Howdy Hydrocephalus

Understanding my unique gyroscope


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Missing Me

For the last month and a half a series of events accumulated for me creating the ultimate pity party for missing my old self. This reached it’s peak and dissolved mostly when my son re-broke his right leg again. He broke it the first time in October during hockey assessments and the second time at the last game of year in a tournament last week.

So what led up to me missing my old self? Me missing the old me has never gone away. I was so much more than what I am now. I was an adventurer, I had endless energy, like to keep busy all the time from morning until night. I was raised to be a strong independent person. I was not afraid to use my brain, my voice, reason and research to get my point across at work and in life. I had two little kids that never knew that they accompanied when I had field work. They thought we were always out for a drive. My kids were to young to remember the old me. They only see me as the “lazy mom” who sleeps all the time. Usually I laugh it off, but lately, it has been hard to laugh off my quirky new me.

I am a lot different now. I am Skinnier than I was before by about 15lbs but I am 1000% times weaker and 1000% fatigued where when walking up stairs, I lose my breath. I am no longer spontaneous, I have to plan and allot my day so that I can make it with the least amount of napping as possible. I have to plan my day to minimize my visual, auditory stimulation, so I don’t get overwhelmed. Sometimes that requires me to do odd things, like move to where less peaople are, leave or just not go at all. I easily forget what my intent was for shopping, even with a list. Often I will forget the same item on the list five or six grocery trips in a row. I just misread the word or don’t the the word. I try to understand group conversations but honestly, that takes a lot of work and usually am behind in process in the conversation so that when I talk, I am behind. My anxiety goes off the charts in the new situations with people. My mind goes blank so I don’t remember what I am going to say and my stutter comes out.

So what led of to not being patient about the new me and missing the old me was seeing people from my past and then socializing with new people.
I had three bosses. Two I was very close to and both their wives were just awesome. I say 2nd in command’s wife at a local store. We were chatting about paint chips and colours when she said “Don’t you recognize me?” Awkward is all that I felt. We chatted for a bit and I left.

Then two weeks later, I saw the company founder in Canadian Tire, we were both looking at the seed growing trays. He gave me a big hug and we chatted. He wanted to know about my health but at the same time, you could see the sorrow in his eyes and he really didn’t want to talk about my health. Then I got his wife’s name wrong and we parted ways. When we were talking, my vision started to get all wavy like aura’s for a migraine. I made it out to the car and rested for a bit, because I thought I was going to pass out. After this I felt physically horrible for a few more hours.

I then got my recent neuropsych report in the mail. That was no picnic to read. It is hard to read that I have neurocognitive impairment typical of Hydrocephalus Squellea. I started to feel so crappy that I began to visual journal to help boost my spirits.

A week ago, I was thrust into my first ever hockey parent away tournament. The social anxiety got a hold of me more than a couple times and there were awkward moments, bouts of word finding, stuttering and complete mouth hanging open zone outs, but I survived. I had a fun time…socialized, drank some ciders and beer and got to know some great people. But so very very tiring. I didn’t get my rest in and my functioning was near empty when my son broke his leg. I spent so much time recovering that the Easter Bunny almost made a big mistake. I had thought I had bought Easter Candy so when hubby and I went out, I said we didn’t need much. So when I checked the bag of stuff I had originally bought there was only two Easter Bunnies. I raced out the the store last night around 7:30pm to scour the empty shelves and peruse the Easter Aisle in hopes to get more Candy for the two kidlets and our two international students. CRAP….today I remember that I never did buy much because we were to be in Vancouver for Easter. So problem adverted right.?! I stocked up on candy…now we have enough to little eggs and jelly beans to last until summer. I fall asleep, D crawls in bed with me while Wy and hubby are downstairs sleeping. At 1:30 I jump out of bed….crap…the Easter stuff needs to be put together and hidden. So for an hour…I am trying to hid candy with a restless broken leg kid on the living room couch who is sitting up in his sleep, calling out and I am ducking behind chairs, doors and the kitchen Island. All I can say is that morning came too quick and I have had a lazy lazy day of reading, sleeping and eating chocolate.

We did have turkey for dinner, but instead of a full turkey, I got one of those box turkey breast rolls. Kept it easy and it made a world of difference. So the events of last week kicked me out of my own personal pity party and I am glad. I am sure they will pop up again.

