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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Bringing back the Food!

_MG_0069aOkay I survived the elimination food diet. It really wasn’t that bad. There are so many options to eat. You get to re-discover the real tastes of foods again. I also was able to experiment with foods I haven’t eaten in a long time or ever. Although I travelled in the southern United States and I tried grits (didn’t like), fresh beady eyed shrimp (good); I didn’t have the opportunity to try okra. (given that were were on a young person’s budget which meant we lived in tent and cooked our own food).  I finally was able to try okra and I loved it. I just need to learn how to cook it at home. I just hope it is not part of the nightshade family. I experimented with recipies. I made a bean and sweet potato soup, or what the boys call a stew. It was yummy and the boys even liked it (score!) The boys have loved the granola too! So much I am making it from scratch (easy peasy) as soon as I was able to find GF oat as the tiny bags as store are ridiculously priced. I saw a funny video and thought here I am writing about my experiences.  How to become gluten intolerant I know that there are plenty of books on this. I only read one (forget title) based on food intolerances and I never finished it as it ended up being a diet to lose weight book. What a crock. The book sparked my memory of allergy testing eons ago and gave me courage with food recipies (along with Internet) to move forward to see if my tap of a nose, rash, snots & bubbles were caused by food or other external factors. The only way you could lose weight by doing the elimination diet is really like any other diet is to cut calories and starve yourself. There really are endless good food items to indulge in.

I was so excited to bring back the food, I kind of forgot the second part of the elimination diet and went full bore into eating. Never trust a brain injured person (okay just me) to get it right the first time. I ordered a fast food burger and french fries (hey I am human) then ate/devoured it without thinking (can’t remember if I breathed at all during the feast). Of course I still have no idea which items of food were bugging my chest and nose as I ate wheat, dairy, tomato. Oops.. all I know is that my face felt tingly, I got phlegmy and my nose ran. Great.  What was I supposed to do again. Oh yeah…add back one food item every four or five days. Mmmm what to do…carry on like all is normal. and try, try again.

_MG_0060aSo after another food kafuffle or two or four, I have found out that I am able to eat corn, peanuts (not a big fan of peanut butter but fell in love with almond butter in this process), and soy. I will continue being gluten free for a bit. However I miss having a beer (nose runs almost immediately when drink it). I love cheese and have been dreaming about when I could re-introduce cheese. I went out and bought brie and herbed goat cheese to test dairy this week. I am a little dis-heartened as I had a fruit smoothie for dinner at a restaurant as the boys had burgers & ice cream for dinner (a treat from surviving their yearly check up at our family doctor). About 30 minutes after drinking my mango/pineapple smoothie, I was given a treat of some nice belly pains. So instead of calling off all dairy for the evening, I instead bring out my wonderful cheese, rice crackers and a glass of red wine after the  boys go to bed. Mmmmm the brie was soft and rich, while the tangy goat cheese went awesome with the wine. All went down smoothly. I went to bed and woke up coughing from a phlegmy choking feeling. Damn…not the cheese…I love the cheese. So I made a compromise with myself. I will try not to eat cheese daily but will allow myself to indulge once in a while. I do this as I working out food options for when my friend , Manj, the four kids and I take off to a cabin in Cypress Hills for a few days during spring break. Life isn’t black & white so my food choices will not be either. I will just have to live with the consequences.


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A glitch

IMG_4780So I have been doing this elimination diet in hopes to find new energy for my beyond endless fatigue, bad skin, and motility problems. So I enter into the second week all good. Thinking that the first week wasn’t too bad. I didn’t have any cravings and my skin appeared to look better.  My constantly runny nose and sludge going down the back of my throat has stopped! Well the motility problems went from a complete standstill (since having SJS even motility prescriptions/nor fibre have helped) to “hey – I am here and don’t ignore me or I will teach you a lesson” type of quickness. Crap – I mean literally crap and plenty of it too! Plus the added walking and farting phenomena too. I don’t even know the last time I farted. Everyone would make fun of me because I could never fart, but heck even a smell of a carbonated drink or water and I was burping louder than a 300lb man! Here I was hoping energy; however, I was extremely tired…three hour naps, full nights sleep (other than the endless bathroom trips from 9:30pm-12:00am), sleeping in an extra 15 minutes….snooze, snore, snooze and maybe a snort here or there – this was me a walking zombie wearing a toque because I hadn’t showered and my hair only wanted to stand up straight. Instead I got poop! And then in the second week, my skin begins to crap out too!

