Wednesday, July 26, 2017

To Sleep Perchance To Dream

My apologies to the bard....

Sleep is very VERY important.  Even more so when you have CFS/ME.  We sleep badly.  We sleep badly for all sorts of reasons.  I sorted out my sleep meds a long time ago.  I take 25mg of trazadone (to stay asleep), magnesium taurate (to initiate sleep) and MSM (for pain) before bed. This past year I've been wrestling with my new CPAP machine and more recently the move to the new house where I had to throw out all my bedding and buy new.  Hence the continued search for the perfect pillow.

First CPAP
When I first got sick, I was on a CPAP machine for the first time.  My dental appliance wasn't cutting it for my snoring and fits of lack of breathing anymore.  I'm from a long line of champion snorers and apparently my tongue is too big for my mouth.  Between all of that and my weight voila! Sleep apnea!  Well I hated that thing with a passion.  Of course when my insurance got all out of whack due to switching from my company policy to Medicare I had to return the machine and I reverted back to my beloved dental appliance.  By that point I had lost weight due to my illness so it sufficed for many years.

Well, I've gained back the weight I lost and added on quite a lot of extra pounds.  No exercise makes me fat(ter).  It all finally caught up with me last year and I ended up at the Brigham and Women's sleep lab.  It was the only one where I could arrange for a sleep study during the day.  No point in sending me to the local hospital lab.  All they would end up doing is watching me watch TV all night.  So after a huge nightmare ordeal with the doc's incompetent office staff, I ended up seeing the nicest sleep doc I've had yet.  And I'm back on a CPAP machine.  The new ones are better.  They start at a low pressure and ramp up slowly until you keep breathing while asleep.  There are way more mask options than 7 years ago and after the first one was a spectacular failure I got fitted with one that goes over both my mouth and nose.  These don't bother me much because I've had to wear facemasks in the lab for work on and off for years.   So I've settled in and made peace with the machine.  I no longer wake up with headaches from oxygen deprivation or a spectacularly sore throat from snoring hard all night.  I have to do have to play the radio to drown out the air flow and air pump or my breathing won't settle into a natural rhythm.  This is okay most nights but if I'm flaring badly and can't stand noise sometimes I skip a night with it.  I sleep so terrible that I actually look forward to using the machine the next night.

I just had a vid chat with my doc today and I'm doing great on the machine.  He lowered the pressure for me so it is much more comfortable to wear.  I'm using it almost every single night for an average of 4.5hrs per night with my longest stint at 7hrs!  I only stop breathing about once per night which is better than a normal person without true apnea!  Woohoo!

I have done a couple of things to make the mask more comfy.  I now use a fabric liner from Remzz's.  I've also removed the rubber/silicon standoff that rests on my forehead and replaced it with a folded up tissue.  I found the mask doesn't adjust down close enough to my face when the rubber standoff is present.

I did come down with shingles around my eye for about a month and had to switch to nasal pillows after sleeping for a week without the CPAP at all.  I couldn't tolerate anything touching my face as it felt like a severe sunburn.  I couldn't wear the pillows for more than two hours without the inside of my nose hurting severely.  Nothing I did would stop this pain from happening so I just tolerated it until I got to switch back to my face mask.

Anyway, I'm happily back to using my regular mask.

The Bed
Ah now this still hasn't been solved.  We moved.  I have a waterbed.  It leaked at one point and I'm highly allergic to mold.  I bought all new plastic bits including bladders, liner and cover.  I also bought a new foam pad and the cotton cover that makes it look like a normal bed.  Now this is a king size bed which means it is slightly longer than wide but you can't tell by looking at it.  After we moved, hubs set up the base, then put the foam box on the bed, put the liner in, then the bladders.  The bladders get filled with water, one for each side of the bed so we can adjust each side for our preference.  Then the foam topper goes on for thermal isolation and finally the cover gets zipped into place.  Well we get to the zipper part and the foam doesn't fit properly.  It is my strong belief that hubs had put the foam box on the base the wrong way round.  It was now too short by several inches and too wide by several inches.  But he wasn't to be defeated and forced the foam and the zipper to work.  So now the bed has high points at the head and foot of the bed. Problem #1

Oh I still have a slight case of MCS and can't tolerate odors.  Particularly chemical odors.  The bed now stinks.  You know that smell of a cheap new shower curtain.  Yeah, like that but from the bed I'm supposed to sleep in and I sleep face down.  STINK!  Oh so stinky!  So I end up in the guest room on the brand new bed I bought for my kid because even though that is a brand new gel topped mattress it doesn't stink.  And I had the forethought to purchase an adjustable base so I can put the head and feet exactly the way I want them.  Problem #2

We don't own any curtains.  The windows are a weird shape; very wide but short.  The old shades don't go with the new paint scheme and hubs doesn't want to wrestle with the old hanging system.  So both bedrooms have tons of light streaming into them during the day.  And because of the positioning of the house it only gets worse as the day goes on.  The guest room does still have the old slat blinds mounted in the window so I can reduce the amount of light in that room but it still isn't even close to being dark.  Problem #3

The second floor of the new house has almost no air circulation.  Even when I open the windows not much air flow happens.  When it is sunny out the bedroom turns into an oven easily topping 80F even with the AC on.  Turns out that the central AC system for the house is a single zone and underpowered for the size of the house.  So while it might be a comfy 75 downstairs the masterbed is 85.  I prefer sleeping in 65-70 range.  Yeah I kept waking up in a pool of sweat hugely uncomfortable and generally pissed off.  I would trudge down the hall to finish sleeping in the slightly cooler guest bedroom with a fan blasting at me.  Problem#4

Back to the Bed Again
Turns out the bladder is too full which means I end up with all sorts of body pain when trying to sleep on it.  Even now that it doesn't' stink anymore I get woken up with limb, joint or back pain.  I had to throw out all my old pillows.  I had it setup just right before the move.  The bed was really soft and my upper half was cushioned in pillows that didn't make me sweat.  Taking water out of the bladder while a pain in a butt is fairly easily fixable.  About a half hour's worth of work for hubs.

