I'm using the royal "We" here, standing for those of us with MND, especially those of us who live alone.. If this isn't you, I'm so glad.....BUT it is me.
First Adjustment:This morning my first call was to my OT. I have found that I can no longer get off my downstairs toilet. I have bars to hoick myself up, and a frame, but what I could manage two days ago, is no longer possible. So the call was to ask for the seat extension that I have upstairs. Hopefully this will come with her visit tomorrow. As of today, I have to plan loo visits to have enough time to get there via stair lift. And we all know how slow they can be! So planning esential, none of this last minute rushing, the lift takes ages then I have to hold on to walls to get to bathroom... No upstairs wheelchair. But hopefully a special seat will sort tomorrow.
Next adjustment of the day. I have been able to sit on stool to dry my hair in front of dressing table. Yesterday I couldn't get up in my usual fashion, ie using the dressing table as leverage. So I got on floor , (silly me!) , crawled to bed thinking I will manage to pull myself up. But no. Thankfully Eliza was here. She had to place my left leg at right angles to the floor, then support me from the waist whilst I used all my energy to flop onto my bed.. We got there!!!!
Today having washed hair, I decided to leave it to dry without its usual blow-dry. Not a good look. Rebecca visited and has fixed a mirror and my hair dryer by my bed. So no more bad hair days!!! Yey!
The adjustment re cooking: I love roast dinners... And quite honestly am getting sick to death of microwaved meals. So this evening for dinner I'm planning pork chops, stuffing, mashed potato ( a concession, found in fridge from M& S), with gravy and frozen veg.
So at 5:00 I chopped onion to add to stuffing mix... Good tip, it tastes rather better .... But to chop I have to wedge myself against work top.. This takes a lot of energy. Undaunted I fill kettle with water. Very difficult to lift from sink to socket but achieved! Yey! Kettle boils . Now to lift again. Its so so heavy I splurge too much water in, never-mind, add more stuffing mix. It spills! Remember, all this time I'm standing only because I'm taking most of my weight pushed against the work top. So now I have stuffing ready. But have to clear mess. Some on floor. No hope of clearing up! And cleaner doesnt come agin till friday.. At this rate I'll have mice!! Thank goodness its 5:57 so 3 mins early I allow myself a drink! The rest of the meal will be cooked when I've rested!
6:00 News now! See how the rest of the world is coping.
I expect ill eat my dinner about 8:00, not too long to wait! But pre ALS, it would have been sorted and I could plan to eat when I wished, and not just when my energy levels allowed me to complete cooking. RATS!!!
Still it will be worth the wait!
HUG ME, I'VE GOT MND
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