Two steps forward, one step back… then two more steps forward

It’s still progress

There is progress on the neuro front — slow but steady. I may have found someone I can work with to help me sort out all the issues I’ve been having, but have not been able to articulate that well:

  • constant headaches
  • constant tinnitus
  • noise sensitivity
  • light sensitivity
  • balance issues
  • nausea
  • fatigue
  • muscle weakness
  • twitching in my right hand and thumb
  • tingling and numbness on the left side of my face

All the “usual suspects” of my daily life are getting to be a real pain in my ass, and now that I’m not completely wiped out each and every day by my commute, I have gotten the strength back to actually notice how screwed up things generally are for me, physically speaking.

Don’t get me wrong. My life is good. I love it. I have a good job with a great company, my debts are gone, my house is in good shape, I’m able to read and write more now, than ever before, and it’s great.

The thing is, all these symptoms — some of which have been with me for as long as I can remember — are now much more noticeable, and I would really like to do something about them.

The main thing is, I need to see if they are part of something more serious than just the everyday post-concussive wear and tear. I can definitely live my life with them in the background. I’ve been doing that for as long as I can remember. They don’t make me utterly miserable, when I manage them.

But wouldn’t it be interesting to find out what life is like without them?

That’s the next chapter of this journey, anyway. Still in development.

I haven’t forgotten about my S.O.S. – Sense-Of-Self – work, though. I’m working on a couple of other projects right now that are taking up a lot of my time and attention. I hope to get back to the SOS writing this weekend — and in fact, it would make sense, since my physiological issues and all the pieces that go with that are intimately connected with my sense-of-self. That, and my ability to communicate.

I’m feeling a little discouraged about the communication piece, actually. When I’m writing, things become very clear for me. But when I’m talking, I can’t say nearly the things that I need to say. It’s like I have a vast and ever evolving “ecosystem” in my head, but just a very small window through which the thoughts and ideas and knowledge can actually pass. That’s when I’m talking. Everything gets jumbled up, and even though it sounds like I’m saying things that make sense to others, they do not reflect what I’m really trying to say.

And people who tell me I’m making sense just depress the crap out of me, because I can’t completely express what’s truly going on inside of me, and if they could hear only half of what I want to say, it would put things in a very, very different light.

When I’m writing, however, it’s a totally different thing. Maybe because I’ve spent so much of my life writing and working on that skill, while talking has been far less of a priority with me. That, and when I talk, all the words and thoughts and concepts get jumbled up in my head.

I guess that’s my next thing to tackle — how to communicate effectively by the ways that work best for me, instead of trying to rely on spoken communications. I’ve collected a lot of data about my headaches and other symptoms, which I can share with the neuro, when I see them. And I’m working with my neuropsych to figure out how best to present everything.

It’s all an ongoing process, of course. And I need to not be too rough on myself when I fall short of where I’d like to be.These things can take time. Just gotta stick with it.

Onward….

 

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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.

4 thoughts on “Two steps forward, one step back… then two more steps forward”

  1. These are the daily issues for my daughter too: constant headaches, noise sensitivity, light sensitivity, balance issues. She has been trying to work on exposure to more lighting and then putting her sunglasses on. Essentially pushing beyond her limits of comfort for a short time and then resting. The resting seems to be the key part of it, along with the willingness to deal with the discomfort intentionally on a consistent basis. It is the same with her balance therapy too. I believe it helps having cheerleaders throughout the efforts. Our role may be small as a cheerleader since we are not doing the actual work, but it is still a vital part of the process. We recently discovered http://www.superbetter.com and it is making a difference for us and for her. It is available as an app too, but the website is free and the website offers more for the allies to be able to offer support to our heroes. Check it out so that makes more sense 🙂

    And always keep in mind that progress, no matter how small, is progress. And sometimes the healing and the gains actually take place during the rough spots and seeming valleys along the journey.

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  2. Thanks very much for all that – and for the link to superbetter.com. Resilience is so important, and it’s great that there is a resource like this available. I may check it out more in-depth this weekend, when I have some time. Thanks again, and best of luck to your family.

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  3. “But wouldn’t it be interesting to find out what life is like without them?” Just home from the new dear DOCKTAH! I should have known, having moved into this state/town two years ago: with a new state, town, hospital-university research contract to keep the wannabe baby docktahs in the northern part of the state, and having a strange-egg like mine around, presents good opportunities to research that which is left undone. Grants written and new friendships prromulgated upon the needs of the community in the 21st century. Today’s suggestion is another inpatient stay to monitor remaining symptoms through removal of medicines that mask the most worrisome. No more left-sided full body tingling, now masked by meds, they will become once again the full left-sided burning sensation of parasthesia until the alternating waves of awareness and consciousness run their chemical twisting rampages through my brain for the DOCKTAH to track for a possible future attempt at damage mitigation and removal of remaining issues. This hellish trip, a necessary one, to find out what remains that is truly problematic, in order to define what steps can be taken to resolve them. As though the surgery twelve years ago were not enough, this same procedure was performed and included during the work-up to the surgery, now again thirteen years after, the numbering more freakish than fluke. I could live another fifty years, some of them good ones, if some of these remaining issues are resolved, and the medicines reduced. Insurance pays for the entire inpatient stay, I am already poor and what else will they take, more brain? At least, not this time. Be careful what you wish for…

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  4. Right… always be careful of that. Docktahs can be so enthusiastic about stuff that is not guaranteed to produce the effects they seek, but IS guaranteed to make you nuts in the process. Ironic, huh?

    One reason that I’ve been holding off on working with a neuro, is not trusting myself to sufficiently advocate for myself. But now I really need to see if things going on with me are serious or not, so I have to just move forward.

    No recorded medical history of my TBIs… makes things even more interesting. Gathering data. Talking it through with my neuropsych… We shall see.

    Good luck with your saga. Good luck.

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