Take a Ride with Fibromyalgia (and Aspergers)

I have fibromyalgia and Aspergers.  Both are conditions that often come with extra-sensory issues, and I definitely have them in magnitude, particularly when I'm having a bad health day.

And this has been a bad health year.

Over the past 12 months, Nathan and I have come to realize that I cannot go anywhere more than about 20 miles away--there is just too much sensory overload, and by the time I get to where we are going, I'm too tired to really cope with all the issues at the actual event. This has been really hard, but thankfully most people in my life have been extremely accommodating of this issue. (So many friends and family have arranged to come to our house so that they could actually see me. It means the world.)

That said, even for those who love me, I know that it is difficult to understand how a simple car ride can be so overwhelming. So I decided to write up a blog post that will give you a look at the world through my eyes.

It starts before I even walk out of my house.

At home, I often wear the equivalence of pajamas all day, to save my body every possible bit of sensory overload. Going out means putting on outside-world acceptable clothing, which puts extra stresses and strains on my body. Some days it is more bearable than others, but if I am having a day where I am extra achy, just getting properly dressed can bring on a headache or stomachache.

(I know, right?)

Then I walk out to the car and buckle in to a pretty restricted position. At home, I am always switching it up, as one key to keeping fibro pain at bay has been not overstressing any muscles. I even try not to sit in my extremely comfortable chair for too long. I cannot sit on our regular dinning room table chairs - if we eat at the table or play a game, I have to sit on a special comfy office chair. Obviously our 20 year old car is not nearly as comfortable, and the seatbelt heavily restricts the positions I can take. This is the single biggest reason why I cannot ride more than 30 minutes at a time.

But there are other issues too. There's the vibration of the car. The noise of passing traffic. The smells that make it through the air system when we pass something really stinky. The changing lights. And above all, the constant barrage of changing visual images.

Everyone experiences these things all the time, of course (unless they are sensory deprived in an area), but Aspergers+Fibromyalgia heightens each sense. Most of us know that bright lights and loud noises can trigger headaches in people, but my tolerance is much, much lower than average, and it applies to every conceivable sensory issue.

Furthermore, we believe my fibro symptoms are in part triggered by skeletal issues, rising from the '3 accidents in 3 years' I experienced when I was 16-19. All three accidents occurred in bad weather and two of them resulted in months of health problems (one kept me in bed for about six weeks). This means that every single time some driver does something crazy, or we have to brake suddenly, or our car slips or slides for a moment, my body absolutely freaks out. Those of you who have been in traumatic accidents can probably relate to this feeling--and it doesn't help an already overloaded body at all! (We live in Minnesota. Bad weather car stuff goes on half the year.)

Finally, I'm deaf. I cannot listen to the radio in the car. I get nauseous trying to read. And while I can talk to the driver, it's extra taxing to lipread in the car, from the side, expecially from the right. So either I'm being strained and social, or bored and...bored.

So my body has to cope with all of these things before we ever get to our destination. Then I have to deal with the stresses there, (lipreading, social situations, food allergies, more sensory everything, especially when people have scented stuff in their house, etc), and once that is done, I have to go back through all of the driving stuff again. So, as you can imagine, keeping driving distance as short as possible is really important!

The weirdest thing is that healthy Elizabeth finds riding in the car peaceful. My parents used to find that one of the best ways to get me to go to sleep. Sometimes, when I have a migraine, I can weirdly feel better riding in the car than I do laying on my bed. Probably because I'm zoned out and on my way to help (the ER). But my body just can't tolerate everything about riding in the car enough for it to work well these days. If I want to enjoy the point of the outing (social times with loved ones, shopping) we have to keep driving to a minimum.

Once again, I am so thankful to everyone who has been accommodating of this. I hope this blog post was informative and helps clarify some of the issues! I really hope that as we continue to work on my health this will eventually not be such a big issue. I've already had to miss one wedding due to distance, and I see more in the future that will also be lost memories if matters don't improve. But I try to remain hopeful and optimistic. We keep making baby steps...

