Nobody Knows You When You're Down and Out

If this is like a roller-coaster ride - this evolution of an illness - then Saturday night was the closest I have come to flinging right off of it entirely and into the unknown. It was in short - the scariest day yet. Worse than what I experienced around our moving day. It came the day after a visit from my lovely home nurse Joan in which we had jointly declared things were looking up again - enough to say that this coming week - just a phone call, not an actual home visit, would suffice. It started Saturday morning with flu-like symptoms that escalated through the day and by the the evening I was incoherent, mumbling, screaming with frustration. Couldn't find a place to sit, stand or lie down for two minutes that felt comfortable - couldn't settle down - couldn't stop a level of agitation that was unprecedented. Crawling out of my skin - pulling at my hair - misery piled on misery piled on frustration and shame. Getting up and wandering around rooms, up and down stairs, barely able to hang onto the railings, ready to topple at any given moment - shuffling in my weakness and unable to stop. Blankets, fabric...too cold...too hot...everything an irritant. Took a visit from another home nurse and finally near midnight a member of the Palliative Care Response team to get me on a new drug to settle for the night. My sister not sleeping - not knowing if I would awaken and the cycle would return. So yesterday another lengthier visit with two amazing members of the team to sort out how we might stop this from happening again - and a new medication regime to add to the ever growing list. A more humbling day of trying to recover - waking up to a feeling not unlike a bad hang-over - had alcohol been part of the mix. I had considered not sharing this but it again - is what this journey is about - heaving into the unexpected and hanging on as best we can.