Friday, 22 June 2012


It’s 5:00 a.m. Still night-time cool and damp but the sky is light. I’ve had roughly four hours of sleep – the usual amount when I’m taking steroids. I’ll stay up for a few hours and then suddenly run out of gas & sleep for couple more.

I apologize for my silence (again) – and this will likely not be the last time. Lately, my life has shrunk down to a daily effort to stay awake and find ways to cope with symptoms. It takes an hour to face the task of moving from a sitting to standing position, without toppling over and there may be one of two amusing slapstick stores but  I find they are wearing thin. I asked The Dave where I might find help and he made some inquiries.

Yesterday, I was assessed by at Rehab. I attempted to stand on one foot. I attempted to stand with my eyes closed. I was waiting for them to ask me fly. Why not? Just about as feasible an idea at this point. I was astonished that I could do some of the tests and bombed completely on others.

They got me a cane to try. Oh great, one more wobbly limb to think of. I hated it. I do not have the élan of Dr. Gregory House. I thudded up and down, protesting, doing it wrong (apparently). Next came the four wheel walker – a device I regarded earlier with complete horror. I whipped along, did fancy turns, went faster than I’ve walked in a year, until Gail, the head physio lady, ordered me to stop turning pirouettes. I want one. I have a medial requisition to have a loaner from the Red Cross. I don’t care how it looks. Too late for that vanity.

It’s now at the point, where Heather has stepped in and is doing almost everything in the house. I’ve reached the point where I’ve stopped thinking this is optional. I start to cook, walk away and forget (momentarily, so far) that the stove is on. I get out of the car and leave the door hanging open. My short term memory retains a full two seconds of anything.

I have no idea whether the brain edema (swelling) is coming from radiation or whether I’ve sprung a few new aliens – in either case, the only help for it is steroids. I weaned off them after radiation and had a couple good weeks. But edema kicked in with a spectacular field goal and soon I was seeing triple, falling down, had zero appetite, headaches and just for something different, started throwing up. Back to the Decadron.

Two days ago, I started recording my meds because it is standard now for me to forget what I did 3 seconds ago. Did I take the Decadron? Or did I think I took the Decadron? You see the problem. So. I wrote down my a.m. dose – 2.5 mg. I wrote down my afternoon dose – 1.5 milligrams. No. Actually, I wrote – 3:45. Looking right at my notebook, I wrote the time of day, starting straight at my book, absolutely convinced I written the dosage.

I sleep 12 or more hours a day. My favorite pastime is sitting on the balcony with out potted plants, cheering buds to open. I identify with the plants – content to be out in the sun and fresh air doing little else than enjoying the weather. I’m also watching a lot of stand up comedy. Occupations that take zero energy and are good for the soul.

I’ve been noticing that my green crochet sweater has been hanging on the back of my computer chair for a week. One day, when my energy is at a high of maybe…oh…50%, I’ll cross the room and hang it up. Meanwhile, you’ll find me sleeping.


Glen said...

It's so nice to hear your voice again and I'm pleased the walker is giving you some stability and mobility. I'm sure your pirouettes were spectacular! Lots of love.

:-) MaryLou said...

I read this and can only imagine what you're going through and how difficult it is to cope with it all. Get that four-wheeled walker thing. You need to do some pirouettes because they obviously made you happy. {{hugs}}

NEDbeads said...

While you're sleeping, I hope you're having sweet dreams, of flowers and cats and beading and romantic walks with the one who really made a difference. I hope that whatever sleep you get, brings you peace and a rest from the symptoms. Sending you love as always, and some for Wendy and Heather too - because they love you.

Sandy said...


Ruth Jensen said...

Great post, Linda - your thoughts have the mobility your body doesn't (but will, with Rodney!); your wonderful words travel the world.