Back to my systems again

A checklist is my friend

Okay, time to rewind a bit… my memory has been really failing me a lot, lately — moreso than usual — and I’ve been noticing it a lot more than usual. I don’t know if it’s because I have been more forgetful, or I’m just more aware of it. I suspect it’s because I’m more aware. At the same time, though, I have been misplacing things a lot — things I need to not misplace. My notebook with all my recent notes and tasks in it, for example.

On the other hand, my memory has been improving in other ways — I can remember short sequences of numbers and letters better than before. I’ve been practicing, so I think that’s been helping.

But this morning — for the first time in a long time, I couldn’t remember if I’d washed my hair while I was taking my shower. I washed my hair again, for good measure — then remembered that I already had.

So, I need to get back to the tools I’ve used before, to keep me on track. I’ve gone back to using a paper-based datebook, rather than my smartphone, for keeping track of things. I’ve been “winging it” for the past year or so, with just a smartphone to keep myself in line, and I don’t think it’s helped my memory. I also don’t like being dependent on an electronic device. I need to start keeping my notes in a notebook where I can see them and track them. I let a LOT of stuff slide over the past year, because things sucked at work, and I just didn’t give a damn. Now things are changing at work, and suddenly I feel like I can afford to give a damn again.

That’s nice. But it also means I have to step up my game and get myself back on track.

Which I will.

I need to not be complacent, not sit life out and say, “It’s out of my hands, so screw it.” I need to get involved in my own life again – and so I shall.

Make notes.

Keep track of things I’ve done, the things I need to do, the things I haven’t gotten done yet.

And just do the things I set out to do.

It’s not terribly difficult, if I think about it — it just takes a certain sort of technique, which I once had. I’ve done it before, so I need to do it again.

First step of the day (after posting this): Find the notebook I got for this year, and write down the things I need to do, that I had written in the old notebook that I lost over the weekend. And get on with living my life again, like it’s really mine.

Because it is.

Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

9 thoughts on “Back to my systems again”

  1. Acetylcholine has a lot to do with memory, some meds prescribed for neuro problems lower this ironically. Look into Huperzine B it helps block the enzyme that destroys acetylcholine. As we age a lot of decline starts to take place in our hormones and neurotransmitters but sometimes I think the lowered levels happen because of “other factors”.

    Keep fighting back and never accept defeat use whatever works for you, however gets some extra help from nutritional supplementation. What works for me (vascular dementia) and my client I take care of who has three TBI s, is a combination of Acetyl L-Carnitine and R-Lipoic Acid. I buy these from Nutrabulk for a pretty fair price.

    I know my situation is not exactly the same as yours, but we do have something in common, I too must still earn my living and so I have to work, and so I do whatever helps which for me is:

    – Not listening to my doctor (perish the thought) when she tells I am just getting old (43 yrs)
    – Read all the info I can find about brains and decline of any kind
    – Take a plethora of nutritional supplements
    – Trust God, He made me He will always take care of me
    – Get up everyday and keep going

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  2. Thank you for your kind words and great info jeanie – I am definitely NOT giving up.

    That’s very interesting about the acetylcholine – I am a little familiar with it, but not very much. I will have to learn more. And thanks for the tip on the supplements. I will check them out. I have to be careful of supplements, because of my stomach, but I imagine I could take some, on a semi-regular basis.

    Not giving up is the most important thing of all for me. There are many days when I feel like I am losing my mind, because on the outside, everything looks normal, but inside things are so turned around, and I’m just trying to keep up and not lose my place. No matter what anyone else might say, I do need to keep going, and I do need to do whatever I need to do, to manage that. That means being a lot more disciplined and deliberate than most folks I know – not being quite so loosey-goosey with things that I tend to mess up (but others magically manage to handle well). My friends give me a hard time about “working too hard” or being “too serious” about things, but certain things are very important to me, so I do what I must to make sure they are tended to properly.

    Anyway, on it goes. Thanks again for the info and best of luck to you and your client.

