I have sleep apnea and use a full face mask. I am learning what it means to have sleep apnea and the dangers of being misdiagnosed or undiagnosed. I understand the health issues that can and often do go along with sleep apnea. I believe that I need to educate myself as much as possible because I am the only one who truly has control of my health.
I also have Restless Leg Syndrome and fibromyalgia. Maybe it's just me but people don't seem as ready to talk about having sleep apnea. I can start a conversation with someone who has Restless Leg Syndrome and we will compare symptoms, medications, treatments, and horror stories and leave each other feeling less alone. Talking with someone who also suffers with fibromyalgia might include foretelling weather changes, massage therapy, current medications available or pros and cons of exercise. I might even learn something new to try or pass on what works for me.
Again, maybe its just me. I see someone at the airport with a CPAP bag or see someone looking at mine but we don't connect. Recently someone told me they knew I used a CPAP machine because of the lines on my face from the straps. That did not lead to an informative talk about sleep apnea. Instead, I was slightly embarrassed. I don't know why--maybe it's just me.
All three of these diseases can affect sleep time with partners and there are all sorts of ways people deal with sleeping together when one partner has issues. Many supportive partners understand when the medications don't work or the massage therapy wasn't enough to calm the legs or provide pain relief. I hear of many people who don't get that kind of support with sleep apnea. Often, partners think that a CPAP machine should fix the problem.
Maybe it's just me but issues with mask fit or leaks, wrong pressures, nose sores, strap lines and dry mouth aren't taken seriously. It is assumed that everything should be just fine now that I have a machine that helps with sleep apnea. Maybe it's just me because I don't explain more to my spouse. There are great on-line support groups where people understand what I am going through. That isn't the same as having a face-to-face conversation with someone. Even then, the conversation is just not the same as the ones I have about Restless Leg Syndrome or fibromyalgia. I feel like I have only traded information with a stranger instead of finding a fellow sufferer.
There may be different stories to tell. I would like to hear from others as perhaps their interaction with fellow sufferers has been stronger and more meaningful. That would be great because like I said, maybe it's just me.