A Better Strategy for the Home Stretch

aforrest Leave a comment

The thing about being conscious about figuring out a “plan for success” for getting through this final stage of my setback is that I can revise my first thoughts on a plan once I start working on my plan.

This is true any time that one is conscious about figuring out strategy.

The first thoughts are often not the ones that are the best!

That seems obvious now that I write it.

However, it was not obvious to me when I wrote my last post.

It took some reflection on my part this week for me to get to the place that it is obvious.

In the last blog post I wrote about what I imagine my strategy for the home stretch of this setback ought to be.   As I wrote the post, I remembered that my strategy had to include “holding back my inner over achiever” because I have come to learn that pushing hard to the finish line doesn’t work for me after my brain injury.

This week I reflected on what the rest of my strategy ought to be.

As I thought about what I had written in my post, it struck me that I was still trying to do things like the old me did things.

It struck me that just imaging the race as a horse race was my old me.

And, I laughed and laughed gently with myself when I realized that my imagination was from a place in my old me.

I am not my old me!

They say that old habit die hard.

Certainly this old habit of imaging strategies as if I were the old me, is still with me.

How funny.   After 17 years of recovery from my concussion, no less!

And then I reminded myself that the new me is the turtle in the race with the hare from the Aesop fables.   In the fable, the hare challenges the turtle to the race and the turtle wins.

“Slow and steady wins the race” is the motto for the turtle in that race.

I have learned that the new me does better trying to emulate the turtle (and not the hare).

That means that I am already holding back “my inner over-achiever” during the race and the home stretch should be no different.

So what are other components for a better strategy for the Home Stretch.

(#1 Remember, I am a turtle in the race.

Keep holding back my inner over achiever because I cannot push throw this)

#2 Build my support network for the last stretch (if its not already built).

A friend called yesterday and at the end of the call, she said, add me to the list of people to call on for help.

#3 Prioritize safety first.

Don’t do things that if they don’t go as expected, may make things worse.  Right now I am having some changes in my depth perception.  So I am not driving until it is safe for me to drive.   This means finding other drivers and changing some of my sons commitments.  Its not easy to change this routine, but if I am an unsafe driver right now, then I need to prioritize safety first for me and my family.

#4  Be gentle with myself.

#5  Slow down (further to incorporate the whole strategy)!

Since I am not processing information well and making more mistakes than usual, in addition to imaging being the turtle in the race, I need to go at a turtle pace with my support network in place and prioritizes safety and is gentle for me and is slow enough that each step is the best step I can take be it forward or sometimes backward to go forward.

What are strategies that you use to build your support network around a setback?

How do they work for you?

How do you manage slowing down and finding the right pace for you?

What is the hardest thing about slowing down and holding back your inner over achiever?

 

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The Home Stretch

aforrest Leave a comment

I had the intuition that I should title my blog post “The Home Stretch” while I was meditating.

Because my brain is still a little more groggy from all that I have been through the last 2 and 1/2 months, I had to think a little more about what the term sporting event the “Home Stretch” came from.  At first I thought it was a baseball analogy about the run from Third to Home Base.

As I reflected on it, I realized that I have heard it used that way by the announcer at baseball games.  And then I realized that the idiom comes from a horse race.  In fact, when I looked it up in Merriam Webster, I found that the first definition is “the part of a racecourse between the last turn and the winning post” and the second definition is “the final stage”.

This week, upon much reflection, I realize that I have turned the corner on the last turn and I am in the home stretch of getting back to my baseline before my dental appointment.

As I thought about what goes on in a horse race between the last turn and the winning post, I realized that there is a lot of strategy that goes on in that final distance.  I have seen many races (on television) where the horse that wins the race is not the horse that is ahead at the turn, although sometimes the horse that is ahead at the turn wins.  In a horse race, it is speed that wins, but it is also strategy.

What reflecting on what happens in a horse race means to me now is that I have to be careful and conscious about my home stretch.   And I have to use all my strategies to get from where I am now (roughly 80% of my previous baseline) to where I want to go (back to the 100%) in order to get to the finish line (where I want to go).  And in my case, I don’t want to leave all my energy on the field, like the horses and riders do.  I want to be able to keep going and building after I get to back to where I was before all this happened. In my case, its not how fast I cover this distance to 100%!  Its about doing the things that will get me there and which I can maintain after I get there.

In addition, I want to get back to 100% of where I was, and possibly a bit better than 100%.  (I talk about better than 100% of my baseline in my blog post called Focusing and Refocusing). And, I want to be able to keep going once I get back to where my old “new normal” was.   I want to keep my new new normal evolving, in other words the benefits of neuroplasticity.

