The Good, the Bad, and the Ugly---one year later

[Ineedanap]

it has been so long since I've felt frisky. And that's a significant part of my problem

I would be willing to bet this is unrelated to OSA. Its much more likely to be either a side effect of one of you medications or a hormonal imbalance. See your GP and if they cant help, see your GYN. Another struggle worth having.

[rocklin]

.

Sage:

"This is why the ancient Taoists and other sages throughout history have recommended making love without conventional orgasm.

By avoiding the extreme highs that over-stimulate the nerve cells in the primitive brain, you also avoid the temporary lows that accompany recovery.

You keep your dopamine levels within ideal ranges.

This produces a sense of well-being, which promotes harmony in your relationship."

- Pulling Away (After Sex), Marnia Robinson


_________________________________________________________________________________________________


Psycho:

........General Jack D. Ripper

I can assure you it has not recurred, Mandrake.

Women uh . . . women sense my power and they seek the life essence.

I, uh . . . I do not avoid women, Mandrake.

But I . . . I do deny them my essence.


_________________________________________________________________________________________________


Frankie Goes to Hollywood:

Relax don't do it
When you want to go to it
Relax don't do it
When you want to come
Relax don't do it
When you want to come
When you want to come





.

[Pugsy]

I didn't have much of a sex drive in the last couple of year's prior to the diagnosis---likely an unrecognized symptom of OSA---but I've got no sex drive at all now---as in none, nada, zilch. Is it mental? Perhaps, maybe even "Most likely". But even so, I feel nothing much physically---even when I do the deed with hubby.

Pre-CPAP I'd regularly have sexy dreams---and waking up after a sexy dream is indeed a good time to do the deed .

I was told that my libido would return with effective cpap treatment...Not. Another expectation that fell short.
I haven't had a sexy dream in so long I don't know if I would recognize one.

Part of my issue is the Ultram I take for pain. It simply kills the libido and dulls some very important sensations to the point it becomes more work and less play. If I don't take it then the pain for sure kills the desire.

Then menopause hit.. We all know that I have not had the "miracle" despite good numbers. I think I miss the promised return of my libido more than anything else. But then what is "normal" for a 59 year old woman these days.
Sure wish they had a little blue pill for women. That would be one I would happily take.

[robysue]

Folks,

I'm in awe at the response this thread has created.

Obviously both forgiveness and sex (or the lack thereof) have captured some folks' attention and imagination.

Re: Forgiveness. There's some healthy debate and disagreement between posters. Every time I login and check this thread I re-read things in case I missed something. I tend to agree with different sets of folks on different days. But I am working on my own notion of forgiveness on my own timescale. And it has helped to be able to vent and rant and rave when I need to here.

Re: Sex (or the lack thereof). I've enjoyed folks responses. I really have. I'm deeply touched by the concern that's apparent in all the posts---the humorous ones and the serious ones.

Re: Rocklin's last post: There's too much of the sage and not enough of the dame in the picture in me right now. I need to find that hidden dame that lies within me ...

Re: Pugsy's last post: I'm with you on the wishing they'd work on developing a female version of that little blue pill ...

Re: Ineedanap's last post: Don't think the problem is with med side effects since I'm not taking anything but vitamins, Deplin (a super-duper version of a folate supplement), Zyrtec (OTC antihistamine), and Flonase. Could be hormonal though: The hot flashes have kicked back up a notch this summer and they have (finally) lost their novelty.

Re: Deltadave and several other's posts: The common theme being lighten up and loosen up and some about the whole issue. And then just do it. You're right. I need to.

[rocklin]

Re: Rocklin's last post: There's too much of the sage and not enough of the dame in the picture in me right now.

The dame in the picture is the actress Kate Winslett (of Titanic fame).

Look at both the man's and the woman's expressions. Do they look happy? Full of joy and in the moment?

Or like they just read and tried the questionable advice of a New Age book?


________________________________________________________________________



Orgasms are fully Signal Compliant.

If "nature" (Darwinian pressure) wanted us to withhold orgasms, she would've made that "withholding" more pleasurable than experiencing them.

Just a thought: you really need to improve your orgasms to the point where they are earth-shattering, and all thoughts of the "benefits" of skipping them permanently expunged in the mad snowstorm of endorphins, plus a thousand other benefits "science" will undoubted discover in the near and distant future.

Guess I'm saying: fu*k the living daylights out each other. Gentle sex has it's place, no doubt, but it'll never replace utterly uninhibited, mad, signal complaint sex.

Got hundreds of millions of years of evidence to back me up on this one, but like I said, it's just a thought . . .

...

[jnk]

Another 2 cents:

. . . yawning uncontrollably at my desk in the late afternoon . . . tired by the end of the day . . . 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. . . .

