Difficulty sleeping with CKD…

Hi. Im sorry you are having this sleep issue.. not fun! I have felt the back/kidney area pain and have found drinking more water helps me almost immediately. But that can be tough when it causes you to be up all night in the bathroom. Maybe try to to get plenty of water, but earlier in the day? I’ve been reading about the importance of magnesium for us and it’s helpfulness in good sleep as well. As to feeling toxic, getting back into my vegan/vegetarian eating helps me feel healthier overall. I hope you can find some relief…. There is a very helpful blog created by a renal nutrition specialist that I’ve been following called Plant Powered Kidneys. Lots of good information there.

Thanks - yeah it’s not much fun sleeping only a few hours a night; productivity is way down.
I drink at least 4 litres of water a day, two of those with balanced electrolyte added, because I have drenching night sweats (due to a bone marrow problem called MGRS, which is a precursor for smouldering myeloma with kidney disease), and the first two litres are within the first hour of waking in the morning (because of the amount of sweat lost overnight - I’ve had night sweats for years; the loss of sleep didn’t happen till I developed CKD, and I never used to get up multiple times in the night to go to the bathroom prior to developing CKD). I also drink water overnight to replenish some of what is lost during that time.
I have a totally made-from-scratch vegetable and lean meat diet (everything is made at home, from the whole foods - and I make my own yoghurt, cheese, and bread using ingredients that suit inflammatory bowel disease..I have ulcerative colitis..which is working extremely well. Due to malabsorption I am limited as to what I can eat that will work for me, as well as having to eliminate foods that create inflammation - I need to have proteins from meat sources considering the grain/plant based proteins in most protein supplements put me into colon flare. I’ve tried FODMAP and Mediterranean diets, as well as others recommended by dietitians, but I have found that making everything from scratch using a wisely selected wide array of nutrient dense raw materials works the best for my bowel, as well as using a natural reds and greens powder to supplement, and supplementing monounsaturated veg oils in smoothies made with veg and water base does wonders for maintaining my weight/nutritional levels).
I take magnesium (have done for years), to help with a ventricular ectopic problem (it does help somewhat with reducing this), and I take around twice the dose based on reduced absorption in bowel due to IBD/UC. Levels are good in serum.
I haven’t eaten any food not made at home from the whole foods I buy since around 10 years ago now, and every dietitian who has reviewed my food planning says they are completely happy with it and wouldn’t change it. I also supplement with liquid vitamins (tablets aren’t absorbed due to IBD).
However I’m always open to checking out new info, so thank you very much for the Plant Powered Kidneys reference.

@mguspixi25 Not getting enough quality sleep can certainly be a problem! And to get it in fragments is not much better. In my experience, it has been many years since getting a solid night sleep.

One of the big factors, is understanding what the underlying cause of your kidney disease is. It sounds like the MGRS may be the cause? If so, has your doctor steered you towards any remedies to alleviate symptoms? Do you take medications that might be disrupting your sleep cycle? They say that as we decline in kidney function, our bodies are not as easily able to rejuvenate during sleep hours, and good rest can become elusive. This gets us into a never-ending cycle.

Limiting caffeine and/or alcohol might help. As can eating too closely to attempting sleep. Or exercise too closely to sleep. And let's not forget over-thinking and stress, that never-ending wheel our minds get onto! [that's my biggest culprit] Sometimes journaling out my thoughts, trying relaxation techniques, shutting off electronics will all help in part. Do you think any of these might be useful to try?
Ginger

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 🌺

Nice to see another airplane fan here, I live and breathe things with wings.

Ultralights are a blast! A close friend had a Quicksilver MX. I loved to fly it low and slow, right off the deck.

It stalled at about 23 MPH... I could stay safely airborne at 30 MPH. My favorite sport was to spot a large open field with harvested hay bales. Fly at a couple feet, zig-zapping among the bales, hopping up and over... like a motorcycle with wings.

You might be interested in joining a Facebook group such as "Ultralights," "Airplanes and Coffee," "Taildraggers," etc.

I have a Cessna 140 (N76937), a "fun" plane, great for sightseeing from the air. A Piper Comanche (N6898P) for traveling... fast, roomy, and comfortable. Also a BD-4 homebuilt, which my son and I test flew about 20 years ago. I't still going strong.

If interested, you can check them out on Google by entering their "N" numbers (N76937, etc.).

A few years ago I registered the planes in my son's name, to simplify things in the event of my death, or loss of flight certificates. At the moment two planes are out in Seward, Nebraska, the third (1946 Cessna 140) in a friend's hangar out in Chandler, Arizona undergoing restoration.

As I'm sure you're aware, the aviation world is like no other. If you're absorbed by it, it's a lifestyle like no other... total freedom.

Best of luck with your medical issues .

Warm tailwinds!

