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Member
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Join Date: Sep 2012
Location: Columbus
Posts: 304
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Member
Join Date: Sep 2012
Location: Columbus
Posts: 304
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Suggestions
Quote:
Originally Posted by dancingcavalier
Wow guys, thanks so much!!! 
I do a lot of things at work (nonprofit) but most recently they've had me on grantwriting. Ultimately want to work in museum education, so it's great ground experience, but I am painfully slow now. Not used to being slow at things and one of my worst faults is impatience with the inability to keep up, so I'm having to fight back my own frustration as much as anything else. A good learning experience for sure, but graaah.
@Dfayesmom, yes I am definitely having weird vision symptoms. The longer the line and bigger the paragraph, the more words blur into each other. Have my annual vision appt coming up soon and will definitely ask them for a reference! Have also lost most of my ability to edit since scanning is so hard.
I finally got back into reading, and honestly the best things I've found are books that I can laugh with friends about-- and that don't have to make any kind of sense to begin with. Reading the Mabinogion right now and it's hilarious, uses good vocabulary, and like most Celtic mythology, often makes no sense whatever. Also playing the Inklings' Irene Iddesleigh game (who can read the longest aloud without laughing) with my friends. Nerds ftw.
(Can't post links yet, so to digress: Amanda Kittrick Ros was renowned by Mark Twain, Aldous Huxley, and the Inklings-- Tolkien, Lewis, etc-- as the world's worst novelist, and her works are unintentionally incredibly hilarious. For instance:
 )
Things also look like completely different things at first, both in pictures and in words-- so for instance I'll see something like "great" and instantly read it as "Geoffrey" and then be like wait what??
Vitaminswise, have been taking a daily multi and have been trying to work with omega-3s-- but the latter upsets my stomach really badly. Heard krill oil is better than fish oil, but haven't been able to find any pure (and can't afford a whole lot of supplements :/ )
I'm completely out of sick and vacay time and lost an entire paycheck to unpaid sick leave, so unfortunately I don't have a lot of options as to therapies at this point. I tend to work very long days, so I've had trouble getting my life back in other ways-- did kung fu/tai chi briefly before my accident, and was forbidden by my neuro (contact sports.) Emailed my sifu to see if i could come back and just do forms with no sparring. It's my sanctuary, and I really, really hope I can go back soon. Any therapies I can diy are what I'll need to be looking at right now; barely even have time for my annual appointments.
The hope thread at the top is super helpful-- thanks guys! It's like an "It Gets Better" campaign for mTBI and TBI :3
I've been keeping up with the studies and frankly quite annoyed that we didn't do these 30 years ago. So many came out in March that would have been super useful to know in January!  grouse grouse, gripe gripe, say n'more 
Oh also, has anybody else been getting The Look with people you encounter? The one that is like simultaneously "you are a problem but I am too polite to say anything" and "wow, you're so stupid" and "I'm not sure if you really mean this or if you're making it up, you can do this, so why can't you do that?" It's been one of the most discouraging parts of recovery.
Oh, a discovery of my own! I joined *edit* a few months ago as a beta, and that has really helped. It's essentially structured CBT/positive thinking exercises in a social media setting and a super sweet community. I still have a few invites left if anybody wants one.  |
The "are you stupid?" looks really got to me! I went a long time before getting a diagnosis, so for a while, I did think I was stupid! There are a couple people I can't forgive for how they treated me, even though they didn't t know my diagnosis. There is such thing as kindness, and I think more people need to embrace it rather than think other people are so inferior. I worked with a couple Queens of Snark!
I wouldn't bother going to your next eye check. If you're having concussion related vision problems, they will not be able to get a good read on your eyes. Instead I would get a referral from your neurologist for a neuro ophthalmologist. But if you are having money issues and time issues, you will be limited in what you can do to help make yourself better. In terms of money, I personally had to prioritize. My vision therapy has cost me about $600 so far out of pocket, but insurance has covered the rest. I told my husband not to get me any birthday presents this year, but that my vision therapy was the best gift I could have. I don't know what your situation is, but maybe you might be able to pinch some pennies here and there to help pay for therapy? Or is there anyone who could loan you money? I know a lot of people don't have those kind of resources, but some people just hesitate to use them. If there's ever a good time to use such resources, it's now. I had to borrow some money from my parents which I will repay them as soon as possible. I guess all I'm saying is that I had to learn it was okay to ask for help wherever I can get it!
As for time, if you don't have enough time to take good care of yourself, that could pose a problem. I think most people with PCS have had setbacks in recovery because they tried to do too much. I know I have. If you have to work, you have to work, but try not to overschedule yourself. Your brain needs actual rest to heal!
Is it possible that your employer might be able to assign you less taxing responsibilities for a little while?
I'm sure other people will have helpful suggestions about working with PCS. I had to take a leave of absense from work after my diagnosis and then was laid off, but I did work for about a year and a half with PCS symptoms before getting diagnosed. 1. If you can take little breaks to rest your eyes for a few minutes throughout the day, do it! It can really help! I used to go hide in the bathroom or go out to my car for fifteen minutes. 2. Forget your social obligations and worry about what's best for your health. True friends will understand, and who cares about the rest? I made the mistake of still going to lunch with friends everyday, even though I couldn't enjoy the experience and would have been better off resting. Of course some social interaction is great for keeping your spirits up, but you should try to strike a balance! 3. Try to institute fail-safe measures to protect yourself from making mistakes. I wish I would have done this but I was in denial that anything was wrong, and I created quite a few problems that only came out later. Embarrassing but not really my fault. I'm sure that is part of why I was laid off.
Good luck! I hope some of this helps!
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I have recovered my cognitive function, and I've overcome severe vertigo through sensory integration therapy. Wellbutrin has helped me escape depression. I have recently had a few stress-related migraines, as well as headaches stemming from eye strain. I'm also dealing with tinnitus, lack of stamina, extreme light sensitivity, and eye pain. Diagnosed with 9 different vision issues: convergence insufficiency, pursuit eye movement deficit, egocentric visual midline shift, photophobia, visual information processing delays, accommodative insufficiency, saccadic eye movement deficit, lack of coordination, and central peripheral visual integration deficit.
*First concussion: October 2010. I was pregnant and got rear ended. I associated my mild PCS symptoms with baby brain and blamed my light sensitivity on allergies and dry eyes.
*Second concussion: December 2011. I hit my head on a wooden beam, saw stars but did not lose consciousness, and I had very disturbing PCS symptoms but didn't go to the doctor.
*Third concussion: August 2012. I caused a car accident as a result of PCS symptoms. Thankfully no one was injured but me. My husband confronted me, and I finally sought help and took medical leave from work. My symptoms worsened, and I developed severe vertigo.
*Fourth concussion: November 2012. I was riding in a car with a friend and we were hit head on by a driver who lost control of her car. I didn't have a big increase in PCS symptoms.
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