Anyone working at a desk who doesn't go through a sleepy period in the mid-to-late afternoon is atypical, I would say. We tend to notice differences in our sleepiness throughout the day more than overall state. You may be unfamiliar with the natural pattern of ebb and flow of sleepiness because of earlier troubles with overall constant sleepiness or tiredness. Now you have something to measure your state against through the day, and the variation is an indication of surges of wakefulness you rarely experienced before. Just a thought. And I may be very wrong. I often am.

And as for . . .

. . . sex life . . .

. . . I would tend to point to the following rather than PAP therapy itself:

. . . all the stress . . . the protracted struggle . . . do not feel sexy with the hose sitting there . . . not ready to go to bed that early. . . . feel very guilty . . . residual anger issues . . . current worries . . .

My only observation beyond that is that it is often when both parties of a marriage are primarily consumed with meeting the other party's needs that the fireworks tend to ignite. Don't let the hose make everything in the bedroom about you alone in a way that excludes the other human being in the room. That can happen if we let it. There are only two of you there, not three. The machine doesn't count, even if we tend to name it or personalize it in some ways.

In regards to your statement 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.

. . . I happen to agree with that concept.

It is possible to choose to let go of resentment without having to choose to excuse the behavior, in my opinion. You choose to "forget" by choosing not to dwell on it; that does not require that you attempt to literally be unable to recall it. The English words "forgive" and "forget" have many different meanings that are easy to confuse in any discussion about them. In a sense, we must be able to forgive (in the sense of letting go of resentment) without having to forgive (in the sense of excusing the behavior) and to be able to forget (in the sense of choosing not to dwell on it) without having to forget (in the sense of 'being unable to recall that it happened').

The concepts are clear; it is the language used to discuss those concepts that makes it confusing at times.

It sounds to me like you are making real progress.

I, too, was encouraged by your post.

[M.D.Hosehead]

I've followed this thread for nearly 2 weeks and finally decided to risk dipping my oar on the subject of "forgiveness. (The risk is that I may not be perceived as supportive, though I am surely trying to be. I respect RobySue's suffering, struggle, candor, and her reaching out to help others.)

If someone sincerely apologizes after an injury or offense, it's easy to forgive. You don't have to work at it. But where there's no apology or even acknowledgement, it seems to me something other than forgiveness is required in order to let go of anger and be at peace, namely, acceptance. I mean, accepting that:

Humans are fallible, and this condition is universal and permanent.

People can hurt others without realizing it, therefore, no acknowledgement follows. However, even when a person realizes they hurt someone, they don't always apologize.

Also, some people don't care care whether they hurt another.

There even are a few people who enjoy inflicting suffering.

As a result, and all told, there's no way to get through this life without suffering from others' mistakes. Nor, fallible as I am, will I get through this life without mistakenly hurting others. Hurting and being hurt are inescapably part of the human condition.

Honestly, I admit I haven't always apologized, And if I'm painfully honest, I haven't always cared about what happens to someone else. Imperfectability is also part of the human condition.

Looking at the big picture RS's injury could have been much worse. Some people lose their lives due to others' mistakes. RS is still alive, sentient, fighting to get better, working, and still able to get pleasure out of life.

Above all, RS can still be cuddled and comforted by someone who loves her. That's the best balm for life's knocks, no matter one's age.

[chunkyfrog]

I like to look at forgiveness this way:
What people do is what they do; usually they can't help it, it's just the way they are.
It doesn't help to harbor anger or resentment (living rent-free inside my head)
I just don't give them the chance to do it to me again.
If I turn my other cheek, and they smite me again; then I am obliged to knock out some teeth.
Not even worth the effort--(nobody ever learns anything).

[robysue]

I continue to be amazed at the number of thoughtful, kind responses on this thread.

And in reading about what "forgiveness" means to various folks who seem to disagree on the surface, I've come to one main conclusion: Regardless of what you choose to call it and regardless of how you get there, the need to let go of the anger and resentment before it consumes you is important. What you chose to call this process of letting go of the anger/resentment is not really all that important. And the actual steps used to achieve the goal of letting go of the anger/resentment are only important in the sense that they work for you, the individual, in accomplishing that goal. And what Person A has to do is not necessarily an appropriate strategy for Person B.

For me, letting go of the anger and resentment is the heart and soul of what I personally regard as "forgiveness." And it's not an easy process for me. I'm usually not one to bear a grudge: But when I start feeling that on multiple occasions a given person (or system) treats me with a serious lack of respect, discards my concerns and questions as either immaterial or unimportant, and refuses to actually listen to what I have to say, well, let's just say that a certain "righteous" anger common in my Southern heritage sets in and fertilizes the nascent grudge the way high quality compost feeds a garden. And working my way through the anger/resentment to get beyond it and let go of it before it consumes me does take time and conscious effort on my part.