Now, what I have learned from my experience about setbacks is that, if I try to get down the home stretch as fast as possible, I may never get back to 100% (of my baseline)!  

And I won’t be able to sustain that 100% once I get there.  

And, I won’t get to more than 100% which would be the best outcome and what I am hoping for.

When I say I have learned that going as fast as I can on the homestretch does not work from experience, I mean that the temptation is to try to race there as fast as I can! I am tired of having to compensate around my brain not working as well as it did.  I am tired of telling others that my brain is still not working well as well as it did.  My husband can see it, and my close friends who listen carefully can either see it or hear it.   But lets face it, most others who don’t know brain injury cannot.   And even if they could, I am tired of having to work further around my work arounds!  I am tired of taking cognitive rest.   I am tired of telling people I haven’t been able to do much this summer and thus have not gotten to all the things that I thought I would get to this summer including things I may have told them I would get done for them.  I am just plain tired of all this. And as an over achiever prior to my brain injury, I learned to push hard in the home stretch.  I learned it so well it became habit.

You see, I have learned over and over that my habit of pushing hard before my brain injury does not work.   So pushing harder in the home stretch, which was my pre-injury habit, also won’t work.

I have seen many others, not just myself, push hard to get through a concussion.  It doesn’t work. I have to consciously unlearn all my habits of wanting to be done with this last stretch.

So what is my strategy for this particular home stretch going to be?

The first step to changing this strategy is to identify the habitual problem of wanting to race through it.

I have done that.

The second step is to figure out how to be conscious about it.

I have begun to become more conscious about it by writing about it.  

That is one thing I love about writing my blog. Writing forces me to reflect and think about what is going on for me and how I am handling it this time.  

And that reflection sometimes leads me to different answers than I had when I started writing.

And in reflecting and writing, I have become more conscious that I have been at this (or a similar) juncture before, many times in fact in my recovery.

As I write, I am beginning to remember that I have even discussed this very issue before.   I now remember a conversation that I had with Dr Lebedun, years ago.   Dr Lebedun is a very bright and intuitive Neuropyschologist that I found when I lived in Northern Virginia.   I now recall that “holding back my inner over achiever” should be a part of my strategy now.

But its not all of my strategy.

I need to be conscious about figuring out my strategy and using what I have learned prreviously.

I need to make a “plan for success” about how I will approach it.  By the way, I attribute the concept of making a “plan for success” for some work I have been reading by Dr Larry Schutz. (More on his work later but here are the resources http://givebackorlando.com/hepusef/hepindex.html)

How do you approach the home stretch — whether it be back to your baseline before a concussion or back to a “new normal” baseline with persistent symptoms following a concussion.

Have you approached a home stretch in a way that you wouldn’t try again?

What happened?

What are your best strategies for the homestretch?

What has happened for you when you used them?

Who taught you or how did you learn your best strategies for the homestretch?

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Useful information

aforrest Leave a comment

This week has been a little like last week.

I am still struggling with not being 100 % back to where I was before my dental appointment that caused my setback 9 weeks or so ago.

I am doing what I can to keep my mood up.  Keeping my mood up helps me tolerate dealing with the symptoms of sleep issues and my head working more poorly than I have been used to.  Keeping my mood up does not solve the problem, but it does keep me more level headed and the more level headed I am about my brain working more poorly, the more I can take what my brain is doing (or not doing) in stride.  The more I can laugh at some of my foibles and the more I can help others understand that what they are seeing is indeed what I am experiencing.  Or deal with it when they cannot see that anything is different for me because they either don’t know what to look for or don’t know me well enough.

My husband was telling me this week that he is having a tough time understanding me.  I have come to appreciate that he can see the decline in my functioning quite acutely and to listen to him (rather than get defensive) for clues as to how he sees it.   When I listen to how he sees it without being defensive, we can work with each other to help both of us.  When I cannot listen to him about it, my poorer functioning can separate us.  I can feel like he doesn’t understand how hard it is for me or how much I am doing to try to make it better.   One his side, when we get separated around my brain injury related issues, he says that he feels that I am not appreciating how hard it is for him.   Its funny because we have had to learn how to not let our adorable son separate us on issues.  You would think that would help us, but it is much harder to not let my injury separate us.