It is just so hard because people you used to know…know you for when you were so much more. Now I just don’t feel whole. I am grasping,,,cringing when I respond that “I am a stay at home mom”…my bias and self-loathing running in my head. It is not like it is really popular to say “Hey I am one of those lazy people on CPP disability who should just get out and get a job” It is currently a rough economic climate so when people spew their frustrations, I am unknown to them usually a part of the lazy crowd. I just keep quiet, but you know it still stings. Doesn’t matter even as an adult, when people are mean spirited or cruel it still hurts. It is hard when the people around you also get tired of “supporting or caregiving” for you. They don’t like the added responsibility of picking up slack. I just can’t get anything done. I forget I was working on organizing my passwords, I forget I was working on a business plan, I forget to cook…I just most likely get distracted by other stuff and short term memory loses it. I forget what to do for my day unless I write it down the night before. A week later, I will not remember what I did.

So I am glad for the helping distraction. I have learned this week I still really like my art and creative making because I missed it so much. I also have enjoyed helping my son quite a bit. It feels good to be wanted and useful. I guess I will continue to take the good with the bad with a smile on my face and eventually, all will fall into place. When you fight for stuff and keep getting walls, then maybe that is not an intended path so I must continue to remind myself to be open and allow grow and move forward on it’s own. And yes to my lack of patience…it will take time. GRRRRRRRRRR!

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Lost in Time

IMG_3058I have been preparing art for adjudication for an upcoming Art Club show at the Esplanade. I am using my self-portrait after brain surgery that I made last year. I also made three other pieces two other mixed media and one woodblock print. I barely made the deadline Saturday. I am proud that I was able to get them in.

So how does a person with a brain injury get some art done. Well I obsessed and thought about what I was going to do for months. I am not writing about just thinking of what I would like to do, but it consumed my thoughts. Then once I figured out what I was going to do, I became distracted with other things that I do not remember but one was our moving houses. An email reminded me about the show, so I went about gathering the equipment, hardy board, Styrofoam head, magazines, paper shredder, and rope. I was on a feverent roll of action so I tried to use Vaseline on the Styrofoam head and paper mache in hopes that I would be able to use the head as a mold and remove the paper mache from the head once dry. Once I paper mache the head, I was distracted by other things. A few weeks or so (could be months) I came back to the head to try to remove the paper mache to have a hollow head. Well that didn’t quite work at all. I was forced to re-visit the head.

So one Sunday morning in the kitchen, I took a butcher knife to the styrofoam head and carved it in half. My son was on the couch with his mouth hanging open thinking that I had probably lost my marbles (still debatable). I hadn’t really thought the process through. Dull knife and it took a while and made a big electro-static mess. After energy used I was once again distracted.

I then forgot about the art project again because I had to make donations for school fundraisers. Thanks to the club’s secretary, another email reminded that I had a month to left to deadline for handing in pieces of work. I think that I have plenty of time to do it all. So prepped the board and got stuck. It was this 24″x48″ piece of white board. So I went to the computer and looked up photo transfers (I forgot how to do it). I deviated from the art project and made a sign. I went on computer and made some word art templates. I then phototransfered nine to one side. The next day and for a few days after I worked on removing the background. I became distracted and started my woodblock carving.

IMG_3049I grabbed half a head, some found objects, rope. I went to work with a screwdriver and punch putting holed in the head. Then then threaded the head with rope. I really hadn’t thought this part through. It wasn’t part of my master plan, but I ran with it. And then it sat again. For the last month of this project, my Botox has worn off, I am in pain. I can only work on this for sometimes as little as a few minutes and as much as a hour. Each time after I work, my head is spiking in pain and I need to go lie down because I feel absolutely wiped. Not from physical energy, but mental energy spent. Time suckage of just staring at what I am doing and trying different things is huge. I can’t make up my mind. That is the one thing where I continually get lost in time is my lack of decision making.

IMG_3142My two other pieces I know are going to be trees. I have half carved out my woodblock. The final piece is still stuck. I start with a board and end up getting a canvas. The final week in the house it is chaos. I work on art, sleep, nap, work on art, scatter art prints everywhere. The garage, downstairs and dining room table have been taken over. Laundry is piled high in the bedroom. Toys are everywhere. We eat left overs or what ever is in the fridge. Thank goodness our student went away as there was really no scheduled meal & kind of fend for yourself atmosphere. My head is spinning, my chest hurts. I am depressed. I am an emotional, physical and mental wreck that is sinking down a deep rabbit hole. I keep printing and burnishing my tree but each print is crooked. Then the ink is still wet after 48 hours. The only salvagable I have ruined trying to straighten for the frame. I become obsessive-compulsive in trying to get a straight tree print. It consumes me Thursday and Friday.  My hubby has a hockey tournament and my Saturday (the due day) is over scheduled. I am able to drop two pieces off on Friday and by Saturday afternoon the other two go in as well. What a relief. I am hollow and exhausted. My vision has a hard time focusing. I go to bed the same as the boys and sleep through the night with the help of a sleeping pill.

