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A Day Inside My Brain Injury

02 Mar

March is National Brain Injury Awareness Month, so I thought I’d give a little peek inside my brain. It’s been over a year since my concussion.  From the outside, I look fine.  Walking down the street, nobody would guess much of anything is wrong with me.  And I’m so thankful that I AM doing much better than I was twelve months ago.

Still, my life is anything but back to “normal.”  I can’t work.  I can do probably one “big activity” a day (you know, like going to the grocery store).  I get easily overwhelmed.  I have headaches a LOT.  Here’s what my day today looked like.

This morning, I woke up with an edge of a headache.  I’ve had a pretty bad migraine for the past two days.  I take a migraine preventive medication every day, and I have another migraine-stopping medication that I can take when a migraine starts.

Unfortunately, I can only take the migraine-stopping medication a maximum of six times a month, and I’ve already used up my allotment this month.  Today is the magical day when I can get more, but I have to wait until the pharmacy opens.

Because I don’t have headache meds, I don’t want to drive my son to school.  It’s a half hour drive there and another half hour back, during rush hour.  Driving is a definite headache trigger, especially in a high-stimulus setting like rush hour.  There’s a lot to pay attention to, which overloads my brain and gives me a headache.  Even if the headache doesn’t actually come on while I’m driving, I’ll probably get one soon after.  A very kind friend whose kids go to the same school agrees to take my son, so I don’t have to worry about fighting the traffic this morning.

Before my concussion, I used to commute an hour to and from work every day.  It was stressful, definitely, and not my favorite part of the day, but it never put me out of commission for multiple hours.  My brain just can’t handle input as efficiently any more.  If I push it to do too much, I’ll have to give it time to recover later.

I get up, get dressed, and take my morning medicines.  I have one prescription for depression and anxiety.  I had a little trouble with this before my concussion, but the concussion has made it much worse.  My moods are all over the place.  I react very strongly to things that don’t seem like that big of a deal, even to me when I think back on them later.  The meds have helped stabilize me a little bit.  I’m also taking five dietary supplements specifically for my brain.  These are things that have been shown to help with memory, rebuilding neural networks, and reducing harmful neurotransmitters.

It’s time to head out to physical therapy.  I’ve been having trouble with my back and leg.  I had some trouble with it before my concussion, but it’s gotten much worse since.  I’m not sure if getting out of shape while I was resting after the concussion made it worse or exactly what happened, but the pain from my head and the pain from the rest of my body sure don’t help each other.

I spend a half hour getting various muscles ultrasounded and forty-five minutes exercising in the therapy pool.  It’s one of the few types of exercise I can do right now without hurting either my head, my back, or my leg, so I really look forward to getting the activity.

After physical therapy, I go immediately to the pharmacy.  My headache medication is in, and I can pick it up!  These six pills have to last me for two weeks.  They work most effectively if taken at the beginning of a headache, so I don’t want to wait too long to take them.  At the same time, if I take them for every little headache, I’ll burn through them in a few days and not have any left for the bad headaches.  It’s a fun balancing act.

I’m still feeling pretty good.  My headache is staying at bay nicely, so I decide to run a few errands.  I need to go to Sam’s Club to pick up groceries.  Before my concussion, I never realized how overwhelming a grocery store is.  I empathize much better now with those kids screaming in the aisles.  There are lots of bright lights, visual input everywhere, people coming and going, and at some places, people trying to give you samples all the time.  It’s a lot to deal with.

Sam’s doesn’t have background music, but the warehouse setting is incredibly echo-y and the overhead lights make everything über-bright. I’m only there for about three minutes before I realize I’m not going to make it out without a headache unless I do something.  I pull a set of earplugs out of my purse and put them in.  I also put on my Justin Morneau hat to help keep the overhead lights out of my eyes.  Now I’m insulated a little bit and think I can probably make it through the store without a headache.  Sorry, sample people, if I ignored you.  I wasn’t trying to be rude.

I get my groceries and head home.  I have about an hour before I need to go pick up my son from school. I take the time to rest up and de-stress in preparation for the drive. The afternoon trip isn’t usually so bad because traffic isn’t so heavy.

After I pick up the boy, we stop by the library and then head home.  By now, I do have a headache coming on.  My husband is home from work, so I take a headache pill and go to lie down for a while while it kicks in.  My husband kindly makes supper.  The pill stops the headache (LOVE that stuff!) and after a brief rest, I rejoin the human race for the evening.

After I write this post, I’m going to take my evening meds — migraine preventive and some melatonin to try to help me sleep.  I don’t sleep very well since my injury.

And that is a day in the life of my brain injury!  If you are brain injured, please feel free to share a link to your blog below — or just post a day in your life here if you don’t have a blog.  If you are not brain-injured, thanks for reading and becoming more aware.  Please share any questions or feedback you have in the comments.

