Saturday, December 10, 2016

12/10/16-My Quartzsite FAVS and Socialize vs. Seizures

Enjoying the best Chorizo Breakfast Burrito at
Taquerias Los Amigos in Quartzsite AZ

On my YT series, My Life as a Vandweller, I posted the following video yesterday.


That was a fun way to end a challenging week after having had a seizure the day before Thanksgiving.

We are now back in Ehrenberg, AZ where many are beginning to gather before going to the annual RTR, Rubber Tramp Rendezvous, hosted by Bob Wells. The RTR will be in Quartzsite, January 10-22. However, for directions to the area where many of us are camped now, and to read more about the RTR (including rules, FAQs and to get the current RTR schedule), go to Bob’s latest blog post on his CRVL blog (here).

Such fun! I’ll see you down the road!

Just a reminder and for any new readers:
The rest of my blog post deals with my TBI and HS. Not all will be interested in that so I separate the topics purposefully in case you want to stop reading here. It’s your choice and it’s all good. Thanks for being here!

TBI HS SYMPTOMS

I am really looking forward to seeing familiar faces and making new friends this year in Ehrenberg and at the RTR in Q. And, especially with my recent health scare, I have to be cautious. Anyone who knows me knows that I love people, but more and more I have to limit contact. That makes me sad. And it is what it is and I have to honor my needs. So I bought some magnetic white board sheets and put a sign on my van yesterday. I think most people will understand. I hope so. I mean no disrespect nor do I want to alienate myself from this wonderful community. It’s not that I don’t want to socialize; it’s just that seizures suck.

an actual sign on the side of my van; ugh

For example, I woke up this morning and did not know where I was. That’s actually not an unusual occurrence for nomads. We move around enough that often locations, stores, towns and days tend to roll together and we lose track. For me, it’s a little different though. I woke up and realized I was “lost.” At first I thought I might be in OR. Then I remembered that the weather was getting bad there so I looked out the window. Nope, not OR, desert. Pahrump? Are we in Pahrump? There are wild horses in Pahrump. I looked out the window again. Nope, not Pahrump, no horses. I decided to rest. I closed my eyes, concentrated on my breathing and did my best to relax and meditate. In a little while I remembered Quartzsite! Nope, not Quartzsite. Then finally, ahhh, Ehrenberg! I’m in Ehrenberg. That is not a normal nomad process. That’s due to my TBI. So I get to do things like put up stupid “Please Do Not Disturb” signs.

THE REST OF THE STORY

How do other “shut-ins” do it? How do we maintain connections and yet maintain our health? I’d really like to hear your ideas my wonderful readers. Any and all ideas. Technology makes it easier, but I don’t want to become a hermit or a recluse. I will if I have to, but I don’t want to.

The schedule at the RTR is rigorous. There is a lot of activity over a 10-day period. Right now, I’m thinking that I may be able to attend 1or 2 classes and maybe 1 social event. That’s it. Out of about 50 events scheduled, that’s not very much. But it will be my all.

On personality tests of any kind, and believe me, when you have a TBI, they put you through the ringer on tests, I score 50/50. Always. I’m split right down the middle in characteristic traits. So I’ve always been social yet an introvert. I’ve always been communicative yet withdrawn. Two sides of the coin always at play with me, always. This is no different. I love people yet have always enjoyed time alone. I want to socialize and am outgoing yet I’m an introvert and require solitude to recharge. There are many like me. That’s nothing new, but now I have a brain injury that complicates the conundrum. Too much external stimulation has devastating effects for me.

For example, I may not even be able to eat at Silly Al’s anymore (the pizzeria mentioned in my video).  Even with earplugs, it was too loud for me last time I was there. Plates start spinning in my head (virtual ones, not real ones), then my vision blurs or I get vertigo (or both), probable nose bleeds or worse yet, a seizure. In TBI speak it's called sensory over stimulation or flooding, and (here) is a semi-technical explanation from one of my go-to resource sites. Bottom line, it’s not worth the risk.

Also, a friend that I travel with recently told me they are convinced I have bionic hearing. I had not been able to come up with a description of what I experience, but that is as close as any. I can hear a straight pin drop from a mile away. Okay, well, maybe not that acute but I can hear every little thing around me, and then some. I can eavesdrop on quiet conversations far away from me, without even trying to, and believe me I don’t want to. I can hear nearby lizards walking across the desert ground. Nope, not kidding on that one. I really can.

I haven’t made it back to TX yet to talk with my medical team about this, but I’ve been doing some research. It is evidently quite common for those with a brain injury to suffer hearing loss yet there is also a small percentage that can have amplified hearing and even eyesight. It appears I might have hyperacusis (noise sensitivity). It’s a self diagnosis at this point, but it sure fits.

I have become like the character, Radar, on the historical M.A.S.H. series. I will be looking at the sky for a plane or a helicopter long before anyone else realizes there is one anywhere near. If people are camped near me, I usually end up wearing earplugs 24/7. Otherwise I hear every little step they make and I’m aware of everything they do. It is fascinating, and it can be painful. It definitely adds to my need for quiet and solitude.

So there you have it: The rest of the story. Here I am getting ready for the largest annual gathering my nomad community has, still trying to wrap my head around my TBI symptoms as they progress, and still trying to find that balance of self care and not disappearing completely.

Ideas? Suggestions? Thoughts? Thanks! KOKO! XOXO!

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4 comments:

  1. Hi Debra,

    I completely understand, you have to do what is best for you. I've heard of that noise sensitivity somewhere on another blog but can't find it now. I can't take loud noises either like in a restaurant or while stuck in traffic the noise on the freeway sounds like a monster. I'm an introvert and just need time to recharge. You could work for the government with your bionic ear!

    Hope to meet you in person but if it doesn't work out that way no worries :)

    Big hug to you,

    Tina

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    1. Thank you, Tina. I am looking forward to meeting you! We will work it out. You're coming to the RTR, right? I will be there and will at least make the women's meetings. Your comment about the government cracked me up. LOL. Big hugZ to you too, db&n

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  2. Thanks for the clarity Debra. I can also hear quite well. Not as acutely as you but enough for me to happily declare that I can 'hear a squirrel fart behind a pine cone'. Now there's a visual *lol* Tj

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    Replies
    1. Oh, Tj, this gave me a great laugh. Thank you! I thought I had replied to this but in checking a few things today I see that I did not. So now I've had two laughs! Yes, quite the visual. LOL. Thank you!

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