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Difficulty sleeping with CKD…

Kidney & Bladder | Last Active: Oct 12, 2023 | Replies (16)

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@mguspixi25

I usually have limited sleep due to reliance on my ventilator to maintain life while sleeping, so that is another means of sleep interruption that I’m used to, but happens around 30x per night.
That’s not the problem, since sleep disturbance causing difficulty maintaining and falling back to sleep has been present since 3a CKD has been present.
I’m not sure if those things you’ve mentioned above are specific to you, however the majority do not apply in my case (I do not consume caffeine, added sugar, or eat close to bed time - this specifically has been something I’ve managed for decades having inflammatory bowel disease (ulcerative colitis), so count that one out… and besides, I work with dietitians….)
I can confirm that MGRS IS the cause of CKD in my case. It’s laughable to expect Au docs to recommend what to do with CKD - despite asking, there’s a vacuous pause that indicates I’m well and truly on my own in that regard (I just read through much of the content on Plant Powered Kidneys, and the things I’m already doing are what’s recommended on the site, withstanding contraindicated foods for inflammatory bowel disease).
I don’t drink alcohol.
I don’t take meds that impact on sleep or kidney function (and I tell the medics what I refuse to entertain which will risk either, so my advice to them is don’t even bother pushing).
I don’t exercise near bed time, nor do I engage in too much screen time (I get up if I’m awake for more than 20mins, and carry on with things like it’s daytime, which works to encourage fatigue, then I go back to bed if it’s still night, otherwise I stay up and do the day).
Nice to hear writing works for you - it has never and never will work for me - my brain doesn’t work that way, and I find mainstream relaxation techniques stupidly annoying haha!
Here’s why: my relaxation at the end of a day used to be riding my motorcycle at around 180km/hr on private winding roads, getting my knee down on the asphalt, and seeing if I can keep it on the black top wheels side down - this was my ‘zen’ moment, being at one with the machine, feeling the grip of the air as it thickens at speed, the buffering of the wind, the crack of the long grass against my visor across my vision as I leaned over into the unseen. This is what would slow my breathing, slow my heart rate, and give me a deep sense of calm stillness in the moment that I whipped by almost too fast to see.
That, or stealing my friends ultralight plane during the night, when there’s a full moon, fuelling it up silently, dragging it out of its hangar and half way down the grass strip so he wouldn’t hear me kick it into life, and zoom into the shimmering night air, with moon shadows of wings playing on the ground below me as I released the harness and leaned out the side for a better view (there were no doors, and so I would put it into a ‘slip’ where it’s yawed to the side, wind rushing through the canopy at 120knots, swishing my hair out through the rear near the fuselage, under the fuel tank). So, journaling, and sitting still counting breaths - which may work for others and that’s great - do zero for me besides create a huge chasm of brain activity which I find isn’t as helpful as the activity is supposed to be. But thanks for mentioning what works for you.
I usually go for a drive in the night, along cliff edge winding roads when I’ve got no other work to do at home to put me to sleep - this tends to be very zen inducing these days now I’m incapacitated more than I used to be.
This might help: as an infant, my dad would put me on the front of his motorbike (on the tank) in the evening, as it was the only thing that would put me straight to sleep! The more snow splattering on my face, the more relaxed I was, apparently. Side note: my degree is occupational therapy, and this has been described in literature as a form of high sensory threshold autism, however that does not fit with my own results (I don’t have autism, however before brain injury which reduced cognitive bandwidth and memory function, I had a very high IQ - not that I ever held that in any regard, because it’s not what you have, it’s what you choose to do with what you have that has any meaning).
Anyway, I worked many years 90-100 hours per week, most of them might shifts, some of them as security personnel. So, sleep hasn’t always been something I get a lot of; the difference now is the problems I’m having from CKD, that are disturbing what sleep I do get. And that’s why I thought I’d post this little qn above 🌺

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Replies to "I usually have limited sleep due to reliance on my ventilator to maintain life while sleeping,..."

@mguspixi25 Well, from the sounds of your post, my remedies will not hold a candle to helping you get more/better quality sleep. Once again, you have shown that we are all so different in how we navigate our health situations. Finding what works for us as an individual is, well, individual.

Your description of what works for you is inspiring. I used to hold a private pilot certificate, and as a young girl, always dreamed of flying.
Ginger