Ankylose This! Living with Ankylosing Spondylitis

Thursday, October 28, 2004

Travelling with ankylosing spondylitis

I've always enjoyed travelling, but since I came down with ankylosing spondylitis it's gotten a lot harder for me. A recent trip to Winnipeg brought this home for me: I now expect elevated pain every time I travel, and this trip was, as I had predicted, no exception. But at least I'm at the point where I can analyse it a little bit.

From what I've observed, pain and inflammation due to AS are higher when I travel for three reasons:

1. Stress. Stress exacerbates autoimmune disease (about which see Gabor Maté's When the Body Says No). Travel is stressful. And travel is especially stressful for me: I plan out itineraries to each pee break, and rehearse every possible (and several impossible) worst-case scenarios in my head before I get under way. It's so bad that even on weekend excursions I have to leave the packing to my significant other -- I'm just too wound up to be useful. Once on the road (or at the airport or the train station), I'm fine -- in fact I'm more than fine: I'm an excellent long-distance driver, and my only problem with air turbulence is nausea, not terror. But getting to that point is sometimes only just short of traumatic. The end result is usually that my joints are screaming by the following morning.

2. Seating. When you've got a disease that requires you to move around a lot to stay relatively free of pain and stiffness, long trips can sometimes feel lethal. My father and I drove from here to Winnipeg in two days: that's roughly 25 hours of driving. By mid-afternoon each day I was desperately uncomfortable. Plane trips are in one sense better because they're shorter, but the seats are cramped and, at 188 cm (6' 2"), I don't have enough leg room. Train trips give me enough leg room, and I like trains generally, but sleeper class is prohibitively expensive and overnight in coach is uncomfortable: I've done it three times, and I've never gotten any useful sleep. So taking the train over long distances is impractical unless and until I'm filthy rich.

3. Sleeping. You're not in your own bed any more, and boy does that matter. I sleep on a fairly firm futon mattress, which seems to work; and I've had good results with an impossibly soft foam mattress as well. But when I travel, I usually end up sleeping on a box-spring/mattress combo, and for some reason that just kills -- it's even worse than camping, if you can believe it. Taking my orthopedic pillow with me certainly helps, and I can usually make it through the night, but I'm usually sore until noon -- at least it's morning stiffness and not a straight flare.

With all of these factors at play, it's a wonder I do any travelling at all. How is it with you?

Comments on this post

  • Hey i know what you mean iam 16 and am in the process of finding out what is wrong. i eather have Ankylosing Spondylitis or Soratic Arthritis and like you i love to travel my worst frear will be my trip to europe in the summer. well best of luck to you in your travels.

    Posted by Blogger Mikea360 (1/06/2005 10:49 PM)  

  • 8 years after being diagnosed I am just admitting to myself I really have AS. Travelling has become harder and harder and I now have real hip joint pain after inactivity and especially after travel. This has just been for the last 6 months. I am on my way back to my doctor whom I have not seen in 4 years....Ho hum

    Posted by Blogger cowgirl (7/29/2006 1:46 PM)  

  • I have had AS for years, but it really started to flare about 5 years ago when I was 49 and took 3 years to diagnose! Sleeplessness is the worst symptom. I am findng that a sleep # mattress works for me and they have a travel-size twin and full that deflate for packing in the car and pump themselves up. Most Radissons now have these beds available. This doesn't help in Europe, but it gives me options here. The British NASS society has some good tips like lying on one's back on a firm surface for 20 minutes each day to let your tendons and ligaments relax.Muscle relaxers can be a good adjunct to sulfasalazine.

    Posted by Blogger hwy41yall (8/01/2006 3:43 PM)  

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