Monday, January 30, 2017

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...

1 comment:

AnneMarie said...

Thank you so much for sharing your experience with all of us! This is so vulnerable. I really appreciate your opening up your world so that we can all understand you (and what you go through routinely) better-I never imagined that even something as "simple" as driving to another location would be so difficult for you.