how to advocate for yourself

Expectation, Reality and the Distance Between

Sara Nash Health Guide November 10, 2010
  • A Day in the Life, Version 1:
    My alarm goes off. It’s 6 a.m., and even though it is still pitch black outside, I turn over, wipe the sleep out of my eyes, and get out of bed feeling refreshed.  I stretch out my yoga mat and sit down, beginning my practice with a few om’s and some stretches before moving on to sun salutations and some more vigorous asanas.  After working up a sweat, I cool down in one of my favorite restorative poses for my final resting pose, then close my practice with a few minutes of meditation. 


    After practicing, I feel great.  My body is free from aches and pains, and I am energized. I fix myself a healthy breakfast of whole grain cereal, organic fruit and almond milk.  Then, I swallow my five morning pills, a combination of meds and supplements, and get ready to walk to work in my stylish but sensible shoes. At work, I am productive in my ergonomic work space.  I have perfect posture and get up every 15 to 20 minutes to stretch or walk around. I sip herbal tea and at lunch, heat up my homemade, all-organic, locally grown vegetable soup.  At 5 p.m., I walk home and fix some more herbal tea while I read, answer emails and post a clever, astute article on my blog.  For dinner, I eat another healthy, home-cooked meal and take the remainder of my pills for the day, along with my shot.  Then, I soak in a hot bath with Dead Sea salts before falling into bed for eight blissful, uninterrupted hours of sleep.


    A Day in the Life, Version 2:

    My alarm goes off.  It’s 6 a.m. It’s still pitch black outside, but if I want to practice yoga before work, then I have to get up now. My body feels like lead, and I would prefer to sleep for the rest of the day. I reset the alarm and promise myself that I’ll exercise after work, even though deep down inside, I know there is a very good chance this won’t happen, and I know very much that I ought to just get up. An hour later, my alarm goes off again, and I curse before grudgingly turning over.  I stretch my stiff toes and the soles of my feet against the bed sheets while I put off the inevitable.  My body feels worn.  After 15 minutes pass, I awkwardly roll out of bed.  At least I can eat a healthy breakfast: whole grain cereal, organic fruit, almond milk, followed by my five morning pills.  I’m over taking so many pills. Lacking the energy to walk, I drive to work and get in a few minutes late. I walk to the kitchen like a zombie to fix my black tea and think, hey, at least it’s not coffee. I try to be productive even though I feel like a tire that’s been slashed.  I slump in my uncomfortable office chair, aware that I am unlikely to make it through the day despite all the work there is to be done. My face is flushed, and I feel hot and peakid. I wonder if I’m coming down with something, or if it is just an RA fever. Given my fatigue, I figure it’s the latter since they tend to go hand in hand. I curse myself for continually forgetting to keep a thermometer at work. At noon, I give up and take a half sick day.


  • Back at home, I crash on the couch for a few hours, lifeless. I still feel flushed and slightly pitiful.  In the evening, I think about doing something worthwhile but then decide the day is a waste.  I scrounge in my fridge and end up eating some low-fat, processed cheese spread on crackers and calling it dinner. I swallow the rest of my pills, then decide to at least check my email.  I have a message from someone I don’t know who suggests that the reason I have rheumatoid arthritis is because I eat dairy. And wheat.  She thinks I’m allergic to gluten, and if I cut all these things out of my diet, my rheumatoid arthritis will be cured. I delete the email, muster enough energy to brush my teeth, then fall into my bed.  It’s 8:30pm, but I feel like total crap and want to sleep for the rest of my life.  I feel guilty for all the things I didn’t get done and that I’ve only exercised twice this week. I wonder if my life really would be better if I only ate green things and gave up dairy forever. I feel guilty for eating that fake cheese, even if it was low fat. I try to fall asleep, praying I’ll sleep through the night, but given my hips are already aching and feel like they are being chewed on by immune system, I fear this won’t happen. A few moments later, I realize I forgot to take my shot.


    The middle ground:
    With RA, there are days when I simply don’t have the energy to do what I need to do, let alone what I want to or should do. On good days, I do a better job, but even so, rare is the week that goes by where I exercise every single day, accomplish everything on my to-do list, only eat healthy foods, and get plenty of restful sleep each night- even if my RA is behaving itself just fine. Even though I know I wasn’t a perfect version of myself before I got sick, having a chronic disease has somehow increased my expectation that I should transform into this perfect version of myself. I know most people wish the gap between their perfect life and reality was a little smaller, but the stakes are somewhat higher when you throw a disease like RA into the mix. There are different consequences, and when my RA asserts itself, it’s hard not to scrutinize every imperfect decision I’ve made and feel guilty. It’s easy to turn that guilt into blame, which leads to feeling even worse and even less motivated. When I catch myself in this cycle, I do my best to step back and put things in perspective.  While the first version of my day is an ideal to aspire to, I’m only human, and there will always be days that are more like Version 2…or worse. Instead of beating myself up on the days when I fall short, I’d do better to remember that life isn’t about being perfect; it’s about being human and letting your best be good enough- even if you have RA.

     

    Sara is the author of the blog, The Single Gal's Guide to Rheumatoid Arthritis.