Chapter 264 - Hell for a Fortnight

I don't quite know where we are. her pains persist. The thigh & calf of her left leg. The leg throbs when she goes to bed. She hardly sleeps, although this morning she returned to bed at 7:15 very tired. As for most nights she spends a lot of time sitting on the side of her bed. While lying in bed  she often has her left leg out from under the bed clothes to rest it on the lid of the commode. After resisting strongly, she now accepts having the commode at the side of her bed, next to her trolley which carries all her odds & ends, meds, water and whatever. Sometimes in the night she is able to get onto the commode without waking me. Sometimes she is simply unable to stand & rotate onto the commode without my help, although she may sit there trying to stand without my help. Yesterday morning early she waited so long an accident was imminent so I cut off her incontinence pants with small embroidery scissors she keeps on her trolley; she had done this herself some nights earlier. I have to use the wide blue sling with handles around her body in order to lift, swing her into position; similarly to return her to bed. I had to insist the commode be at her bedside because the shuffling effort, her hanging onto her trolley, me assisting wherever possible (if I was awake) was just too cruel for her. And then her hanging onto the fireman's pole while trying to pull her pants up was all just too painful & stressful for her.

She regularly tells me that between , say 11pm and 2am she may have to urinate 5 or 6 times. I usually lose track as I doze off. One night I was awake almost as much as she was so that next day I felt as if I had jet lag, quite light in the head, unstable on my feet, was glad I had no need to drive anywhere. I did not let on to her that I felt that way, otherwise she resists waking me when she really needs the help.

Last night she told me while in bed that there were pains in her chest, the back of her head, her shoulders. She occasionally checks her blood pressure. I suspect she feared she was having heart problems. I think she has been near a panic attack quite frequently.

Last week I spoke to Jane the PD nurse in Hot Air City about finding someone using an apomorphine diffusion pump to speak to her about the pros & cons, she has not got back to me yet, there was someone that had been using normal injections about to go on a pump. Unexpectedly, during the conversation, Jane mentioned twice that apomorhine was not a cure, as if we were unaware that none of these procedures cured PD, after 21 sodding years, the last few months of which her quality of life has deteriorated at a rapid rate. We already know there is no way out; we just need some relief. Doctors & nurses may pass off using injections as a simple procedure but I doubt they appreciate how abhorrent doing so may be to a patient & carer.

Each morning I am using the Wii for hula hoop exercise so that I avoid lower back/hip problems from lifting her to her feet (a few "twinges" in my lower back scared me, if we both have standing/walking problems then we will really be in the poop) and usually I encourage her to do the stepping exercise on the raised board although sometimes, as this morning, she does not complete the 800 steps. Although her problem is with pain in her left leg, I have noticed that when she is Wii stepping her stands on her toes of her right foot and may use her full foot when I mention it.

In the last week or so she has made two cakes in the oven , one to be iced for her birthday, the other she has cut for me to eat, as well as two plum puddings (for Xmas?) in the microwave one of which she miscalculated the timing so we are eating that as sweets & I find the chewy pieces are to my liking with a cup of tea. And she has made an embroidered wall hanging calendar for her sister.

Yesterday she spent a reasonable day at Respite. On Monday last week the person in charge of the respite facility came to interview us, seemingly a requirement for customer satisfaction and reporting for government support I suppose.

Apart from Respite on Tuesdays and perhaps once or twice walking around the corner to her friend's place she has not been out. Last Saturday I went shopping on my own, she was not up to venturing out. One afternoon I suggested we walk around the village, but once out the front door she was unable to go further.

Yesterday she increased her meds to reduce the time between doses from 4 to 3 hours hoping to decrease her OFF times. I intended to record her ON/OFF times today but forgot; there will always be tomorrow.

I subscribed to some Soul Seeds for her a week or so ago; unsure whether the daily message helps her; she makes no comment about them.

She said to wake her at 9am, it's now 9:10. I found her seated in front of the TV. "How long have you been up?" "Since 8; my legs were hurting too much." So I made her two slices of toast with apricot jam and a mug of her chai latte. I suggested she use the Circulation Booster to ease the pain in her legs.

I must have a shower; she will want want soon, although hardly ever needs assistance with drying these days. Problems & our reactions go in cycles.