I Don't Want to Write this Tribute

I really don't want to have to write this tribute. I don't want Carrie Fisher to be dead. I don't want to face the realization that we will never see her Princess Leia on screen again.*

 *CGI doesn't count. And yes, at the time of writing this post, Episode 8 is not yet released so we have that to look forward to, but anything beyond that will not be Carrie's Leia.

I grew up loving princesses. Belle, Ariel, Pocahontas, Jasmine...these spunky heroines shaped my life in many ways. When I got older, I became captivated by real princesses in my obsession with English history.

But Leia stands in a place of her own. She was a spunky space princess who had intelligent, witty dialogue, was strong enough to do anything the boys did, but was also kind. empathetic, and diplomatic, winning the Ewoks to the Rebel cause by her own awesomeness (and the faithfulness of her golden protocol droid).

As a child, I always wanted more Leia. Finding a Leia action figure was my quest for the holy grail, and when I got her (and a Han to go with her!) she became one of my most treasured toys. I dressed as Leia for Halloween, played her in the first short film we ever made, and (in one of my favorite memories with my cousins EVER) got to BE Leia on the day when we re-enacted all three of the original Star Wars films. (I grew up as an only girl for a long time, which was really lonely except when we played Star Wars and I got to be Leia with no contest. Hurrah!)

I read a few of the novels, but none of them ever satisfied my desire for more Leia. My own adventures with my action figures were FAR more awesome. I'm really glad that I didn't discover "The Courtship of Princess Leia" until I was an adult and able to handle the awfulness of it, because it would have ruined a significant piece of my childhood if I'd consumed it at a younger age.

To this day, I remain passionate about only wanting Star Wars memorabilia with Leia on it, as a stand against my childhood when NOTHING had Leia on it. I refused to play the Star Wars Destiny game put out by my husband's company (Fantasy Flight Games) until he got me the Leia cards. While I adore many other characters in the films (Han Solo, Young Obi Wan, Padme's Dresses...), none of them comes close to the awesomeness that is LEIA.

When the new films were announced a few years ago, I tried to hold back my excitement. I knew Leia could not be the same pivotal role in this new trilogy - they would need to initiate a new cast with more longevity. But still - MORE LEIA!

Episode 7 brought some frustrations for longtime Leia fans - not enough screentime, and a sad ending to an epic romance. However, with Han getting a significant amount of screentime in this film, and Luke cued up to play a major role in VIII, I thought it highly likely that they were planning to give each of the original trilogy one 'focus' film, and Leia's was going to be IX.

The tragedy of Leia is that - unless she was due to die in VIII anyhow (as some have predicted) - we will never see her story played out on screen as planned. However it ends now, it will be different - likely a short tribute 'death', but also possibly a recast or (very remote but not impossible) a CGI recreation. Whatever it is, it will be a poignant reminder that Princess Leia was a remarkable character, played by a special and unique woman.

Which brings us to the other part of my tribute. As a child, it was Leia whom I knew, not Carrie. Even today, the loss of 'Leia' hits me harder, because it was that which played such a significant role in my own life. But Leia would not exist without Carrie, a real woman who is being deeply grieved by the family and friends who did know her.

However, while I never got to meet her in person or watch her one-woman show, I did enjoy her gift of writing. Someone told me to read "Wishful Drinking" and "Shockaholic" saying "no one else is writing about mental illness like this." And it's pretty true. Carrie is refreshingly honest, not afraid to laugh at herself, which is tremendously healing and encouraging (I struggle with depression alongside my other chronic illnesses). Ironically, I own "Postcards from the Edge" but have not yet read it. I've not yet been able to bring myself to buy "The Princess Diarist." I'm not ready to face the reality of it being Carrie's last book.

And I kept putting off this tribute, even though I knew that the longer I waited, the less relevant it would be and the more 'bandwagon' it would seem. I didn't want to face that she was gone.

But, regardless of these feelings, I owed it to her to write this. Leia was my princess, and I will be forever grateful to Carrie for bringing her to life so wonderfully and ironically.