Our Collective Wisdom
|Seven Stages of CPAP and What Is Feeling Good? (Mike Moran and Perry) (How Long Until I Feel Better?)|
|The Seven Stages of CPAP © by Mike Moran. Used with permission.|
Posted to http://www.cpaptalk.com on Wed. Dec. 14, 2005
Since many are new to this therapy I thought I should put together some of the common threads of what we all go through for ourselves and our loved ones. This is also something you might share with your family or friends so they might gain an understanding of what you are dealing with.
1. Denial – This is something we are very good at because we have been practicing it for years. If asked if you snore most will deny it and maybe point their finger at their bed partner. It appears that the louder you snore, the louder your protests. It is embarrassing and no one wants to admit they have problems doing the simple task of sleeping. Images of the Three Stooges and the cartoon characterizations of snoring we grew up with don’t help us in facing a life limiting problem.
2. Realization – For some of us it is when our spouses tell us how scared they get at night when we stop breathing for periods of time. They have gotten used to our rumbling but are now are awakened by our silences and the thought we might not wake up. For others it’s the moments of drowsiness at our desks or even worse at the wheel of our car. Why are we so tired all the time, we know we got plenty of sleep? Whatever got us there, we finally realize something is wrong with us and ask our Doctor about it.
3. Diagnosis – If you get to this stage you should be grateful to have a Doctor that listens. Quite a few of us are battling other complication, such as obesity and diabetes, and diet is often considered before sleep habits. The cost of diagnosis associated with Obstructive Sleep Apnea (OSA), in this world of HMOs and increasing health care cost, is often the impetus to pursue other avenues of treatment. Fortunately, awareness is growing in the medical community. While not the cause, OSA is being viewed as a contributing factor to many other disorders.
Once you are referred to a specialist, you are then pre-screened to see if an investment should be made in the not so trivial expense of a Sleep Study. It finally hits you, as you step into the Sleep Lab, that you are not just dealing with the latest fad disorder. The procedures the staff employ and the equipment utilized tell you that major research dollars have been expended to address sleep disorders. Being wired for the monitors and the discomfort of trying to sleep in an unfamiliar environment also gives a glimpse that sleep will no longer be the simple act of closing your eyes. As you struggle for unconsciousness you have mixed hopes that nothing will be found or you will have the answer to why you have been living your life in a fog.
If you have a split study you get your answer in the middle of the night, when they come in and give you your first taste of Constant Positive Airway Pressure (CPAP). For others it’s a few days or weeks until they can sit down with their Doctor and go over the results. Yes you have been sleeping, but you are constantly waking up throughout the night without knowing it. There is relief in knowing what you have is very real and is treatable.
4. Frustration – The causes of this are varied and the reason this is called therapy instead of fun. It may start during the period between your study and actual diagnosis. Even though you have been avoiding taking any action for years it is hard to wait for answers once you started on the path for potential recovery. Then it might be the wait until you get your equipment and start treatment. Often feeling more tired than you have ever been, caused by the depression of knowing there is help but you don’t have access to it.
This in turn builds up some expectations that may not jive with reality. Therapy does produce drastic improvement for some immediately, for others improvement is gradual and the benefits are realized over time. We all want an instant cure but the effectiveness is a function of so many things. Ignoring the condition for years and difficulty adjusting to sleeping with a mask are just a couple of things that can play a significant part in our progress.
It is not easy to strap a mask to your face with air pumping up your nose while you are trying to sleep. You wake up during the night and the only difference between that and OSA is you are fully aware of the cause. Sleep is disturbed in either case. Then you have to take into account the necessary humidity of the air being delivered and condensation developing in the hose (Rain Out). Who can be blamed for asking if it worth the struggle?
Then there is the issue where healthcare meets business. Interfaces are developed to the greatest common denominator as the cost of customization is prohibitive. Durable Medical Equipment (DME) providers limit the potential selections to reduce the cost of extensive inventories. Insurances only reimburse for the minimal level of equipment that can provide the necessary therapy to limit their expenses. This all translates down to coping with the least comfortable therapy delivery or expending more out of your own pocket to get something you can live with the rest of your nights.
5. Immersion – Some people would call this obsession. There must be a better way to live with this disorder so we go in search of those answers. Contacting our Doctors, the DMEs and accessing the Internet for any possible scrap of information we can devour. Learning AHI isn’t blue fin tuna but the Apnea Hypopnea Index which is how many disruptive incidents you average per hour (anything over 5 is considered OSA with most of us clocking in 20 or above). Then finding out that these incidents not only disrupt beneficial rest but limit the oxygen our brains require to function.
When you hit this phase you discover the most important thing about our treatment. You are not alone and others are there to share their support and experience. They too are struggling just as you are and they have been gathering the same information you hunger for. All the various masks have been tested by real users. They have equipment set ups that work outside the labs. You discover shoulders to cry on, people to laugh with and the ability to vent with people who face the same struggles.
