Wednesday, November 16, 2011

Fatigue will seriously be the end of me...

Since my last doctor's appointment, I've been trying to slightly increase  some of my activity.  He said it's important to strike a balance between resting my brain and keeping up enough activity that I continue to get back some endurance. 

Sadly, not sports endurance or cardio endurance.  Simply life endurance.  It seems like such an easy concept, just go out and live your life.  But with fatigue constantly hounding me and the constant anxiety that I will experience  a set back becuase I've done too much, its hard to go past the bare minimum. 

As any doctor will tell you in the case of trauma,  if it hurts, don't do it.  This was the most recent advice I had regarding my restrictions.  If followed that advice, I probably wouldn't get out of bed in the morning.  Daily life hurts.  Period.  Nothing is going to fix the fact that no matter how easy I make my day, I'm still going to be beyond exhausted, but unable to sleep for the amount of time my body needs, because my brain won't let me.  My ears are going to start ringing in the early evening.  My eyes are going to feel beyond strained by 3pm or so.  There's a 50/50 shot at any given moment, I'll have some sort of painful pressure in my head.  By dinner time I will stutter or misplace words and thoughts. 

Accepting that this may not change even with therapy, would not be so bad, except that I feel so painfully exhausted all the time.  Like I have the flu, or pulled a few days of almost all nighters in college.  At least then, my body would let me sleep when the time came.  The 8 hours I'm getting right now, is not helping me feel any less tired.  I wish I could sleep for a week. 

Thinking I need to build that endurance, I've tried doing more daily.  Yet this doesn't seem to help either.  Longer walks, more duties around the house, going out more often or visiting with friends.  All lead to concussion hangover.  But this time of year, its hard to cut stuff out of daily life. 

As I sit at home all day everyday, and I STILL feel like I don't have enough time to get everything done.  Between insurance phone calls, drs. appts, therapies, household duties, etc, my whole day is gone.  Why?  Because I can no longer multi-task, and it takes me twice as long to do everything, plus the many breaks I need in between things.  How do I fit in more "stuff" during this busy time of year....

No matter what I do, too much or too little, I do not see an increase in endurance for daily life.  I just feel tired, weak, and overwhelmed. 

What's a girl to do?

Thursday, November 10, 2011

Progress!! I'm making progress!!!

After seeing my main concussion Dr. last Monday, I was somewhat depressed and down hearted.  The appt started with the standard neurocognitve testing I go through every time I see them.  During the test I felt like I had done a lot better than the pervious two testings.  However, upon completion my symptoms were out of control.  For the first time in a long time, my glasses were not enough to keep out the fluorescent overload of a typical white walled doctor's office.  I sadly sat once again, looking like the party girl in hangover sunglasses. 

My Dr. said that all of my therapist report that I continue to make progress and that he is happy with how things are coming along.  However, he followed that with, you still have a ways to go, because you are still symptomatic when you brain is challenged, such as with this testing. 

He then went on to dash my hopes of at least partially freed from my concussion prison.  The good news was that on the testing that did not require a ton of visual processing by my brain or that was not under a timed deadline for response, I had improve my scores.  However, if my brain had to process too much visual information, or had to make an immediate decision on a task, my scores had stayed the same.  Further the fact that testing made me so symptomatic made him believe that I need to continue all my therapies and that I'm not ready for Grad School for the spring.  Basically he felt that it would only increase my symptoms, and I would not be able to perform at a level that I was comfortable with.   "See me in four to six months, unless you feel alot better sooner and can do more without symptoms." 

I left crushed.  Depsite the medical knowledge that their is truly NO timetable for recovery from concussion and that it is truly a wait and see game, I felt like I had failed.  But I go to three different therapies every week!  All those exercises they give me to work on at home?  I do them religiously every day, and with the tougher ones sometimes twice a day.  I'm doing everything I can, and I'm still stuck here?  What did I do wrong? 

This morning I had vestibular therapy and filled my therapist in on what had happened during my appt earlier in the week.  I also told her that vision therapy seems to really be messing with my brain.  She laughed and said, how long have you been doing vision therapy?  3 weeks, I replied.  She said, have you stopped to think that maybe this new type of stress for your brain may have hindered showing improvement in all areas?  Many of my patients when they add a new therapy in, see a decrease in their scores for a few weeks because their brain is struggling with the new skills its trying to relearn. 