My husband told me that it’s as if my sentences are thoughts in process rather than sentences.  After I thought about what he told me carefully, I realized he was telling me his side of exactly what I feel.  He was saying it in his words.  What I realized from talking with his is that my slower processing right now is showing up in my conversation.  I cannot process what’s happening around me fast enough.  Which means that I cannot pull it together to communicate efficiently or effectively to others around me, even though I know I am not doing well and I want to be able to communicate that.  Of course, this is a recipe for frustration above and beyond the frustration that I am already feeling because my brain isn’t working how I am used to it working.

It is useful to know his point of view.  I am not sure I can do that much to help it, but its good to understand what he’s seeing.

It is useful to know from him that often my paragraphs are not started with a topic sentence but are just a collection of sentences in which I hope that I will learn the topic sentence by getting my thoughts out in front of others.   This is occurring more often after the setback started.  And it does help to know that my husband is experiencing it because it reminds me to try to remember to start with a topic sentence when possible when conversing with others.  It also tells me that if people are not understanding me the first time I try to tell them something, that I should start with a topic sentence the second time I try to explain my thoughts to them to get get my point across.

Here are some of the things I did this week to move my setback recovery forward.

I made an appointment with my neurologist, Dr Hill.  Since I have plateaued in terms of getting back to my 100%, I figure he may have some suggestions.  Its been over a month since I have seen him last and I need to get his input on next steps.

I also made an appointment with Russ Adams, a mental health professional, who knows brain injury.  I had gone to see Russ Adams over ten years ago when I originally did rehabilitation here in Austin.  He already knows me because we worked together before.   He worked at St Davids Rehabilitation Hospital when I saw him last and he is familiar with the difficulty that people with brain injury had in getting the resources they needed and the journey that they travel to get better.

I also got some useful information this week that was very helpful for lining up my next steps to try to get the resources I needed to try to get me better.   Over the past couple of weeks, I had reached out to Dr Andrea Laborde and told her a little about what is going on in my life.   Dr Laborde is currently working at a concussion clinic in Australia where they take concussion recovery for civilians very seriously.   I was introduced to Dr Laborde by Ann Marie McLaughlin (and other folks) from ReMed, a forwarding-thinking Rehabilitation Company located in the Philadelphia area.  Dr LaBorde and I did a talk on mild TBI issues in about 2005.   More on this later.   Dr Laborde and I also worked on the Ontaria Neurotrauma Foundation guidelines on persistent symptoms following Mild Traumatic Brain Injury www.onf.org.   I have written about this work in previous posts.  I wanted to get Dr Laborde’s perspective on my setback.

Dr Laborde said brain injuries cannot get worse, but it is well known that the symptoms can reemerge after an external event after they have been managed.  Andrea told me that the medical term for the problem that I am having (which I have been calling a setback) is recrudescence.  She told me that at her clinic they treat a recrudescence by treating the symptoms.  In my case, that would mean treating the sleep issues, cognitive deficits, vestibular and/or vision issues.   The truth is that I have begun to treat some of my symptoms by adopting some stricter strategies on cognitive rest with the computer and with my mental effort. From her email, I realized that being as comprehensive about adopting stricter strategies, with the help of professionals may behoove me.  I will talk with my neurologist about this when I see him this week.

The other thing that happened somewhat serendipitously this week was that my former vision therapy doctor, Dr Amiel Franke, called me on Monday to ask a favor.   He is retired and is 90, but he still is very interested in what is happening with his former patients and I had had lunch with him last year if DC.  He asked me how I was doing, and I did not hesitate to tell him about my setback.   His response was, “I know exactly what is wrong with you”.   Now you might think that its hubris that he could diagnose me over the phone, and after telling me what he thought, he did advise me to reach out to my vision therapist here in Austin, Dr Denise Smith, to follow up.   The thing about Dr Franke that I know is that he’s always right.  At least he has always been right in the past, which means I know his batting average is 100% with me so far.

I made an appointment with Dr Smith and I will talk with Dr Hill, my neurologist, about the vision aspect also since he is a neurologist that believes that considering what is going on with the visual system is important in brain injury recovery.

On to next week…

Have you had a reemergence of symptoms after an external event?

What happened?

How was it treated?

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Re-focusing and binocular vision

aforrest 1 Comment

I see it as my job to get better and I am still working (hard) to get back to my baseline before my dental appointment on June 2.   Its been two months now.   Its been quite a struggle.  I have had to use all my resources and have had to find new resources to help me.   But I am getting there.  I think I am at 80% now, which means that in the past three or four weeks, I have made about a 10% improvement.

I would like for my improvement to go faster.   But realistically, I am grateful for that improvement.

