Chronic Diva

With Chronic Pain/Illness

We have friends who have a ranch about 5 hours from here, give or take with traffic. The drive, from my point of view, isn’t too bad on a mild pain day and we typically stop mid-way for snacks and just to get out for 2o minutes. The problem, however, is that even someone who writes about chronic pain/illness all the time is bound to make a mistake when traveling. Here are a few of mine from this past trip (I’m sure there are more).

• Cover your bases: In effort to travel light I didn’t pack a sweater or jacket. Though I do better when the temperature starts dropping, I also seem to feel temperature changes more acutely, so when it drops below 70֯, I typically need a sweater. We left home at 90֯ and then arrived at the ranch bringing the rain with us and a drop-in temperature to about 60֯. I was freezing my butt off and miserable so that I couldn’t enjoy myself outside as much as I wanted to without shivering.
• Don’t be a slave to fashion: I’ve been lamenting my jogger and legging wardrobe and wanting to wear my jeans again. I’ve never been stylish, but constantly in leggings and joggers has begun to wear me down a little and I do love jeans. I found two pairs in my closet that seemed to fit comfortably, but I only wore them for about 30 seconds. That didn’t stop me from bringing a pair along and instantly regretting it after the first 30 minutes. I was so very uncomfortable that I wanted to cry and realized how stupid I’d been to give into a sense of fashion when pain is involved. I have to take care of me and part of that is dressing in clothes that don’t make me want to cry.
• IBS Doesn’t Go On Vacation Even When You Do: I had a good week in the IBS department so I was pretty optimistic for this little weekend excursion. But IBS doesn’t take a holiday and that second day, right after lunch, all hell broke loose. There is nothing more embarrassing than having a diarrhea flare up in someone else’s house. I did have medicine, which helped, but those damn jeans- ugh, I was so uncomfortable!
• The Perils Of Eating On The Road: I’ve talked about before how stressful eating is when you are dealing with something chronic like IBS. My situation is like many others where it’s basically Russian roulette. I toggle between trying to be careful of every bite and not giving a damn because it doesn’t seem like there is any rhyme or reason to it. When you are traveling and maybe needing to eat on the road or perhaps like me, at a friend’s home whose cooking you are unfamiliar with, it can lead to issues. This experience has caused me to consider perhaps bringing some things in a cooler that I know don’t bother me so that I up the odds in my favor and maybe don’t have a flare.
• Feeling High-Maintenance: I said no to bringing my heated blanket or an extra pillow or two. Seriously, WTF was I thinking? I’ll tell you what I was thinking: I’m so complicated. I’m so high-maintenance. I can’t just travel a weekend without bringing half my house. Slap-self-silly. I know it’s only a weekend, but it’s not something I can go without. I know I’ll hear that horrible term, high-maintenance, in my head, but if I’m going to travel I need to practice what I preach, right? I need to bring those self-care items with me or be left unnecessarily miserable the entire time.

I think the biggest issue is not wanting to inconvenience everyone. When I look at myself and these chronic issues I deal with life has very much become about things I can do to make my existence more comfortable. However, when I step outside that little box and I look at all the things I do from perhaps the perspective of someone who has no idea I deal with chronic issues, it appears that I am a spoiled brat, or high maintenance. Almost worse than that is the perception that I’m so sickly that I need all these things which can lead to being excluded from activities, or not thought about being included because surely, someone who needs all these extra things to be comfortable couldn’t do that. My husband is very active and has friends who are very active and I hate being seen as his wife whom he needs to take care of. There are a lot of things I can still do, I just have to think about how to do them. And sure, there are things I can’t do, but I want to make the decision myself. Thinking about how you might be inconveniencing other people diminishes your importance and also your enjoyment of the trip. The whole purpose of getting away, for a short period of time or long one, is being able to enjoy it. So bring the extra sweaters, bring the heated blanket, bring the cooler of snacks and drinks so that you can enjoy the time away.

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