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  3. I have trouble remember mundane things such as whether I took vitamins or such. It is concerning that you did not recall washing your hair. Maybe your stress level is a factor or workload too as the mind can only focus on so much. I heard a segment about veterans with post traumatic stress syndrome who experienced vision problems. I know this is unrelated but you educate a lot so I thought I would mention. The veteran interviewed had trouble reading. When the problem was addressed and he found help, he improved. He said that you may not be what he once was but it is his new normal and it is better than he was. This link may be helpful.
    http://www.nlm.nih.gov/medlineplus/news/fullstory_131238.html

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  4. After reading how you are switching back to taking notes in a journal I realized that might be something I should be thinking of as well. I’ve been losing things on my iPhone and awhile before that I used a Palm Pilot. The Palm Pilot worked better for me, and I don’t quite remember why.

    Someone had just asked me for notes and I realized I might not be able to retrieve them as I don’t know how to access my old Palm Pilot any longer and for some reason either I’m putting things in the wrong places or I’m not saving them on the iPhone. Were these similar problems you were having?

    Let me know if reverting to journals is helpful again. You are always moving in the right direction and have clear focus of what you want to do. Yeah, I see where you’ve struggled but you also have mTBI and I bet few people around you know that. Often I believe those struggling with TBIs are more aware of their surroundings and compensatory methods than others.

    I am sincerely sorry you are forgetting more recently. Are you forgetting or not remembering? LOL If you eventually remember something, when you thought you forgot it … that’s a good thing! At least someone the neurons are working on those connections.

    Now take a step back and keep taking care of yourself. I bet on most days you can rate your memory #10 out of 10. I can and I find that because others around me know I have an injury they feel I’m at fault for everything! Oh well, I’ll take the blame but I won’t take the blame for others not keeping their minds sharp!

    Take care and stay safe. Edie

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  5. I would like to connect to the broken brilliant TBI community. Here is my story

    When I was thirteen years old, I was crossing the street to school and them I woke up almost a month later in a hospital bed. I had been run over by a car crossing the street to school. What followed was even harder for me. Months of physical, occupational and speech therapy. Trying to get the old Willy back, but sadly that kid was gone.

    Physical therapy for my body, to learn how to walk step by step and to function as a normal human being again. Re-learning how to eat with silverware, how to dress myself and tie my shoes. Speech therapy for learning how to articulate simple words, how to use my lips and to close and move my mouth again. Speaking for me still tough to this day, but I do it anyway, I don’t let it stop me.
    Occupational therapy to help me move my arms and use my hands. All of it so I didn’t have to be in a wheelchair or in a hospital bed for the rest of my life.

    I speak differently than most and it’s hard for me because people will say “I don’t understand you” or “can you repeat that again”; I have heard it all. Life is even harder now as an adult, but I am still here with the same dreams and hopes I had many years ago. So I woke up every morning and keep moving forward…and won’t let it win!

    I am having trouble meeting people to make friends. Does anyone have suggestions?

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  6. Hi Willy,

    Thanks for writing. There are some great people who post comments to this blog. I also suggest you check out the PsychCentral TBI discussion forum at http://neurotalk.psychcentral.com/forumdisplay.php?f=92 – there are some good people there who have a lot of useful tips to share.

    Sorry to hear about your injury and your long trip back. Congratulations for keeping going and keeping working. It is a constant effort, and many people just quit, but you did not. So, that is great.

    For meeting people, I would suggest doing some volunteer work for folks who are less fortunate than yourself — helping to serve meals at a shelter, “meals on wheels” type of organizations, or visiting folks who are alone. Those organizations always need help, and I’m sure they would value your contributions. Also, the structured activity is really important (for me, at least). If I have a specific job to do, it is much easier for me to interact with people and socialize. Also, I prefer doing volunteer work that is manual. I am helping at a local food co-op later this month to prep the fields for winter, so it should be perfect for me — it’s a lot of hard physical work, it is a specific job that needs to be done, and people need help with it, so I am definitely valued.

