how to advocate for yourself

Balancing RA with Your Old Lifestyle

Sara Nash Health Guide December 16, 2008
  • See the accompanying comic strip!

     

    I must have been crazy.  I must have been full-blown, off my rocker, totally-possessed, post-diagnosis crazy.  That’s the only way to explain why last year for the holidays, though I was in the midst of my RA at its worst, I thought it would be a good idea to host my very own Thanksgiving meal for the first time AND throw a holiday party three weeks later for all my friends. (Warning to the newly diagnosed: do not try this at home!) I’m pretty sure most sane, rational people would think it perfectly acceptable to take it easy and give themselves a break under such circumstances, rather than knocking themselves out to produce not one, but two huge holiday feasts. But that is exactly what I did.


    Clearly, I had something to prove, no matter the fact that I was having trouble dressing myself and was so exhausted I thought my eyeballs might fall out. I dug into Thanksgiving preparations and, with visions of Martha Stewart dancing in my head, set about planning the menu. I decided that we couldn’t just have a turkey, because my family always had a turkey and a ham.  So I decided I would do both. And I’d make the mashed potatoes. And my mother’s sweet potato casserole.  And a rosemary loaf cake for dessert. And do wine pairings, and use my grandmother’s nice silver and linen napkins etc., etc.


    Yeah.  Like I said, totally bonkers. 


    I somehow managed to pull it off decently (and was sane enough to at least allow my guests to bring some of the other trimmings.) But then, three weeks later, in another fit of raving lunacy, I decided to go ahead and throw my annual holiday party and went about planning that, too.  I did move it to a Sunday afternoon instead of Saturday night to give me an entire day to prepare and to avoid having it go late, but the perfectionist in me wouldn’t let me off the hook one bit on anything else despite my aching, swollen fingers and my stiff, painful shoulders. (I guess you could say I have trouble doing things halfway.) I ran around town getting decorations for my apartment, specialty foods and ingredients from all the best shops in New York, and even squeezed my poor feet into little heels for the party. I did have fun, but in truth, I felt pretty miserable and fell into bed when the party ended.


    As you can imagine, by the time Christmas actually rolled around, I was so tired and worn out that I spent most of my holiday visit with my family cuddled up on the couch feeling awful or upstairs napping.


    Looking back, I have no earthly idea how I managed to pull everything off. But the bigger question is why didn’t it occur to me that I didn’t have to take all of that on in the midst of being sick? Why couldn’t I give myself permission to take care of myself?


    For starters, I think it’s pretty obvious now that I was in complete denial. I couldn’t understand everything that was happening to me, so even though I was in severe pain, I kept operating on a berserk autopilot, doing the things that felt normal to me as if nothing had really changed.  If I could just keep going through the motions of what my life had been like before, maybe my life would start to be that way again. Deep down, I needed to know that, even in the grips of this illness, I was still going to find a way to be me.


  • In the year that has passed since, I’ve felt a need to push myself quite a bit and prove that RA won’t get the best of me, no matter what.  Sometimes, like last Christmas, I managed to make it through only to have RA push back harder. Other times, I’ve been the clear victor. And in the process, I have learned another important lesson, which is that it is ok to stop and rest sometimes. I can choose to not do something without it meaning that I can’t do anything.


    For the holidays this year, even though I’m feeling much better and more capable of being a hostess extraordinaire (and still a bit tempted, I confess), I found myself more than happy to let other friends host Thanksgiving at their home while I settled for making the turkey and a few other dishes. And my annual holiday party? I’ve decided I’m ok with simply being a guest at other people’s parties this year, so I’m letting that go on hiatus for now.  And guess what – the world hasn’t stopped turning, pigs aren’t flying, and not one soul thinks any less of me for not going all out. More importantly, I’m not going to wear myself out so much that I can’t enjoy any of the season’s fun offerings. Finding these compromises is my gift to myself this year.