Chapter 227 - What You Don't See

No, none of you see her as she is in those early dark hours of the morning. Not even those who know her personally. When the pain in her legs prevents her walking to the loo, and this morning, not even to the commode at the end of her bed. I had to bring it the 2 metres closer between our beds, help her pull down her pants as I helped her rise & pivot onto the seat - "I hope I'm in the right place" she said as she sat. She frequently sobs as I get her back into bed.

Somewhen around 5am she decided she would sit on the side of the bed, rather than lay down or go out to her favourite chair in front of the TV. She needed a pillow beneath her feet because that minimises the tremors in her legs - I wonder why? Although she initially didn't want it, I brought the circulation booster (the TENS machine for feet). The stimulation to her legs was only slight, so I applied Sorbalene cream to her feet, even though she says the foot pads on the machine become messy. After applying the cream to her feet the stimulation extended the entire lengths of her legs. I noticed that her heels were very dry & rough, so the cream may help with that as well.

She never moves around the house without her mobile trolley, loaded up with pill containers, bottle of water, Ice Gel tube for pain relief, sheet of Panadol, odd pairs of glasses, her watch plus odds & ends. And of course, her CB radio hanging by its pink strap from one of the trolley handles. I can only wonder why more people with problems like hers fail to consider using CB radios; I recently read in an on-line group someone recommending a whistle for the sufferer to attract the attention of a carer. Our CBs have helped me rescue her from many difficult stressful situations. Of course, bemused friends lacking disabilities simply cannot comprehend why we both go everywhere with a CB radio.

As she shuffled around the house the other day, not lifting her feet from the floor, the image of the woman in "Awakenings" shuffling across the black & white tiled floor came to mind. As I have said before, she may shuffle to the treadmill but usually is able to walk away from it after 5 minutes of exercise. What bugs me is why neither of us are able to motivate ourselves to use it regularly during the day. Early in the week for a day or two I set the kitchen timer for an hour & on the alarm I would help her onto the treadmill; without the alarm, neither of us think of the treadmill except when matters become dire & then it can be too late with too much pain.

I have noticed when holing her hands or arms while helping her walk or position her to be seated, the tendons in her arms are like fencing wire, even when the is no need for her arms to be tense. When grasping hands she sometimes causes me pain even though there is no need for her to grip with such force.

During the week she made some loose jackets & ponchos from some sort of blanket material because she wanted some loose clothing to be able to throw on easily. At least 5 years ago she bought a tablecloth with that sort of fret work pattern cut into it and a set of "Christmas Carol" designs to stitch onto it but she has never begun the stitching; I suspect she fears ruining the table cloth. I often times try to "bully" her into beginning the stitching. A couple of days ago she ordered 3 plain table cloths to stitch the designs, just a rectangle of plain fabric, about $20, so it won't matter should something go wrong. I feel I must encourage her to continue to stitch & sew as long as possible; I fear what is happening to the lower half of her body may progress to the upper. Fortunately she has always found pleasure in sewing activities.

She frequently declares she must remain independent. Part of that is the washing, to which I don't object, although I hang clothes on the line. She sits on a chair at the end of the laundry loading & unloading the machine.

I just went in to check on her. Found her walking about, quite briskly for her, putting away clean sheets & the like, that she had just folded, into the linen press. "Any pain?" I queried. "Just a little down the fronts of my legs" replied as she bent to rub her shins, CB radio swing on its pink strap from her hand.

Has she still a UTI? I don't know. She says she hasn't. Her trips to the loo are just as frequent as always. On the chart I made on which she records her On & Off times I want her her mark her trips to the loo to verify her idea that the urgency occurs as her meds cycle on & off. We are out of the fancy yoghurts (recommended by our daughter to protect against UTI) so down the street this afternoon to shop. We will see if we can buy some test strips to test for UTI. When she was in hospital following the melanoma removal a nurse on night shift complained when a bed pan was requested frequently that she had a UTI & was surprised that a test strip failed to indicate such. If nursing staff can use such things so can we, rather than a visit to the doctor, a referral to the testing lab & a return visit to the doctor, antibiotics & pesaries. The latter, both types prescribed, she stopped using because they caused itching.