    Check out your local charities to see where a good fit would be. It could be the perfect solution for you.

    And of course, you are always welcome here, to post comments and add to our conversation.

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  7. Hey Everybody,

    It’s me, Jeanie, again with an update on my memory problems. I struggled all spring and summer with being forgetful and I had a lot to keep track of so I really missed out on so much I was trying to complete IE.. new business license application, planting vegetables, getting paperwork filed, seeing people, getting a coat made for winter etc. It seems like I am always running behind and trying to remember what I was suppose to be doing. Then the old favorite menopause stopped in for a short visit with a promise to be back later for a longer stay. I started to doubt I was ever sane but I held onto hope that my feelings were just a temporary phase I was going through. Sure enough I got out my trusty REAL progesterone waited for the required 14th day applied where the sun don’t shine and what a relief, normal thoughts again, food had flavor again, life held promise again.

    THEN my mother reminded me I should be taking ginkgo biloba for my memory and so I tried it, for two weeks now. At first I just felt normal or more calm sort of but now I remember everything I have done all day long, remembering yesterday is getting better but not as good as the same day memory, I still have to think hard to sort out over 18 hours ago. Anyway its been good so far, hopefully I wont become allergic like have in the past to my other medicinal herbs.

    A favorite website of mine for general health and brain problems is Sponauglewellnessinstitute.com if I had $10,000 I would go to Dr Sponaugle but I don’t so I just read his info and listen to the testimonials of his other clients. The people who have been helped are so encouraging to me as I keep trying to find more info on all things brains and how they function. There is so much research going on all over the world in hospitals and universities, The problem with the research is understanding the terms used in the papers but I keep reading even when I see that .nih. OK I’ll stop free associating and rambling on now.

    P.S. My latest quest is to find supplements specifically to help remove toxins from the brain, I know they are out there because doctors like Sponaugle use them in IVs to detox his patient’s brain. However everybody using this stuff is mum because I haven’t found the neurological grail yet. But of course I am still looking.

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  8. Hi Jeannie –

    Thanks for telling us about your latest adventures. It sounds like you’ve had some challenges over the past six months — glad to hear you’re finding solutions for them and getting inspiration from other folks’ success stories.

    The best “pill” for detoxing our cells, that I’ve heard about, is exercise. You should definitely Google exercise and autophagy — https://search.disconnect.me/search?q=exercise%2Bautophagy&se=google — autophagy is when the cells digest unwanted materials and renew. There’s a lot of emerging information about that, and a great NY Times blog post on “Exercise as housecleaning for the body” http://well.blogs.nytimes.com/2012/02/01/exercise-as-housecleaning-for-the-body/?_r=0

    Also, fasting will stimulate autophagy, and you don’t have to do long-term fasts — intermittent ones, say a day at a time, can help. I think it varies from person to person. Check it out and experiment with it. Going without food can set some people off, but I find that skipping a few meals, every few months, makes me feel better. Especially when I have a good meal at the end of my fast. Probably doing without makes me appreciate what I have all the more.

    It’s interesting about your experiences with the gingko – I have heard about that, and I was trying to take it for a while, but I kept forgetting 😉 – literally. I guess I need to leave myself a note.

    Glad to hear the progesterone is working for you, too.

    My own memory strategies involve what I call “advance memory creation” — where I imagine and experience myself remembering things I need to not forget later. I visualize and create the whole experience of something like remembering to turn off my modem before I leave for work — I see and feel myself taking my keys off the keyholder by the door, turning the latch to unlock the door, and then remembering to check if the modem is turned off. I have a regular routine I follow each morning for getting to work, so I have a predictable scenario I can envision and experience in advance. I find this works really well for me — going through the motions in my mind and also feeling the sensations of doing certain things, which then prompt me to remember things.

    I guess I’m using my body as well as my mind to help my memory. I find it’s working really well.

    But I should still check out the gingko, too. I’ll have to make myself a note.

    Thanks for writing and best of luck on your continued journey.

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