My cold/bronchitis is lingering but almost over.

And I have been noticing that my vision and brain are reorganizing this week.   A visual/brain reorganization is about the best thing that could come of this setback.   Yes, I have felt my vision reorganize, and my brain reorganize.   The reason why I say that that is the best thing that could come out of this setback is because when I experience a re-organization, I know that I will get to a more functioning place with my brain once I get back to where my baseline was.

In other words, I will likely be better than I was before this setback.

Getting to a better place does not mean the setback was “worth” it.  It has been a struggle, to put it lightly.  It has taken all I have to give.   And its not over.

What getting to a better place means is that I have made the most of this period of setback.  In statistics, given that I am having a setback, I have ultimately used it to move forward.

Here are the highlights of what I have done this week to help myself:

I reconnected with my former speech and language therapist, Liz Joiner,  who gave me suggestions including some new resources for visual therapy and how my neurologist, Dr Hill, could help me get to visual therapy resources. Since visual therapy has helped me a lot, and since I am going through a visual reorganization, getting professional help with the next step, is definitely something I should consider.  Of course, they would have to do an evaluation to help the professionals decide if they can help me.

Liz also gave me some suggestions for a therapist who understands brain injury to give me some emotional support through this difficult time and who might be able to give me guidance and connect me with other resources here in Austin.

With the help of talking with others, I realized that the antibiotic I was taking for my bronchitis was wiping me out. So I started taking more probiotics.   That really seemed to help my gut — I could feel the difference.  What I have learned is that there are a lot of receptors in one’s gut.  And I have learned that helping my gut can help reduce some of the confusion in my head that I feel when I am sick and taking antibiotics.

How did I know I have begun having a visual reorganization?  My eye doctor in Washington DC, Dr Franke taught me how to recognize them.  One way that I recognize a reorganization is when I all of a sudden can see depth in a way I could not see it previously.  Its like flowers all of a sudden “pop out” with depth, that I didn’t previously see.

After my brain injury, I had depth perception issues.   What I know now is that I also had less than full monocular vision prior to my injury.  One of the benefits of doing vision therapy after my brain injury is that I have started to get back increased binocular vision and that the increased binocular vision that I am getting will make my vision system better than it was before my injury.

I want to be talking more (in my blog) about the benefits I have gotten from vision therapy in my recovery from brain injury.   For now, I want to say that Dr Susan Barry talks about her experience of getting binocular vision in her book “Fixing my Gaze”.   Dr Barry is a neurobiologist.  She understands the brain and brain development.  She describes getting binocular vision as a journey into seeing in three dimensions, in her book.   Actually, Dr Oliver Sacks first wrote about her journey in The New Yorker Magazine,  He called her “Stereo Sue”.   Dr Sacks was interested in writing about her story because getting binocular vision later in life is something doctors did not used to think that you could do.  And she did it as a result of finding vision therapy and optometrists who knew how to help her.

To finish this post, I also had the insight this week that I needed to let go of all the things I had planned to do in June and July that I have not been able to do so far.  I have been to sick to do them.

One of the things I did this week was start to re-focus on what I need to get done this month before my son’s school starts.   So my re-focus moved to a forward-looking strategy from a catch-up strategy.

And I also consciously worked on rebuilding this week.   I used Andrew Weil’s strategies of improving my surroundings to help lighten my mood and make me smile.  I bought flowers at the store and bought a sage plant with beautiful leaves to put by the sink to remind me of my new increased depth perception.   And I bought basil and made basil pesto which I love.  I started investing in the future, which is a good sign that of recovery for me. There is a point in recovery where I start feeling ready to invest in the future, and I have reached it.  I know that getting to the point of re-focusing and investment is a marker that my recovery is taking hold.

With my new vision for the future, its easier for me to get support for this last phase of my recovery back to or still hopefully surpassing my previous baseline.  Both from the inside and from others.

Yahoo!

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And now a summer cold

aforrest Leave a comment

I have been writing about recovering from a setback.   The positive side of this setback is that I have many tools from life experience after concussion and from rehabilitation (when I finally got there) to deal with my setback.

This week, I came down with bad summer cold.   It started with a sore throat.  I thought it was one more thing that was part of the setback.  And then it went to my head and my head started being congested.   By Sunday morning I was miserable.  I wanted to take my son to Church anyway.   Church is part of our routine, and when I am off routine because I am sick, its harder on him.  I have learned from experience that it will be better for me health wize to push a little harder, so that he’s on his routine.  So we went to Church.

