Tuesday, November 15, 2011

Traveling with Fibromyalgia

That I have deleted some six starting sentences for this post indicates that perhaps I am not yet ready to write about it yet.

To begin with, I am not as well versed on the effects of fibromyalgia as I should be. This ignorance was initially willful and deliberate; I was in denial about the whole thing and just didn't want to know, which is not a novel way with initially coping with the idea of a chronic condition.

Then tempus fugit and in the last couple of months in Melbourne I was busy failing to get my affairs in order for my departure and trying to see as many friends as possible. After that, well, travel is travel. I've been busy.

I can say with utter certainty that not spending 8+ hours a day sitting at the computer has alleviated my daily pain levels substantially.

I can say with certainty that lugging my rucksack and satchel around isn't really good for me, but so far I haven't done this for any great length of time. This will change as soon as I leave the US, but given most of my stays are several nights at a time, there is plenty of time to let my muscles rest.

Reasonable suspicion that sleeping on so many air mattresses, couches and sofa beds with all sorts of different pillows isn't doing me any good, but the effects haven't resulted in any impediment yet.

I don't remember what it was to live without perpetual pain and discomfort, and I know that sounds dramatic, but I don't want it to be taken that way. I just don't. Things seem to be holding steady, and that doesn't mean I'm feeling good, it simply means I am not stuck in the grinding cycle of work followed by aggravated muscles and pain, building up over the week until the weekend when I got enough time out - only to repeat it again. Things still hurt. I'm sitting here today, with the express intention of not going out but writing this and putting things in my diary, and I know I will pay for this tomorrow.

The coming price doesn't upset me as much as it used to, because now I have the time to recover.

Fatigue, however, has begun to worry me greatly. Fibromyalgia and Chronic Fatigue Syndrome are very closely tied, and do tend to come hand in hand.

I am flattened. Excitement and wide-eyed curiosity got me through San Diego and New York, although toward the end of my time in the Big Apple I desperately wanted to stop the ride and get off. North Carolina has being a wonderful balm of quiet and calm, and to the friends who have opened their homes to me I have no words. Thank you. For comfortable silence and big couches and your wonderful delightful pets. Thank you for letting me be boring and sleep. Thank you.

And yet, it doesn't feel like enough. As though there simply isn't enough rest in all the rest fields of the whole world for me to feel fully rested. My need to sit, not to catch my breath but simply to use less energy, happens far more frequently than it should.

I want to blame this on being unfit and failing to eat and drink properly (the latter of which always happens when traveling). Except I'm sitting here now, having done nothing but watch the #OWS hashtag and drink tea, and I still feel flatter than a pancake.

I don't know if I'm being reasonable or alarmist in even considering CFS, especially considering my own fibromyalgia is...

...I was going to say mild, but it isn't, is it?

I'm just good at ignoring it.

At any rate, my advice to people traveling with either of these conditions is to allow yourself plenty of opportunities for rest, whether that means allotting yourself time to sit on the train between museums or blocking out entire days to do nothing. Unfortunately, New York simply has TOO MUCH IN IT which makes not going out and doing ALL THE THINGS very hard, but, you know, try.

Common sense is, sometimes, not that common. Especially when you have shit to prove.


  1. Firstly, *hugs* Look after yourself, lioness.

    Reminds me of something I came across recently, via Clem Bastow's blog...



    Ta, thunderKat. Well familiar with the Spoon Theory, and thankfully I am not in such a condition that I have to really take spoons into consideration on a daily or hourly basis. Have to keep an eye on myself when tired though. Meh.