And unfortunately for me, yesterday's meeting with the second sleep doctor did not go well and has added fuel to the smoldering anger issues and inflamed them once again. The meeting ended with what can accurately be described as a mutual firing: She made it clear I was no longer welcome as a patient to my husband after I walked out of the office in anger telling her to talk to my hubby, who was with me. I walked out because I no longer wanted to deal with her as a doctor because I felt like she was refusing to hear what I was saying. The full story is more appropriate as an update to my thread, Funky data--visit from Richard Nixon's ghost or aliens?. And I may post it there in a day or two after I can be more rational about a very upsetting meeting.

In the meantime, I plan to do what I've been doing for the past year: Doing what I can to make this therapy work. In getting ready for that disastrous meeting I did go back through data I've been collecting on both the Insomnia and the proverbial "How Do I Feel?" each day---based on a spreadsheet I designed for myself after suggestions by SleepingUgly and NotMuffy way back in April in the thread robysue's summary graphs. And that data confirms what I've been feeling: There's been some real progress in spite of the recent setbacks with the return of autumn.

The insomnia data didn't really show any great surprises: I tallied up the data on bedtime and total sleep time for August and September so that I could share it with the doc. On a majority of days I got to bed between 1:30 and 2:30, with about the same number of days with bedtime between 1:00 and 1:30 as there are with bedtime between 2:30 and 3:30. There are a few nights where I managed to go to bed before 12:30; and a few more nights where bedtime was later than 3:30. Time asleep remains between 4.5 and 6.0 hours per night on the vast majority of nights. I still wake up most nights 1--3 times, but for the most part these wakes do NOT disturb me any more. Restlessness after one of these wakes does, however. Fortunately the number of nights where I have a real restless period is pretty low---as in four or five for the whole two month period of data. Unfortunately there is a high correlation between nights with Restlessness and nights with Bedtime before 1:00 AM. As often as not I describe how I feel when I first wake up as rested, almost refreshed, somewhat rested and refreshed, pain-free, feeling decent and so on---as long as there was no restless periods. So for now, it's still easier to simply stay up late and continue functioning on less sleep than I'd like to have. But overall, this data is not bad at all. I do wish that I was able to more consistently get that bedtime back to 1:00 or 1:30 so that I'd be able to get up by 7:00 on a regular basis. Right now, I'm managing to get up by 7:30 on a few days, but wake up time is really more like 8:00 or 8:30 on a typical day. But with a 10:00 class, not getting up until 8:00 or 8:30 makes the mornings a bit more difficult than they should be. Still, all in all, the insomnia feels under control and the data tends to back that up.

For the "How Do I Feel?" data, the main summary number is simply a 0-5 rating of the day as a whole where 0 equals Absolutely Wretched and 5 equals Top of the World. The middle of the scale (2.5 to 3) represents about how I felt on a typical day pre-CPAP. I also tallied up these ratings for August and September to show the doc: Roughly half the days have a rating of 4 (with a couple of 4.5's), with no scores below 2. And that many 4's was a pleasant surprise because the last week been so-so with only one 4, a bunch of 2.5's and 3's and one 2 all because of a head cold, TMJ issues, and the "no chew diet" getting very, very old. In other words, in spite of this last rough week, I can prove to myself that the BiPAP is doing me some measurable good (in terms of how I feel) about 50% of the time. And on those good days (with a score of 4), I can honestly say that I feel measurably better than I did before starting CPAP, sometimes it's substantially better. And I feel good enough on those days where I want more of them. And I believe that eventually the percentage of these good days will grow to a nice overwhelming majority of days---as in feeling much better than I felt pre-CPAP almost every day instead of only half the days---if I can ever manage to get that bedtime moved back just a bit and start getting 6 to 7 hours of sleep every night instead of 4.5--6 I'm getting now. But all in all, this represents real progress folks. And I'm very pleased with myself for accomplishing it.

[drdrew]

robysue, i don't know when you posted this, but i am just reading it now. just wanted to respond that your initial post really touched me. you expressed a lot of things that i have been going through to perfection. not all of it is equal to my experience, but the parts that are certainly have hit home with me. so thank you, you have helped someone today.

i am at about 8 months cpap now. i remember the first few weeks i was so embarrassed i had to almost pull the covers completely up over my head before my wife came in the room. i still get that way sometimes and dont really like the thought of her seeing me with all the gear on. i think it feeds into my overall anxiety about using the equipment. if i get a new mask i have to "test" it out alone in the room with no one watching....i know...i'm weird. at any rate i cant express myself as eloquently as you have. but night dreads, insomnia, i have battled as well.

last night i had my best night ever. 0 awakenings. ahi of 0.9. 7.5 hrs continuous treatment. maybe its because the previous three nights were essentially sleepless and i was that exhausted....lol...anyway i feel good today, i am hoping to know what its like to have 3-4 "good" nights in a row.

thank you again, i'm not sure why but your post was validating, and uplifting for me.