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5 Comments

Posted by on March 2, 2012 in awareness, updates

 

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5 responses to “A Day Inside My Brain Injury

  1. Peter Nichols

    March 2, 2012 at 11:37 pm

    Thank you for sharing that, Eowyn.

    I had an unusually good day today that isn’t very representative of what I’ve been dealing with lately, so I’ll kind of construct an “average” day.

    I wake up and listen to the news on my computer: NPR, PBS, or Rachel Maddow. Sometimes I’ll listen to an audiobook instead. This is done with minimal lighting: blinds closed and one lamp on outside of my field of view for ambient light, and so my pupils aren’t too dilated when I’m looking at the computer. I wear two pairs of clip-on sunglasses whenever I use the computer, and magnify the screen several times to make it easier to read the text. I also have the backlighting dimmed as much as possible and have a transparent yellow plastic sheet taped over my screen. I close my eyes while pages load, and every few minutes if I’m browsing or checking/writing emails. On some days, I’ll have to do as much of my writing as possible with my eyes closed, and then just go back and check for errors. I don’t read any long passages on the computer; instead, I use “Text Aloud” software that allows me to highlight the text and have it read back to me. I close my eyes during this. With all of these modifications, I can spend a total of 1-2 hours on the computer over the course of the day (not including time spend just listening with eyes closed).

    After an hour or two of auditory stimulation and occasional looks at the computer screen, I need to take a break for at least 10 minutes, and sometimes longer, in silence and darkness. Generally I take at least one or two long breaks (half-hour to an hour) per day and several short breaks. During the long breaks I’ll meditate, lie down, and/or stretch.

    I can usually tolerate either a couple of errands (I can still drive, but it makes me dizzy if I do it for very long) or some social interaction, and sometimes both. In general, I tend to have a window of around 2-6 hours/day of activity tolerance. The following is a list of activities that I have to limit: computer use, reading, watching TV, conversing, thinking, walking, driving, playing guitar or piano, being in loud or bright environments, etc. Some of these stress me out more than others, but once I get overstimulated, I get a headache, dizziness (imbalance), fatigue, brain fog, and increased light and sound sensitivity. Then I have to stop everything and take a break.

    On bad days, I do not leave my apartment. On good days, I can spend maybe half of the day out and about, provided I am finding ways to work in breaks.

    I am able to do small amounts of work. For the time being, I am still employed as an Editorial Assistant with the Journal of the History of Philosophy, which is funded as a project assistantship through my university. It’s contract work for the semester that pays a monthly stipend and provides health insurance, and the work is done on an as-needed basis. It’s never more than 5 or 6 hours/week, and I work almost exclusively with hard copies, which is much easier on my brain.

    After a round of editing, I have to be extra careful with reading and computer work for at least a few days, as I also get eye strain very easily (haven’t diagnosed the source of this yet). Once this semester is over, I will be unemployed and uninsured, and am planning on moving back in with my parents until I heal enough to work full-time.

    I have been injured for over 13 months, though the past 7 months have been particularly difficult, as I did not experience any light sensitivity before that. I had felt almost completely recovered, except for regular mild headaches and occasional brain fog, and after spending an entire day working on a paper at the computer, everything came crashing down and I fully relapsed. Now I also had the additional symptoms of extreme light sensitivity and eye strain. Since that time I have made very little progress overall, whereas I had started improving regularly two months after my initial injury.

    Now I’ve veered a bit from my “day in the life.” I ration the aforementioned activities over the course of the day and alternate them with the rest periods I mentioned. When I have to take the bus or walk around town, I always wear ear plugs and dark sunglasses (sometimes two thick), and any trip to the store requires a hat and two pairs of sunglasses. I have the corners of my “super dark” pair taped up with black duck tape so that absolutely no light comes through.

    At the end of the day I take my benzo (prescribed much earlier for an anxiety disorder), log my symptoms, and journal. I listen to ambient music to relax and fall asleep.

    That’s more or less the idea, though I’ve left out a lot of finer details.

     
  2. Joan

    March 2, 2012 at 11:57 pm

    I can’t even imagine, but I saw you struggling while I was with you. May you have peace and may the headache preventer do it’s work well. Love you, M <3 m

     
  3. Lydia H

    March 6, 2012 at 1:33 am

    I have sleep problems, too. I rarely manage to fall asleep before 1:00 or 2:00. Keep on going. It gets better.

     
    • Éowyn

      March 6, 2012 at 8:30 am

      Lydia, I am laughing because I received and approved this comment at about 1 AM when I couldn’t fall asleep (and apparently you couldn’t either)! :)

       

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