing to grey. No one can see my screen at night except me it is so low and with a muted amber glow. I am so sensitive to light that having all these features allows me to comfortably read and relax. Setting the room temperature for proper sleep is very culture and personal dominant. However the bestest Christmas Gift ever was from my hubby. I had read about the benefits of weighted blankets. He bought me a single sized 15lb blanket from YnM and I have been sleeping throughout the night. It was a Christmas Miracle.

I have been sleeping like a baby since December 25. Except when I didn’t bring my new favourite blanket to Coleman for five days. Next time I will haul it with me. I have been extremely grateful and appreciative to have sleep back in my life.

It has made me think clearer and be more productive…okay I am still a squirrelly mess but I feel like I am being more productive as I try to stay focussed.

So I am very grateful to a wonderful start to 2018. I can see so many positive changes happening especially with having a solid night’s sleep!

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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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.


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I’m Back

Wow this summer has been one wild ride. My pain levels have been managed with my new med mix. This left me with having energy but with a brain with racing thoughts, low attention and a go-go-go never stop type until you drop type of mentality.

So I just let everything go and enjoyed just being able to actually be a apart of life a lot more. I had a fun summer with the boys. We had no routine, schedule or things planned other than our trip to Vancouver Island.

The boys ran crazy; they were a part of their own wild thing type of clan. I have no idea how much they showered (if any); when or what they ate (probably mostly junk food); how many hours of video gaming (The gaming machine did not overheat); how many hours of hockey, football, basketball, swimming or lacrosse (garage door & car dents accounted for). It is all a blur of running boys, inside outside upside down with a trail dirty cups, spilled popcorn, granola bar wrappers, shoes, wet swim suits and piles of dirty laundry and hidden smelly socks in various furniture.

I was unable to sit down and write. I physically could not site still to read, draw, let alone write. I really wanted to share this summer. There were so many obstacles that I have finally overcome. But my TBI brain wouldn’t allow me to focus on intelligent conversation, sustained attention and unjumbled thoughts. I am glad that I let my body adjust to the meds and let things come back to even keel as now it is mid October and I am able to sit still long enough and write. I actually did begin October 2, but I have no idea where my draft went…somewhere floating in some random person’s email probably.

Then my son broke his leg October 3 and we have been adjusting to that. Talk about mess up my morning routine (LOL) I do my best and some days we are on time for school and others we are not. At least I haven’t forgotten a kid yet.

I passed my 3rd year brain surgery September 4 and my first year Steven-Johnson’s Syndrome (SJS) recovery September 5 with some major recovery milestones. Pain mostly controlled. I still feel tingling and fire ants on my right side. My right side aches when I do too much. I can live with that! But I am doing oh so much more. I still require my naps to be functional, but they are not all day naps unless I go hard core non-stop for a bit. I can live with that! I still get headaches and migraines but they have an beginning and a end rather than a continuous pain that doesn’t end. I can live with that!

I still have sensitive skin, itchy skin and rashes still. I am hoping we can get a handle on this as I hate having lots of cuts and scabs on my arms, legs and back. I am looking like a drug addict. The intense itching really bugs me. I am glad that my mouth only gets irritated once or twice month. I can even floss my teeth now. It takes a lot of energy not focus on the itching. At night it is really bad.

Believe me I am ecstatic about all the positive milestones in my recovery and I don’t focus on my annoyances of this recovery, but i still one not to settle. I am beginning to focus on my next milestones. Sustained energy and steady cognitive improvement. I can see work in the future. I have no clue what type of work, but it does seem more obtainable now!

So I am back not only from my break from writing but I AM BACK to land of living instead of sitting on the sidelines. It just makes it easier to live a meaninful life when not in as much pain.


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Speedy summer

july2015kelly 115I have been having a really busy summer. My house has been a whirlwind of boys running inside, outside and upside down! There have been video games, television on constantly, talking, tablet playing, hockey, trampolining, swimming and that all going on in my visual/hearing area. It has been a very sense stimulating/over stimulating summer. However, so far I have not only survived, but thrived. Meaning, I haven’t completely melted down yet…okay was a little edgy at times when I was getting over tired. Now I am trying to figure out a new nap time.  It has not been structured, but more of a free for all, as I can’t seem to find an early morning rising time. Lately, it had been 9:30 am and that throws everything off.

