I get scared too

Wednesday was a rough day.

I don’t often have really bad days. Sure, I’d say two out of five days can be bad for pain. Really bad, like not get out of bed til mid afternoon bad. But the odds are that I’d more likely have a good one. Most days I wake up in pain, but it’s manageable..

I open my eyes and I assess where it hurts. Hands? Feet? Wrists? Then I take inventory of what needs immediate help and what can wait. Usually I need to run my hands under piping hot water to loosen them up. Then my day can begin.

Wednesday was a bad day. I knew before I opened my eyes. In fact I knew at about 3am that if be having a bad one. Lately, I’ve been waking up between 2-4am. It’s not that I’m fully awake and can’t go back to sleep. I’ve just been waking up knowing. I wander through my small apartment checking on things, making sure doors and windows are locked, rubbing my cats bellies, drinking some water, before going back to bed.

Some days I go back to sleep. I doze in and out for a few hours and then am able to do things through the day. But not that day. I knew the minute my body was awake it was going to be rough. But the good news was that it was an infusion day. That meant I’d be getting the good meds. True, not in the way I’d like, but I would feel better eventually. And I’d keep feeling better. For at least a month.

I should have known that my bad pain day would run off into everything else being bad. The infusion clinic was a mess. I guess they were short staffed, but no one knew what was going on, or who my nurse was going to be. I should have taken it as a sign, but what could I have done. I couldn’t come back another day, I was going out of town on Friday. Wednesday was the only day, because I usually needed one day to recover. Usually.

I fell asleep as soon as the IV was in and I took my usual dose of pre-chemo Benadryl (to ward off any weird side effects). The plan is that I usually fall asleep during the administering of benadryl and I wake up three hours later as they are taking my IV out. Painless. 

On Wednesday, forty-five minutes into infusion I woke suddenly. Mom was sitting next to me looking at the heart rate monitor with a concerned look on her face. I asked what was wrong but she got up to find the nurse. Apparently my pulse had dropped very low. The nurse had me take a few deep breaths and we waited as the rate on the monitor went back to normal. But that’s when my left foot started to itch. The whole underside felt like I had an isolated attack of chicken pox. Mom took off my sock and started scratching, but then suddenly it was my whole left side. It was awful. There were no hives, no rash, just uncontrollable itching. And then it was like an elephant was sitting on my chest. All I could think of as the nurse frantically called my Rheumatologist was,

“This is it. I’m going to die in this hospital.”

Because what else goes through someone’s mind when something goes wrong in a hospital. That’s where you go to get FIXED. Everything suddenly felt clouded and fuzzy, although maybe that was me just losing consciousness… But for a moment I wondered if I would wake up if I fell back asleep. And then I fell asleep…

I woke three hours later to my infusion finally being over. Instead of the usual 2-3 hours, I had been there for 5 1/2. It was the scariest time I had spent there. Ever.

I was nearly delirious leaving the hospital. I had cotton mouth. I was dizzy. I was hot. Everything felt weird and unfamiliar. Mom kept asking me questions but I couldn’t hear her. It sounded like the mumblings of an adult from every Charlie Brown cartoon I’d ever seen. I was confused. Lost. Scared. The sun seemed too bright. The noises of the hospital sounded like shouting. Why was everyone shouting? Mom looked confused. She didn’t understand what was happening to me. I jumped at the touch of her hand on my arm leading me to the car. It felt like my fibromyalgia was back. My skin tingled, hurt even. I was scared. Of everything.

I guess people don’t realise that it can happen to me too. Just because I go through the motions, live each day as I need to, it doesn’t mean I don’t get scared. In that hospital bed I wasn’t sure if that was my end. If my time had come. Luckily it hadn’t. But the point is I didn’t know that.

I get scared. I’m human.

I get scared too.

If you would like to help support me medically and financially I encourage you to visit my campaign page:

Christine Lilley’s Life Fund

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About sixthousandsteps

In March of 2013, I was diagnosed with chronic Rheumatoid Arthritis and was told my disease was very aggressive. Every day since then has been an ongoing struggle and life lesson on how to stay positive and keep fighting. This blog is a glimpse of how it all came to be, and who knows what the future holds.

Posted on August 14, 2015, in The Journey and tagged , , , , . Bookmark the permalink. Leave a comment.

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