But the pillow problem oy vey!!  The amount of money I've spent on various pillows is in the hundreds of dollars at this point.  My son now has three different pillows to choose from that I've rejected for one reason or another.  I've bought organic wool, cotton, kapok and latex.  Turns out I'm mildly allergic to kapok.  Latex just plain old stinks and is very very hot.  Wool and cotton pack down which makes them too hard for me to sleep on top of like I was doing in my old house.  So I went to Walmart and bought some cheap ass pillows that didn't smell.  Well, they turn out to be insanely hot.  And the weird synthetic fabric covers on them catch on me when I try to move.  This wakes me up as I end up in a wrestling match with the stupid pillows and I'm all sweaty too boot.  They now reside inside my closet.  They will be the ones that end up inside the decorative shams when I get that far with the bedroom; i.e. they'll get tossed on the floor every night.

I finally bought a bamboo covered temperpedic foam core 7" wedge for my torso.  It is soft enough and very comfy to lie on top of but I'm back to the stink problem.  It is outgassing.  Each day it is less stinky but in the meantime I'm back to trying to sleep on my uncomfortable bed.

I also got a weird foam CPAP pillow that has scooped out corners so it doesn't jam into the mask.  I still end up with dents on my face in the morning but it is much more supportive and comfortable than trying to faceplant in a regular pillow with a hard plastic mask on your face.

In the End
I'm still wrestling with sleeping in the masterbed.  The bladder in the waterbed is still a tad too full so hubs is going to have to play with it some more.

I bought blackout curtains for the windows but the room feels weird and icky with them up.  Not sure how to fix that.  They were just cheapo curtains for a temporary fix.  I couldn't keep sleeping with the sun streaming in the room.

I found that if I had the central AC fan run continuously the upstairs cooled off better than if I let it cycle via the thermostat downstairs.  I bought a portable AC unit just for the materbed.  Hubs is rigging it for the window casing so it isn't up and running yet but should be in the next few days.  This is a temporary measure until we fix the central AC.  We have to put a second unit in the attic for cooling the second floor so it will have its own zone.  But that isn't going to happen for a few years yet.  We have more pressing things to fix/spend money on.   I also bought a fan just for the guest bed since that room is going to continue to be too hot.

The wedge pillow will work out once it finishes degassing and my CPAP pillow is fantastic.  I still don't have a body pillow that I like and keep ending up with the smaller wool pillow tucked up against me.

Now the other weird ass problem I can't fix easily has to do with the orientation of the bed itself.  Both of us have noticed this before in other places, hotels, our old house, etc.  We sleep better/worse depending which way the bed is facing.  It makes no sense to us but is a real phenomena.  Well it turns out I don't sleep well in the masterbed in its present orientation.  I sleep WAY better in the guest bed which is 90 degrees different from the masterbed.  I've found that when I wake up at the midpoint in my sleep cycle if I climb back in bed across the bed instead of the correct way I sleep much more deeply.  Because this is a water bed and because of the doors/windows/ AC vents it can't be moved easily.  We are basically stuck with this orientation for the foreseeable future.  So I guess I'm stuck sleeping across it rather than along it.  The problem this creates is wearing the CPAP mask.  I'm tethered to the machine and the way I like to lie in the bed will limit me to sleeping on my left side only when the mask is on.  I have yet to find out how feasible this is since I'm currently only sleeping sideways after I take the mask off.

I still have my various weight blankets but need a sheet.  I have some pajamas that still fit but a very limited assortment.  I vary what I wear and which blankets I use based on the room temp.  I need some more pjs of different weights.  I want to sew them up myself but the sewing room is currently a storage room and hasn't been unpacked never mind setup.  I guess I'm stuck buying from a catalog right now.

In Conclusion
Things are coming along.  I have pillows, curtains and my CPAP machine.  The AC is in the works and the bed needs less water.  The bed doesn't stink anymore.  I need to buy more pjs and a sheet or two.  Maybe I'll get a wool mattress cover and a wool body pillow but I need to save up for those as they are quite expensive.  I think I'll end up with lighter colored curtains eventually with a blackout shade underneath.  That way the room doesn't feel so gloomy.  I still have work to do but after living here for five months I had had enough and decided to start fixing things even if they were temporary fixes.  I need to be able to sleep well.  While I like the guestroom more, my son is home more often right now since he lost his apt in NYC (that is another long story) so I need to setup the masterbed properly.  I'm getting there.  It has taken lots of trial and error and quite a bit of money.  I'm not looking forward to my credit card bill next month but, hey, it is getting better.

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