Tuesday, June 15, 2010

MY Girlfriend's guide to surviving an aneurysm& living with a TBI , what the doctors won't and can't tell you OR LISA'S GUIDE TO LIVING WITH A BRAIN INJURY!

As inspired by the title "The Girlfriends' Guide to Pregnancy: Or everything your doctor won't tell you" by Vicki Iovine. Okay, NO, I DID NOT read the book or even flip through it for that matter, I don't want to know what it has to say, but the title caught my eye as I was checking books in at the library and I thought it would make for an interesting blog. So, this is for those of you survivors I have met (mostly online). I remember early on in recovery I wondered if all the "weird" things I was experiencing were indeed "normal" after an aneurysm. I was convinced that my "brain injury" would somehow be different because it was caused by an aneurysm(and a massive one at that).  I thought the only people who could really, truly understand were other aneurysm survivors, and let's face it; there are not many of us! I have since learned that every injury is unique and every recovery is its own miracle, but no matter what the cause, our brain injuries share many 'common threads'. Of course, all doctors could offer me was a shrug of the shoulders and a "it is a function of the brain".

So, for those who don't know me well there is nothing funny about this. I am not minimizing the fear and anxiety that follows. This is just my feeble attempt to cope with all I have been through and hopefully make you smile! Okay, here it goes........
I wanted to know "IS THIS NORMAL??"  Although I may/am probably be the queen of abnormal, here is my "new normal":
* I choke on my own spit daily now (probably the lingering effects of a stroke)

* I get hiccups after eating or drinking (blame this too on a stroke)

* I can no longer "hurry". My brain just shuts down if I have to do anything quickly!

* I have trouble switching or transitioning from one task to another.  I am generally 15-30 minutes early for everything so I can have time to slowly transition and refocus on whatever it is I need to tackle next! If the phone is ringing, I have a terrible time stopping what I am doing to answer it.  This has improved with time and the help of a trained therapist reteaching me how to even do it to begin with.  In the hospital, my mom used to help me by telling me that, "in 5 minutes, you will have to go to therapy", otherwise I'd panic and my brain would shut down, and I would not know what to do next!

* I constantly unlock my house, go inside, lock it from inside, but the keys are still hanging in the door (I do this every time, haven't mastered the sequence five years later)!

* I didn't have an appetite for years. I had to set a timer to remind me to eat or I would forget!  I had to learn how my body tells me I am hungry now. Instead of feeling hungry, I get black floaters in my vision or feel lightheaded or dizzy. I generally eat at the same times every day and have snacks with me if I start feeling any of these symptoms! I literally stop and ask myself, "why I am feeling this way?", then remember it means I need to eat something!

* Just because I can tolerate more things on a "good day" does not mean I can always or consistently tolerate them. On a "bad day", my tolerance for any extra sensory input is greatly diminished!!!

*ABSOLUTELY EVERYTHING IS EXHAUSTING!!  For about a year simply taking a shower would require a nap to follow, it was so exhausting! I live in a world now where 'well rested' or even 12 hours of sleep at night still means mentally exhausted!

* I used to walk through the grocery store saying the name of each item I saw. I had to do this or I wouldn't recognize what I was looking for. I would be looking for tea and walk right past it unless I was actually saying it out loud. I even once asked somebody if I was really seeing cake mix because the store had been reorganized and I was sure the aisle I just went down used to have juice in it. Can you imagine what that poor person was thinking, they probably went to look for a butterfly net...hehe.

* When you take a nap, you will wake up and be convinced it is the next day, even though, you are not totally sure what day that actually is. There will not be a person anywhere who can talk you out of this idea.

* If a doctor tells you that parts of your brain have probably died as a result of the bleed/stroke/injury . IT IS OKAY, they are probably right. Arguing with them will not change this fact and even "normal" people only use a small percentage of their fully living brains!

* Feeling "numb" is normal. It feels like you are just watching the world go on but you are not actually a part of it. Perhaps it is sheer exhaustion and perhaps the brain can't keep up with such a rapid world!

* I would randomly vomit from time to time. Poor Nate (my hubby) was an involuntary human shield from time to time. I think I have had every organ and system checked for proper functioning. It all seemed to be okay so doctors just shrug their shoulders and say "it is a function of the brain"

* okay Ladies, let's just be real for a moment. While swimming offers a buoyancy effect that is helpful for those with paralysed extremities the thought of putting on a swimming suit in March is not favorable for a women at any age. I was a pale, bag of bones who hadn't shaved since February 1st (possibly longer).  As you can imagine, shaving was very painful ! To make matters worse, the whole central nervous system is frazzled and finds all sensory input as another assault! I will say that the gift of Moonlight Path body wash and Lotion from my friend's, The Masons, was just what I needed to feel just a little bit more human. Oh, to not smell like a hospital was so priceless at that moment!