Art has been therapeutic for me. This has been a successful learning experience. I do not respond well to deadlines. I have to work at my own pace however forgetful, inconsistent and irradic it may be. At least for now as there is plenty of room for me to become more flexible (one of my weakest executive functions). I hope to go back to school and become an art therapist as I have seen the benefits for me and know that I would be able to help others in the healing process as well.


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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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Fight or Flight

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Okay I have gotten better with dealing with stress management after my diffused brain injury. I have done counselling, I have learned many techniques such as visualization, meditation, breathing and using essential oils. This techniques did not come naturally, I had to re-create new pathways in my brain to do things. It was like telling my right leg – heel then toe when teaching my right leg not to be lazy and start walking normally again. I had to tell myself over and over again to breath in & make a big stomach then breath out through mouth.

I remember telling the doctor that normally I didn’t feel anxious unless I started to become overwhelmed with too much noise, movement or visual stimulation. However I didn’t even clue in that my anxiety was really bad until recently when I it finally it clicked that my heart pounding and racing when I would sit still or lie down was actually anxiety and the wires in my head were still criss-crossed. My body has a hard time understanding the “fight or flight” response to stress. It appears to alway be kicked in to high gear and ready to either fly or fight. So everytime I have lie down I have to let my body relax and it can take upwards of an hour or visualization, oils and structured breathing.

When coping with stress, it takes a lot of mental energy in order to recognise symptoms, create strategies to cope and remember techniques for coping. My brain injury impacts my ability to do all all at once. Often there is a delay and I don’t even realize until later. So even though I have come far, I may still be a little quirky to all you normal people out there

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I do not do well with confrontation. I am collaborator. My processing and uptake speed is slower so I can’t necesarily understand everything or gauge the situation approppriately. If I am tired, distracted, in pain, I will be distracted and not get the whole picture. I may be just in my comfortable space of smile & nod & look like I am all there…I have become a great actress over time. My speech therapist would catch me on this – the glazed over deer in headlights type of thing and say that it was rude to fake paying attention. Oh well – rude or not it is one of my coping mechanisms.

A few weeks ago I was in a room with some people who I thought were acting rude. There was name calling and other things. I didn’t say anything because my mind went blank. I just sank down and typed on my phone. I put a comment on Facebook that was an observation and didn’t include names. I didn’t even know the people’s names. I sort of regretted posting my comment until the person ambushed me outside a public building.

It started about a comment about my headband. I didn’t recognize the person and happily told the person about where I got my headband until the person told me they looked me up on Facebook (creepy) and if my comment was about him or her. I said yes it was. Then the person proceeded to ask if I was going to tell the principal. (what…we are not elementary kids). My heart raced, and I rambled on. I couldn’t stop talking. I was overwhelmed, scared and stressed out. I thought i was going to pass out. I rambled on about how it there are issues they should be brought up to staff and not left to stew.

I ended up going home and forgot to tell Chris about it for two days. When i did he got angry. I told him that my anxiety was shooting through the roof every time I opened the door to that public building. My body was acting like it didn’t belong to me – no control. I am not angry at the person. I think the person was having a bad day. There person seemed nice. I have been working on regaining control of my body wiring again. It will get there. I can not believe how wussie i feel. My physical overreaction is unnerving. I don’t like the feeling of fast pounding heart beats where you can hear your pulse in your head. God is not like I am perfect or never lose it…just ask the kids about mean mommy who yells. I tend to usually just threaten that statement and it works, but sometimes a loud voice can get you where you want to be too. Chris knows when I have done too much and I may be losing and tells me I should go lie down. It is true, I tend to lose it if I have used up all my energy and my cognitive/coping/survival skills are forgotten or threshold goes down.

So generally i try to be positive, proactive, and use my energy wisely into boosting behaviour instead of suckage behaviour.

I am trying to take a less stressful approach at life; to laugh more, frown less and treat people as I would like to be treated. I like the radiance of positive energy and try not to let negative energy drag me down. Sometimes it is so hard and at the end of the day when I have used up everything to appear/act normal it is my family who sees me struggling. i need to put them first so they do not get the short end of the energy stick. I promise to try!

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