It's been a long, wild ride of a year that I really wouldn't wish on my own worst enemy: When things are going badly, I feel as though I've largely lost one year of my life working hard on making this crazy therapy work. When things are going well, I feel as though I'm finally waking up from a Rip Van Winkle nap. And so, it's time to reflect on where I'm at now. A year ago, I was using the title, The Good, the Bad, and the Ugly for my updates. And I hought it would be appropriate to bring that title back for musings on my first anniversary on the machine.
The Good
When this crazy therapy actually works for me (now), it can be very, very good. On my best days, I physically feel much younger---as in the way I felt in my late 30's and early 40's some 10-15 years ago. I wake up with no hand and foot pain because I don't sleep with my hands and feet in fists anymore. The migraines are largely under control now too, due to the Deplin (the prescription vitamin I take that contains whopping large amounts of metaboliized folate) and the 400mg of B2 and 400mg of magnesium I take daily as recommended by the PA in the neurologist's office. And between the Deplin and the BiPAP, I even have days completely free of headaches---which is better than it was 10-15 years ago. (I've had chronic headaches of one sort or another almoste ever since I can remember, even as a child. They've never been severe, but they've always been there--as in 5 days out of every 7 on average.)
Also good is that the war with the insomnia monster is largely won---in spite of last week's set back. I'm still not sleepy long enough: It's a rare night that I actually get as much as 6 hours of sleep in about 6 1/2 hours in bed. But even so, I wake up feeling like I have slept and slept reasonably well most of the time. The number of wakes is still 2--4 on average, but the length of the wakes is seldom more than 5 minutes and until that last setback, the long restless periods of dozing and drifting in and out of sleep had largely disappeared. And the horrible case of the bedtime dreads that came with the insomnia has disappeared.
Also good is that I'm simply calmer and less hyper than I used to be---at least on my good days. On my best days, the little things don't annoy me as much as they used to. Perhaps it's the higher quality of sleep. Perhaps it's the Deplin. I don't really care why it's happened, I'm just grateful that it has. Along with this calmning down, I've noticed that I am far less sensitive to all the sensory overload that used to literally drive me up the wall: I'm finally becoming less aware of the irritating things about the machine. The air blowing into my nose no longer tickles the back of my throat. The hose no longer feels quite so much like a leash. I sleep more restfully which means that I don't tear up the covers as much and I don't disturb hubby as much.
I can now put off reassembling Kaa until bedtime without this being an issue. (When I first started out, the very act of getting everything ready and putting the mask on my nose woke me up as though it were a double shot of expresso.) And that in turn means I no longer feel as though I have to spend most of my evening simply preparing to go to bed each night. It's nice to have the evenings to do things with the family again.
Being on xPAP has forced me to get more serious about nasal hygiene. While the time involved is a bummer, I have to say that properly dealing with the congestion from my allergies so that I could tolerate Kaa has had the added benefit of introducting me to how it feels to breathe pretty much normaly during the growing season instead of sniffling my way through summer.
In summary, when things are going good in terms of my AHI (and the snoring), the insomnia, and the migraine/vertigo, I feel much better than I felt a year ago in terms of pain, tension, hyperness, and even mood. I feel good enough on these good days that I'm getting greedy: I want all of my days to be like the good ones.
The Bad
The severe and profound daytime sleepiness that I experienced during the Great Crash & Burn in Fall 2010 has lifted, but I still find myself yawning uncontrollably at my desk in the late afternoon and micronaps remain a disturbing problem for me. (And recall: I did NOT have any problems with daytime sleepiness before starting CPAP.)
My daytime energy levels are much better than they were during the Great Crash & Burn, but they are still not what they should be. I am still often more tired by the end of the day than I was pre-CPAP. And this is an odd thing: Pre-CPAP, I'd often start the day out in pain and feeling tired, but I didn't get much more tired as the day went on unless it was a really bad day. Now, I can start the day out feeling superb and even feeling like I've got a fair amount of energy, but by the middle of the afternoon, I get more tired that I used to feel pre-CPAP and I get extremely sleepy. While the sleepies will go away during the evening, the tiredness/fatigue does not. By the time we finish eating supper, I'm physically exhausted on many nights, but by that time I'm no longer sleepy.