What I didn’t expect was to find out that other mom’s had been sick from something that started as a sore throat and ended as a bad summer cold.  They said the sickness lasted for five days.  Another mom told me that it had become pneumonia for her and for 4 of 5 of her friends.

I came home armed with information for my husband.   I had a cold that might get worse.  I would need his support to rest, I would see the doctor on Monday. If I had what was going around, it might last as long as 5 days.   5 more days!   Man am I tired from compensating around my setback and feeling my grief.  Now this!

But the choice was accept it and deal with it well, or not.

And its brought me to my knees.   Chills, Fatigue, Fuzziness in the head, congestion, the works.

Seeing the doctor was incredibly validating.

Yes, I had whats going around,

yes, it was in my chest and had become bronchitis,

yes, it was long lasting,

yes, I was doing all the right things,

yes, I was getting better on my own (from sleeping and resting and limiting my activities further than previously including cognitive rest), and

yes, if it lasted much longer then it was bacterial and not viral and to take the medicine he prescribed.

It was so good to see him and be validated and told more about my path and what to expect and what others around me could expect.

The funny observation that I have to make here about having this bad cold is the following.

Everyone understands what a setback a bad cold can be both in terms of energy, time and in terms of head fuzziness.

So everyone around me was very supportive.   People helped with my son, my husband really leaned in more than he already had been doing, and I could get empathy and support easily in conversation with friends and strangers. I could use short hand about what was wrong and they got it. People gave me leeway and wished me well.

So even though I had an awful cold and even though I had been needing to rest for 6 months, I was actually able to relax more into getting well.   It was what it was and I got it and they got it.

So different from my experience of my setback caused by my dental appointment.  Where no matter how well I explain what my head is doing as a result of the sleeplessness and headaches, its so far out of people’s reference that they often look quizzical.   Not that I would have understood it either if I hadn’t lived it!

As I was getting better from the cold but head still fuzzy from the cold and from the setback and probably some combination of both, I did something that was really funny if you think about it.   I thought I would make myself a smoothie and I used a metal spoon to get peanut butter out of the peanut butter jar.  My brain wasn’t working so I am not even sure my thought process would have gotten me to a wooden spoon, I just did what I needed to do to get the peanut butter out of the jar.

And then I left the spoon in the high speed blender because the peanut butter wouldn’t come off it.  And I made the mental note that I needed to find something to get the peanut butter off the spoon.   My head was fuzzy and perhaps I got distracted or perhaps my executive functioning skills were worse since my brain was fuzzy or perhaps I couldn’t focus or concentrate or compensate around my attention issues like I normally do.  Who knows?

But I do remember later, seeing the mental spoon in the blender and thinking I need to do something about that.   I added frozen blueberries and some very frozen broccoli.  And then I put the top on the blender and pushed the button.

You might be thinking that there would be a noise when the high speed blender met the metal spoon.  And there was!

But my brain was fuzzy.  I did react to the noise.   I had forgotten what my eyes had told me about the need to pull the metal spoon out, or perhaps the signals in my brain were so loud and no executive was acting to regulate them as an unfuzzy, uncompromised brain would do automatically.

In response to increase noise, I actually turned up the speed of the blender.   I thought the noise was coming from over frozen broccoli, and surely higher power would help.

And, when that didn’t work, I tried turning up the blender for longer!

When that didn’t work, my frustration led me to decide I just wouldn’t have a blended up smoothie.

So I took off the blender top.  And found a very mangled spoon.  I also discovered that my high speed blender blades were mangled too, but hadn’t lost the toussle completely.

I poured out the smoothie, decided to throw away the spoon and wrote a gentle not to put in the blender that I had mistakenly “hurt” the blades.

Being gentle on myself seemed to be the most important thing to do right then.

And then I went back to bed to try to get better.

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Emotion affects cognition

aforrest Leave a comment

I am still recovering from the setback I had following my dental appointment.   Its been a tough week, partially because this setback has been going on since June 2, so almost 6 weeks now, and that means that I am tired of being outside my routine, and those around me are also!   I was ready to be back to my baseline weeks ago.

Its also been a tough week because I have been feeling alot of grief because of two recent deaths.   What I did not know when I first had my injury, and what I was taught in rehab once I finally got it, is how much emotions affect one’s ability to think.  With an injured brain, I have learned many skills around feeling my emotions and understanding how they will impact my injury.   I have learned many coping strategies.