* Dialing a phone number was a nightmare and often impossible to do. I could not transfer a number from one place to another. Also, I tried to balance the neglected checkbook once and it caused a massive meltdown!!!

* Talking too much makes me uptight, EXHAUSTED, and nauseous. But, I still can't help myself, I just keep talking!!

* When I sleep now, I just radiate heat for some reason? Yes, every gland has been checked by specialists!

* At first, I had to have my husband, Nate, sit down with me to help plan the next day. We would write numbers next to the event, in my planner, so I could figure out how to execute the activities for that day(yes even when to eat breakfast had to be on the list). It is 5 years later and I still label my activities with numbers sometimes, okay most days (but now I can usually do it by myself).

* All time and events are measured by my aneurysm rupture. Everything is either "before my aneurysm" or "after my aneurysm"

*  My short term memory is terrible but is slowly improving. But, I still have to write EVERYTHING down in my daily planner to survive.

* I was an emotional basket case. I cried at literally everything (even answering a phone), until I was put on a mood stabilizer!

* Rarely do I get excited about things since my aneurysm, things I used to really enjoy have simply become exhausting and filled with "lots of steps; way too many steps to think about sequencing"! I am generally apathetic and melancholy. Unable to make a decision partly because I don't know what I prefer nor do I have the ability to hold two choices in my head and choose the best one! Other major changes in my personality include; but are not limited to:
- now I like and need time alone (I mean like no TV, no phone calls, no visitor, ALONE).  I Never used to be this way, I was exactly the opposite, I loved having people around 24/7! I loved living in a dorm while in college, there was always somebody around!! I would no longer be able to tolerate this! Good thing I got my degree before my aneurysm!!!
- I would be getting mad and not even know it, causing some episodes of what seemed like "flash anger" out of sheer frustration! I  had to relearn how to tell if I am getting upset and step back before exploding!  I try my best, I still explode occasionally!
- More frequent panic attacks due probably to my inability to cope with all the extra sensory input around me!
- I have a very, very hard time being 'flexible'.  I like to religiously follow a schedule and want an exact plan for everything!!


* As a result of my injury my brain no longer has a 'filter'.  I generally say whatever it is I am thinking. While some find this endearing others find it offensive or rude.  I certainly don't mean it that way, but sometimes it is unavoidable and gets worse as fatigue increases. I work hard at thinking before I speak and try to remember what is "socially appropriate" and what isn't but I am not always successful at this!! Oh and, can we just talk about anger for a moment. Very early on, after waking up from my 'drug induced coma', I was simply angry at everything and everyone..... angry, angry, angry(and no filter, YIKES, not my most shining moments to be sure!). I don't know why really, I wasn't really angry about what had happened to me, I think it was my lack of understanding and the pain that I was in (blood being reabsorbed in the body is a very painful process, not to mention b r a i n s u r g e r y)! It made me so mad that in my mind I was being treated like a child. Everyone was so excited by everything I did (like knowing my name and birthday or going to the bathroom) I, however, was completely unaware of how "bad off" I really was. In my own head, I was still an intelligent, fully functioning 25 year old!! Why was everyone making such a fuss over everything???? This question really annoyed me!!!

* For my own safety reasons I am still only "allowed" to drive in familiar areas. I literally can't navigate and drive too.  Don't worry, I went through a rehab driving class and a trained therapist checked my reflexes/ability to drive (yes another road test with the OT, which was way longer and more involved than when I was 16 and just getting my license) and found I was 'safe' as long as I wasn't navigating(or talking to anyone)!

* My attention span now is about the same as a two year old.  I can't focus on anything for very long. Cooking, cleaning, yard work, a movie, you name it, I have like 5 to 15 minutes (depending on the day) and that's all I can tolerate! I have to really work hard to do anything for longer than that.  This often causes me to be VERY easily distracted. Shopping with me is like shopping with a crow, "ooh, it shiny"--> I'm gone, I don't realize I am supposed to tell whoever I am with that I have stopped to look at something.  Nate often teases me that he is going to buy me one of those "kiddie harness with a leash" so he can keep track of me and keep me from getting confused about where I am when I suddenly realize, I'm looking alone!

