I have decided that you may not want my ramblings in your mail box every day. So I have, for your health, decided to collate a couple of daily blogs together. Just to remind you these are in effect my notes, so are quite brief and to the point. If you have just ‘switched on’ you will need to read the rest of the blog to understand my ramblings.
- Sunday: After a late night, 1am. I woke at 4am wide awake and ‘stop press’ tried a meditation app a friend had recommended for about an hour or so. Finally went back to sleep, and overslept (which is almost unheard of) so didn’t take meds until 7.30am (yes, I only overslept by 30 minutes, hardly rock n roll). Usual morning shuffling around with walking stick until meds kick in. Meds at 11am. Morning was good and did some bass guitar practise and general household jobs. Out for family lunch, 2.30pm meds. Bad movement from 2.30pm, and that dose of meds didn’t kick in properly. So rigid and neck and back twisting for 3 1/2 hours very uncomfortable (not actually painful, feels like I’m being wrung out). Took 6.30 meds earlier and slotted in an extra med as out late The meds for the rest of the evening worked and so had a fab evening at the pub music night. Danced and stayed up until 11pm (and had a few g and ls).
- Monday: After another lateish night. Woke a couple of times in the night as per usual. The day has actually been okay ish. Meds have generally worked okay, PD still annoying. As a team effort, tidied and did charity shop bags. A ‘no passengers’ day, which means don’t stand still otherwise you will be thrown away, so clearing out anything that isn’t useful. Out for dinner in the evening. By 10pm shuffling and running low on meds.
These past three days have been sooooo different to the twaddle over the past couple of weeks. The unpredictable crashing of the meds three or four times a day was very debilitating. The past three days, although PD has been bubbling along in the background, and bits and pieces of symptoms have broken through, even Saturday afternoon was nowhere near as bad as the past couple of weeks. So tremor, walking, rigidity, slow movements all popped in and out of my days.
Why – who knows. Protein interferes with meds so I know I should leave a gap between eating and taking meds. I did take an extra med late in the evening Saturday and Sunday to get me through the evening, but that doesn’t account for the days being better.
So, if nothing else, these three short daily blogs, demonstrate how living with PD means always clock watching and working out meds timings and eating.
I think I’ll do a daily blog every once in a while.
The next one needs to be a Vitality 10km explanation. It should have been today, and actually today has been okay ish. However, it was still a sensible decision not to run, with my lack of training over the past couple of weeks and exhaustion and weight loss.
Crickey it’s complicated.
