I woke up this morning with tinnitus so bad I thought the birds were going wild, chirping, outside my windows. Even with months off of Tobi the poison lingers. The ultimate battle between the sun, Spring and the last of Winter is on. two days ago it was sunny and warm. I wore a little summer dress, painted my toenails (which gets increasingly harder as I age-- being bent into a position where I can't breathe just to have pretty piggies is just silly) and wore sandals. I traipsed around town running errands feeling like the prettiest little Springy thing alive. Of course yesterday was cold, gloomy and overcast.
Feeling like a less terrified Jacob, aural hallucinations and all, I also awoke to my oxygen cannula wrapped around my neck. Now, I used to be an incredibly restless sleeper as a child. I would fall asleep in correct position and wake up the following morning with my head at the foot of the bed and everything tossed onto the floor. I remember running in my sleep, swimming, jerking away after a dream of an endless fall. I suppose adjusting to sleeping with someone next to me in bed over the years has calmed me but I still have the occasional sleepy thrash. However, it's been years since I have woken up with my cannula somewhere other than my nostrils.
In December my sats dropped to an all-time-room-air-low. I've always had high sats no matter how sick I've been, impressing nurses and doctors alike with numbers soaring in the high 90s. I dropped into the 80s and have recovered some but soon realized after I should likely be on oxygen 24 hours a day. I know it would make me feel better but wearing oxygen during the day is exactly what crosses the line to healthy and functioning to completely diseased. Some of us won't get ports, some won't have sinus surgery, others refuse hospitalizations and do infusions at home instead. We've all got our limits and mine is looking sickly.
I told Q about my recent dreams. Wisely he said, you're having tube dreams. Nearly each night I dream that I am wearing oxygen but instead of being hooked up to a portable I am hooked to a stationary out-of-sight concentrator and there is miles of tubing following me where ever I step, getting wrapped around bookshelves in the Tattered Cover, the cookie and cereal section of my supermarket and even more horrifying it's wrapping itself around cars in a parking lot. In the back of my mind I am thinking, I have to retrace my steps and collect my tubing, and most importantly, I must slow down. But I ignore the anxiety and just keep going and going and going and no one around me seems to notice that I've laid tracks for thousands of steps behind me.
Awake, on an outing with my mom one day, I was so winded from a small walk, feeling blue in the lips and like I was going to collapse in the middle of the Container Store, simply searching the vast aisles for her, I saw something that made me forget I couldn't breath. A beautiful little girl of ten or eleven was running down aisle nine, calling in sheer excitement for her mother to follow, her nose filled with that familiar boogered plastic. Dragging a tank behind her, she was free and happy and looking like a normal little girl despite her baggage.
It made me think for an instance, if she can do it I certainly can, and in some sort of high I avoided running to her and taking her in my arms, likely sobbing and thanking her.
That fearlessness has now faded. Here I am, out of breath, needing naps every day, refusing to spend the night at friend's simply because I've got issues.
That little girl was so strong. I was so impressed.
I was that little girl once. When I was an infant, as a second grader, in junior high and again in high school. But can I be that little girl again?
Others can do it but it still doesn't make it alright for me. I still can't find the button to turn my concentrator on in the dark. I'll cross the line when it's absolutely necessary but until that day, I'll still have miles of plastic tubing haunting me each night.