@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

I wish I pursued flight; I was trained by a friend who was an agricultural pilot and commercial flight trainer...the story is:
He was working as an ag pilot in a Piper Pawnee PA-25, and he also had an Grumman Ag Cat, with which he would spray, as his main job (and training was a side gig at the local regional air base). He would get all the hard jobs where other pilots had trouble accessing (strip, terrain, distance from base, etc), so developed a rep for working miracles with his spraying. He trained me (as fearless as I am - without being remotely reckless, apparently a unique combination per his opinion), to do the jobs that the Piper or the Ag Cat couldn't do, like ravines, mountainsides, and the like. So, as completely illegal as this is, he got a set of quick release booms to mount beneath the wing/anchoring on the axle and tank system to sit in the passenger seat made, and he decided to train me as the pilot of this totally under the radar beast. So, not being an 'actual' pilot holding a licence, there was back then a loophole in the laws, that meant I wouldn't get in trouble if I was caught.. hahaha. His method was to sit in the passenger side, and tell me to slalom between the poles, below the wires without hitting the wings on the power poles as I went. A little tricky, but achievable. For a time, anyway, before airspeed shedding from all the yawing made control surfaces less responsive. Anyhow, after I mastered the slalom (which was the hardest of the skills apparently), he said I was ready to go! I would fly to the location at dusk, land in a field away from the farmers airstrip, and wait till early morning to pop over in the truck (I mean an actual truck; not what aussies call a ute) to collect the chemicals from the local supplier, and operate the loader for the Piper and the Ag Cat), collecting around the entire days worth of chemical required for the planes to spray (it was a big truck, with a custom huge removable tank anchored on to the tipper bed that I would crane on and off with the loader bucket and chain). Then, as the Piper/Ag Cat (depending on what he took to the site) was zooming up and down the fields doing the most perfect P-turns you've ever seen, I was scrapping around along hillsides, dodging trees, rocks, and spending time trying not to tear the Dacron off the wingtips. All illegal spraying from a recreational aircraft 🙂 I personally loved it, and found it was so calming, and I never crashed! Unlike my trainer (he always survived, but I have no idea how he went through so many aircraft haha).
So that was my introduction into flight, and why I have the particular style of piloting that I have (people often say they wish they'd brought spare underwear when coming for a little circuit with me, but that is what you get when you fly with No Formal Flight Training Airways! hehe).
I did have a couple of engine failures, and found that the glide on the Thruster T300 was pretty impressive for what it was besides the heavy oversized engine causing a nose-down situation, so it was always in safe hands with me because I always had a place to set it down within view no matter what terrain I was over (had an oversized aftermarket Rotax engine, and a huge prop with this fixed pitch that took bites of air that made the entire fuselage shudder! It was the bestest most awesome beast to fly).
He also had access to a little Tobago, which was so cute, and had carpet on the ceiling, and like sitting in a 1969 Nissan Z432 Fairlady with a targa top 🙂
However I used to pop everywhere in the Thruster, because it was just so quick and easy, manoeuvrable and could land pretty much anywhere.
I used to show off when landing at the local airbase, with my trademark extremely short 3-point landings, where I was told it looked like I skidded all the way in like I was about to crash, and then put it down like a feather. The trick was to bring it almost to a nose up airspeed stall just feet off the ground, then drop the nose to parallel, with a blip or two of throttle just before contact 🙂 Thats what I used to do when landing in places that didn't have an airstrip, and surrounded by trees or rocks.
I have flown a fair few times since, when I would catch up with my friend, and really enjoy it.
Thanks for the post - I really enjoyed reading!

Yes; everybody is different 🙂
That sounds like it was so much fun (holding a private pilot certificate)!
I thought about formalised training a few times when the opportunity arose, however I was known to the authorities as someone who flew planes in ways that weren't lawful, so I knew it wouldn't be as much fun with the law right there in my prop wash waiting for me to become officially fine-able 😉
If you like flying, you may enjoy motorcycling?

It's never too late to considered getting back into flying...

If you contact a nearby EAA chapter, folks there are always friendly and helpful.

One of the strangest use of a plane for spraying I ever saw was a B-25.

Our family was visiting my parents on their anniversary in Daytona Beach, Florida, staying on Sanibel Island.

It was early morning and suddenly, out of nowhere, three planes came roaring past at treetop level, all spraying, one a B-25. These old restored warbirds are worth a fortune, hard to imagine one being used to spray chemicals!

I don't know if you've ever heard of Gene Soucy, the youngest pilot to ever win the World Aerobatic Championship many years ago.

He performed aerobatics at airshows in a Pawnee (Ag Cat?). During one airshow in Glendale, Arizona I was briefly introduced to him by a pilot fiend. My friend's son knew Gene, they had gone through training together to qualify as control tower operators.

At that time Gene was preparing for an aerobatic routine at a Glendale fly-in, and was up on a ladder fueling a large bi-plane. I don't recall the plane, but I'd seen him fly it at other airshows... looked something like a Stearman.

Being that you mentioned flying authorities...

I was once cited for "buzzing," and was contacted by a Pennsylvania State Trooper... they investigate aviation incidents.

The trooper gave me the choice of meeting him at the police barracks, or he come meet me at my home.

I knew, through a friend, that he was also a pilot, and I was building an experimental plane (BD-4). So, I thought he might be interested in my project, and invited him to meet me at home.

He definitely was interested, and we spend a couple pleasant hours swapping airplane stories and drinking coffee.

As he was leaving he remarked "If you're gonna buzz someone, do what I do. Buzz them, and get the hell out of there. Don't make a second or third pass, drawing a crowd."

Good advice. I ended up being fined $60, but at least I wasn't temporarily grounded!