[JohnBFisher]

... thank you again, i'm not sure why but your post was validating, and uplifting for me. ...

We would all do well to take a lesson from RobySue and be as open and thoughtful as she is.

One thing she does very well is help each of us understand that we are not alone. And we can and should help one another along our various Journeys. Mine might be different than yours. But if we try, we can find those things that unite us in common bonds. And surprisingly, by helping others we often turn around and note that our own burdens are not as difficult as we had previously imagined.

Yes. Thank you to RobySue and to everyone who takes a moment to help another along their Journey.

[echo]

hi robysue, i haven't been on the forum in quite some time so i haven't followed your entire story (though i did remember your title line from last year!). Sorry to hear that you've been having troubles. I just wanted to throw out 2 ideas there regarding the energy and the sleep time issues:

Have you had your thyroid levels checked? And while they check them, you shuld double check. Recent recommendations indicate that their cutoff values for TSH are actually too high, leaving lots of people undiagnosed. I can send you refs if you want.

Have you always had problems with getting to bed "at a socially acceptable hour"? Have you heard of Delayed Sleep Phase Syndrome (or is it now called Disorder?)? Best treatment is blue light in the morning, melatonin may or may not work. Also, avoidance of bright/computer/tv lights at night is best (or use blue-light blocking glasses). I've got tons of info on this as well, if you're interested. (so does google

Good luck!

[BlackSpinner]

Forgiveness is a concept I have had problems with in the past until I took some shiatsu course and the teacher talked about energy connections and how forgiveness lets us cut those energy leaks.

So I see forgiveness as cutting those ties that bind me to the A$$h0les. When I am regurgitating in circles about something someone has done to me in the past, I reach into my jewelry box and put on my earrings made of little golden scissors. Then every time I look into the mirror I am reminded to "Cut the ties", plug up the leaks, move onward.

[idamtnboy]

But when I start feeling that on multiple occasions a given person (or system) treats me with a serious lack of respect, discards my concerns and questions as either immaterial or unimportant, and refuses to actually listen to what I have to say, well, let's just say that a certain "righteous" anger common in my Southern heritage sets in and fertilizes the nascent grudge the way high quality compost feeds a garden. And working my way through the anger/resentment to get beyond it and let go of it before it consumes me does take time and conscious effort on my part.

Allow me to share an enlightening moment I had many years ago. Whether it has any relevance for you, only you can know.

I had been out of college for about seven years when I went to work for an Idaho fertilizer factory. I was assigned to office space in a mobile home, not mobile office, that was parked on the plant site and being used for offices. The carpet had been removed but the pad was left on the floor. The entire trailer was filthy with dust and dirt, with dirt piled up to two inches deep on the window sills. I was pissed. Here I was, a graduate engineer, hired largely because I had recently gotten a Professional Engineer license in Pennsylvania, and was given a truly dirty office space to work in. Added to that my boss was too cheap to pay for me to get my PE license in Idaho. I was feeling sorry for myself thinking about how every boss since college had not given me the respect and consideration I, a university graduate engineer, deserved. This was my fifth job in seven years.

Then, it dawned on me. I had complained about every job I had had since college. Maybe, just maybe, there was something wrong with me, not everyone else. About that time I learned of the Dale Carnegie course on public speaking and how to win friends and influence people. The company paid the tuition and I took the course. It was eye opening. I learned that the success of every human relationship I would ever have would depend almost entirely on my approach and attitude. How I relate to people using kindness and consideration would trump every other aspect of the education, training, expertise, and personalities of either of us. Every doctor I have enjoyed dealing with has related to me well. Everyone I recall with distaste did not relate well with me. I have absolutely no idea how good or how poor their medical expertise really is, how well they did in med school, or what their colleagues think of them. As for the ones I don't care for I have to ask, was it me, or was it them, who didn't make an adequate effort to be kind and considerate?

Since that time with the Dale Carnegie training I have made a real effort to live by the credo that, "If a wall is going to be built between you and me, you will have to do the building." Sometimes that means I have to take some degree of inconsideration and maltreatment from the other person, but I know I have done my loving best to be a decent person to deal with.

God bless, and I hope and pray you will find resolution to the issues you are dealing with.