In my case, it is my grief this week (and last) that is making my brain functioning more difficult for me.  However, both depression and anxiety are secondary responses to brain injury in my case and I have been having to cope with these as part of my setback.   I have learned that these secondary emotions of depression and anxiety that go hand in hand with reduced cognition affect my ability to think and use my cognitive skills of attention, memory, planning and executive functioning.

On Sunday night, I learned that my high school friend’s Dad passed away and that his memorial service was on Monday.   I wanted to go and I was the only member of my family who could attend.   My family and my friend’s family spent alot of time together because of my friendship but also because my brother was the same age as my friends brother and our mom’s became close also.  When my mom became sick with cancer, my friend’s family was a vital part of our support network.   In addition, my friend’s Dad was a doctor and I had gone to see him for medical advice (and shots!) for traveling to Peru when I was younger, so I knew him not only as a Dad but also in his profession.

I have also been grieving for a young woman, Ann Zeis, who I have written about on my blog.   Sadly, she passed away over the 4th of July and her family and friends reached out to let me know.   Ann was helping me on my blog, and had inspired me tremendously as we had common interests.  I am going to write a special separate blog post on her inspiration in my life tomorrow.  Ann died in San Francisco where she lived, so I have been struggling with the profound loss of her life from afar.

I attended the memorial service for my friend’s father which was beautiful and reminded me of many times in my life that I spent with my friend’s family.   I went to talk with my friend afterwards.   I mistakenly thought that the handsome man standing next to her was her brother, who like I said, I knew well in high school.  We had about a 5 minute conversation the three of us.   I then said that I had a doctor in the same building where my friend’s brother works.   Since the person I was talking with wasn’t who my friend’s brother, and in fact lived in Houston not Austin, and was someone I went to high school, he retorted his surprise that I would have a doctor in his building in downtown Houston.  I realized at that point that I was confused.

I laughed at myself.   My friend later told me how well I dealt with the situation–that laughing was just a great way to deal with it.   It has taken years to learn to laugh at myself when my brain just isn’t quite there.  Its taken years to be flexible and give my brain space when it needs it.   This setback–and the increased confusion and cognitive deficits that it has brought–has really made me have to draw on these coping skills.  Its also made me appreciate that although I did not have these skills when I first needed them after my injury, I have them now.   And I need them to make this setback as short as possible and I have incorporated them in my everyday life so they help me in my daily life too.

Years ago when I spoke for Dr Paul Avarich’s class at Eastern Virginia Medical School in Norfolk, Virginia, it was my laugh that Dr Avarich wanted his medical students to appreciate.   Dr Avarich is a neuroscientist by training and he taught a first year class on neuroscience to his medical students.  I had met him when he did lectures about neuroplasticity at an annual conference at Williamsburg.  I wanted to know as much about neuroplasticity as possible because I wanted to keep getting better.  Years later, I traveled down to speak to his class.  And he pointed out to his students that being able to laugh when I made mistakes or when I did not know what to say (which was often following my brain injury) was a tremendous coping skill.   I now have a deep belly laugh and, as he pointed out, it really lightens up a situation.

I have counseled many after brain injury that letting go of situations where the brain isn’t working and allowing it to be okay that one’s brain is doing what it is doing, will help make life easier after injury.   I know now that my brain being confused or doing what it is doing is not “me”, its just my brain not feeling so well.  I also know that my brain (functioning) will get better the less feelings that I attach to my brain being confused.   It is what it is.   And that I will be able to think better the more that I take it “in stride”.

So that is the challenge of this week.  Dealing with my grief for the death of two lovely human beings who have contributed greatly to my life and allowing myself to feel my feelings of grief.

And at the same time deal with the effect that my grief is having on my ability to recover after my setback.

Its okay.  I need to feel my grief, and feeling my grief, although it may temporarily increase the difficulty of dealing with my setback, is what it is.  All that I can bring to this process is the awareness that I now have about what’s happening with my brain.  And at least I have that, now!

I need to get off the computer so I will publish this as is.  When I am better, I expect to come back to these posts and edit them, but for now, they will have to be as they are.

Read More - Emotion affects cognition

Being gentle with myself

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I am 70% back to my baseline before the setback that I had.

My Neurologist, Dr Thomas Hill, thinks that the symptoms and setback were caused from headaches causing sleep issues for me which in turn caused increased cognitive deficits.  Since I already compensate around cognitive deficits, I am trying to adjust as best I can to the, hopefully temporary, increased cognitive deficits.   What I have learned in my recovery is that sleep deprivation causes the same symptoms as brain injury.  So the good news about that is that solving the sleep issues will solve the temporarily increased cognitive deficits.   And, like Dr Hill said, because I have successfully resolved 70% of my symptoms, it is likely that I will be able to resolve the other 30% of my increased symptoms.   He is confident of that I will, so my job is to be hopeful and continue to do what I have been doing and believe in his confidence.

