This is a guest post written by my friend Karen McNaught.
Ouch I’m Alive
Or why I sometimes overdo it on purpose
When you’re sick, you’re sick, right? Disabled means you’re disabled. Not just yesterday or tomorrow, but all the time.
Not so with RA. RA is good days and terrible days. I’m talking days when you can barely lift your head from your pillow, where only a sense of duty and obligation forces you through the motions, and days where I can easily scoop up my 55lb son and carry him up and down the stairs on my back. When my RA was not under control, there would still be days where I would lift my son into a hug because I love him so much and it’s not fair for my flare to say I can’t. I supposed it makes it difficult for people to sympathize with me when they see the extremes of those good and bad days.
If only it were possible to read minds, or to really walk a mile in another person’s shoes. I try to remind myself of all of my own prejudices from before the pain & diagnosis.
If someone told me they were sick and in pain, I think I would have expected them to 24/7 act like someone who is sick and in pain. I would expect them to not push themselves to make cupcakes for their child’s class or go camping with someone else’s children as a Girl Scout leader. If they took Monday off from work because they had pushed themselves too hard on the weekend, I would probably question their commitment to their job…
We’re supposed to be disabled, so we shouldn’t ever appear abled. We know that an afternoon of weeding could lead to a day or two or more of agony – why push yourself? Why do that to yourself?
For me it’s because I need to know, at some point, that I am more than just a damaged carrying case for my mind. I need to feel like a contributing member of my family or society. Sometimes I want to feel “normal”, whatever that means. My disease is not on a linear path towards total immobility, but has good days and bad days, or good hours and bad hours. And when I can move, I don’t want to sit still. I need to have those days where I can really feel that I am still alive, and my life is worth living.
So please forgive me for wanting to bake my son’s birthday cake myself, or for taking my Scouts on a hike. Today is a good day, and I want to make the most of it. Or today is so important that I refuse to let my RA get the best of me. Or today I am tired of resting my joints. Let me worry about tomorrow later. Today I want to feel alive.