Wednesday, March 6, 2019

TBI Temperature Quilt :: February 2019 Update

I've decided that unless if I have something special to add or share, I'm going to make updates on a monthly basis. As you can see, February got off to a pretty rough start. 

Truth be told, it ended on a rough note, too. 

For the first time in years, I had two crashes in one month. What is a crash, you ask? Every brain injury is different, so let me tell you what it means for me. A crash is a way of explaining what happens when my brain is overwhelmed with too much sensory input. It can happen slowly over a day without enough rest or quiet. Or it can happen suddenly when I find myself bombarded by too many or much stimulation. One of the limitations I face with my brain injury is that I have a hard time filtering sounds and noises. For example, in a restaurant, I hear a lot of sounds at the same level. I hear the sounds of conversations around me, clanging in the kitchen, music over the speaker, chairs shuffling across the floor, silverware clanging, etc. at roughly the same level. It's really hard for my brain to keep up and I will get cognitively exhausted. It's like when you run and swim for a long time. You start strong but tire as you go on. 

When my brain is flooded, it responds by shutting down the things that aren't essential. So things like vision and speech start to fade. Even on a good day, I have a hard time holding focus because my optic nerve and brain don't play well together. When I'm flooded, my vision is jarring, as my eyes are like a camera trying to focus out a moving car. I can't hold a clear gaze, so I'll often close my eyes to avoid the vertigo this process causes. My ability to communicate also shuts down. First, my words will be slow and quite possibly be incorrect as aphasia kicks it. For example, I might say cigar when I mean guitar. If I'm not removed from the stressful situation, my words will start to slur, like I'm drunk. After that, I can't speak at all. 

I'm very lucky to have people around me who recognize when I'm flooding. They know that it's essential that I get to someplace dark and quiet so I can sleep it off. But sometimes, it doesn't happen fast enough. 

The first time it happened this month, my son had a snow day. Some friends decided we would take the kids to a movie. I can't usually handle movies without problem because it's dark and there aren't any distractions other the movie. I do have issues when there are things like the strobe lights in The Incredibles 2. After the movie, we went to a restaurant. Again, on its own, I'm okay with going out to eat, but it does take a toll trying to tune out all the sounds. Being with a group was extra taxing because I was trying to listen to multiple conversations and was focused on making sure my son was on his best behavior on the other side of the table. At this point, I recognized that I was starting to feel symptomatic, or flooded. I should have called it a day. But my son had private swim lessons and I had already canceled the week before. I did ask my friend to drive us to the Y. Indoor pools are a nightmare on even the best days because of the way sound echos. I can't make out anything. Usually, I watch from the lobby, but my son asked me to watch from inside. I should have said no. By the time his lesson ended, I was in bad shape. My son is 10 and has seen me crash, so he knows what to do. I both love and hate that he has that knowledge. I was slumped over in the lobby trying to block everything out. He ran to my friend and said, "Mom needs to get home NOW." By the time, my friend and her two sons got to me, I was non-communicative. My friend had seen me crash, but her kids had not. It was a little scary for them, but definitely gave them a lesson they won't forget about brain injuries. My friend drove me home and got me in bed safely. After a couple of days, my brain was reset and I was fine. I kick myself because it could have been avoided if I would just done one of those things, and not all three. 

The second crash was a different story. It was one of those rare situations where I am immediately speechless. My husband planned a date for us to see comedian Tim Hawkins. We saw him a few years ago and had a great time. He does parody songs as part of his act, so he came out with his guitar and sang. Hilarious. Because my vision has worsened since the last time we saw him, Niels bought the pricey tickets so we could be closer to the stage. It was a great idea, until Tim came out with strobe lights and sound at more than 100 decibels.

I was immediately disoriented and crashing fast. Friends from the venue moved us to the sound room but it was too late. I was done. 

A few days later, Niels and I bought a movie on demand and watched in the quiet of our home. As much as I love the idea of going out with my husband. Movies at home are more my speed!

On the other end of the spectrum, I did have two great days in February. I clarified my definitely of great for the purpose of this quilt. In order for a day to be great, it means that
  • I was out of bed before 10:30
  • I sewed for at least 4 hours
  • I didn't take a nap
  • I cooked dinner for my family. 
In other words, I was able to spend a good amount of time quilting in addition to taking care of my family, rather than "instead of." I try to make a homecooked meal every night and we do make eating together a priority. But sometimes we have leftovers, sometimes Niels cooks or we make a pizza, and sometimes we eat out. 

In February I had my first two travel days. I got to see my long-time besties at our annual girls weekend.

I'm so I recovered from my first crash in time to enjoy the company of my friends. I picked out a purple and gray print to use on days when I travel and am away from my sewing machine.

We've started to make plans for our summer trip to the Netherlands to see Niels' family. It's guaranteed that in those three weeks, I will have at least a few days. I decided that I would add gray or purple circles to indicate in general terms how I feel that day. I won't sew, so they arrow will point down, but the purple or gray will convey if I'm able to participate with the family or need a down day.

I printed the circles on fabric backed with Steam a Seam. When I travel, I will bring my temperature squares, travel rectangles, and these circles. I will do the applique when I get home, but with the Steam a Seam, the circles will stay put. 

The biggest hiccup I had this month was the realization that I lost one of my fat quarters and was not going to have enough for the year.

Fortunately, I only had to go back and redo 11 blocks.

Looking at my half square triangles, February looked like this.

These blocks really show the effect of my TBI on my ability to work a full time, 8-5, as I did before my brain injury. In February, I would have been able to work 2 days (the top row + the empty row). Yikes.

Here are the numbers for the year.
TBI Tally, as of February 28:

Previous Posts:
A Husband's Perspective (Niels reflects on the 15th anniversary of my TBI)

Follow along with the progress of this quilt on Instagram at #TBITempQuilt. I'd love the encouragement to keep me working on the rough days! You can use the hashtag #tempquiltalong to see what other quilters are doing for their temperature quilts. To see what I'm currently working on, follow me at deJongDreamHouse.

Linked to:
Temp Quilt Along  @ Twiddle Tails (click here to see other temperature quilts)


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  1. TBIs are certainly individualized. I'm so sorry 2019 has started out so rough for you. I know you have tried everything you possibly can to make life as "normal" as possible for your family. Please take care of you! You have made so many positive steps to your new "normal", but your TBI temperature quilt certainly paints a vivid picture of just how difficult a TBI can make your life.

  2. Jen, I'm sorry to hear that February was as rough as it was. Praying that March is smoother sailing with fewer surprises!

  3. You are lucky to have such a wonderful support system, Jen! It just doesn't pay when we push ourselves too hard, does it? Here's hoping March is a better month !

  4. Boy, those crashes don't sound like fun at all. I'll admit, your description of them made my stomach flip, as some of those sensory inputs would put me on edge. I do hope things get better for you in the future.

  5. Thank you for sharing your experience with TMI publicly. I admire your resilience and self awareness when dealt such a complex problem. How you handle it through your art is truly an inspiration.

  6. I think you are amazing!! Thank you for sharing your story; it is inspiring! Your new quilt is lovely. Love the colours and patterns.

  7. Scary but good description of how it is to live with a brain injury. Hugs! Thanks for sharing with Wednesday Wait Loss.

  8. I'm sorry you're having a rough stretch, but it's really illuminating to hear your story. Here's hoping March is going better for you. Thanks for linking up to What I Made Monday.


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