This evening my right ear is feeling full. Not sure why. Perhaps I had to much salt at dinner? It just means I’m laying around not doing much.
This week I spent two days “working” as an Extra for a tv show filmed in Portland. I put “work” in quotation marks as it’s not really work, it’s mostly sitting around and waiting for them to need you to walk across the street, etc. I did it once last summer and it was fun. If you can bring stuff to keep you occupied and you don’t mind it being a little unpredictable, it’s a very nice way to earn a bit of money. The only downside is that the hours can be really long. Both days I was on set for 13+ hours. And it can stretch even longer than that if there’s a crunch to finish an episode. On the plus side, you might get to watch the actors acting and you get a upscale restaurant-worthy lunch.
Today, I spent time finally adding up my concussion related medical costs for 2014. And then I cried. It’s surprisingly emotional going through old receipts. And it’s humbling.
Melissa is doing a give away! I found her most recent post to be just what I needed to hear after dealing with money and memories this afternoon.
This morning I listened to this podcast from the always amazing Underground Wellness, which opened up a whole new fascinating world for me. The podcast was an interview of the author of UPSIDE: The New Science of Post-Traumatic Growth. I had never heard of the concept of post traumatic growth, and it sounds like it’s been recently re-discovered.
So what is Post Traumatic Growth? Well, it is personal growth (not physical growth!) that occurs during traumatic situations. It came into awareness when the majority of the survivors of Vietnamese POW camps said that the experience had been good for them.
And yeah, wow, that hit a chord.
Having gone through my own little version of trauma (5 months bed bound with dizziness from having two concussions) this podcast felt so personal! I’ve had various other health related trials in the past, but nothing that I would have considered traumatic like those nightmarish 5 months.
And, yes, looking back, I definitely grew from the experience! And it was good for me. I changed it ways I never would have expected or sought.
The author mentioned something along the lines of, that instead of maturing from one level to another at an even pace, it was as if the people he interviewed had skipped levels, or moved through them more quickly than before. And yes, once again I could relate. It’s not like I feel so much more mature than the people around me, but I feel like I have a much deeper sense of suffering and understand life differently than most of my peers. I often feel like I can recognize that same sense in my friends who have gone through trauma themselves.
Hopefully, I’ll be getting the book at some point! I can’t wait to read more about the ways people noticed they benefited from the traumatic experiences. I suppose I will start making my own list. 😉
We got back from Phoenix late Monday night. I spent the last afternoon wandering around Siegfried and Roy’s dolphin and tiger garden. It’s my favorite memory from Las Vegas. It was so uncrowded, the food was reasonably priced and you could get so close to the lions and dolphins! Plus the trainers work with the dolphins every 15 minutes or so, so there was always something interesting to see. And for the last 15 minutes we were there, there were trainers in with the lions! Eeks. That was something I had never seen.
The rest of the week has been really quiet. Mostly just doctors appointments. I saw the functional neurologist on Tuesday so that felt good.
My brain’s felt pretty dead/empty/low grade fuzzy since going to Sacral Occipital on Wednesday. The doctor spent a long time fixing everything that got knocked out of place when I hit heads with a brother on the trip. I think it just needs time to recover.
Tonight, I’m hopefully going to the fair and rodeo with a friend! I haven’t been to the rodeo since my second concussion, but I’m looking forward to it. Hopefully it won’t get smoked out. We’re having crazy wildfires due to having such a dry year.
As you may remember from the previous weekend’s Link and Updates (I completely forgot to do last weekends, oops!), I was on vacation with some of my family. We had a grand time. We took 10 days to travel through Phoenix, Sedona, Flagstaff, the Grand Canyon, the Hoover Dam and ended up in Las Vegas. We just got back on Monday, so I’m still in recovery mode.
So far, getting ready for trips is still proving to be really stressful. This was the second time I’ve flown since getting MdDS and Hydrops and that seems to be consistently more stressful than driving. Both times that I’ve flown I’ve dealt with dizziness/MdDS/Hydrops the day before, which doesn’t help at all. With the pressure of getting ready, my body seems to slip easily into the sympathetic nervous system, so I feel light headed and my breathing stays shallow as much as I fight it.
But it does seem to be slowly getting less extreme, so hopefully that trend will continue.
The rest of the trip, besides conking heads with a brother (ouch!), was very encouraging. I was able to do more than I thought!
It also probably helped tremendously that I was able to continue with my MdDS exercises for most of the trip.
In Phoenix my huge accomplishment was swimming some laps for the first time in almost two years! It felt surprisingly good.
In Sedona, I hiked/climbed up Bell Rock. It was a little scary getting up there, but my brothers were able to help me the few times I needed it and I made it mostly to the top of the hike. But eventually, I could tell I was getting light headed and that I was done. So I laid down and enjoyed the view. The way down was actually much better than I expected because on the smooth rocks I could simply slide down. Thank God I was wearing sturdy jean shorts!
At the Grand Canyon, I did tons of walking. We did a 3 mile rim hike and the my brothers and I hiked a mile and a half in and out of the canyon. All this at an elevation of 7,000 feet!