I accidently have wheat & dairy in something and say to “hell with it” and have a beer as well as I glitched and didn’t read a label correctly. So that night in bed I start to cough as I feel sludge going down my throat…yuck the runny nose thing had started again.

The next day I start all over again and begin again.  It is not a failure but just a glitch in my embracing a new way of eating. Absolute change can not happen overnight.

I wrote that eight days ago. Today I began week three. I won’t begin to introduce some foods just yet as I know that dairy, gluten and nightshade veggies trigger me.

four days ago I got a hold of my physiatrist and we decided to tirate down on propranol as it may be a big factor in causing the lethargic, fatigue, dizziness and just plain yucky feelings. I already have relatively low-normal blood pressure under 110/70 and the meds lower your blood pressure further. I tried this med when I first came out of hospital and found it very horrible, but my Dr. wanted to try it again. I responded better by not having my vision go black and almost passing out all the time.  I am down to three pills twice a day and I have a bit more energy, but I did sleep in today and I also had a nap too!  We will keep playing by ear. I still don’t think it is the right med for me. However, it has made sleeping through the night easier.

Here’s to hopefully moving a head instead of backwards.


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RAM needed Please

I must say that my memory has always been somewhat sketchy – always good for work but super bad for birthdays etc…. Then the sleep deprivation of having kids added to the mix so it wasn’t until probably about a 1.5 years ago I had noticed it getting worse.  Thank goodness for my iPhone.  I would use it for everything.  I would set my calendar timers, used the note feature to remember everything.  Then it got to the point where, I would forget where my phone was, not hear the alarms, forgot that I heard the alarm and start missing important work, school and family stuff.  I stopped using my phone and went to paper lists.  Paper lists for everything. This sort of worked for a bit too then  I would make a list for groceries and forget the list at home.  Then I would email myself stuff, only to forget about the emails.

I would make a list at work of projects that I needed to do and then forget about the list.  I would miss deadlines, forget about ongoing projects and even lost a client for my work.  Yes I felt bad!  At work, all I was doing was apologizing.  I was on the verge of getting fired – nothing I did was right anymore – I no longer was fast, accurate and field ready.  I was alive but not functioning mentally or physically anymore – basically a useless tit! I know that some people at work thought I was acting the way I was because I didn’t want to be there, I was dragging my feet on purpose. I had warned them for months that I needed help because something was wrong with me but no help came. I did not comprehend how badly I cheesed off some people at work until basically now two weeks after surgery.  I remember that at the beginning of August when I handed my medical note in at work and said I would finished the project I was working on.  I completed that and then left to be on leave.  After I received my ROE, I checked the website, because I knew they were doing changes and wanted to have a look, only to discover that I was no longer on the employee page.  I couldn’t understand why and I still don’t know why completely; but oh well that is life.  I had loved my job and the main owner of the company.  I loved how the company was originally built on a family feel approach rather than corporate entity.  I have no idea if I will be able to go back.  I know that at the moment if I had to go back to work I would be a disaster again.  It was membership time with CAPFT and I had to decide to renew my professional status for 2o13 work permit.  I had to decide if I be a practicing or non-practicing member. I registered as a non-practicing member for now.    I am not negative or upset or frustrated with anything that has happened, but now I see the situation from a clearer headspace.  I am accepting of where I am today and know only positive changes will happen with time.

I am no longer in a fog and physically I am getting stronger and stronger everyday.  I am working my brain by writing, and when I talk no one would know that I have some RAM and a few short connection issues.  My short-term memory has a lot to be desired at the moment – BBQ caught on fire – oops about those burgers; Fill bathtub and forget about it; kids request food/drink – oops just to name a few.  If you want to have a conversation with me, better get my full attention or you will have a one-sided conversation to yourself! Even if I have responded I probably didn’t hear you or processed what I responded to. I feel that I am way better than before the surgery, but still have a ways to go.  I know that when I look at words that I have known for a long time I question if they are spelled correctly because the word just doesn’t look right.  I used always ace the reader digest word definition quizzes and now…well…I tried.   I know that it gets worse as I get tired or when I get stressed or have too many things happening  at once.  I just need to step away and recharge when I feel a little overwhelmed.

I am looking forward to my brain schooling next week, and I know  that it will help me out.  So I will fill up my backpack just like the kidlets and head of to do a bit of ol’ book learn’n! I am opening up new doors  and allowing  for change and opportunities to come my way.

Raise a glass of fizzy water and toast to new beginnings!