The more I thought about it, it makes sense.  The past two weeks have been really a struggle.  And although some of it can be attributed to days where I over did it, two weeks ago is when I actually started working on vision therapy at home.  So the fact that I atleast stayed the same, or in some cases improved is great. 

She added that she and my main concussion Dr. feel that my vision is really what is causing me to continue to struggle, and that my scores on the testing are not necessarily a true read of my current cognitive abilities, because the test is given visually on a computer screen.  In timed portions, if I blink or need to refocus my eyes, I'm going to miss something.  So improving my vision should improve my daily life, including my vestibular difficulties. 

"Because you are making such good progress here at vestibular therapy, and most of the struggles you still have are very much related to vision, we feel you only need to come in every other week now.  You'll still do the exercises I give you at home to maintain what you've already gained.  But your focus should be on vision, since you've made such progress here."

I only have to go every other week?  There may actually come a day, when they tell me I don't need to come back at all!!  What a good feeling that is!! Praise the Lord!!

Wednesday, November 9, 2011

Someone teach me how to say No!

The holiday season might kill me. 

I haven't posted in a while because I've had a lot of "concussion hangover" days lately.  Its one of the annoying parts of having PCS.  Basically anytime I over do it, I get what I refer to as the concussion hangover.   It's the pain of a hangover... headache, nausea, feeling like you've been hit by a bus, without the fun night of drinking the night before.  Sometimes it can start during the even t of over doing it.  Other times it doesn't hit until the next day.  EIther way it pretty much ruins the next day, or two, or three, while my brain tries to recover from the overstimulation. 

my family came home for my birthday the weekend of Halloween.  Lots of uplifting events.  Dinners and lunches wiht family and friends, some shoppoing etc.  Adrenaline kept me going for most of it, although I was exhausted and headachy by mid day each day.  However, I mde it through the weekend.  Come Monday, I crashed adn was pretty much down for a week.  Still working through vision therapy, extended computer time really bothers my brain.  So I stayed away from it most of last week. 

Then last weekend, I went to a fun event at Geoff's parent's church.  A Thanksgiving Dinner Potluck.  I was so excited to go out, spend time with friends and family, etc.  However, I got carsick on the way there and underestimated the noise that would be produced by so many people enjoying dinner, talking etc.  Even with ear plugs, it was a rough on my brain.  Emotionally, it was completely worthwhile being there and I felt uplifted after being around people for the evening.  However, my brain made me pay for that evening of fun with another few days of concussion hangover. 

I don't think it's the events themselves completely that bring on the hangover effect.  Of course the overstimulation is always hard on my brain.  However, on top of that, during the day my brain is still trying to take on everyday life.  Therapies 3 days a week, different doctors appointments,  dealing with financial problems from being out of work, etc.  Phone calls to insurance companies, drs, financial institutions, etc.  Someone recently suggested a hobby.  I said, I really don't have extra time for that.  The person look at me, laughed sarcastically and said, but you have all the time in the world!  I wish that were the case, I'd probably improve faster.  But my day is filled with therapy (various exercises throughout the day at home), therapy appts, drs. appts, phone calls, regular life duties around the house, etc.  By the time I complete all that, I'm too exhausted for anything else.  All things I need to do in order to get better and keep the rest of my life that is in hold, in a hold pattern without consequences. 

Try to add in anything else, at the end of the day and I'm sunk.  ::Cue concussion hangover::  But without some outside stuff, like family events, time out of the house shopping or at restauarant I'll go crazy.  It's kind of depressing to only leave the house to go to therapy appts or the dr.  In an effort to help me stay upbeat and feeling human, Geoff and I have worked hard to find excuses to get me out of the house for a little bit.  This is great for my mood, but too much of it leads to concussion hangover. 

As the holiday season approaches I see our calendar filling up quickly.  Since this 9 month disaster began, I have missed out on many opportunities to hang out with friends, family etc.  As I continue to make slow, progress, but progress none the less, I feel I'm expected to keep up with all the commitments.  Especially since, most of them involve people who I haven't seen or kept up with during the past 9 months.  How do I say no?  Especially when that means pushing people away, and having to pick and choose between events and thus, people. 

Yet, I can't afford to take a step back in the recovery process by putting my in home therapy stuff by the wayside in an effort to conserve brain energy for different commitments.   How do I find a balance that isn't going to lead to concussion hangover?