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Thursday, June 20, 2013

Fibro Days: Surviving a Roadtrip with Fibromyalgia

I thought about doing a Roadtrip: Part 2 post, but the time, it has elapsed, and honestly, we have very few pictures from part 2. The above is one of those few, from an evening in Itasca, IL, on our fifth day.

What would cause a girl with fibromyalgia to go on a six day roadtrip? How, exactly, did she arrive there in one piece? Those seemed like better questions to answer, than to admit that the only pictures we have of a full day in Wisconsin are of deep fried cheese curds.

Let's break it down:

1. This wasn't a pleasure trip. We tried to make it as fun as possible, but it was not, by any means for fun. I don't know about doing road trips for fun even if you don't have a chronic illness. We moved from Eugene, OR to Cincinnati, OH, because my boyfriend got accepted to a PhD program at University of Cincinnati. We considered a number of different options, but settled eventually on driving the whole way, in my little Toyota Yaris, and shipping boxes of stuff as needed. Flying for four or five hours quite honestly would have left me just as sick and exhausted as a 40 hour drive. I don't understand it, but it seems to be a well-attested oddity of Fibro sufferers.

2. Admit what you're doing. Honestly, I don't understand people who don't think driving across country is scary. We met a lot of people who seemed to think we ought to just do the drive in two days. That's bad for you. It's bad for you if you have fibromyalgia, it's bad for you if you're human. Admit that what you're about to do is strenuous and hard. It doesn't make you any less of a person! It makes you stronger and wiser! I promise! Jose doesn't drive manual, and even if he did, I wouldn't let him drive because I get tremendously, exceptionally, terrifyingly motion sick. This has nothing to do with fibromyalgia, and has been a problem for as long as I can remember. So, knowing that I was going to do all the driving, we decided to break it into more manageable chunks. Six hours only, some days, and up to 8 on others.

3. Routines. I can't stress enough how important routines are to those who deal with chronic illnesses. Jose doesn't have a chronic illness, but getting our bodies as ready as possible for what we were about to put it through was immensely helpful. For weeks before we left, we started getting up at 7:30, then 7, then 6:30, then 6, just to be in the habit by the time we left. We also started doing Qi Gong together morning and afternoon. This turned out to be quite the lifesaver. Even though we booked hotels with pools and fitness rooms, we were fairly certain that we would be too tired to use them. We at least had 20 minutes of built in moderate exercise every day. And because I did them before we left, my body was used to them and didn't get too sore.

4. Hotels and Restaurants. People were shocked when we told them that we already had hotels booked and stopping points for food picked out. It seems insane to me to even think about driving across country without knowing when you're going to stop...chronic illness or not! Only once did we end up eating at a McDonalds, and even that we chose mainly as a snack and not a meal. I did my best to look up local places, place that would have fresh ingredients, and food with actual nutrients. North Dakota proved to be a huge challenge in this aspect. We also chose not to eat at our hotel's continental breakfast and went to Starbucks every morning for our "usuals" (we met working at a Starbucks, and have eaten many, many a bacon gouda sandwich together - this was more of a comfort and stability thing than a nutrition choice). The exception was North Dakota where we couldn't find a Starbucks and tried a local cafe. Let's just keep it short and say that that was a bad plan. But probably still better than risking it with pre-packaged sugar bombs (muffins!) and left-out sausage links of an indeterminate origin.

Deep fried cheese curd at Culver's in Tomah, Wisconsin. Totally worth it.
I made a few mistakes in reserving hotels -- I'm picky. I like things nice. Especially now that I've gotten sick. I don't want to worry about walking barefoot. North Dakota, again, was problematic...even the La Quinta in Dickinson cost more than the Hilton Garden Inn in Spokane, Washington. We didn't have much of a choice there. I made another poor choice in Minnesota, but it got better in Illinois. However, we didn't know how big Chicago is (yes, I know how stupid that sounds), and I'm a small town girl from a small town sort of state. Suburbs are the same as outskirts to me. I didn't realize that driving into a suburb would mean driving into the whole tollway stupid nonsense that is Chicago. If I'd known, we could've avoided Chicago altogether.

Okay, maybe the tollways were worth it just for this.

5. Weather. All in all, I would rather have dealt with the Chicago tollways than driven through the middle of the US and dealt with all the weather warnings. We paid attention to those warnings before we booked our route, and I am so glad we did.

6. Bottle it up.  Okay,so you're not supposed to bottle up your feelings, ignore your pain,etc... But sometimes it's the only way. I knew I was in for a long, exhausting trip. I have a magic ability to hold myself together for a time. I'm not terrified of medical procedures until after they're done. I won't throw up unless I have found an appropriate receptacle and my hair is pulled back. Every time I pull on this reserve of strength, I always have to pay for it later. It's like I have to be extra weak afterwards to let my body pull strength back into itself, and back into its reserve to use later. I had fun every day while driving, we sang and talked and pointed out things on the road. Every night I cried as I fell asleep. Not in a sad way, just in a cathartic, releasing sort of way.  This sort of strength reserve gets me through visits with friends and family, little day trips, or even just grocery shopping on bad days. It takes me days to get it back. I think everyone with FMS thinks of this ability in different ways. I prefer to imagine I am some sort of heroine in a fantasy novel.

7. Release it.  There are two reasons there was no follow-up post. 1) We don't have internet in our apartment yet. We're waiting for a new fancy-pants option to be finished installing in our building; 2)I kept up the strength thing for a few days after we arrived,in order to make trips to Ikea and Whole Foods. But then it stopped working for me. I had to finally admit that I needed to rest. It's been a rocky road, this past week. Using all of that false strength gave me a false sense of recovery. It was very, very hard to come back to feeling the pain in my body, to feeling the exhaustion after going up the two flights of stairs to our apartment. It felt (and still feels) a little like when I first started dealing with is all new again. Pain, I think, like a good recliner, is best when old, worn and molded to my body. New and fresh, I feel like it hurts worse.

The end result: An apartment filled with windows just like this one. It's much easier to recover in the sun, with the birds nearby, than it was in the dark and the grey in Eugene. 

I am super proud of myself for making a trip that would be rather arduous by normal-people standards, and for doing it well. We rarely fought, I only really broke down once, (thanks Chicago!) and we ended up here with all of our stuff, all of our us, and lots and lots of sunlight. 

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