* If you really want to know what a brain injury feels like then ; do a head stand until your head is throbbing so bad you can no longer think straight!  You recognize things but must approach them differently.  Upside down you think you should be able to carry on like you used to but everything is just so confusing.  People around you think you should be able to carry on, I mean after all you are alive, just upside down! I like "The Strange Familiar" as a way to describe it (and they are great band too).  **DO NOT, actually try this, just take my word for it**

*Let's talk about flooding (of the brain).  Too much information coming at you and suddenly you are in a game of dodgeball except instead of balls there is infomation all being thrown at you.  There you are trying to sort it all out but it just keeps coming.  You are alone and totally outnumbered!! In surrender, you sit down, hold your head and begin to cry, until the 'other side' stops thowing things at you!

* Even if your injury is visible with medical scans people/doctors still forget there is something wrong with you; because you "look so normal now". Even though your recovery can be marked in years, you are STILL recovering! My friend carries this note with her on a card so when she "shuts down" from too much information being 'thrown' at her,  people can better understand why, even if she isn't able to say it:............................................................
"I have a brain injury.I have trouble understanding simple instructions, particularly when i am feeling overwhelmed.
I need you to help me by staying calm and speaking slow and clearly. Treat me with kindness, respect and understanding of my disability.
Please write down any information that i need to remember or act on."

* You can now label my injury as "Acquired Brain Injury"(Acquired from a Subarachnoid hemorrhage/stroke) BUT, it has still been very traumatic to me!

TO BE CONTINUED AS THINGS COME TO MIND!! *feel free to leave me your ideas too!

----------------As adapted by Paula Schmidt (from its original version), with my input!-------------------

While dealing with the swirling questions and frustrations from her brain injury, Lisa came across a book called The Girlfriend's Guide to Pregnancy: Or Everything Your Doctor Won't Tell You. It occurred to her that she — and many people like her with a brain injury — could use such a guide when it came to dealing with the symptoms resulting from her injury. Although Lisa's brain injury occurred from an aneurysm, the items in her guide can help anyone with a brain injury, no matter the cause.
  1. I choke on my own spit daily now (probably the lingering effects of the brain injury). If this happens to you, blame it on your TBI.
  2. I get hiccups after eating or drinking. I blame this on my stroke, too, so feel free to add your own twist.
  3. I can no longer “hurry.” My brain just shuts down if I have to do anything quickly! Feel free to shut down on a regular basis.
  4. I constantly unlock my house, go back inside, and then lock it again from the inside — only to find the keys are still hanging in the door. I do this every time — I still haven’t mastered the sequence five years later!
  5. I didn’t have an appetite for years. I had to set a timer to remind me to eat or I would forget. Chocolate, of course, can always be your exception.
  6. For about a year, simply taking a shower would require a nap to follow. It was so exhausting!
  7. I used to walk through the grocery store saying the name of each item I saw. I had to do this or I wouldn’t recognize what I was looking for. For example, I would be looking for tea and walk right past it unless I was actually saying it out loud. I even once asked somebody if I was really seeing cake mix because the store had been re-organized and I was sure the aisle I just went down used to have juice in it. Can you imagine what that poor person was thinking? They probably went to look for a butterfly net……
  8. When you take a nap, you will wake up convinced it is the next day. There will not be a person anywhere who can talk you out of this.
  9. If a doctor tells you that parts of your brain have died as a result of the bleed/stroke/injury, they are probably right. Arguing with them will not change this fact. It is OK. Even “normal” people only use a small percentage of their fully living brain.
  10. Feeling “numb” is normal. It feels like you are just watching the world go on but you are not actually a part of it. Perhaps it is sheer exhaustion and perhaps the brain can’t keep up with such a rapid world!
  11. I would randomly vomit from time to time. Poor Nate (my hubby) has often been an involuntary human shield. I think I have had every organ and system checked for proper functioning. It always checks out okay, so doctors just shrug their shoulders and say “it is a function of the brain.” Yeah, yeah.
  12. Okay, Ladies, let’s just get real for a moment. While swimming offers a buoyancy effect that is helpful for those with paralyzed extremities, the thought of putting on a swimsuit in March is not a favorite thing for any women of any age. I was a pale, bag of bones who hadn’t shaved since February 1st (possibly longer). Shaving was painful, as you can imagine! To make matters worse, my whole central nervous system was frazzled and all sensory input felt like another assault. So, feel free not to shave (unfortunately, you can’t skip the swimsuit).
  13. Dialing a phone number was a nightmare and often impossible to do. I could not transfer a number from one place to another. Also, I tried to balance the neglected checkbook once and it caused a massive meltdown!!!
  14. Talking too much makes me nauseous.
  15. When I sleep now, I just radiate heat for some reason?
  16. At first, I had to have my husband, Nate, sit down with me to help plan the next day. We would write numbers next to the event in my planner so I could figure out how to execute the activities for that day. It is five years later and I still need his help sometimes (but now I can usually do it by myself… I think).
  17. All time and events are measured by my brain injury. Everything is either “that was before my brain injury” or “that was after my brain injury."
  18. My short-term memory was terrible but it is slowly improving. I still have to write EVERYTHING down in my daily planner, though.
  19. I was an emotional basket case. I cried at literally everything (even answering a phone), until I was put on a mood stabilizer.
  20. I will say that the gift of Moonlight Path Body Wash and Lotion from my friends, The Masons, was just what I needed to feel just a little bit more human. Oh, to not smell like a hospital was, and still is, priceless!
  21. My faith has carried me through, along with the love and support of an amazing husband, family, and friends. A good friend once told me, “Lisa, no matter how many times you fail, you are not a failure! I don’t know about you, but sometimes I still need to hear that from time to time.
  22. Finally, I want to share what I consider the thing that makes every pain-staking minute of recovery worthwhile. The “silver lining,” if you will, is ALL OF THE MOMENTS OF LIFE I didn’t miss out on — thanks to my exceptional good fortune of surviving the odds.