It has been 6 weeks though and realistically I know that recovery from these increased deficits will happen at their own pace.

I also know that this recovery may not happen in a linear fashion.   What that means is that each step may not get me better, it may be that each step will lead to getting better but not all steps will look like progress until I am actually fully back to my baseline.   That is important because I know that getting my head and my psyche on board with my continued recovery is essential.

In some ways, achieving this last 30% back to my previous baseline will be much harder than one would think.

Here are all the things that I am balancing.   I want to resume my life as it was.   Its been 6 weeks, so I have put a number of things that I had wanted to do, “on hold”.   And I want to get back to them, above all.  Doing the things that I enjoy and give my life meaning–being a mom, a wife and an advocate–are what keep me going in life.   So not being able to do them like I could before, as a result of my increased deficits, makes my life tougher.

Since my deficits are not as bad as they were 4 or 5 weeks ago, after the setback but before I was able to turn the corner on getting better, it is easy for me to think that they are all gone.  They are not, and I need to finish the recovery, else this period of not being completely back to my baseline will be prolonged.   And I know from experience that it is easy to think that I can “push past” this period.   I also know from experience, and from the wisdom of my health professionals, that ”pushing past” the deficits I still have, won’t shorten this period of increased deficits.

My real choice is to continue to heal or to prolong my increased deficits.

My real choice is to spend more time and energy focusing of recovery and hopefully recover quicker, or to spend less time and energy focusing on recovery and recover less quickly.

The uncertainty of whether I will recover the last 30%, is of course the thing that ultimately is bothersome.   I have to believe in my doctor and my experiences of recovery and I have to have faith.

I was thinking this weekend that given what I am going through now, thank goodness I have been through this recovery and rehabilitation before so that I can rely on the increased awareness and knowledge and compensatory strategies that I learned in rehabilitation.

As usual, when I sit down to write, I have way more to write about than what I have planned.

Since I am still observing increased cognitive rest (20 minutes on the computer at one time), I am going to post this and save the rest for the next post.

Read More - Being gentle with myself

Better but not completely back and Happy 4th

aforrest Leave a comment

I am 70% better, but not all the way back to my baseline.

I had good news from talking to my Doctors.

My Neurologist says that if I have gotten 70% back, then the 30% will come.

He told me I am doing all the right things–cognitive rest and physical rest.

He was pleased that I had reached out to my support team and that what I am doing it working.

He did objective test to show me that although I have increased memory and cognitive problems, I can pass his simple cognitive tests.   They are still there!   When he was asking me questions, I remembered all the hard work I had done in rehab to get these back.   And I was thrilled they were still there.

More later.

Happy 4th.

I will continue to rest and get cognitive rest until the other 30% gets back.

 

Read More - Better but not completely back and Happy 4th

On the mend, at last!

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What a week!

I woke up Monday morning with a headache.

Up til Monday, I had been operating under the belief that I was getting better slowly.  I believed that I had gotten my headaches managed again as I was not having them anymore.   And while my sleep patterns weren’t back to my baseline yet, they appeared to be improving.  I was still waking up twice, but I has waking up later and later each morning — from 3ish to after 4 for the first one.   I took these all as good signs of healing compared to the previous couple of days.

Like I said, then, I woke up with a headache.   Getting my child off to a new camp with a headache was more than I could manage emotionally, although I did manage to get him there and get his day started with a successful dropoff eventually.

As I later described it, I think if I had woken up with a headache any other day, it wouldn’t have gotten to me, but to start the week with a headache was just too much.   And while I thought that I was getting better by the end of the previous week, it was clear that I wasn’t and that I needed to re-think the steps I was taking to get myself better.

There is nothing like an acute health crisis to show you exactly where the holes in your medical and rehabilitation and recovery team are!  And I already new that I had not yet managed to develop the support team around my persistent symptoms that I needed here in Austin, even though I have been working hard on that for almost 3 years.

So I reached out to former speech therapist here in Austin to see if she had any suggestions until I was able to see the Sleep Doctor.  I had called the Sleep Doctor’s office previously and they had worked me in for July 1 which was the earliest they could do it.  My Sleep Doctor, Dr Hudson, is a great doctor and thus is in high demand, so its not easy to get in to see him quickly.