6. Ownership – After you are diagnosed and the equipment is delivered you are cut loose to deliver your own therapy. It is up to no one but yourself to see that you keep up treatment. There are no physical therapists guiding you every night. The Doctor may have bi-annual visits to see how you are doing but it all falls on your shoulders. Only you can make this work and realizing this you have the most important ingredient for success.
So you take advantage of the support and advice you have found. Pushing for the equipment that will help you cope with this therapy the best way you can. Doing some “Lab-Ratting”, trying all the various modifications others have found useful. You start employing rubber bands, panty hose and various household items to improve the seal of your interface. Finding simple things like attaching your hose to the wall with a hair band (Scrunchy) can allow you to turn over without breaking a seal. You invest in options like a heated humidifier or the Australian Heated Hose to combat Rain Out and consider upgrading to an automatically adjusting CPAP (APAP). Trying anything to make your nights tolerable.
7. Inflation – Maybe you only get a few hours of uninterrupted sleep, but then the periods become longer and longer. The morning fog begins to lift and your day starts the same way as those not suffering from a Sleep Disorder. Energy starts returning along with greater motivation for life. You still struggle, but now you are reaping the benefits you have been seeking.
Your family is sleeping better because their sleep is not disrupted by your snoring. They also get more of you because you have more to give. This isn’t even mentioning extending your life expectancy. The therapy finally transforms from something you can’t live with, to something you can’t live without.
Now I can’t say you won’t be running through some of stages over and over again. The final stage is one that you may find only intermittently. However, there is one thing that is perfectly evident. If you give up and get lost in your denial, or frustration, then the potential reward will be completely lost.
What is Feeling Good? © by Perry Holzman. Used with permission.
Posted to http://www.cpaptalk.com on Sat Dec 24, 2005 10:51 am
\"Walking Dead\" is where most of us start at. That is how a person with severe OSA problems feels before PAP. You seem to sleep very well - are always tired, cannot think hardly at all, and can barely function well enough to eat, bathe, do a basic job (with not a good performance), and usually come home to die in front of the TV and sleep (you can sleep at the drop of a hat). Life is no fun at all, and you can be extremely frustrated because you know that something is wrong and you used to be able to do better. Your personal relationships sink to all time lows. You are probably so far out of it that your \"other\" in life may seek others for intellectual level or intimate companionship so that they can have a life at all (The best time to tell your “other” that you love them or care for them is before someone else tells them – I suggest that you do so daily – starting right now: even if you are not in the “walking dead” zone).
\"Basic Treatment\" is the next step. In my case this happened first on CPAP, then on AutoCPAP that was set-up totally wrong for me. All the sudden you feel much better. You start to notice that there is more to life than you have been experiencing lately. You now find the energy to do things in the morning you really should have been doing all along like flossing teeth, or some house cleaning. But you still cannot think clearly like you used to, while your job and personal relationships improve a little, you still come home from work exhausted, and retire to the TV or recreational reading because you don\'t have the mental energy to do anything else.
It is amazing how well you feel compared to before - but you still don\'t have the energy that you remember (or that you see other people with). Naps are still needed if you are to function at all throughout the day. Often it takes a couple of months – but there comes a point where you know that you are not where you should be.
I will note that most sleep doctors are satisfied once a person progresses from Walking Dead to Basic Treatment. They consider you a success, and are not likely to provide much support past this point. My personal experience is that I was better off dealing with a family doctor to move beyond this point as I was dealing with other health issues.
\"Advanced Treatment\" may follow. Here your feel so tremendously great compared to before. Life starts to be good again; you can see that there is a future (especially in the morning when you get up). Your sleep seems to be under control, you have the opportunity to do things in your job and personal life that you could not even imagine before. Mentally you can start to think of several different things early in a day. But you still feel run down in the afternoon (this must be normal you figure) and look forward to bed each night.
\"Mental Zest\" is where you want to be, what happens when treatment is really working well for you. All the sudden your mind and life is free again. You typically wake up feeling great, can do multi-tasking of different mental task (which really helps your job and personal life), and have energy all day. Can stay up much of a night if needed - with energy and mental involvement - without major effects on the next day. You can see how to make life great once you solve those problems that accumulated when you weren’t feeling so well (and some of those problems can be major issues to solve). You finally realize that this is what normal life should be. You may recognize at this stage that this is how you felt when you were a teenager. As long as you have a positive attitude about yourself and life - you are ready again to take on the world…
It took me years to get to the Mental Zest stage. I would like to claim that I can stay there. Pollen season knocks me back to the Advanced Treatment, and excessive work hours can easily knock me back to the Basic Treatment Stage (simple exhaustion). Proper diet, nutrition, and exercise are also required to keep you at the Mental Zest stage.
May each of you have a safe and quick journey to “Mental Zest.”
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