Surviving Ankylosing Spondylitis: Family Events
We live with ankylosing spondylitis every day of our lives. We wake up with it, we eat meals with it, we watch TV with it, and we go to bed with it. One might say that ankylosing spondylitis is a member of our family. However, like your Aunt Edna who you wish would never visit, AS is not a family member we want to be around.
Combining AS with our regular family events is rarely easy. There are days we can’t get out of bed, let alone go to Grandma’s house for Easter supper. But, unlike activities with friends, which you might be able to postpone, it is usually impossible to get out of spending the day with family.
Surviving family events with ankylosing spondylitis is one of the trickiest minefields I try to negotiate. Just showing up is the tip of the iceberg. We need to navigate such obstacles as meals, playing with kids, and finding rest and relaxation.
These are some tips I have if you struggle with such things.
If you’ve read my article “I'm the Life of the Party,” you know I need to avoid dairy and sugar to avoid unnecessary pain and stiffness. I am also allergic to seafood and have recently discovered an aversion to pineapple. I'm sure anyone reading this also has one or two dietary choices or restrictions they need to observe. These are easy to deal with when you are at home cooking for yourself, but when Grandma is breaking out the family recipe book, anything goes!
Like I said, not eating what everyone is eating can be heartbreaking and might make you feel left out. But, unfortunately, when it comes to your health, you can’t make exceptions. That is why I try to make it clear what my needs are before the first cup of milk is put into the gravy. I ask what they are serving and if a dairy free option can be made. Changing the menu before dinner is put on the table will save you from appearing to be rude by not eating.
Secondly, if no exceptions can be made, I simply bring my own food. It’s not always easy to do, and you might get a few looks, but it’s worth it. If the family is eating pizza, I get wings, and the family knows they are my wings. When everyone is eating ice cream, I bring a sugar-free Jello cup. And, yes, it is awkward when I need to explain to a 3-year old that it is MY Jello.
While we are on the topic of kids, let’s discuss how to protect yourself from the brood of youngins. I don’t know how it is for all y'all, but my nieces and nephews want to wrestle, get picked up, do flips, and climb me like a monkey on a coconut tree. And, I can’t tell you how much it breaks my heart that I can not let them do that. I’d love to be the big strong uncle who has no physical limits, but that is not me. If you have kids who need a little physical attention, I find it's best to have a clear cut policy of limitations.
A few years ago I instituted a “No Ups” policy. Even on my good days I will not pick them up (short of saving them from falling off a cliff). Yes, they are light, and I sometimes carry boxes that are 50x heavier, but when I put a box down, it’s down.
You know kids, once you put them down, they want to be picked up again! (If you can put them down in the first place) It’s the strain and the repetition that gets me on my good days and my policy protects me on my bad days. It’s important to have consistency with kids. Having a policy of “never” is easier than trying to explain the difference between good days and bad days. It’s not perfect, of course. I need to remind them every visit. But, for my mental and physical safety, I need them to understand “Uncle Elmo” can’t pick them up, so please don’t break my heart by asking.
Everyone with ankylosing spondylitis is different. We all have various limits of what we can do, and how long we can last in certain situations. Everything from the family touch football game, to just sitting and watching fireworks has its own list of potential issues. That is why when things get too much, it’s imperative to take breaks.
For starters, I would never be involved in a family touch football game, that is a limit I have right off the bat. But, when my pain is high, even loud talking can be too much. I try to find quiet spots where I can go to decompress. If everyone is inside, try going outside, and vice versa. A guest bedroom is a wonderful place to take a break. Or, in a pinch, the bathroom at the end of the hall that hopefully nobody needs to use.
Bring your own chair to outdoor activities. Don’t settle for sitting on the ground or standing. If your host doesn't have enough seating, it could save your back to plan ahead. And, like with everything, make it clear to everyone that it is your chair. It will save you from having to ask your cousin Phil to get up when your legs are about to give out.
Living with ankylosing spondylitis isn't a garden party. It’s painful, exhausting, and unpredictable. Unfortunately attending family events with ankylosing spondylitis isn't any easier. We need to manage everything these events throw at us while remaining as positive as we can. Hopefully these tips have helped you, and feel free to post your own in the comments. Together, we just might be able to survive our families!
Do you use the word disability to describe your AS?