When I was diagnosed with ankylosing spondylitis my life flipped upside down. It was as if I was born into a new body; one that I never imagined could exist. I was a baby and everything was new again. But not exciting. It was new and scary. And my life is still upside down.
I still remember the feeling of intentionally exhausting myself playing soccer or running or dancing all night, then waking up happily sore the following morning. This is not what my body feels now. Now, no matter what I do the day before – whether I just went to work, cooked, gardened, or even just stayed at home “resting” – my body reacts as if someone is constantly sticking pins into my voodoo doll and twisting them deeper and deeper into my bones and joints. My muscles are just trying to keep up.
My diagnosis has forced me to start over. Every activity now sucks the energy out of me and inserts pain and fatigue where that energy used to be. I have trouble breathing, enough so that it used to cause panic attacks. The morning after trying to play indoor soccer with my girlfriends it feels like I have been run over by a truck; I can’t get out of bed and everything hurts. I can no longer run a marathon (although it’s still a goal), much less one or two miles without a full-body flare-up that slams me in bed for days afterward in extreme pain, body-wracking back spasms, and no vitality.
Fatigue is not your average tired. Fatigue robs you of the ability to even summon energy to shower, eat, or even use the bathroom.
I’ve had to relearn new ways to get up in the morning, take off and put on clothes and tie shoes, open the dryer door, and accept help when it is offered. I’m still working on learning how to ask for help.
I’ve had to relearn a lot of things healthy people don’t have to even think about. I’m allowed to say that because three years ago I was still a poster child of ideal health. I remember.
Among the first large-scale relearning experiences, something that caused extreme anxiety from the beginning of my battle with AS, has been learning how to travel by airplane again. You wouldn’t think that this would be anything to be scared of; people fly every day. But with all the pain I experience on a daily basis and especially being in what I feel is a stranger’s body, the idea of sitting still on a plane for multiple hours was terrifying. And I would be around people I don’t know, which isolated my experience before I even entered an airport.
What do I do about the pain? How do I sit for such a long time? How do I handle getting up to stretch and deal with the quizzical, judgmental, or curious looks or comments because I’m 26 – or the perceived quizzical, judgmental looks that make the blood rush to my chest and face like fire. Shame. Embarrassment. I shouldn’t have to go through this. I’m too young to be disabled. I just want to be back in the body I know – the predictable one.
Now, I fly with a pillow and cane. I take precisely two ibuprofen (sometimes three) right before I board. Since I usually fly Southwest I get a pre-board pass so I can choose an aisle or front-row seat so I can get up to stretch without bothering my seatmates; contorting my body to squeeze past people’s knees hurts and so does the reminder that my body isn’t like theirs each time I have to get up. I let people help me put my bags in the overhead bins, even though I can do it myself, because if I’m disabled I might as well be disabled all the way (because we all know that people with disabilities are incapable of doing anything on their own).
I have learned to drink a ton of water and ask for at least three full cans of orange juice per flight. At least three. I’ve learned this somehow reduces my pain – quite possibly because the orange juice not only re-hydrates me but also helps replenish sugars and electrolytes. It also forces me to get up to pee which keeps me from getting as painfully and immovably stiff.
Sometimes when I get off the plane I have to use my just-in-case cane. I try to ignore the nagging fear that someone will call me out for ‘faking it’ because they noticed I didn’t use the cane before the flight. I do weird stretches while waiting for the luggage carousel to spin. I take more ibuprofen. I wince in pain. Sometimes I cry from the intensity of the stabbing, dull, deep, acute yet widespread pain that simultaneously radiates inward and outward from my hips, back, shoulders, neck, and wrists. I hope for all my luggage to arrive so I can retrieve my heating pad and plug it in as soon as I’m at my destination. This is one of the most effective methods for me to temporarily sooth the deep, throbbing pain in my low back.
I have not yet been approached by strangers telling me off for acting disabled but I do carry the expectation that at any time someone could challenge my taking advantage of a system meant to help people who are really disabled – because I don’t look sick. I simultaneously carry with me pride for doing what I have to do to take care of myself, to keep the most debilitating pain at bay so I don’t end up in the hospital as soon as the plane touches the ground.
It’s not so scary anymore, flying. I still have anxiety about the expected pain, which is considerable despite my efforts to relieve it. But I have a routine that helps. As my body deteriorates I’ll have to continue to adapt and change. But that’s what my life is. I’ll be learning to fly again for the rest of my life.