I have been feeling progressively fatigued including more breakthrough pain for the last couple of weeks. I am wondering if my Botox has begun to wear off and the Nabilone can’t handle that all by itself. I really hope that it is just that simple. We find out on July 27 when I go to Calgary to get another set of shots. I am definately not getting anything done that I wanted to. I keep trying to do a to do list, but keep forgetting and then spend my morning functioning time trying to remember what I needed to do. It isn’t bad going with the flow. Just the boys and I will have one heck of a time at the end of August trying to get a schedule going again. Showers..dinner…studying…bed..whaaaaaat! I can hear it now. Maybe they will be so tired, they will like having a routine.

july2015kelly 094We have had some summer weather that has made me feel a little yucky still but overall a million times better than before. Because my visual, and hearing stimulation is continually being challenged this summer, It has affected my thinking and processing. I have no idea what happens to my day, but it does slip by quite quickly. I am beginning to feel like a walking zombie again but that could be because I have been getting the RV ready to go again. It is so hard to try and do. It takes me about ten days and then I still forget stuff. I have a list and everything but that doesn’t help if I forget to use it. Here’s to a wonderful summer free from pain and crazy brain quirks to you!


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The battle between a clean deck and empty energy tank

IMG_3591This was my battle and I won. You would never think that a deck could be so sneaky and ninja like could you. But for a person such as myself recovering from a TBI/ABI with major fatigue issues a clean deck can be a nasty fight. First off, I actually “noticed” how grubby our back deck was. I wasn’t distracted by pain or other stuff that can “blind” me to seeing how the world is around me. Second, I moved all the furniture out of the way and then I cleaned the deck by mopping it. I also conquered the deck from start to finish in one go; not my usual family frustrating chain of events.

That does not sound like much to most normal energy people, but this is an amazing step for me. It turned out that the deck is not tan, but really grey. It looks so amazing except for the three steps I forgot to clean on the one side of the deck. Can’t expect perfection when progress has finally started to show up. Oh well – a person can compare colour differences more easily now. I am so over the moon with my new found energy! My progress is blowing me a way every day!

This how cleaning a deck looked like for me for the last three years. How in 33 short steps and a couple months you can have a clean deck when you experience TBI & fatigue issues

1) Jump in and start moving deck chairs

2) Realize that you have blocked yourself into a corner.

3) Move Deck chairs again.

4) Go upstairs and lie down. Head is spinning and no muscle strength

5) Get distracted with something else

6) Forget about half moved deck furniture

7) That day to two weeks later…finally remember that you were going to clean the deck

8) Move the rest of furniture.

9) Go upstairs and lie down. Head is spinning and no muscle strength

IMG_359210) Get distracted with something else

11) Forget about all the displaced deck furniture

12) That day to two weeks later…finally remember that you were going to clean the deck

13) Look for the mop & mop bucket. They moved with us..right!?!

14) Look for floor cleaning solution. We had a big bottle somewhere

15) Arrange all outside & then go upstairs to rest

16) Go upstairs and lie down. Head is spinning and no muscle strength

17) Get distracted with something else

18) Forget about the filled mop bucket with cleaning solution

19) That day to two weeks later…finally remember that you were going to clean the deck

20) Mop half the deck into a corner

21) Re-mop myself out of a corner

22) Go upstairs and lie down. Head is spinning and no muscle strength

23) Get distracted with something else

24) Forget about all the half mopped deck

25) That day to two weeks later…finally remember that you were going to clean the deck

26) Finish mopping deck and start to move back furniture

27) Re-mop deck as there are dirty streaks from moving back furniture

28) Go upstairs and lie down. Head is spinning and no muscle strength

29) Get distracted with something else

31) Forget about putting away mop

32) That day to two weeks later…finally you remember that the dirty mop & bucket is still outside

33) Look around and think…I need to relax out here more!


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Building Yourself Up

Okay I admittedly ran myself down and it has taken awhile to be at 50% function. The erratic spring weather changes, Chinook winds and lack of sleep have not helped in speeding up my recovery. On Easter weekend a blister formed on the inside of my mouth behind my top six teeth. I really didn’t think much about it as my flares for SJS (stevens-Johnson syndrome) had eased and my hair had even started to stop falling out.