My former Speech Therapist responded immediately that she had a handout on brain rest, but was not in her office and she suggested reaching out to someone who was in the office.

I also reached out to a friend who is an MD and is familiar with sleep medicines and brain injury recovery.   She confirmed that many of the medicines can exacerbate the cognitive symptoms.   Since the cognitive increased symptoms that I was having because I was getting poor sleep were really trying to me.  Trying to take the symptoms in stride was wearing me out.  So I was glad to be reminded that these options were a last resort.

In reaching out to others, I remembered that cranial sacral work had helped me in the past and that my former speech therapist had told me that many of her patients got calming results with that.  So years ago I had found the best cranial sacral therapist in town and had indeed gotten alot of relief from this modality over a years period.  So I reached out to him.

The person who had done cranial sacral therapy for me agreed to do some for me even though he was in the process of leaving Austin.

Tuesday I felt better because I had reached out to my network and knew more of my options.

And Wednesday morning, we did a cranial sacral session which helped.  I had more energy afterwards, I felt better and I slept quite differently that night.   The next couple of days, I realized that my cognitive deficits were no longer getting worse each day from unrestful sleep.   That was a huge relief!

I am going to have to explain how it helped and what it did and did not do, but I will wait til next week, since I still am managing how long I stay on the computer.   I am doing minimal editing of this, and will come back to things I have missed in this description when I am back to my baseline.

 

Read More - On the mend, at last!

Staying Afloat–Part 3

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Wow-I am still working hard to return to my baseline before my Dentist’s appointment.   Its going on 20 days now.

Wow, that has been a long time.

I don’t want to stay on the computer for more than 20 minutes, as I know the computer is not harder on my eyes and can wake me up and since I am having sleep issues still, I want to be firm on observing that.

So I am going to make this post short.

I am really thankful for all I have learned in rehab to help me manage this setback.

I am also really thankful for the doctors that I have who are helping me with it.

I have realized on my own this week that I need to be writing a sleep diary, so I am doing that.

Here the big points of what’s happening.

I got my headaches under control.

So it was lack of sleep (from waking up in the morning) that was the issue and subtle but increasing cognitive issues coming from not being able to get quality sleep.

I did a sleep study last week (that was luckily already scheduled) and will be able to see what issues can be understood from that once the study is interpreted.

I have made appointments to see my doctors here and in the meantime am trying some home remedies based on the Chinese medical notion of which organs are active at which time in the early morning.   More on that later.

On Tuesday, I was thoroughly bored, because I have had to disengage from my normal life so much.

I took boredom as a good sign.  I was out of pain.   I started trying to plan ahead.    A doctor reminded me that I needed to take my health issues first and to not jump the gun on getting back to the baseline.   Its a huge temptation in the face of uncertainty to want to plan as though everything will be fine soon, but can also be a trap.  I have learned that healing is not a straight line upward.

I started planning more engagement with people which was helpful.

I felt pretty frustrated on Wednesday as I wanted to get well faster.  Each day I was getting more sleep and waking up later, but still waking up in the morning.

Thursday, I woke up alittle down as my waking up moved from waking up later to waking up earlier.

I had to remind myself that I didn’t really know if that was better or worse.

The last two days I have appeared to feel more rested even though I am waking up still twice in the morning and at earlier times.

Like I said, I am really grateful that I can articulate what’s happening to me so much better than I did previously.

I have the vocabulary to talk about what’s happening and the ability to dig it out of my memory so that I can talk about it.  These are gifts of rehab and my public speaking.

And I have a lot more support of what I am going through because I can articulate it.  I have support from my husband and close friends and I have support from other moms, who get that not being able to function very well affects my ability to be a mother.

I know I need to be more concrete, but will do that when I feel better.    And I realized this week that this experience is useful for thinking about what its like for people with unidentified TBI who don’t have the support of doctors or health professionals or the vocabulary or the social supports that they need to get through a concussion that isn’t healing itself.

Its also a reminder that I know that I will come out of this, I just don’t know when.   I know that because of my experiences with my recovery.   I did not know that when I first had my concussion.   And I heard from many professionals that I would not get better of I wasn’t better in two years, so I had a sense of a deadline that I was not getting appropriate treatment to meet.   So I am glad to know that I will come out of this and that I just need to use my tools and my resources and communicate as best I can and take care of myself.   I don’t know when I will get better, so I need to manage that uncertainty, but I know that I will.

 

 

 

Read More - Staying Afloat–Part 3