So, today another new experience. Off to Skate the Lake in Portland, ON at -15 - dressed warmly and thank heavens for the numb hands and feet as they really felt not much...
Anyway, two incidents of falling down - just a sudden loss of balance and over I went, with no capability to prevent myself from spilling, to the back and the left. Fortunately the snow was soft, and I was able to figure out how to fish myself out in time, but my companion told me he thought it was just a regular loss of balance - but inside me I knew different - I suddenly had no ability to control my limbs.
Maybe just the cold, right?
I feel scooped out, scraped clean along my husk like a wedge of cantaloupe. The blanket I'm under is wrapped around me, but I only feel one section of my body, an area under my breast on the left hand side. The rest of my body feels absent, air-like, weightless, sensation-less.
My face is gone, one sliver left, around my cheek. The rest has no weight, no form, no edge. My legs end in nothingness, my arms sense nothing below the elbow.
I feel my consciousness hanging loose, like a low-lying cloud, suspended in a transparent framework without form.
Ah, yes the first time I heard that, as I peered at the woman through my fatigue-bleared eyes and adjusted my jacket so I could secretly, urgently, scratch my latest injection site, which was doing its usual growth into a red angry itchy welt....
I was at a conference today about chronic disease management and it was like the entire conference was geared to me - all about the cycle of disease and poverty, about the abysmal income of people on social assistance including ODB, the differential treatment the poor get, the importance of positive thinking, humour, never giving up...and the effect chronic illness has on families.
As a newly divorced woman, who left her marriage before diagnosis but partially based on the total lack of support I was getting from my husband on anything, and as a health care manager who works trying to get care for people with chronic disease, and as someone looking at the potential for poverty just ahead, I could identify with it all. It was interesting, motivating, and even gave me an idea about a possible solution to my fatigue problem in terms of work.
I'd put on makeup and a nice jacket to go to the conference, and everyone kept telling me I looked good. A few know of my diagnosis, and asked how I was. I told them I was slipping into another flare up and felt pretty ragged - and their comment - "But you look great!" highlighted the problem so many people with chronic illnesses face - unless we walk with a limp or have missing parts, everyone assumes we are "normal". One of my more perceptive colleagues said, after the comment, "Wow, that must be the worst thing for you - feeling bad, but looking good - I mean, how can you persuade anyone you are not okay?"
Today was a "peering through the mist" day - when feeling most out of sorts, my vision narrows and I am enclosed in fuzzy surroundings, with a vague central visual field that works. My eyes squint and everyone who sees me says, "ooooh, you look TIRED!" I do. I look greyish white, my face frozen in the dead energy required to keep me responsive. I can arise, sparkle briefly, but it is like pulling on resistance bands - the return pull gradually gets harder and harder.
I'm struggling - with the change to my life circumstances, with the fear of disability, with the loss of my future career. I don't know where to put my feet next and freeze, unable to move.
Late in the day today, I had a call from a colleague and friend who knows about these struggles first hand as she watches her partner go through them. She was a beacon in the fog - a mellow warm yellow light, leading me forward.
Today was a learning da. Today I am learning about losing faith. Back when this all started happening to me, I thought, if only I can get a diagnosis! Then I can be put on some disease altering medications and then I will be all better or at least I won't get much worse - and I can live with what I've lost so far...
Today, though, it's back. The numbness has crept once again across my feet, up my arms, across my abdomen, along my face and scalp. It is like the obverse of a romantic touch, erasing sensation instead of starting it. It creeps with catlike tread, leaving me with fingers that drop, toes that spasm, and breasts that long for touch but know they cannot feel it.
I've been on "disease altering medications" for a couple of months now. I felt my brain clear when I started them - washed clean like ammonia on windows, leaving a pungent aroma of the cleaning solution. The medication is glatimir acetate, injected once daily into my subcutaneous fat. The injection itself is painless; the burning afterwards not so much.
I had such hopes for response to this medication. It sounded so good. But I am losing faith....