PassTheRibbonTwo weeks ago, a Facebook friend, SJS survivor, and SJS advocate, Julie McCawley developed a very bad flare. I think that Julie’s mom started Stevens Johnson Syndrome Foundation in 1996. In 1994 at ten months of age, Julie McCawley was diagnosed with SJS and has been fighting this battle ever since. I looked at images of her flare and felt her pain. Her flares are much more drastic than mine. But she is a strong woman that inspires many people who are also facing SJS.

Two days ago, my lips felt like they were burning and peeling even though I was putting on lip balm and drinking lots of water. Yesterday, my hair started to fall out again and sensitive skin behind my neck. Later that day I find a couple little round blisters. They are small with red and purple in the middle and my sensitive skin is itchy. Great time for the Benadryl. I guess with being run down, my immune system took a hit and I am lucky to have a little flare.

I guess I could have predicted it coming. I was feeling run down, fatigued, headachey and in a bit of pain. When I feel like that I don’t necessarily take my vitamins, eat right or feel like taking care of my self. I know that is when you should be taking care of yourself the most, but I don’t always have the energy to when I feel like crap.

So my goal this week is to build myself up – start taking my vitamins, rest lots, exercise a bit, eat healthy. I will try to take it once step at a time. Hopefully I will be back up and running shortly. I have lots to do! When you are feeling down or out of sorts, what do you do to build yourself up? Any suggestions will be helpful. Maybe I am missing something in my diet. I know that exercise for me is a bone of contention. I want to do some but then end up toasted. I definitely need help there as I am becoming a chunky monkey like my dog. I am becoming limited on wardrobe choices.


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I Survived Spring Break


On Easter Sunday, my friend, her two children, me and my two kids took off to Cypress Hills Resort at Cypress Hills Interprovincial park Saskatchewan side. We rented a three bedroom cabin for approximately $130/night. But even better was the buy two nights and get the third free.  Sweet! great trip for us budget minded moms. First off, it was the longest I had driven and I was a little nervous. It was not only the nap before leaving; coffee and sugar that made the ride smooth, but also the road conditions. In Medicine Hat we woke up to to an inch or two of snow, but in the Hills there was a record snow fall of 1.5 feet of snow.

Before leaving, I quickly packed winter gear and sleds. Yup I am writing about my journey with a brain injury and all my photos show sledding without helmets. Let’s just say that the brain injury got in the way and I forgot some important stuff. No way was I going to get beat up by four kids so they went sledding on our third and fourth days there. There first two were very chilly but fun. The snow was super soft, melting quickly and we were the only people there sledding.

It was a great time, we played card games, charades, drew, read, and the kids played minecraft on their tablets. Us mommies on mommy time drank copious amounts of wine. Yes I have a brain injury, but I am allowed to splurge on negative brain influencing behaviours. I re-discovered white wine. It has been forever since I drank white wine.

We went on lots of walks as a group. The kids played outside without us. I had my two hour nap every day! We had a great time, but on our fourth day, I thought I packed up all my stuff in the vehicle, I forgot food in the fridge and cupboard. Oops! Then instead of driving home right away, I went on the hunt for moose to take pictures. Got a couple shots of deer but that moose always evades me until summer.

The drive home was bad. It took everything I got to keep my attention on the road. I was exhausted but knew that Chris was at home off work for the next six days so I would be able to rest up and recover. However, I was wrong about the recovery time. Chris’ mom was having urgent health issues that required him to fly to Newfoundland right away. So he left Thursday. The boys had a sleep over on Thursday night; Friday I took the boys to the skatepark. Saturday & Sunday I really do not remember much except Chris was back Sunday night exhausted 13,000km in a few days was a lot. Monday I don’t remember much. Tuesday, I went to my son’s grade three class and did a presentation on photography composition. Then they all got to go around and take photos with their Ipads. I hit the wall after that. My right side was all tingly, numb with imaginary fire ants marching everywhere. My right eye and perception started acting funny. My usual head pressure/pain intensified with the feeling of a kitchen butcher knife at my surgery site and an ice pick through my right eye. The pain is intense that you no longer feel it but just feel sick to your stomach.

It is now Thursday and I am feeling a tad better, but not really. I have been getting up in the morning getting kids to school then going back to bed. I have been using my oils, but nothing else. I need to start up my vitamins again. I just got out of bed at 1:15 feeling like I should write, but now I am going to crawl back to bed for one more hour.

I would not give up my spring break for anything. I had fun. I pushed my TBI boundaries and Yes I will be most likely paying the price for the next week; I am glad I did.