Although the war on the insomnia has been largely won, the price of this victory has been great: In order to beat this insomnia monster I have had to:
- Give up caffiene entirely, which has been hard. Not so much in terms of caffiene withdrawal, but mainly in terms fo the social aspect of coffee drinking in my family (and extended family) and in terms of my beloved unsweetened iced tea as my beverage of choice whenever I eat out---including geting lunch on campus.
- Establish a more regular wake up time that I'd like. I've been backsliding a bit, but I know I can't afford too much backsliding. Sleeping in after 8:30am encourages me to not get sleepy until it's after 3:00am that night.
- Continue to hard on establishing a more regular bedtime that is early enough to get the sleep I probably need. Alas, this part of the war on insomnia is where the resistance by the insomnia monster is at his strongest. I still do not get sleepy enough to go to bed at an appropriate time on most nights. If I try to go to bed as early as 11:00 or 11:30, I seem to have many more wakes and restlessness. But if I stay up, I'll naturally become more alert around 12:00 or 12:30 and then it will be aroune 1:30 or 2:00 before I get sleepy again. All in all, I seem to feel better the next morning if I just stay up and go to bed at 1:30 or 2:00: Long periods of restlessness while I'm in bed seem to do a real negative number on me.
- Give more care and attention to how much I eat at supper and when I quit eating for the night. If I don't aerophagia will raise it's ugly head and interfer with my sleep
- Largely give up social drinking. Not as hard as the caffeine, since I've never been much of a drinker. But it is irritating to have to calculuate risk to my sleep every single time I'd like to have a beer or a glass of white wine with dinner or at a party.
- Pay even more attention to my overall sleep hygiene than I used to. And even before this adventure started, I had pretty much internalized all the major "good sleep hygiene" habits except for the rigid bedtime/wake up time routine.
And I still get the sensation of too much air getting into my mouth right after I turn Kaa on most nights. It's not as bad as the chipmunk cheeks from a year ago, but nonetheless, I have an extremely difficult time even saying good night to hubby once the mask is on.
So overall, my sleep remains somewhat fragile even after a year of CPAP.
The Ugly
I still feel isolated from my hubby when I'm in my own bed due to the mask. I've not yet mastered being able to say more than an emergency word or two with the mask on. I can yell "GET CAT OUT" without getting a stomach full of air, but not much else.
Our sex life has taken a major hit this year with all the stress and effort I've had to put into dealing with adjusting to xPAP, fighting the insomnia, dealing with the protracted struggle to get the migraines under control. My libido wasn't particularly strong before this adventure begain---certainly not like it was even 5 years or so ago. But these days, I just plain have no libido whatsoever. I know that xPAP is supposed to help, but it's killed what little sex drive I had. I think part of the problem is energy, but part of the problem is definitely that I simply do not feel sexy with the hose sitting there on the nighstand. And I always fall asleep hard right afterwards---so putting Kaa together after doing it just ain't going to work. And then there's also the problem that right now, hubby and I seldom go to bed together any more: He gets sleepy between 10:30 and 12:00, and I'm not ready to go to bed that early. We'll muddle through this somehow and hubby is very understanding. But I do feel very guilty about this issue.
I am still dealing with residual anger issues concerning the OSA, the original sleep doctor, the long and tangled patient/provider relationship with the PA in the first sleep doc's office, and my current worries bordering on mistrust of the new sleep doc. I became very much aware that I need to deal with this during the homily delivered by the priest at my church on Sept. 11. The readings for the Roman Catholic liturgy that day just happened to focus on forgiveness. And Father Jack decided to focus his homily on both what it really means to forgive those who injured us in some way as well as why it is necessary for our own well-being to learn to forgive them. It got me to thinking about how much anger I still have over the ways in which I've been treated by the docs and PAs this past year. And it's clear that I need to let go of that anger through forgiveness before it completely consumes me. And that forgiveness does not equal forgeting or excusing the way I was treated or acting as though it was all "ok". But that forgiveness will be a key to letting me move forward with my life.