  

6 comments:

Dian said...

1. I can't remember ANYTHING on a short-term level.
2. Tell me 1 time or 10 times, I won't remember it.
3. Pre-surgery, I was a very light sleeper. Post-surgery, I sleep like a baby.
4. Pre-surgery, I had dark circles and bags under my eyes. Post-surgery, they have disappeared.
5. I don't remember to eat either.
6. A "bulletin board" was purchased and hung to use for daily reminders.
7. The bulletin board was placed on a wall, but is not in use.
8. I have too many sheets of paper with notes on them telling me what needs to be done.
9. I forget to water the lawn and plants.
10. The only reason the cats are fed is because they make such a fuss when they're hungry. They do get fresh water daily though.
11. I have to set a timer when I do laundry because I forget what I'm doing. The buzzer on my new machines is too soft to be heard even on the highest level. So I stay in my study working on the computer to be able to hear the machines.
12. I forget to get cash out of the ATM.
13. I very rarely drive my car because I forget where I'm going. And when I do, (only 7 times in 3 years), a friends rides with me.
14. I own a Harley-Davidson motorcycle. (I've owned 3 since 1982.) Since my surgery, it's only been ridden an average 6 times per year. But I won't sell it!!!!
15. My friend reminds me to pay my bills and helps me with the check signing, and posting.
16. I'm glad I have a Birthday Calendar to show me upcoming birthdays so I can post cards.
17. I rely on a friend to take me to the grocery store to buy groceries. And I have to stick to my shopping list so I don't double buy an item the I already have at home.
18. In a way, I miss my old life. But I don't miss the stress of my job.
19. I was looking forward to retirement. I got that wish 14 years earlier than expected.
20. I'm so thankful for my friend that lives with me to help me. And I'm thankful for my other friends that live nearby that help in other ways.

Dian said...

Addendum ... I also notice misspelling when I write now and improper syntax. C'est la vie!

Lisa said...

Dian- no worries about that stuff here!!!

Tiffany said...

Thanks for this posting. It makes me feel more "normal". I can definitely relate to the choking on spit, the hiccups, the brain shutting down, the disorientation after waking from a nap and a few others. I'd also add:

1) When my brain decides its time to shut down, sleep, it doesn't matter what I'm doing or where I'm at. It's lights out and the slumber is so deep you could stand beside me and scream in my ear and I wouldn't hear you.

2) I can't remember the name or face of a person that I just met yesterday but I can remember in excruciating detail individuals I haven't talked to in 5 years. I used to get frustrated, now I just laugh it off and tell people that they'll have to reintroduce themselves tomorrow. It takes 4-5 times (minimum) before I have a chance of remembering.

3) I'm an emotional roller coaster. Some days, I can swell up in tears just thinking about the potential that someone might be in pain. Other days, I don't feel a thing and seem to just be going through the motions of life.

4) The thought of trying something that I haven't done since before my aneurysm is terrifying. I don't know if I'm going to remember how and if it's going to trigger the deep, dark, disorienting slumber.

5) I've made a sport out of losing my keys. Instead of where in the world is Carmen San Diego, we have where in the world are my keys this time.

Lisa said...

Thanks Tiffany!

Sick of the lies said...

wow, I was just browsing your site when I came across this, and I made my husband sit down. and read it. because its me in a nutshell. Now he sees that I am not alone. that all the things I complain about are real. thank you.
hugs, Shelby