As We Are

If you look to the right, you'll see the various labels I file my posts under - one of which is called "Silver Linings." It's obvious by now that I typically search them out. They help me make sense of the pain I'm consistently facing, the dramatic ups and downs of this disease, and typically I can find them without much effort. Monday was not one of those days. It's important not to let the disease beat us down, but it's also imperative to be realistic. We can't waste precious energy or spoons by trying to play Pollyanna because let's face it - sometimes, in the wake of great pain, it can be downright impossible to stay positive in our own heads. Sometimes we've got to just....be.

If you follow my blog, you can easily see the erratic nature of Spondylitis. So much can change from post to post and, while one day I might be climbing the hills of Italy, the next I might be struggling to walk at all. I've pushed it lately with various visits and trips, but on Monday and part of Tuesday I was in the kind of pain that I forgot was possible. After a restless night, I woke up startled and actually scared by how I was feeling.  I could barely move and it truly felt as if I was being stabbed in every joint and muscle. At the same time, I could feel each vertebrae and rib aching and burning so deeply that it was hard to breathe. The nature of my pain has changed over these past couple of years. It has never been this intense and, although I'm quite familiar with pain, I just can't ignore or assimilate to this. In fact, I refuse to. It's not easy to admit, but this kind of pain is often accompanied by a waterfall of dark thoughts: How can I even get dressed today, let alone be a social worker? How can I possibly be a successful wife or mother? How can I stand this pain for the rest of my life? What if I just become a burden to those I love? 

My dad was just leaving for work when I made my way downstairs. He and my mom are extremely talented at reading my face when I'm in pain...I'm pretty sure it's a "parent thing." He sat down with me, reminding me that I've had very bad periods before and that I've always gotten through them. He told me that it's easy to feel like it's permanent when you're in the midst of suffering and he made sure I knew how strong I was - that I also have great love and support to get me through the harder times in my life. I told him the fears that my mind indulges on days like that and he urged me not to get too far ahead of myself. That sort of worrying can also increase inflammation, so of course he's right. It's got to be one step at a time...one stiff-legged step at a time. It's the only way. He also reminded me that a big thunderstorm was on its way, so at least there was a reason for the dramatic shift in my body.

I believe I can be doing better than this and I'm going to fight for it. The truth is, though, no matter what happens I'm endlessly lucky to have this kind of love in my life: the family that would go to the ends of the earth, the boyfriend who would do the same, and incredible friends who will just listen and lighten the load. They remind me that I don't need to put on a show and, as the disease takes its course, this is an invaluable gift. Chronic illness is rough. Sometimes we just need to let ourselves be less than positive - to know it's okay to come as we are.

On these days...on days when it's a struggle to see the reason behind the illness...what keeps you grounded and strong? What keeps you going? 

Love,

Maya