Probably the hardest moment of the trip was when we descended from Flagstaff to the Hoover Dam. We went from 7,000 feet to 1,000 feet in just a few hours and my ears did not like it! I spent the first hour of touring Hoover Dam feeling dizzy, but eventually they adjusted.
Another interesting time was our first night in Las Vegas was a Saturday night and we ventured out to see the Bellagio fountains. It was more than a little crazy. I had never been in such a large group of people. It was disorientating to say the least, but I made it through and didn’t fall down!
And last but not least, the greatest accomplishment/answer to prayer was that I was able to ride in the middle seats of our rental minivan! For the last two years, I’ve had to ride in the front seats or I would get dizzy. I’ve noticed it getting better, but I was really praying that it wouldn’t be a problem this trip. And it wasn’t. I still did a lot of the driving, but it was a relief to know that if I needed to I could relax in the back. It did get less and less comfortable as the week went on, but hey, it was a huge improvement!
Well, that’s all the highlights I can think of for the moment. Hopefully I’ll get some pictures edited and inserted in later this evening!
That may sound like no big deal to most people, but if you have Mal de Debarquement Syndrome, or know someone who does, it’s a big deal.
Travel only when you’re ready
When you have Mal de Debarquement, whose very meaning is “bad disembarkment from a ship”, you think about it a lot before you agree to go on a ship. Three months ago, I don’t know if I would have been ready. Six months ago, definitely not. But I finally felt that I could manage it.
And it was a good thing too, because one of my childhood friends was getting married on an island in Puget Sound.
We left on Friday, drove 3 hours to get there. Sat in line for an hour, and then finally boarded the ferry for the 20 minute ride.
Even though sitting in a line for an hour waiting for the ferry felt frustrating at the time, looking back now, I think it was really helpful. It gave me time to walk around and let my brain “reset”.
Find a position you feel that works. And then don’t move unless you want.
The ferry ride turned out to be pretty good. I was nervous, but fairly confident that it would be okay. Once we had parked, I got out and went to the deck and I found the perfect spot to stand. I could hold firmly onto the railing and face forward. I also positioned myself by a raft crane that partially blocked my vision from 10-1 o’clock, that helped block out the horizon so I had something that was stable in my foresight and broke up the moving stimulus of the water. And then I didn’t move for the rest of the 20 minute ride.
The rest of the weekend I felt okay. It was a little set back, but nothing I didn’t expect. And it didn’t slow me down at all. I could just tell that standing was a little more tiring than usual.
Oh, and the wedding? It was fabulous. The wedding and reception were on a grassy lawn by a bay and the bride and groom left by flying off into the sunset in a seaplane!
Bring a ski cap or something to block the wind in your ears.
On the ferry ride back, I remembered to grab my ski cap that I had thrown into my bag last minute, and that made a huge difference. I pulled it down over my ears which blocked out the stimulus from the wind. I felt a lot more stable without having my ears constantly trying to adjust for the pressure of the wind and I ended up walking around on the deck quite a bit. Plus, there was the knowledge that I had a functional neurology appointment soon, so it was okay if I pushed myself.
Be prepared for a small setback
Unfortunately, taking the ferry did set me back a little. My next appointment with the functional neurologist wasn’t until Wednesday, so both Monday and Tuesday I felt “off”. I was really busy running errands and being out of the house those couple of days, which turned out to be a helpful distraction. I didn’t notice it too much unless I was sitting or standing and even then I only noticed some slight swaying happening. I think Wednesday morning it was the worst, but thankfully my appointment was that afternoon, so after that I felt pretty much back to normal.
I can now cross off “taking the ferry” on my list of things I thought I’d never do again. So grateful for progress.
I’m on vacation this week! Some of my family and I are in Arizona for a little while. Today we toured Taliesin West and the Heard Museum. I love architecture so touring Taliesin West has been on my bucket list for years. That is if, I had a bucket list. 😉 Which I don’t. But, it was amazing and I’m so thankful we had a chance to go!
Most of last week I was dealing with some slight MdDS, and traveling on Friday didn’t help, but now that we’re here it doesn’t seem to be too bad.
We’re trying to do AirBnB most nights and so far it’s been a success. Partly, I think because we don’t mind booking things last minute, so we’ve gotten discounted prices both times.
Sorry! I’m feeling dizzy this morning so as I’m sitting here on the computer feeling like my head is moving back and forth, words aren’t coming as they normally do.
I did a LOT last weekend, including taking a 20 minute ferry ride to and from an island (more on that next week, I guess!). So I think I’m paying for it today. But thankfully, I have my functional neurology appointment this afternoon, so I should be good after that.
My grandparents were visiting this week. On Monday I took them to the Portland Rose garden for a picnic lunch. The unusually warm weather that Portland has been having this summer has made for a spectacular display of roses.
My grandparents are avid bridge fans and have taught their grandchildren how to play. It was a good challenge for me to re-learn how to strategize. I know the last time I played I needed help figuring out my strategy.
We also spent time listening to my grandparents talking about their World War II experience. We got most of it on video so that was a definite highlight of the trip.
On Wednesday we took them and some friends to the river for the afternoon. My grandmother (at age 89) even got in and floated around on some pool noodles. Love their spirit of adventure!