Mike Moran and Perry © 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.