Pretty Accurate…

I hear “devastation” and think of a house blown away in a tornado- just a cement foundation left or a Titanic level industrial accident.
My life has been devastated by my chronic illnesses, but is truly devastation by a thousand cuts. My life wasn’t a one big blow life change. Over the last ten years, my life has been salted by new diagnosises or removal of one every few months or years, each with it’s own regime of medications, specialists, surgeries and procedures. 

I feel like I can’t ever my footing with what my body needs. It’s difficult when I don’t know what expect from my body day to day. Can you imagine not knowing if tomorrow you’ll be up to doing your regular shopping or unable to function out of the house without a wheelchair? I love writing, but sometimes my back is too wrecked to sit up for more than a few minutes. It’s all a bit of making hay while the sun shines- except if I spent too many spoons I’ll hear about it- feel it- for days. There is no normal. There is no anticipation. No business as usual. 

Devastation. My life has been razed an inumerable litany of things- large important life events to small, sweet intimate moments. I have chosen not to have children (biological, fostering, or adoption) for several reasons; primarily my lack of consistency in care giving- even for myself. Because of medication and chronic fatigue related brain fog, I’ve given over the majority of driving to my my husband. The lives of my family and friends-even my husband in a way- pass me by while I sit on the sidelines watching my nieces birthday party play out Facebook or my friends attending “Painting & Pinot” ladies’ craft nights out. My husband hosted our annual New Year’s Day Open House. It was extra special this year because we missed the last two years and it’s the first at our new home. But, I couldn’t attend an event held one floor below me. I made a fairly torturous treck to show my face for about fifteen minutes. 

My life looks nothing like I wanted ten years ago, five years ago. And while I have good days, the bad days cast a heavy shadow over their light. I lacked the capacity to perceive how much physical and emotional pain a body can experience. I had no reference for how small and sparse a life could become. I couldn’t have perceived the trauma that would alter by body from external surgery scars to internal ramifications of atypical wear and tear on joints and nervous system. 

I suppose this could be considered a perky ending. I do have a constant in my life, my husband Chris. He’s my cheerleader. He makes me laugh when it’s the last thing I want. He is always always here as a shoulder to cry on and as a sounding board. He has cared for me bodily after multiple surgeries when I couldn’t get out of bed, dress myself, or feed myself effectively. He is always up for facilitate getting me out of the house even if it’s just a Starbucks run. ( ⭐️ 🦌 = Starbucks?? 😜) I couldn’t love Chris more if I wanted too. It’s an especially keen ache for my disabilities to inhibit my ability to express and demonstrate my commitment and appreciation of his love and our marriage. 

My last love that brings positivity in my life is music, punk, post hardcore, alternative, the headliners being Green Day and My Chemical Romance. I have downloaded 12 GB of on my phone. If I’m alone, my music is playing. I even sleep with my Bluetooth headphones on- right now even. I have great Bluetooth speakers in our master bedroom and my cherished turntable and modest vinly collection in our living room for days I can get out of bed. Besides being good music, they sing about concepts and feelings that I find too nebulous to confront head on. 

I appreciate you sticking through to this point. I know it was pretty rambly and scatter shot. Thanks! Consider a like? They make me probably a little too excited to know someone chose to read my work. 

Note: Chris & I are always proactive and vigilant in caring for and seeking out new possibilities for improving my situation. Sadly we hit a lot of dead ends. Tomorrow I actually have an appointment to with my pain specialist to discuss any new or different procedures that could provide any relief from my chronic severe back pain. We live in a city known for its cutting edge medical care. We live just a few hours from several medical schools as well. But, in some seasons of life, not much can be done. 

After devastation, you can choose to look around and decide what is truly important and of value in your life. The things I have lost haunt me everyday. However, I hold my remaing items incredibly tight praying they aren’t the next to blow away.

Bed Rest in Chronic Illness Land



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